(Editor’s Note: Jane’s birthday was on November 17. I have debated since then how broad an audience to send this to–or whether to post it at all. If you are uncomfortable reading about death and mourning, you may want to turn away now and read no further. But if you are a caregiver, what is here may matter to you. If you are a patient, it may help you understand what your partner faces now–and may face later.)
Road trip
Jane would have been 61 today. She would have awakened to cards and flowers and gifts and a poem and breakfast in bed. Later, we would have driven to southern NH to look for Christmas presents and browse the shops. We’d have had lunch in a restaurant we stopped at whenever we were there, then travelled home for a quiet night snuggled on the couch.
If the heart is healed, can the soul be far behind?
Instead, I went to the cemetery where her body is buried this morning. I left some mums there and a card and some tears. I was angry when I left—and sad.
Clearing spaces
Five years is a long time to be in mourning. Five years is no time at all to be in mourning. I’ve lived alone a long time, slept alone a long time, cooked and eaten meals alone a long time.
I was angry when I left—and sad.
This weekend, I started cleaning out the basement. It is where I have stored the things I am not ready to part with. Yesterday, I took the collages of our life together off the walls in the living room and moved them into the guest room. In a few days, I will unpack the suitcase she took with her to the hospital five years ago. It is filled with the clothes she never wore and the clothes she was wearing the day we checked her in for her heart surgery.
A new heart
I don’t know why it is suddenly time to do those things—just that it is.
I’ve lived alone a long time…
Five years ago, we celebrated her birth–and rebirth–in a hospital room in cardiac intensive care. She told the doctors and nurses she had gotten a new heart for her birthday, even though what she really had were two new mechanical valves in the right side of her heart. The plan was for her to move to the step-down unit the next day. She was happier and more upbeat than I had seen her in months.
A different road trip
I should have known…
…we celebrated her birth–and rebirth…
That night, she had her first carcinoid crisis. Her blood oxygen levels fell into the mid 80s, her blood pressure dropped. The doctors and nurses decided she needed a CT scan. But the scanner in the building had closed for the night. The closest one was in a nearby building on the eighth floor. Jane declared she was ready for a road trip—and off they went.
Raised hopes
The scan was inconclusive. Her oxygen numbers came up once she was back on oxygen. Her blood pressure stabilized. I stayed up with her all night and all day the next day. She was weaker than she had been, but she seemed to have turned the corner.
…she had her first carcinoid crisis.
I went back to the hotel and slept for six hours, checked out and moved my car to the hospital. I expected to drive home that night.
Dashed hopes
I did not sleep at home again until after Jane died three weeks later. I barely left her side.
The scan was inconclusive.
Five years later, my heart still bleeds. I get up every morning, I make the bed, eat, do all the necessary things from showering and shopping to reading and writing. Sometimes, as I work on this or that project I can almost forget that Jane no longer breathes, almost forget she is not simply out with her sister.
Small joys–and constant reminders
Then I look up and know she is not there—that her body rests three miles away beneath her family headstone. And then the silence closes in and it is as if she died just moments ago.
I barely left her side.
I debate moving periodically in the hope that some new place will not be so haunting. And then I remember my trips to Seattle since her death, I remember the nights I’ve spent in hotel rooms on one trip or another, I remember being at parties or dinners where the silence comes rolling in—and I know that where I live will not change this grief–that to leave here will only cut me off from the small joys of our life together here—only deepen my grief.
An evolving heart
I remember a friend who lost her father when we were still in junior high school. I remember visiting her home perhaps four years after his death. There may have been some pictures of her father in her mother’s bedroom—or in her own. There were no pictures in the public sections of the house. They did not surround themselves with memories. The house evolved.
…I remember…
Perhaps that is what I am doing this week. Perhaps I am evolving toward some final acceptance that Jane is gone and that my life needs to be about more than her absence—and about something more than the cancer that killed her.
Touching hearts, mending souls
Not that I have not done things other than deal with her death and her cancer over the last five years. But whether working in the garden, reading a novel or a biography, listening to music, or going out to dinner, a play, or just for a cup of coffee with friends, those things are never far from my thoughts.
The house evolved.
Nor will I give up the work against her cancer—I know too many people who have become friends who have NET cancer to walk away from that fight in mid-stream. It will die and I will have a hand—as big a hand as I can manage—in its demise. I owe that not only to Jane and the doctors who worked with her, but to every patient whose life has touched mine in the last five years–and every patient who will touch mine in the years ahead.
The cruelest months
I have no illusions: I will grieve Jane’s death until the last instant of my life. But I need to define myself as more than the grieving husband—the grieving soul mate.
…I know too many people…
The months from August to December have always been hard since Jane’s diagnosis and death. Every day holds a new trigger for grief. And this year their power is greater than ever before. The tears have come daily for the last week. My mind reels from memory to memory.
The heart of things
Yet, in a part of my soul, I know that I am letting go of Jane in a way I have not done until now. I know she is reborn in a new body that does not remember the life we shared together, that is preparing for the new work before her.
The tears have come daily…
And I still have work of my own to do. It is work shaped by the work we had together, shaped by our lives and our deaths—and especially her death in this lifetime. I have pressed forward with that work despite her death and my grief, but my grief has kept me from doing the best I am capable of.
When the heart begins to listen
I have moved forward but I cannot truly move forward until I come to terms with the fact she is dead—that I will never hear her voice again or feel her in my arms. I know it in my head but my heart has refused to listen.
…I still have work of my own to do.
Or maybe it has. Beginning to clear out the basement was not a conscious decision. I went down to put the laundry in the washing machine and, having done that, started cleaning.
The heart moves forward
Taking her pictures down in the living room was not a conscious decision—I saw a way to make the room work a little better by moving three pieces of furniture. When I was done, the collages felt too big for where they were. I took them down and moved them without thinking about it more than what it took to do it.
…my heart has refused to listen.
This morning, I knew it was time to unpack that suitcase—but it is in a closet I can’t easily get at. Once I can, the die is cast.
The topiary heart
Some time back, I wrote a piece about a topiary heart Jane had grown after we were married. It was the only plant that died while we were in the hospital. I discovered another ivy that had somehow survived the neglect that month in another pot.
…the die is cast.
I salvaged the heart form and began a new topiary. This week the sprouts completed the form. The heart is but a single strand thick and not nearly as full and strong as it was—but there. My own heart seems in similar shape—returned from the dead and knitting together, though still far from what it was.
If the heart is healed, can the soul be far behind?
Our original topiary heart was the only plant we lost during Jane’s time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.
Jane was in surgery five years ago today as I write this. Part of me wishes she had had a less competent surgeon that day–someone who would not know how to deal with the damage to the heart he found when he opened her chest. It would have spared her the 25 days that followed.
…the price of all that is beyond counting…
I remember everything about that day in too vivid detail. I remember taking off her wedding ring. I remember the hours in the waiting room. I remember the walk up the street to the church where two friends were married–where Ted Kennedy sat when his son was in surgery–where the “liberal lion” of the Senate had had his funeral. It is all long and silent.
A single day
I remember coming back to the waiting room. I remember them sending me off to eat with a pager in my pocket. I remember coming back and watching the other people leave, until I was the only person left. I remember them closing the room and sending me to a waiting area of the sixth floor, right outside the ICU where Jane would arrive after the surgery.
It is all long and silent.
I remember trying to distract myself with television shows. I paced. I looked out the window at the street below and at the buildings across the street. And I remember thinking, this is taking too long–something is wrong.
Living and dying
And something was. The valves in the right side of Jane’s heart were so damaged that the serotonin had begun damaging the area where the new valves were supposed to attach. The surgeon had to sculpt a new seating for them into the flesh of Jane’s heart. A lesser surgeon would not have seen in his mind how to do that. A lesser surgeon would have been forced to let her die.
…something is wrong.
Sometimes I think about the what-ifs of that night. I wonder what would have happened if the surgeon had come to me and told me she was gone. I wonder if her death would have been harder or easier to bear. I wonder if I would be doing what I am doing now. I wonder how my relationship with her doctors would have been different–my relationship with our friends.
The day the world changed
I do know that there are people alive today who would not be if that had happened. They had heart surgery after Jane battled through four carcinoid crises–the last of which killed her. Her doctors learned from those and what they did to stop them. There is consolation in that–but it has not stopped the tears, especially not today.
…I think about the what-ifs…
I went to the wake for the father of some friends this afternoon. Jane and I had his grandchildren in class. They were the kinds of kids you don’t forget. Jane would be proud of them and the people they have become–as am I. She should have been there in more than spirit to see them.
Too much memory
A memorial service was held right after the wake. I’d planned to stay for it. But I could feel the tide rising. I had to get out of there before I lost it. Seeing our friends was one thing–seeing our students in that setting–was too much. Maybe on a different day than this one, it would have been different. But today…
There is consolation in that…
Today, I realized Jane really didn’t come out of that surgery. Her body worked–sort of. The heart pumped and the lungs pushed air in and out. The mouth formed words. But the anesthesia clouded her mind so badly she didn’t know what day it was until December 3. And the endless diarrhea stripped off her dignity more rapidly than her weight.
Forging tomorrow
Yet she stayed with me as much as she could for 25 days–and we forged something out of those days. I don’t know who I’d be without those last fragmentary days–or what I would be doing. I don’t know how many lives we touched in those days–nor how many since and in the future. I think I am a better person than I would have been without them.
Her body worked…
But the price of all that is beyond counting–and today it hurts more than I can say.
Every day this month I try to do something to raise awareness about NETs. It is doubly difficult because the these days encompass the worst days in my life.
Grades closed for the first quarter at my high school five years ago today. I was supposed to finish grading some papers by Friday so I could post them on the computer before report cards were printed and sent out. But I also knew Jane and I were headed to Boston the next morning for another meeting with Jen Chan, her oncologist at Dana-Farber. I was worried about that appointment in ways I hadn’t been before.
…Jane’s body died and took part of my soul with it
Jane’s legs and abdomen were more swollen than they had been just two weeks before. She had stopped going to the basement entirely and the previous weekend had sent me out alone to do the grocery shopping. Neither the long-term Sandostatin nor the multiple daily octreotide injections seemed to be doing much good. But I worked hard not to let her see I was worried. I wanted her to stay optimistic.
Anger explodes
I know now that Jane was equally concerned. She had seen our neighbors a few weeks before–just prior to their departure for Florida for the winter. She’d told them she didn’t expect to be here when they came back. She felt, I think, that she needed to stay positive for me the same way I felt that for her.
I was worried…
I’d spent the previous weekend buttoning up the gardens around the house and giving the lawn a final mowing. As I carried a pile of brush to the composter, my foot went through the sod into a sinkhole. I lost my mind for a few seconds. It made me insanely angry and I let all the pent-up anger and frustration of the last several months boil out of me in a primal scream.
Explaining anger
The anger hadn’t entirely dissipated by the time I came back in. My voice was still strongly tinged with anger when I told Jane what had happened. “Why are you more angry at this than you ever are about my cancer?” she asked. Her own voice was tinged with anger and hurt.
I lost my mind for a few seconds.
So I told her. I was calm about it–completely rational. I told her I was absolutely furious about her cancer–and I was. But I didn’t dare let that anger and hurt and frustration out. I had to stay calm because I had to be able to hear what her doctors were saying to us and understand it. I needed to be able to listen critically to what they told us so that I could ask the questions whose answers terrified us but that we needed to hear.
Caregiver anger
And I told her I was terrified that if I let that anger out some of it would splash over on her. She hurt badly enough, I said. I didn’t want to add to that hurt. “I hate this cancer,” I said. “I hate what it does to you. I hate that it makes you angry–hate that the anger gets directed at me sometimes. But when you get angry with me I remind myself that most of the time it is the cancer talking–and not you–and that if I let myself get angry back it isn’t going to help anything.”
I was absolutely furious about her cancer…
I’d watched her get ready to give herself an injection every morning for months. I’d watched her prep the hypodermic, draw out the fluid, cleanse her belly with alcohol swabs, then push the needle into her body and press down on the plunger. I’d watched her go through the same procedure every night, knowing that earlier in the day she had done the same thing when I was not around.
Bargaining in anger
I could see the marks the injections had left on her stomach. I knew there were ways I could not touch her without causing her pain–even a hug could be too much. And I could see how little good those injections seemed to be. It hurt me in my soul to see all that and know all I could do was hold her hand and smile and whisper constant encouragement.
She hurt badly enough…
There were times, when I was alone, that I looked at the heavens and said, “If you’re going to take her, do it quickly and be done with it.” I felt guilty every time I said that–truth be told, I still do. It’s a horrible thing to wish for the death of someone you love. It feels like the worst kind of betrayal no matter how much it may seem like the merciful thing to do.
Changing the landscape
We didn’t know, as we got into bed that night, that Jane had just a month left to live. We didn’t know that we would sleep in the same bed just three more times. She was, however, smart enough to make sure we said our good-byes that weekend after her heart surgery was set for the following Monday. She told me she fully expected to come home again–that she would not die from this surgery or its aftermath–but just in case…
It feels like the worst kind of betrayal…
A lot has happened in the 59 months since Jane died in my arms. The landscape of NET cancer has changed in some significant ways. Most of it has nothing to do with Jane’s death or my actions since then. Most of it was already in the pipeline. I’m not sure anything major changes in treatment or research if I had just curled up in a ball around my grief and disappeared.
What I might have done
Part of me wishes I had done just that. Perhaps then I would not still find myself wandering the house–moving from room to room aimlessly and watching hours vanish with no idea where they have gone. Perhaps then I would not have a dozen projects lying around me half-finished. Perhaps then I would have done what Jane asked me to do in that long Saturday conversation where we said good-bye.
The landscape of NET cancer has changed…
She told me she loved me; that she wanted me to find joy in life again, wanted me to fall in love again; that she fully expected me to go on with my life. Instead I dream of her last months and of trying to find her when we get separated in a store or in the woods. I dream she is lying next to me–and then wake up to find my arms wrapped around a pillow.
What we did and what I do
Every day, I get up. I eat breakfast. I read the newspaper. I craft a list of things I need to do.
Then I sit down and try to do the one thing I know really makes a difference: work to bring hope to patients and caregivers. Some days it’s comforting patients; some days it’s trying to figure out how to explain the latest bit of science; some days it’s helping caregivers understand what they are feeling is normal; some days it’s helping those who mourn find ways to cope; some days it’s trying to figure out how to raise a few more dollars for research; some days it’s about trying to build structures that will help people when I can’t do this any more.
…I dream of her last months…
Fifty-nine months ago today, Jane’s body died and took part of my soul with it. Fifty-nine months ago today, I stopped being Jane’s caregiver and returned to the work we had always done together: trying to help those who needed what we had to give.
Anger and grief fuel my Walk for the Jimmy Fund every year. But no matter what I do, it never feels like enough–and it never alleviates entirely either emotion for very long.
Good morning and welcome to Walking with Jane’s third annual NET Cancer Awareness Day Social Mediathon. I’m Harry Proudfoot, the president of Walking with Jane, and I ‘ll be your host and guide for the next 18 hours as we explore not only what is going on elsewhere on this special day, but also what the latest news is on several fronts in the ongoing fight to help NET cancer patients and their loved ones.
You can follow this social media event in several ways: you can log into walkingwithjane.org, watch our Facebook page or the NETwalkers Alliance Facebook page, follow us on twitter (walking with jane @ Harry Proudfoot), check in on our Pinterest page, go to our Google+ page, or follow things on our Tumblr. You can post NET Cancer Day pictures to our Instagram (@walkingwithjane) or share them to any of the above you can reach. You can also comment on any of the above that accept comments. Please feel free to share what you find here with others.
Disclaimers and cautions
Before we go any further, I need to make a couple of things clear: First, I am not a doctor. None of what you read here today–or on any of our social media platforms–constitutes medical advice of any kind. If you see something today you think might be useful, your first stop needs to be a conversation with your own doctor or a NET cancer specialist. You can find a list of people who specialize in the treatment of NET cancer here. The Carcinoid Cancer Foundation--which we’ll talk about later–maintains that list.
You should also know that when I discuss the disease, treatments, and research that I am merely an educated layperson. My degrees are in English, not science or medicine. What I know I know because of the reading I’ve done, of the conferences I’ve attended, of the conversations with doctors I’ve had, and because of the things I learned during the time my wife was dying from NET cancer in 2010. I’ll talk about that last experience in more detail later today. For now, I will only say that today also marks 59 months since her death.
6:15
People periodically ask me why, almost five years after Jane’s death, I am still involved with the disease. They ask if dealing with the thing that killed my wife every day doesn’t prohibit–or at least slow–my own healing. The answer to the first question is easy: I watched what happened to Jane over the last months of her life; saw how little there was we could do for her; and realized very quickly she was not the only person going through what she was going through.
My wife–who was diagnosed very late in the course of the disease– knew from very early on how deeply the deck was stacked against her. Before she saw her doctor at Dana-Farber, she agreed to be part of a clinical study she knew would have no impact on the success or failure of her own treatment. She knew how little scientists and doctors knew about NET cancer and knew the only way she could help was to let them study what was going on with her.
Jane and I took our marriage very seriously. We believed that on the day of our marriage we ceased to be two people. We were one–and a promise made by one was a promise made by both. That’s not to say we did not have independent lives and interests–we did, and we pursued those things. But neither of us made life decisions without the other. Part of my job, as Jane slid in and out of consciousness, was to make sure her doctors learned everything they could.
I became a close observer of what was going on with her. I knew how frequent her diarrhea was, how much was in each bowel movement, how she looked when she came out of heart surgery, what a full-blown carcinoid crisis looked like. I helped change her bedclothes. I watched her die micron by micron.
Thirty-four people die that death, on average, every day. That number will begin to increase in the near future if nothing changes because we are now diagnosing significantly more cases than we were when Jane was diagnosed. I don’t want anyone to die that death. To prevent that, I have to be as involved as I can in helping raise awareness of the disease; be as involved as possible in creating the resources for the research from which we will eventually get a cure.
The second question is more complicated. But the answer to it doesn’t really matter in the larger context. Nothing compares with what Jane went through that I am determined to prevent others from experiencing. To do otherwise, for me, would dishonor her life and mean turning my back on everything we believed in.
But first, if you are new to NET cancer, I think it’s important we talk about exactly what this supposedly rare–and definitely out of the ordinary–cancer is and what makes it so difficult to diagnose and treat. While we do that here, I want to suggest those of you who already know the basics take a look at this video from last month’s Dana-Farber Cancer Institute Visiting Committee presentation. While it doesn’t directly address NET cancer, it makes a connection that is guiding the search for not only for a NET cure, but also cures for all other forms of cancer. Of course a review of the basics is always a good idea–so if you’d rather…
We have a lot of names for this cancer: neuroendocrine cancer, carcinoid cancer, NET cancer, NET. And we have a number of names for the cancer based on where it is and what it does. For example, pancreatic NETs describes a range of neuroendocrine tumors that form in the pancreas. Those tumors are different from the pancreatic cancer most people are familiar with.
Neuroendocrine tumors (NETs) get their start in cells that are part of the neuroendocrine system. That’s the system that creates all the hormones and peptides the body uses for a variety of purposes ranging from growth to sex to digestion to sleep patterns. In all, the body uses more than 24,000 of these chemical compounds to regulate just about every biological process we engage in.
Neuroendocrine cells are just about everywhere in the body, so at least theoretically, a NET can form just about anywhere. And they do. NETs form in the lungs, on the thyroid and thymus glands, in the ovaries and the prostate–just about everywhere. But the ones we find most frequently are associated with the intestinal tract and pancreas.
NET cancers are very different from the vast majority of solid tumor cancers we most often think of when we think of cancer. Most cancerous tumors grow very rapidly compared to the normal cells around them. But, with some notable exceptions, most neuroendocrine tumors (NETs) grow fairly slowly. My wife’s first symptoms appeared thirty years before the disease killed her–and she did not learn she had cancer until just four months before she died.
The second difference has to do with the size of the primary tumor. Most solid tumors get fairly large before they begin to spread. But a primary NET often does not get much bigger than a lentil before daughter cells begin turning up elsewhere. And those daughter cells can spread fairly rapidly, making a surgical cure difficult if the disease isn’t caught very early.
Normal cancers–if we can call cancer normal–are relatively inert. They take up space, consume resources like food and oxygen, and gradually destroy the organs they come in contact with, leading to the death of the patient. NETs can do similar things, albeit in slightly different ways. A collection of NETs in the intestines can cause a blockage; NETs that have metastasized to the liver sometimes explode in size very rapidly, but a large number of smaller NETs can effectively destroy the liver’s function just as well.
6:45
But some NETs bring a new player onto the board. About 30 percent of all NETs produce hormones–and can produce them in sufficient quantities to have an impact on body chemistry and function. For example, a pancreatic NET might produce extra insulin. Too much insulin leads to an increased metabolic rate, meaning the body burns through its food supply too rapidly.
When a NET produces a hormone, we say the tumor is functional. When it does not appear to be producing a hormone, it is called a non-functional NET. Any time a NET produces a hormone that causes a disruption in the normal processes of the body we say the patient has carcinoid syndrome. We don’t understand why some NETs produce hormones and other appear not to.
In my wife’s case, her tumors were producing serotonin. Initially, this caused frequent painful gas and diarrhea as her body digested food too fast for her intestines to handle. She was, in fact, digesting her food so fast that it left her body before she could absorb all the nutrients in what she ate. But serotonin also regulates sleep–and too much meant she spent years suffering from insomnia. In addition, it regulates blood pressure–so Jane dealt with low blood pressure that led to fainting spells if she got up too fast. She had frequent flushing episodes that doctors chalked up to early menopause. Her digestive issues were irritable bowel syndrome caused by the stress of her job–which also explained her insomnia.
Serotonin is a chemically hot hormone. Normally, it is metabolized in the liver, so its impact never gets outside of the areas it is “safe” for it to be in. But if a NET that is producing serotonin forms in the liver, the liver never gets a chance to destroy it. That hot chemical travels up through the valves in the right side of the heart and eventually destroys them, leading to right-side heart failure. This is called carcinoid heart disease.
Jane already had advanced carcinoid heart disease when she was diagnosed–and that is what ultimately landed her in the hospital. On November 14, 2010, she had open-heart surgery to replace both valves in the right side of her heart with mechanical valves. Surgeons often use pig valves for these replacements because they are less likely to create blood clots. But for carcinoid patients with serotonin coming out of the liver in quantity, those organic valves are a bad idea because they will burn out the same way the originals did. The mechanical valves are not organic and don’t react with serotonin.
7:00 a.m.
(We’ve had our first technical glitch of the morning. The 7 a.m update did not load–it ended up in an endless loop. So I am trying again. The 7:15 update will follow shortly–assuming this uploads properly in the meantime.)
We have a couple of comments already. The first is from Toba Woodruff and gives us a little background into heroine NET experience:
I was diagnosed with BC left lung and had a left upper lobectomy in December 2010. I was told I had intestinal inflammation. Should have known it was more.
What with the second Cat Scan asst. guided needle biopsy that was aborted after they “bent the needle” I decided I’d had enough and was not going on with that procedure. As I said I was told about the “Intestinal Inflammation” for a year. Went for a 1 year cat scan and they “discovered” the pancreatic neuroendcrine tumor. I had a Whipple in April of 2012. Changed hospitals and Surgeons too. Doing pretty well now.
Use Dr. Shumaker in Jackson, MS (But really only for Sando orders and 3 months checks) Use Woltering in Kenner, LA for 6 month checks. So, sorry you lost your wife. Thank you for doing this.
The other comment comes from a FB conversation with Ellen from just after 6 a.m.:
WWJ: You’re up early. Is there anything in particular you are looking forward to hearing about today?
Ellen: Yes, for some reason I got up at 3:30am…..perhaps because it is NET / Carcinoid Cancer Awareness Day! I am looking forward to hearing about the new treatments available, especially for survivors who have had many, many years of surgeries, ablations, radiation etc.
We’ll be looking at those things in some detail later this morning.
7:15 a.m.
But first, I want to finish the background to the disease we started on earlier. Here’s the next piece of that.
Despite a major complication during Jane’s heart surgery–the serotonin had begun working on the actual heart muscle–the surgery went well, as did the initial phases of her recovery. The valves gave a happy click-click with every heartbeat and we were ready to head for the step-down unit two days after the surgery.
Unfortunately, any kind of operation on a carcinoid patient can set off what is called a carcinoid attack in which, for reasons we don’t fully understand, the tumors kick into high gear and start producing even greater amounts of whatever hormone they are putting out. Sometimes, those are caused by the anesthesia–but other times the cause is less clear.
Doctors knew about carcinoid crises in 2010 and took steps to prevent it from happening, in Jane’s case, by administering a significant amount of octreotide before, during, and immediately after surgery. Jane had one two days after surgery–right after she started physical therapy–despite those precautions. Today, the protocols are significantly different from what they were then because of what happened with Jane.
But all of that could have been avoided if we’d simply had better tools for diagnosis and more awareness among doctors. Early detection of this cancer is supremely important. Unfortunately, those are still issues we are dealing with.
7:30 a.m.
Most patients are not diagnosed until they have fairly advanced disease, In fact, the average patient still goes through at least three incorrect diagnoses and seven years of testing before a NET is discovered. They have a vague range of symptoms that point to other “more common” diseases. There are no easily palpated or detected lumps that scream cancer–the primary and immediate daughter tumors are too small–until they hit the liver and sometimes, but not always, explode in size.On paper, we have three blood tests and a urine test that can, potentially, detect the disease. The Chromagranin A blood test has been around for a number of years, but is not very reliable–at best it picks up 60 percent of the cases–and throws off a number of false positives. It is used more to monitor the progress of the disease more than anything else. The 24-hour 5-HIAA urine test detects NETs that produce serotonin, but not others. A blood test to do the same thing has had some successful trials, but suffers from the same weakness–it only picks up the tumors that produce serotonin. The final test–the NETest–looks a broad range of markers but has not yet had for a formal trial and is currently used by some doctors to monitor disease progress in patients who have already been diagnosed.
The tumors are nearly always invisible on most scans. Two new scans, developed in recent years, have improved that situation in at least some cases. The more widely available is a PET scan called an Octreoscan that uses octreotide to light up the receptors on the tumors. The Gallium-68 scan uses Gallium-68 as its painting agent has just finished a series of trials at NIH and shows a much sharper image than does the Octreoscan. But tumors without the appropriate receptors would remain invisible–and such tumors appear to exist.
In any case, the primary care physician has to decide to pursue a NET cancer possibility. My niece, who is now in residency in California, says her medical school did talk a great deal about NETs on the diagnostic side, so young doctors are more likely, perhaps, to include it in their thinking when looking at a patient.
I need to underline here that my example here is Jane, who had tumors producing serotonin. Other people have different hormones involved, which means a different set of vague symptoms–and the need for, potentially, different kinds of tests and treatments.
Understand, too, that what we’ve just done is a very brief overview of the disease and how we diagnose it. We’ll talk about prognoses and treatments later in the day. But if you want a much more detailed explanation of all of the above, the Healing NET Foundation has a lengthy primer on NET you can download here for free. It is very well done, but aimed at medical professionals, though I found it pretty easy to read.
One of the other things we’ll do today is meet some people who are dealing with this disease in their daily lives, whether as patients, caregivers, or people who have lost someone they love to it. I sent out a request for volunteers, as well as some questions. Some of these will follow a Q&A format, some do not. If you’d like us to highlight your story, it’s not too late. Just write your answers to the questions in this first interview and send them to me at walkingwithjane@gmail.com.
I’d particularly like to hear from more caregivers. My plan is to spend an entire hour talking about what it is like to be a caregiver and what those largely ignored people in the background of cancer face later in the day
Our first guest writer of the day is Dian, who is a NET cancer patient in Texas.
Dian’s story for NET Cancer Day
What is your name?
Dian
Where are you living?
Pearland, Texas
Describe how you found out you had NETs. What problems did you have getting the right diagnosis?
The surgeon had just finished a gastric bypass reversal and was routinely checking to show med students when he accidentally found carcinoid tumor in mid-gut.
When were you diagnosed?
2009
What problems does your NET cancer create for you? What is your typical day like?
Dealing with NETs Diarrhea. On meds, down from 10 or more episodes to about 4 daily. Full carcinoid syndrome daily but helped a lot with meds.. just not totally gone.
For example flushing /heart palpitations with exertion. Some shortness of breath. Extreme fatigue on most days. Have to know where bathrooms are. Overall aching pain and some midgut and pelvic area pain from levels of pain 3-8 daily. Interference with sugar and thyroid levels from Somauline.
What treatments have you had? Did they work for you? What kinds of side effects have you experienced from treatment?
Two surgeries to remove tumors, then told that tumors were seeded and implanted in mesentery and pelvis area are too many to count. Because I also have pulmonary fibrosis and kidney problems I am not a good candidate for further surgery.
I’m on Somauline 120 mg./28 days inj. , Lomotil 2 tabs 4 times a day and other meds for diabetes and thyroid cancer. Also 4 liters of oxygen.
Can’t make plans for outings because of either diarrhea, fatigue or pain issues. Coping on a dairy basis, some days are better than others. I focus on good days.
How does where you live affect your ability to get treated for NET cancer?
Finally found a nearby NET oncologist–he has MEN, and understands. Dr. Mark Lewis, Sugarland, Texas. MD Anderson. Traveling has become more difficult for me, but I have seen Drs. Woltering and Liu.
What is your biggest frustration?
Extreme fatigue, diarrhea, and insomnia.
I’m so sorry for your loss. Jane sounds like she was an amazing person I would have wanted to meet. Thank you so very much for all that you do to help us. It does help. You have and are bringing awareness of this horrible cancer. If this knowledge had been there when I first started being sick in my 30s it would have made a big difference.
We know from records and hindsight that my tumor started IN my small intestine. Had it been found and removed my life today would be different. It went undiagnosed until it grew and tore out of the small intestine to nest on top of the intestines AND GROW. That’s why it is so widespread now–including the lymph system. I went to so many doctors including specialists with classic Carcinoid Syndrome from the beginning of my sickness in my mid-30s. None of them ever suspected or tested for carcinoid.
Also, after working 22 yrs. I was denied SS disability benefits because I could never get a doctor to diagnose me correctly.
God bless you and thank you again,
Dian
8 a.m.
Dian’s story underlines another serious problem NET patients face: the problem of finding an oncologist who specializes in NETs. As I said earlier, the Carcinoid Cancer Foundation maintains a list of NET specialists by state. But in too many states there are simply no expert oncologists available. That means too many patients have to travel too many miles to find someone who knows what they are doing.
The list also differentiates between those who are actively involved in research and have significant experience with the disease and those with less of a track record. There are not a lot of folks in that first group. No matter how you look at it, we need more NET cancer doctors because this cancer plays by very different rules than the other, more well-known ones do–and never mind that the small number of doctors we do have face a rising tide of patients.
There is some good news on that front–at least locally. When Jane was diagnosed, Dana-Farber had just one doctor working full-time on NETs. Jen Chan, who became Jane’s doctor, only spent half her clinic time seeing NET patients. Within a year of Jane’s death, all her clinical and research time were spent on NET–and they still needed more doctor time in the clinic. This year, DFCI has hired two new oncologists with an interest in NETs and carcinoid who will spend part of their time with NET patients.
That kind of increase needs to be replicated nationally, though. In 2010, we had 10-11,000 patients diagnosed with the disease. Last year, we had around 15,000 according to a couple of sources in a position to know. The last official count put the number of people who are knowingly living with the disease at about 110-120,000. But if we are now adding 15,000 new patients a year to that list, that number is going to swell fairly rapidly.
The equally important question is, where are those new cases coming from? And the short answer is, we don’t know. It may be we have significantly increased awareness among primary care physicians in the last five years. Given the increase in publications about NETs in major journals and at conferences–and the possible increased focus of medical schools on the disease evidenced by my niece’s experience–that seems like a possibility.
The improvements in scanning technology I mentioned earlier, may also be playing a role, especially if they are being utilized more by doctors more aware of the disease and the existence of those scans.
But it is also possible there is something environmental going on. I’m increasingly reading about cases of people in their 20s and early 30s being diagnosed with significantly advanced disease. I have a friend, who has written here earlier, who underwent her first liver embolization in her early 30s. We lost a young woman just over a year ago who was only in her late 20s. And I’ve seen one report of a nine-year-old diagnosed with full carcinoid syndrome.
My hope is that cases like these have always existed–we just didn’t know they were there because the expectation was this disease hit an older population and we were not looking for it elsewhere. In reading some of the older studies, that certainly seems it might well be the case.
The one thing we can say for certain is we are seeing more cases diagnosed–and that means we need more doctors and more researchers–more everything, really. And we can’t do that with a research budget that–for all that, too, has increased over the last five years–still amounts to a rounding error on what we spend on lung cancer or breast cancer or prostate cancer.
Time for a quick update on how we’re doing. So far, 68 people have logged into the main Social Mediathon site and our Facebook audience has swelled to nearly 700. That’s well ahead of where we were last year at this point.
Time to brighten our Social Mediathon page with our first picture of the day.
This is also a good time to remind all of you that you are free to share everything here with your friends on every social media platform you are part of. I had hoped to add SnapChat to my list this weekend, but that didn’t happen. Still, if you have an acc out there, you can certainly share that with the people you talk to there.
I also have some pictures I want to post as the day goes on. But frankly, I’m running as fast as I can just to keep up with what we’ve posted so far.
8:15 a.m.
At 9 a.m. we’ll break away to spend some time in England with an expert there who is doing a live web chat on NET cancer as part of the British effort on this global NET Cancer Awareness Day. But first, in preparation for that chat, here is a short video from the Royal Free on recent advances in treatment of NETs.
8:30 a.m.
Some comments from people in the audience this morning:
Alicia: Today is NET awareness day! 2 years ago I had never heard of this disease, yet 1 yr and 8 months ago I underwent a surgery to remove a tumor and part of my lung to this disease.. I still have symptoms occasionally and my marker tests are elevated with small nodules in every part of my lung. This disease is real and people die of it and never understand or even know they have… not all cancer is pink! #zebrarare I am so thankful for those who fight to educate and those who live with disease and advocate! It’s our day!EDUCATE!!!
Patient Question: Can’t a radiologist tell the difference between neuroendocrine and others?
Reply from another person:The only way to determine the type of cell would be through a biopsy. The problem is that with this type of cancer most people do not have symptoms until the cancer has already spread. Many in the medical community incorrectly diagnose because they are unfamiliar or unaware of this “rare” type. By spreading information to the medical community and to the general public patients will be diagnosed sooner and will have much better outcomes. Hope this helps.
8:45 a.m.
Kara Daniels is a member of our Boston Marathon Jimmy Fund Walk team. Her story about NETs starts with a cookout.
My name is Kara Daniels, I live in Hopedale, MA and was diagnosed with Neuroendocrine/Carcinoid cancer six years ago, in September 2009. I was very fortunate in being able to be diagnosed fairly quickly.
After being at a cookout on July 4, 2009, I developed severe diarrhea and abdominal pain within 24 hours. It took me several days to call my doctor with my symptoms because, being a nurse, you don’t call your physician just because you have diarrhea. After becoming very dehydrated, I resorted to calling my doctor and being seen.
Of course we both thought I had probably eaten something that may have gone bad at the cookout (you know the story – don’t leave potato salad out in the sun when it’s 90 degrees out) despite the fact that no one else who was at the cookout had become ill. I thought I had gastroenteritis and went on the BRAT diet and had some labs drawn testing me for celiac disease and being lactose intolerant.
My physician told me she didn’t want to do a ct scan at that time stating, “A ct scan is equal to 100 x-rays.” I always laugh at that statement when I think of the 29 ct scans I have had since. She told me to call her in a month if I was not better.
I waited three weeks and called her back. Within those 3 weeks I ended up in the Emergency Room severely dehydrated and requiring several liters of IV fluids. We resorted to the ct scan which, at that time, which showed multiple tumors in my pelvic area.
Initially, it was felt that I had ovarian cancer and I was referred to a Gynecologic Oncologist. After several ultrasounds and being told that I had “totally stumped him with the findings,” he told me it was time for me to have a biopsy–which revealed carcinoid cancer with a primary site of what is believed to be my small bowel with metastasis to my pelvis, around my ovaries, outside my right lung, my abdominal wall and the top of my liver. I had developed my “gastroenteritis” July 4 and had my carcinoid diagnosis by mid September.
As I look back, I did experience diarrhea and flushing before that but thought the flushing was due to my age (43 at the time of diagnosis) and didn’t think much of the diarrhea.
Fortunately I live only an hour away from Dana Farber Cancer Institute in Boston and was extremely lucky to have found Dr. Matthew Kulke. I was immediately started on octreotide injections in October. However, by the following May, my ct scan had shown tumor progression.
At that time I started on a clinical trial of AMG 479. I went in to Dana Farber every three weeks to see my team, receive my infusion of AMG and octreotide injection. I was known as the poster girl for AMG until January of this year when I had more tumor progression, although small, but progression none the less and enough to take me off of the trial.
On to trial number two of cabozantinib. Starting at the highest dose of 60 mg and working my way down to 20 mg, I was not able to tolerate the side effects which included decreased appetite, mouth sores, nausea, extreme fatigue, abnormal lab values, thinning hair, numbness in my hands and pain in my feet–making it difficult to walk at times. Although the side effects were much less with the 20 mg, they still remained. After much soul-searching and talking with my family and closest friends, I decided to stop the trial in July.
I have been feeling great until about a couple of weeks ago, when I had a small setback, but nothing that a week of rest didn’t help. I have tried to not let this slow me down at all and have continued to work through all of this.
It has only been recently that I have come to realize that if I’m tired in the afternoon, it’s ok to rest for a bit. In addition, I have one son, who is a high school senior, and we have been busy applying to colleges–so there’s never a dull moment.
As for my biggest frustration, well, I could list many, from the decreased awareness of NET’s, to people thinking there’s nothing wrong because you “look great,” trying to manage everything you eat and the timing of when you eat, to seeing people with other types of cancers having the entire community come to their rescue. I have to honestly admit, it’s nice to watch the Patriots game today and not see a sea of pink on the television screen.
I have decided to stay off of treatment for now and take a wait and see approach. My last MRI in October–yes, no more ct scans–did not show any tumor progression. I know some may not agree with this approach, but it is more important to me to feel well, not struggle with side effects and have a great quality of life as I do now.
I have to say I am very impressed with the information the chat is providing, especially to individual patients. If you are not following it, you should be. I’ll comment more fully on some of it later.
10:00 a.m.
The web chat has closed from the Royal Free. They will publish answers to any remaining questions later. You can still read the answers to the questions posed there.
Before we go any further, I should point out a site everyone needs too visit today: netcancerday.org. While you are there you can sign up to do a number of things both online and in the real world. And make sure you share their address on FB and twitter–and anywhere else you can think of.
You can also download a Zebra ribbon there for your FB or other social media accounts. I’d love to see lots of zebras everywhere I go today.
This says a lot. The purpose of today is to remind people of a very different form of cancer that does not get very much attention.
At the end of the eight o’clock hour, I posted Kara Daniels’ story. In it, she raised a couple of important issues, not least of which is the lack of understanding about not only NETs but many other forms of cancer that are ignored by the NFL and the general public in the massive pink wave that is October.
I mean no disrespect to those with other forms of cancer–but I truly understand Kara’s comment about watching football in October. This is especially true, however, when I go to the American Cancer Society and look for information about NETs. While a search for many cancers on their website will take you quickly to a page dedicated to that cancer, a search for NETs there will only leave you frustrated.
Please drop the ACS a note–or give them a call–today and ask them to address this problem with their website.
10:30 a.m.
On a more upbeat note, here is a great idea to raise some money for NCAN: do a virtual walk for NET cancer. Here is a link to their Facebook event page. But I am putting the extended post for their event below:
Hope you’ll be joining our ‘Strides for Stripes’ Virtual Walk! Your participation makes life better for thousands of people who suffer from this disease.
The Virtual Walk- Since a virtual walk is one you can walk anywhere…anytime it is good for those who don’t have the time, aren’t close to a live event or can’t physically participate. Below is a guide that’s full of ideas to help you plan your own Virtual Walk (or another fundraising event) and help support the fight against Neuroendocrine Cancer.
Stride for Stripes Walks Fight Neuroendocrine Cancer
As a participant in one of the walks, you are raising money for programs that benefit neuroendocrine cancer patients and raising awareness of neuroendocrine cancer.
Here are things you may not know about this disease:
Carcinoid /NET cancers are known to affect over 125,000 patients in the United States.
12,000 people are diagnosed annually.
Initially, over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.
Average time from initial onset of symptoms to proper diagnosis exceeds five years.
You can fight neuroendocrine cancer- and be healthy and have fun doing it!
Get a Walk T-Shirt and other great prizes
Raise $35 and you get a cool Strides for Stripes T-shirt.
NOTE: TEE SHIRTS WILL BE AVAILABLE ON OR ABOUT OCTOBER 12TH. IN ORDER TO BE GUARANTEED A SHIRT, PLEASE SIGN UP BY OCTOBER 1ST. DUE TO THE HIGH COST OF SHIPPING, TEE SHIRTS WILL BE SHIPPED WITHIN THE CONTINENTAL UNITED STATES ONLY.
How to Create Your Walk Fundraising Page
Participating is easy and fun. There are two ways to participate:
1) Fundraise for the Walk on your own. By signing up as an individual, you can tell your personal story and family and friends can donate directly to your personal page.
2) Sign up as a team. By creating a team of friends, family and coworkers, each team member can create their own personal page, tell their story, upload pictures and fundraising individually as part of the greater team. You will also have a team pages where you can monitor the success of your team.
Put the Fun in Fundraising!
1. Set up your fundraising webpage
Creating your online fundraising page (personal page) is the fastest and easiest way to receive contributions. You can upload your address book and send everyone a personalized email asking for their support.
2. Tap into your social networks
If you’re on Facebook or Twitter, let friends and family near and far know you’ve joined the Virtual Walk and ask them to support you with a donation. Post periodic updates on your fundraising success to motivate them to get involved.
3. Walk in someone’s honor
Ask for donations to honor a friend, family member or co-worker who has been affected by neuroendocrine cancer
4. Celebrate
If a birthday, anniversary or holiday is coming up, ask family and friends to make a donation to support your participation in the Virtual Walk instead of a gift.
5. Conduct an in-person donation campaign
Go out of your way to meet with and talk to your closest friends and family explaining your reasons for walking and why you chose to support the Neuroendocrine Cancer Awareness Network. Making an effort to reach out on a personal level can mean a lot to your donors.
Take Action, Make a Difference
The power of your contribution…
The money you raise for your Walk will help the Neuroendocrine Cancer Awareness Network continue to provide programs and services essential to neuroendocrine cancer patients.
Here are some of the ways your contribution, large or small, makes a difference:
$15 provides supplies to a patient support group for a month
$25 supplies a comprehensive patient information packet to a neuroendocrine cancer patient, ensuring that the patient will be a good advocate for his/her care
$50 provides DVDs showing cutting edge information from a NET patient conference to a patient
$100 from 20 donors sends an expert to provide urgently needed information at a patient conference
$200 keeps the patient hotline open for a month
$500 sponsors a patient to attend a regional patient conference
$1,000 sponsors a doctor to learn more about neuroendocrine cancer and earn CME credits
$2,000 starts the ball rolling toward funding a research grant
Virtual Walk Guide: Fun Ideas for Your Virtual Walk
VIRTUAL WALKERS- Create your own community fundraising event. Plan a walk or fundraising event in your community. You can plan a walk or another type of event like a wine tasting or a bowl-a-thon. By registering as a community event on the website, your team page would be about your event specifically. Those individuals that choose to join your “team” can fundraise on the website. You can watch the progress of your event and send emails to your contact list encouraging their participation and support.
You may choose to walk around your community, in a local park, indoors at a mall or even on a treadmill at a gym! Your Virtual Walk is a reflection of you, and is as personal as your reasons for joining the fight against this deadly disease.
Be creative! Whether you walk alone, with a friend, or form a team, you’ll be keeping important programs like these available to neuroendocrine cancer patients:
Patient Hotline
Patient Conferences
Information Packets
Support Group Assistance
Funding Research
Awareness Items
Information on Diagnosis and Treatment on our Website & Social Media
Not sure where to start? Here are a few ideas.
Walk in a mall
Take a walking tour of your town
Make your grocery shopping or another shopping trip YOUR walk to fight neuroendocrine cancer
Belong to a gym? Walk a treadmill, and enlist other members to walk with you
Even if you can’t walk, get people involved with a board game, bus trip, beanbag toss- you can be as creative as you want!
Send us a picture. And don’t forget—because this walk is virtual, your team members can be anywhere in the U.S. (Outside the US, please email bob@netcancerawareness.org for more details.)
I think this is a great idea and think that it can serve as a template for other groups to do something similar to support their regional NET cancer center. We’ll come back to the need to support those centers later today.
While the primary focus of this Social Mediathon today is not about raising money, if your NET cancer group has a fundraiser you’d like us to promote today, pass along the information at walkingwithjane@gmail.com and I’ll make sure it finds a place here and on our walkingwithjane.org calendar page.
10:45 a.m.
For Walking with Jane, today is about sharing stories and information. But this seems like a good time to talk about what we’ve been able to do this year financially to help the cause.
The vast majority of the money we raise never passes through our hands here. Instead, it goes directly to the Boston Marathon Jimmy Fund Walk team I captain. This year, we changed the team name to the NETwalkers Alliance because the name better reflected all the different parts of the effort. We’ve tried to gather all the individuals and teams who walk to honor or remember someone with NETs under one big tent with all the money going to NET research at Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors.
That team raised a total of $67,701. While $30,000 of that is attached to my name, I didn’t raise all of that by a long shot. Gail Silvia organized a dinner that raised $3000, others carried the weight for our Walking with Jane Miniature Golf Open. Friends helped stuff envelopes for two other fundraisers.
The biggest single fundraiser by any team member was the Hank Landers Memorial Golf Tournament run by his daughter, Jenaleigh. It pulled in close to $8000. We had nine people raise more than $1500 on a team with 33 members.
Of course we’d hoped for more. Our goal was a team with 60 walkers that would raise $80,000. Next year, we’ll get there.
In addition, The Walking with Jane Fund for NET Cancer at DFCI will finish its commitment to raise $100,000 over five years at the end of December. I plan to continue that commitment over the next five years in a similar amount. That money goes directly to that fund as well, without seeing the inside of the Walking with Jane bank account.
We also handed out $5500 in scholarships this year to undergraduates planning to enter medicine or science teaching when they finish their degrees. Most of that money goes to graduates of the school Jane and I taught at, but one scholarship goes to a student at Jane’s alma mater, Bridgewater State University.
We also had a Walking with Jane team at this year’s Relay for Life of Greater Fall River. That team raised about $7500 which will go largely to patient support services.
But first, we need to return to the discussion we started earlier about NET cancer basics. We haven’t talked at all about the prognosis for patients beyond saying that there is no cure save early surgery. But that doesn’t mean people can’t live for a significant amount of time with a good quality of life. Prognosis currently depends as much on the stage of the disease and something called tumor grade.
Ronny Allen is a patient who blogs on NET cancer in language lay people can understand. About a month ago, he took on both those issues. His explanation is about as good as I’ve seen. You should read it now.
11:30 a.m.
As I said, Ronny doesn’t just write about NET cancer–he is also a patient, and is actively involved in England, and around the world on NET cancer issues. Here is his profile.
What is your name? – Ronny Allan
Where are you living? UK (England)
Describe how you found out you had NETs. What problems did you have getting the right diagnosis?
After a routine set of regular bloods, I was diagnosed by my GP/PCP) with Iron Deficiency Anemia and referred to a specialist (quite low hemoglobin). The specialist was immediately suspicious and bypassed a colonoscopy and sent me for a CT scan which highlighted numerous tumours in the GI tract including the liver. I was eventually diagnosed with Metastatic NETs (small intestine). I was one of the lucky ones, although I did have a colonoscopy (negative) 18 months prior due to an temporary episode of a darkening stool.
When were you diagnosed? July 2010.
What problems does your NET cancer create for you? What is your typical day like dealing with NETs?
I am pretty stable and am bothered mainly by a compromised digestive system which I mostly address via diet and supplements. I can get tired easily and I have taken early retirement to focus on my health.
What treatments have you had? Did they work for you? What kinds of side effects have you experienced from treatment?
I have had 2 large surgeries (1. terminal ileum, right hemicolectomy, mesentery tidy up plus removal of retroperitoneal fibrosis. 2. Liver resection. Two smaller surgeries – 1. Left axillary lymph nodes x 9. 2. Left clavicle lymph nodes x 5. Plus several others issues – you can read all of this is more detail here: http://wp.me/P4AplF-PQ.
I’m stabilized on Lanreotide every 28 days. I think the early and speedy treatment I received is why I am in good shape today and look well (!). In addition to me giving up work (4 years after diagnosis), the consequences of my cancer and treatment are that my digestive system is compromised, my general immune system is less efficient so I need to be careful with other illnesses which might have a worse effect than they would with a regular guy.
I had lung blood clots early on and have been treated with blood thinners since – this is a minor inconvenience although I’d rather not have it. I have mild lymphedema in my left hand as a result of left axillary surgery (9 lymph nodes removed). I have a (currently) benign lesion on my thyroid.
Living with the knowledge of all these side effects and the potential for new problems to come along is not easy.
11:45 a.m.
I don’t know much about Paraganglioma Jugulare beyond that it is one of the rarest forms of NETs. Sandra Louise Murray responded to my request that she write something about her experience with it. This is what she wrote:
I was diagnosed with an inoperable Paraganglioma Jugulare ( Skull based brain tumor) Aug 2013. My symptoms had started noticeably that June when I developed severe tinnitus, severe headaches, and uncontrollable night sweats.
I had already been experiencing episodes of unexplainable “Flushing” and high blood pressure for many years. Late July, I had a very severe episode of prolonged vomiting while working an international flight from Istanbul to JFK. (I am an international flight attendant currently on disability while I fight this disease). The vomiting was so violent that I pulled and permanently damaged my iliopsoas muscle and also caused a hernia.
An MRI diagnosed me with a subdural hematoma, cerebral spinal fluid leak, a cervical spine tumor and the inoperable Paraganglioma.
Pheochromocytoma and Paraganglioma are NET cancers.
This NET cancer is very rare…only about one in one million people will develop this cancer.
My tumor is radiation and chemo resistant…..thus making treatment most challenging. And, of course, very few doctors have any experience with this disease, making recovery even more challenging. I struggle daily with the tinnitus, headaches and night sweats. Getting a decent night sleep is impossible.
I am very fortunate to be in a Pheochromocytoma and Paraganglioma protocol at The National Institutes of Health in Bethesda, Md. headed by Dr Karel Pacak. Dr Pacak has dedicated his life to finding a cure for this NET cancer. I go to the NIH for regular screening. They have types of PET and CT and other nuclear medicine scans for diagnosing and treating this disease that are not available any other place in the world.
I have been accepted at Massachusetts General Hospital in Boston to start 6 weeks of Proton Beam radiation treatment. I, also, have been accepted at the Mayo Clinic in Rochester, Minnesota for Gamma Knife radio surgery. I have not yet decided which treatment has the least likely chance of collateral damage to the cranial nerves and brain.
Today I will hope for better worldwide NET Cancer Awareness and I pray that all of us who suffer with NET cancer will one day find a cure. God Bless all Zebras…..and all cancer patients worldwide.
Noon
Dr. Eric Liu, a surgeon who specializes in NETs, has made a number of media and social media appearances today. While many of these have passed, you may be able to access them via the stations websites or FB pages.
Friends happy NETs day!
If you are interested and have time, I’m going to spread the word through media today.
Get out there and make sure people know who we are!
Six hours in and it’s time to look at some metrics. We have 210 hits on the walkingwithjane website to this point and an audience of over 1650 on Facebook. Metrics on other sites are less clear, but it would appear we are on a pace that is well ahead of last year.
I’m also told a Cincinnati television station has a link to our Walking with Jane Facebook page on their site.
Lucy Wiley sends the following. Please note her clarification on what I wrote earlier about how some NETs remain invisible even on the latest scans.
Such a timely and interesting post – from the hearts of those who have dealt or continue to deal with NET. Thank you, Mr. Proudfoot. Just one small correction if I may: “But tumors without the appropriate receptors would remain invisible–and such tumors appear to exist.” The atypical, more aggressive form of NET frequently does not develop the receptors that allow it to be seen on octreotide-based scans such as the “Octreo-scan” or the 68-Gallium PET/CT. These tumors also may occur in more diffuse formations and may also develop outside the digestive tract in breast, lung and pancreatic tissue as well as some other unusual sites.
And Bella sends the following comment: Thank you for all that you are doing to raise awareness for this relatively unknown disease and I am sorry for your loss. I have the usual story of misdiagnosis (8 years) and multiple treatments since (surgeries, chemotherapy, radiotherapy) but I’m still going strong. For a lot of us this disease is a long-term companion and the treatment is a marathon so any support is appreciated. Once again, thanks for the great work you are doing. Bella from London, UK.
What are the rest of you thinking? And what would you like to see as we head into the afternoon on the East Coast of the US?
12:30 p.m.
Next, let’s take a brief look into just the scale of the research going on in NET cancer this year. In September, more 25 different presentations on NETs were given at the European Cancer Congress in Vienna. Less than a month later, 67 papers and posters were given at the North American Neuroendocrine Tumor Society meeting in Austin. While there is some overlap, that is a significant increase over where things stood just five years ago.
Two topics in particular leapt out at me from those conferences. The first was the announcement of the results of the Phase III trial of telotristat etiprate, which I wrote about back in August following the initial announcement of those results. One bit of additional news released beyond what we reported in August was that one of the adverse effects was depression. Two patients in the 250 mg group and eight in the 500 mg group experienced depression during the trial. However, the abstract says these and other adverse effects were resolved over the course of the trial. Eighty-six percent of those involved in all arms of the trial continued on the 500 mg dose after the conclusion of the trial.
Further, a separate presentation on the opinions of participants in the trial showed very positive feelings about the impact of the treatment on their daily lives. The vast majority reported the decrease in bowel movements, in particular, had a positive impact on their social and work lives.
Significant decreases in flushing episodes were also reported in the primary paper.
The second thing coming out of those meetings was the long-awaited results of the PRRT trials in the US and Europe. The results were stunning. The study involved over 200 patents and took place in 50 cancer centers–35 in Europe and 15 in the US. Half the patients received the standard high-dose octreotide LAR injections at 60 mg every four weeks while the other half received PRRT using 177 Lutetium-Dotatate in four doses over eight weeks in addition to a 30mg dose of LAR every four weeks.
The PRRT group had a 79 percent improvement in Progression Free Survival compared with the LAR group. Median PFS for LAR is 8.4 months. Data for the PRRT group had not yet matured, but was projected at 40 months, according to Dr. Jonathan Strosberg, a Moffet Cancer Center oncologist and researcher who presented the results.
Thirteen patients in the PRRT group had died during the study, compared with 22 in the LAR group. However, there were more serious adverse reactions (nine percent) among the PRRT group than in the LAR group (one percent).
The NETTER-1 trial was the first randomized, prospective Phase 3 trial of 177 Lutetium-Dotatate for midgut NET patients. The drug has fast-track status from the FDA and these results could lead to rapid approval for the treatment in the US.
Follow-ups on patients in the trial will continue through February 2020.
Another paper caught my eye that should be of interest to NET patients concerned the use of Everolimus on non-functional midgut and lung NETs. Everolimus is already part of the standard of care for pNETs, having been approved by the FDA in 2011.
The RADIANT-4 study, a large Phase 3 controlled trial, looked at the efficacy of Everolimus in advanced, progressive forms of these tumors in 302 patients. The mTOR inhibitor showed a 52 percent reduction in progression or death vs. a placebo and an increased period of PFS of 7.1 months.
A separate Phase 2 trial of Everolimus combined with Bevacizumab in pNET patients also looked promising–improving PFS over the use of Everolimus alone. However, the combination did result in an increase in adverse reactions compared to Everolimus by itself. The study calls for further investigation.
Of less immediate interest to patients and caregivers are a number of studies looking at how NETs work and creating research tools. including a new pancreatic NETs cell line that will help develop new medicines for that form of the disease more quickly. For researchers, however, the kinds of things are supremely important.
And in the longterm, improving our understanding of how these cancers work is where the breakthroughs will come from–and we need big breakthroughs. The new treatments we’ve talked about above all suffer from the same problem: they address the symptoms of the disease; they slow down the progression of the disease; sometimes they even reduce the size of the tumors for a time; but they are not curative.
The only cure is to detect the cancer early–before it has spread and while it can be cured surgically. That kind of detection only happens currently by accident. Absent that, everything we now can do is a holding action that eventually breaks down. When it does, patients die. Their deaths leave a hole in the world of their loved ones.
But to have three successful Phase 3 trials in a year–even if they don’t offer a full-blown cure–I rate that as pretty awesome.
12:45 p.m.
Josh Mailman is a very bright man with a very powerful NET story. Given that we may soon have broader access to PRRT in the US in the near future, his experiences with it may help patients get a better handle on this newer treatment. Watch this 28 minute video on Vimeo in which he tells his story and touches on other pieces as well, including the new Gallium-68 scan.. That will give me time to get some lunch. 🙂
1:30 p.m.
No matter what cancer one encounters,there is a group in the background that is virtually invisible. Attention during an illness is, rightfully, focused on the patient. Very few doctors, nurses, or organizations recognize that when someone in the family has cancer, the entire family has cancer.
And that is true especially of the person who becomes the primary family caregiver. Sometimes it is a mother or father, sometimes it is a husband or a wife, sometimes it is an adult or adolescent child. But is always someone. They are on-call 24 hours a day, seven days a week–and even when they follow the directions that say, “Take some time for yourself,” that time is filled with thoughts of the person they care for.
Sometimes, the cancer story has a happy ending. The caregiver rejoices and life moves forward–though always, I suspect, with the same worry that plagues the darker moments of the patient’s life: “What if it comes back?”
And sometimes the story has an unhappy ending. Then the caregiver stands in the receiving line at the wake or funeral, too numb to really perceive the hugs and condolences that are meant to sustain them. They will feel nothing, most times, until everyone has moved on with their lives.
I put out a call for caregivers to share their stories the same way I put out a call for patient stories. I was not surprised when no one who is currently a caregiver answered the call, nor surprised when only one person who lost a loved one responded. An active caregiver is too busy with the work of staying positive to admit to the trials and frustrations they experience in that role.
And a person in grief after that role has ended is in no state to speak publicly at any length about the bitterness that comes with the end of a long battle that ends in the death of the one they loved.
Pablo J. de la Torre lost his wife Cindy earlier this year to NET cancer. This is his story:
Cindy was being treated at Mount Sinai in New York about a three drive from our home in PA.
I arrived for a visit and found the doctor with Cindy. He had just told us that there was nothing more they could do, Cindy looked at me with a smile and told me she was not afraid.
I decided to transfer her to a hospice in New York so she could be near her family. I would visit every other day or so. I was just amazed that all Cindy was thinking was about my health. It didn’t seem real– I just kept thinking that we would bring her home.
I got ready for a visit early. Just before leaving, I got a phone call from the hospital telling me she had passed in her sleep. I was numb–I just didn’t know what to think. I told my son and we just hugged each other and then jumped into the car for the longest ride of my life.
I don’t remember the trip but walking into the room and seeing her sleeping, peacefully. That’s all I remember of that day.
She passed in May of this year. I did not deal with it– couldn’t believe she was gone.
Now I try to do the best I can to get by. It feels empty in the house, I try to cope and honor her by making sure the support group she started stayed up and strong.
Now I just try to ensure that my children and grandchildren are well and helping them as much as I can. I also try to support friends who are dealing with loss and some who are suffering from cancer.
I can’t say anymore—sorry–it hurts to think.
1:45 p.m.
I understand what Pablo is feeling. When you lose someone you love, everything goes sideways. My father said to me the night Jane died that nothing anyone could say to me was ever going to make this feel any better. He was right. Nothing I do makes that loss any easier to bear.
Just under 10 months after Jane’s death, we launched this website. Four year ago today, I wrote what follows. It reminds me of where my mind was then, eleven months after Jane’s death–and of where my friend Pablo is now.
The beginning of the end began 12 months ago today.
It began quietly enough. We got up early and made the drive to Dana-Farber. The traffic was better than usual because of the Veteran’s Day Holiday. But Jane had had more difficulty getting down the stairs at home. Her legs were often swollen with fluid, but the last couple of days the fluid had begun to build up in her arms again. Her albumin levels, we would learn later that day, were crashing. One of the things albumin does is keep the liquids in the cells where it belongs. Our last appointment of the day was with a nutritionist who was going to help design a diet to boost those levels–and hopefully reduce the swelling.
We had the regular blood draw, then went to see Jen Chan, Jane’s oncologist. We were all concerned about the build up of fluids in Jane’s belly and talked about doing a procedure on Monday to try to draw off some of the fluid. We went to see Javid Moslehi, Jane’s cardio-oncologist. The walk to his office was exhausting and we stopped at a bench about half way there so Jane could catch her breath. I had offered to push her in a wheelchair but she had made very clear she wasn’t going there. Javid was worried about the fluid build-up as well.
We made the trek back to Dana-Farber to have her monthly injection and meet with the nutritionist. The injection was a simple shot in the buttocks. Then we met the nutritionist. She talked about the need to consume more protien. Jane discovered Greek yogurt was full of the stuff–and she loved Greek yogurt.
When the woman left, we were ready to go home. Then Jane stood up. Her pants were soaked through. She was leaking fluid from the injection site. I wanted to get someone to look at what was going on, but she looked at me with those big brown eyes full of pleading: “I just want to go home,” she said. “Please, just take me home.”
Another man might have done something else. For a time after her death I was angry with myself for not being more insistent, thinking that if we had stayed things might have been different. I have since figured out that it was already too late–that there was really nothing I could have done that would have saved her–and that taking her home meant she got one more weekend in the home that she loved–gave us time to say the private good-byes while she could still talk.
The drive home was awful. The traffic was stop and go from Brockton to Taunton. I had to help her out of the car when we got home and carry her up the stairs.
This morning I had trouble getting out of bed. I cried a bit, railed against the injustice of it all, got angry about all the things that made her death inevitable.
And resolved again to find a way to kill this foul disease.
2:00 p.m.
I am still coming to terms with the last days of Jane’s life. On the tenth day of each month I write a piece about her death and the current state of my grief. This month’s piece follows, but I will also post it as a separate piece on the site. It speaks to a significant part of what it means to be a caregiver–the need to keep hope alive in the darkest of times.
Keeping hope alive
Grades closed for the first quarter at my high school five years ago today. I was supposed to finish grading some papers by Friday so I could post them on the computer before report cards were printed and sent out. But I also knew Jane and I were headed to Boston the next morning for another meeting with Jen Chan, her oncologist at Dana-Farber. I was worried about that appointment in ways I hadn’t been before.
…Jane’s body died and took part of my soul with it
Jane’s legs and abdomen were more swollen than they had been just two weeks before. She had stopped going to the basement entirely and the previous weekend had sent me out alone to do the grocery shopping. Neither the long-term Sandostatin nor the multiple daily octreotide injections seemed to be doing much good. But I worked hard not to let her see I was worried. I wanted her to stay optimistic.
Anger explodes
I know now that Jane was equally concerned. She had seen our neighbors a few weeks before–just prior to their departure for Florida for the winter. She’d told them she didn’t expect to be here when they came back. She felt, I think, that she needed to stay positive for me the same way I felt that for her.
I was worried…
I’d spent the previous weekend buttoning up the gardens around the house and giving the lawn a final mowing. As I carried a pile of brush to the composter, my foot went through the sod into a sinkhole. I lost my mind for a few seconds. It made me insanely angry and I let all the pent-up anger and frustration of the last several months boil out of me in a primal scream.
Explaining anger
The anger hadn’t entirely dissipated by the time I came back in. My voice was still strongly tinged with anger when I told Jane what had happened. “Why are you more angry at this than you ever are about my cancer?” she asked. Her own voice was tinged with anger and hurt.
I lost my mind for a few seconds.
So I told her. I was calm about it–completely rational. I told her I was absolutely furious about her cancer–and I was. But I didn’t dare let that anger and hurt and frustration out. I had to stay calm because I had to be able to hear what her doctors were saying to us and understand it. I needed to be able to listen critically to what they told us so that I could ask the questions whose answers terrified us but that we needed to hear.
Caregiver anger
And I told her I was terrified that if I let that anger out some of it would splash over on her. She hurt badly enough, I said. I didn’t want to add to that hurt. “I hate this cancer,” I said. “I hate what it does to you. I hate that it makes you angry–hate that the anger gets directed at me sometimes. But when you get angry with me I remind myself that most of the time it is the cancer talking–and not you–and that if I let myself get angry back it isn’t going to help anything.”
I was absolutely furious about her cancer…
I’d watched her get ready to give herself an injection every morning for months. I’d watched her prep the hypodermic, draw out the fluid, cleanse her belly with alcohol swabs, then push the needle into her body and press down on the plunger. I’d watched her go through the same procedure every night, knowing that earlier in the day she had done the same thing when I was not around.
Bargaining in anger
I could see the marks the injections had left on her stomach. I knew there were ways I could not touch her without causing her pain–even a hug could be too much. And I could see how little good those injections seemed to be. It hurt me in my soul to see all that and know all I could do was hold her hand and smile and whisper constant encouragement.
She hurt badly enough…
There were times, when I was alone, that I looked at the heavens and said, “If you’re going to take her, do it quickly and be done with it.” I felt guilty every time I said that–truth be told, I still do. It’s a horrible thing to wish for the death of someone you love. It feels like the worst kind of betrayal no matter how much it may seem like the merciful thing to do.
Changing the landscape
We didn’t know, as we got into bed that night, that Jane had just a month left to live. We didn’t know that we would sleep in the same bed just three more times. She was, however, smart enough to make sure we said our good-byes that weekend after her heart surgery was set for the following Monday. She told me she fully expected to come home again–that she would not die from this surgery or its aftermath–but just in case…
It feels like the worst kind of betrayal…
A lot has happened in the 59 months since Jane died in my arms. The landscape of NET cancer has changed in some significant ways. Most of it has nothing to do with Jane’s death or my actions since then. Most of it was already in the pipeline. I’m not sure anything major changes in treatment or research if I had just curled up in a ball around my grief and disappeared.
What I might have done
Part of me wishes I had done just that. Perhaps then I would not still find myself wandering the house–moving from room to room aimlessly and watching hours vanish with no idea where they have gone. Perhaps then I would not have a dozen projects lying around me half-finished. Perhaps then I would have done what Jane asked me to do in that long Saturday conversation where we said good-bye.
The landscape of NET cancer has changed…
She told me she loved me; that she wanted me to find joy in life again, wanted me to fall in love again; that she fully expected me to go on with my life. Instead I dream of her last months and of trying to find her when we get separated in a store or in the woods. I dream she is lying next to me–and then wake up to find my arms wrapped around a pillow.
What we did and what I do
Every day, I get up. I eat breakfast. I read the newspaper. I craft a list of things I need to do.
Then I sit down and try to do the one thing I know really makes a difference: work to bring hope to patients and caregivers. Some days it’s comforting patients; some days it’s trying to figure out how to explain the latest bit of science; some days it’s helping caregivers understand what they are feeling is normal; some days it’s helping those who mourn find ways to cope; some days it’s trying to figure out how to raise a few more dollars for research; some days it’s about trying to build structures that will help people when I can’t do this any more.
…I dream of her last months…
Fifty-nine months ago today, Jane’s body died and took part of my soul with it. Fifty-nine months ago today, I stopped being Jane’s caregiver and returned to the work we had always done together: trying to help those who needed what we had to give.
2:30 p.m.
Jenaleigh Landers lost her father to NET cancer 29 months ago yesterday. Today, she offers this remembrance.
Today is Neuroendocrine (NET) Cancer Awareness Day. NET tumors is the umbrella term for a group of unusual cancers which develop from cells in the diffuse endocrine system.
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For those of you who don’t know me/my story as well, NET Cancer is what took my dad from me June 9, 2013. It is an extremely rare disease, but is becoming a lot more common, unfortunately. It is often misdiagnosed for IBS, Crohn’s disease, peptic ulcer disease, gastritis, other digestive disorders, asthma or pneumonia, and by the time NET tumors are uncovered, it is likely that the cancer has spread to other areas—in my dad’s case all throughout the bones in his body. For him, he experienced excruciating back pain, which he thought was due to traveling for work.
NET Cancer does not discriminate… it can affect people of any age, and can be slow-growing or very aggressive. It takes fathers, mothers, husbands, wives, aunts, uncles, sons, daughters, children, grandparents…
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It is the scariest thing I have had to watch someone go through. My dad’s courage was something I admire every single day.
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There’s not a day that goes by that I don’t think of my dad in some way… his last words… last moments… last wishes… all the memories we made together… our plans… what he would think if he saw my brothers and I now.
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The pain comes and goes in waves, and truthfully, I will never be the same. However, his death has shaped me into the person that I am today. I never thought I could deal with such a loss and eventually learn to share the “good” as a result. I miss you every day, Dad, and I will continue to fight your fight for you. Maybe this is WHY you were blessed with such a stubborn and determined daughter.
2:45 p.m.
The bravest people I know are cancer patients–especially those for whom we have no cures. They volunteer for trials, knowing they may just be getting a placebo or the standard treatment; they get out of bed every day and do battle with their disease; they poke needles into their bodies; and so many of them smile as they face things I have a hard time imagining. They are like soldiers going into battle with no weapons other than a positive attitude against a foe who is armed with every advantage possible–but they go anyway.
But there is also a special bravery in the caregivers who walk into that battle with them. When I chaired the local Relay for Life, we made a special lap for the caregivers. It was the final lap of the year. Very few people were there for it. Most people had already packed up and gone home. But it was the perfect symbol for what happens to many caregivers. Their loved one dies, but they have to go on walking–and they often end up walking alone.
If you’d like to add your caregiver story here–or share your experience with grief–I’ll continue to post those stories here until midnight tonight. Just send them to walkingwithjane@gmail.com.
3:00 p.m.
How brave are NET cancer patients? Here are links to two stories that blow even my mind. The first is by my friend Danica, who lives in California. She’s had to have a feeding tube put in–but I’ll let her tell it. Danica’s blog posts will break your heart.
The second story is written by a doctor in Texas. How many liver operations would you take on? Lobster Man probably holds the record.
3:30
Jennifer Chan, who was Jane’s oncologist, and I collaborated four years ago on a pamphlet aimed at patients who were suffering from Irritable Bowel Syndrome to warn them about the possibility that their IBS might really be NET cancer. We’ve revised it periodically since.
What follows is the draft of the next version of that pamphlet. If you know someone with IBS, please share it with them. Do it today.
Is it IBS? Or is it NET cancer?
Irritable bowel syndrome is a common diagnosis for people who are experiencing pain and bloating in the stomach and intestines. It is often caused by eating particular foods or by stress. Avoiding those foods or reducing stress often eliminates the symptoms of IBS.
But there is another disease with almost identical symptoms that sometimes seems to respond to those same treatments: neuroendocrine tumor cancer — NET for short. And unlike IBS, it can progress into something deadly: carcinoid syndrome.
Symptoms:
If you have had:
▪ severe bloating of the stomach or intestines
▪ diarrhea that lasts more than a few days or that recurs frequently
▪ sudden, unexplained weight loss
▪ loss of appetite
▪ frequent insomnia
▪ frequent flushing or hot flashes (a sudden, brief reddening of the body that feels warm)
▪ frequent wheezing
▪ low blood pressure
▪ sudden onset of high blood pressure
▪ redness or swelling of the tongue or mouth
You may have NET.
What is NET?
NET is a relatively rare form of cancer that often starts in the small intestine, appendix, pancreas, and lung. It has also been found in many other places in the body. Truthfully, the tumors can form just about anywhere.
But unlike a normal cancer that can grow very rapidly, NET typically grows very slowly, at about the same rate as the cells in the rest of your body. This slow growth rate may be one of the reasons traditional forms of chemo and radiation therapies don’t work very well on this disease.
Also, unlike most normal tumors, NET tumors take an active role in the body’s chemistry. A neuroendocrine tumor can produce nearly any hormone or peptide the organs in the body can produce. The hormone most often produced is serotonin, but it can also produce adrenaline, insulin or any of a wide variety of peptides or other hormones.
And those extra hormones can produce any of a number of medical problems, ranging from insomnia to heart disease and eventual heart failure.
What should you do?
If you think you have IBS, and/or two or more of the symptoms above, a blood test for chromogranin A, a 24-hour 5-HIAA urine test, and a CT scan may be able to uncover the disease at an early stage. A special kind of nuclear medicine scan called an Octreoscan may also be available in some areas and can be helpful in some cases for localizing neuroendocrine tumors. A Gallium-68 DOTATOC PET/CT scan is a newer nuclear medicine scan available in some locations for the evaluation of NET tumors.
In many cases, if caught at an early stage, surgery can solve the problem before it spreads and does serious damage to other organs. But the tests are not foolproof. There is currently no way to detect this cancer early with certainty.
Still, for this cancer, early detection and treatment is really the only cure.
This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.
Each year, I ask Jen Chan a series of questions about NETs and the state of the research. I’d planned to post this interview earlier–right after Ronny Allen’s piece on grading and staging of tumors. But as frequently happens on these Mediathons, I get side-tracked by comments and my own thinking. In any event, here is the interview.
What is NET Cancer? How is it different from other cancers?
Neuroendocrine tumors are a relatively rare and diverse form of cancer that arise from neuroendocrine cells that are located in multiple sites of the body, including the gastrointestinal tract, lung, and other organs. They are characterized by variable but often indolent (or slow-growing) behavior.
One important factor that can affect prognosis is tumor grade. Grade is an assessment of the tumor that takes into account markers of cell proliferation seen by the pathologist on a biopsy. Tumors can be categorized as low, intermediate, or high grade. Low-grade tumors are slow-growing, whereas high-grade tumors are faster-growing.
Neuroendocrine tumors are unique because of their ability to secrete hormones. Most neuroendocrine tumors are non-functional tumors, which means that they are not associated with symptoms from hormone secretion. However, some neuroendocrine tumors (10-30%) produce hormones. Symptoms that a patient experiences will depend on which hormone is produced.
Neuroendocrine tumors, particularly ones that start in the small intestine or appendix, can produce hormones such as serotonin, which leads to symptoms including flushing or diarrhea. These symptoms are referred to as carcinoid syndrome.
Some pancreatic neuroendocrine tumors can also produce a variety of hormones such as gastrin, insulin, glucagon, vasoactive intestinal peptide, somatostatin, and ACTH.
Why is it hard to diagnose? What symptoms should serve as red flags for patients and primary care physicians?
Neuroendocrine tumors can be difficult to diagnose because many of the symptoms are non-specific and can be associated with many non-cancerous conditions. Because neuroendocrine tumors are relatively rare, a diagnosis of neuroendocrine tumor may not be considered.
Neuroendocrine tumors are also hard to diagnose because there is not a widely available screening test, such as mammogram for breast cancer or PSA blood test for prostate cancer.
Symptoms that should lead to consideration of a diagnosis of neuroendocrine tumor include unexplained flushing or diarrhea or unexplained symptoms that are associated with hormone-producing neuroendocrine tumors. Many patients may not have hormone-producing NETs; these tumors are often diagnosed during the evaluation of symptoms, including pain, related to the tumor.
Some patients with carcinoid syndrome can develop carcinoid heart disease. The heart valves, primarily those on the right side of the heart, can become thickened and work less well due to exposure to hormones such as serotonin. Heart failure can develop when the heart valves do not work well, and patients can experience leg swelling, shortness of breath, fatigue.
What is the standard treatment for the disease when it is discovered early? What is the prognosis when it is caught early?
When neuroendocrine tumors are diagnosed at an early stage before spread has occurred, standard management includes surgery. For neuroendocrine tumors that are completely removed with surgery, the prognosis is good, and the surgery is often curative. Some smaller tumors can be removed with endoscopic techniques.
What is the standard treatment for the disease when it is not discovered early? What is the prognosis when it is caught late?
When disease is more advanced, the treatment approach is individualized to each patient and depends on many factors such as tumor grade and extent of disease, organ where the disease started, symptoms related to disease, and how much growth has occurred.
Prognosis will also vary from person to person and depends on factors related to the grade and biology of disease, extent of disease, and the health of each patient. Many patients with advanced low to intermediate-grade disease can live many years.
Regarding treatment options for patients with low to intermediate grade disease:
Treatment options can include systemic therapy, which is treatment that can reach and affect the whole body, or therapy that is directed specifically to where the tumors is located. Systemic therapy can be administered in a variety of ways, such as pills by mouth or injections given intravenously, intramuscularly, or under the skin.
For some patients, surgery to remove all or most sites of disease can be considered.
If surgery is not an option and there is limited disease without any disease-related symptoms, some patients may be candidates for close observation. This is the case since some patients with low-grade disease may have very slow growing disease that may not grow significantly for some time. Treatment can be started at the time of progression or development of symptoms.
For patients with symptoms related to hormone production, somatostatin analogs can help symptoms by reducing hormone production. The medications octreotide and lanreotide are examples of somatostatin analogs.
In addition to reducing hormone production, somatostatin analogs also have been shown to slow growth of advanced gastrointestinal and pancreatic neuroendocrine tumors. Somatostatin analogs are commonly used as an initial therapy for patients with advanced neuroendocrine tumors.
For patients with advanced pancreatic neuroendocrine tumors, systemic treatment options also include everolimus, sunitinib, and chemotherapy. Everolimus and sunitinib are two oral targeted therapies approved by the FDA for patients with advanced pancreatic NET; both have been shown to slow growth in pancreatic NET. Pancreatic NETs can also be sensitive to chemotherapy. Temozolomide and streptozocin are examples of chemotherapy drugs that are active against pancreatic NET.
For patients with predominantly liver metastases, treatment directed at the liver can be considered. Hepatic (liver)-directed therapies include surgery, hepatic artery embolization, or ablation.
We continue to study new therapies for patients with neuroendocrine tumors. Clinical trials investigating new therapies may be an option for some patients with advanced disease.
For patients with advanced high-grade, poorly differentiated neuroendocrine carcinomas, platinum-based chemotherapy is often used.
As the disease progresses, what kinds of things do patients experience, physically and mentally?
For some patients, there are no symptoms even when CT scans or MRIs show tumor growth.
For some patients, however, there may be development of symptoms such as fatigue, loss of appetite, weight loss, or pain. Some patients may experience an increase in hormone-related symptoms if there is an increase in hormone production that correlates with disease progression.
Disease progression can also be emotionally challenging. Depression might occur. Patients benefit from the support of family, friends and their health care team. The health care team can consist of many individuals, including oncologists, nurses, social workers, psychiatrists and therapists, and nutritionists.
What is the greatest challenge we face in dealing with this disease? From a patient standpoint? From a medical standpoint?
From a patient standpoint, it can be challenging to find a team of health care providers with knowledge and expertise in managing NET. A multidisciplinary approach is critical to the care of patients NET since NETs are a diverse group of tumors, and our approach needs to be individualized. Depending on the situation, there may be a role for surgery, interventional radiology or nuclear medicine techniques, or medical therapy. When to start and how to sequence therapy may also need to be decided. These are complicated issues, and it is helpful to have multiple people thinking together about each patient.
From a medical standpoint, education and raising awareness about NET remains extremely important. With early diagnosis and intervention, we can hopefully cure more patients and improve outcomes. It is also critical that we expand our treatment options for patients with advanced disease. Compared to many years ago, patients with NET are now living much longer. However, we still need better treatments to control disease and help with symptoms related to disease so that patients can live long, productive lives with good quality of life.
How have things changed with NETs over the last year? What do we know now that we didn’t know then? How has that knowledge changed what you are doing both with patients and in the lab?
In September 2015, the results of three large randomized placebo-controlled trials related to neuroendocrine tumors were announced. All three had positive results that are practice changing and will expand possible treatment options for patients with NET.
1) The TELESTAR study was a randomized study of telotristat etiprate, an oral agent that blocks the activity of tryptophan hydroxylase – the rate limiting step in the synthesis of serotonin. Telotristat was associated with reduction in bowel movement frequency in patients with uncontrolled diarrhea despite standard doses of octreotide. 24-hour urine 5-HIAA levels were lower in patients receiving telotristat – indicating effective inhibition of tryptophan hydroxylase and reduction in serotonin production due to this agent.
2) The RADIANT-4 study demonstrated improved progression-free survival with everolimus in patients with advanced non-functional NET of lung and GI origin.
3) The NETTER-1 study demonstrated improved progression-free survival with the radiolabeled somatostatin analog 177-Lu-Dotatate in patients with progressive mid-gut neuroendocrine tumors.
The results of the RADIANT-4 study and NETTER-1 study are particularly exciting and promising because historically, patients with advanced non-pancreatic neuroendocrine tumors have had limited systemic treatment options. Both of these studies show that growth can, in fact, be slowed and will expand possible treatment options for patients with NET.
There’s been a lot of talk about immunotherapy this year–and one foundation just made a grant to some researchers to look at using it in NET cancer. Can you explain what immunotherapy is? Is there cause for optimism about its use in carcinoid/NETs?
Immunotherapy is treatment designed to enhance the immune system’s ability to recognize and attack cancer cells. The outcomes of patients with some forms of cancer, such as melanoma, have improved dramatically through the use of immunotherapy.
Given the favorable results and advances that have been seen in other tumor types, it is important for us to understand the immune characteristics of neuroendocrine tumor cells and to investigate the role of immunotherapy in the treatment of NETs.
What is the most promising thing you see on the near horizon?
Several large clinical trials investing novel treatment approaches have recently been completed. We are awaiting the results of these studies, all of which have the potential to influence treatment options for patients in the future.
Recent translational research has also provided new insight into the biology of neuroendocrine tumors. For example, a recent gene sequencing study suggests that dysregulation of the cell cycle may be important in the etiology of small bowel NET. As we understand more about the factors that drive the development and growth of neuroendocrine tumors, we hopefully will be able to find new targets for therapy.
Additional research also needs to be done to better understand why some people do and do not respond to certain therapies. Results from this investigation may help us to select the most appropriate therapy for each individual patient.
4:45 p.m.
The Carcinoid Cancer Foundation is doing a live chat on Twitter that I just remembered was there. Follow the #NETCancerChat to see what is going on there.
I’ve been running as hard as I can with my head down all day. We’ve posted over 15,000 words–not counting the posts we’ve sent people to since 6 a.m, this morning. I just went out for a few minutes, figuratively speaking, to check on what else is going on in the social media universe having to do with NETs.
It’s a jungle out there. More than half the posts on my regular Facebook page are about NETs–and while I’m not seeing as many Zebra-themed profile pics as I’d like, the content of posts is certainly making up for that.
I have more patient profiles to post, some bits on the NET Research Foundation and the Carcinoid Cancer Foundation, a couple more videos to share, and one major announcement about a new project I am holding of on until prime-time. Do people have suggestions about where they’d like to go next? What other kinds of things they’d like to see? You can comment here or drop a line to walkingwithjane@gmail.com. A PM would work as well.
What’s your pleasure, folks?
5:oo p.m.
Linda’s story of her diagnosis is too familiar to anyone who has been around this disease very long.
What is your name? Linda
Where are you living? Cincinnati, OH, USA
Describe how you found out you had NETs.
I had Multiple Pulmonary Embolisms in April 2008. The next month, and several more times that year, I made additional trips to the ER because I was short of breath. I was told at each of those visits that I did not have any more embolisms and was treated for Asthma.
I was 54 years old that year and had never been diagnosed with Asthma. Also, I had never been short of breath like that. In December, after yet another ER visit, I was told that I had lung nodules. They had been seen on my first chest CT in April 2008 and was finally given a referral to a pulmonologist.
The pulmonologist was not worried about the nodules because they were small. Also, not many doctors in this area have met anyone with Lung Neuroendocrine tumors. Current protocol has been that there must either be persistent growth on two sequential CT Scans or the nodule is greater than 1cm (10mm). As my CT Scans were just a few weeks apart and my nodules were initially 5mm and 8mm, they were not considered to be of any consequence.
What problems did you have getting the right diagnosis?
After three years of waiting for someone to figure out why I suddenly had asthma, I started researching the possibilities in PubMed. As a U.S. military and college trained Information Technology person, my first thought was to do a spreadsheet of all the CT Scans that had been done. Eureka! There was the answer. Very, very slow but steady growth that appeared to follow the guidelines for Neuroendocrine Cancer.
I then contacted yet another pulmonologist who, very excitedly, agreed that my spreadsheet did, indeed, indicate that there was growth. Further testing concluded that I had Atypical Cells with Neuroendocrine Features and so the first VATS was scheduled.
When were you diagnosed? November 2012
What problems does your NET cancer create for you?
I still have pain from the first surgery that has slowed me down quite a bit because it is not very well controlled. I am on Gabapentin. I have also been using either an Ace Bandage or a heat wrap designed for lower back pain wrapped around the lower part of my lungs on that side.
What is your typical day like dealing with NETs?
I try to do as much as I can as quickly as I can because I know that when the pain kicks in, I will not be able to do any more. The pain takes my breath away and also wears me out. Unfortunately, this is not the only health issue I have. It does make it complicated for the doctors to treat me.
What treatments have you had?
I have had two surgeries to remove three tumors in my lungs. The first one was in November 2012 for a Left Upper Lobe Wedge Resection via VATS to remove two tumors that were 7mm each. The other surgery was this past March to remove my Right Middle Lobe to remove the 1.4mm tumor there. The tumors are not considered metastatic because they were all seen on the initial chest CT scan in April 2008 and were small. So, I have been diagnosed as being Multi-Focal or Multi-Synchronous.
Did they work for you?
I am currently considered to be NED (No Evidence of Disease). There has never been any sign of anything other than the three tumors that were removed. I am somewhat lucky compared to so many others because these tumors were found accidentally and while they were quite small.
What kinds of side effects have you experienced from treatment?
The only bad side effect has been the pain. The big benefit is that I am only short of breath when I try to push through the pain. The Asthma is completely gone. In fact, it has since been diagnosed as Carcinoid-induced Asthma.
How does where you live affect your ability to get treated for NET cancer?
I am near Markey Cancer Center at the University of Kentucky where there is a Neuroendocrine Cancer Team. http://ukhealthcare.uky.edu/markey/neuroendocrine/ I have been seeing Dr. Edward Wolin this past year, but he is moving to New York and so my care will be transferred to Dr. Lowell Anthony. Prior to this, I had seen Dr. Eric Liu one time at Vanderbilt University, but he is now in Denver, CO. So, I have been very lucky to have been and continue to be seen by NET Specialists since my first surgery. Unfortunately, there is not a Neuroendocrine Cancer Team here in Cincinnati with the experience that these physicians have.
What is your biggest frustration?
My care is spread between my doctors here in Cincinnati and in Lexington. Since I have multiple health issues, I see a pulmonologist, an endocrinologist, a gastroenterologist, a neurologist and my primary care doctor here. I see the thoracic surgeon and the NET Specialist in Lexington. This means that I have to carry copies of my records between the different doctors. It also means that there really isn’t much communication between here and there. However, I know that I am very lucky to be able have the benefit of the experience of the NET Specialists that I have seen.
5:15 p.m.
Some pure, blue-sky speculation follows. This is probably a stupid question, but then only stupid people don’y ask stupid questions.
Something has been bothering me for a long time that this story reminds me of. Many NET patients have more than one serious illness going on–and some have several. My mother-in-law died of pulmonary fibrosis, a supposedly rare disease. Yet I know several NET patients who have pulmonary fibrosis. And I know more than one NETpatient with MS.
That seems peculiar to me. It may be coincidental, of course. I haven’t done the statistics to tell me how probable either case is–I’m not sure my math skills are up to the task in any event. And no one would listen to me if I did the statistics–I am, after all, an English major. But maybe someone should think about this.
5:45 p.m.
The Caring for Carcinoid Foundation has a new name this year and a new website. They’ve always been very professional in their approach from what I’ve seen. Their new logo and website design underline that professional vision. They are now the Neuroendocrine Tumor Research Foundation–or the NET Research Foundation for short.
They are currently funding the trial of an immunotherapy drug for NET patients. It is an expensive, but important undertaking.
Ron Hollander is their director. He asked me to post this release he sent me for NET Cancer Awareness Day.
Each year, the greater NET community uses NET Cancer Awareness Day to raise awareness about NETs and the need for timely diagnosis and access to optimal treatment and care. The NET Research Foundation is proud to be a member of the Board of Directors of the International Neuroendocrine Cancer Alliance (INCA), which is coordinating this effort worldwide.
In honor of NET Cancer Awareness Day, we are highlighting our commitment to making a difference and transforming the landscape of neuroendocrine cancer research. We have proposed major initiatives to shape our project portfolio and push research progress to new heights over the next year. We have been purposeful to direct our research initiatives to produce results to understand how neuroendocrine tumors tick and how to defeat them. We are committed to:
Understanding tumor biology to discover possible biomarkers, targeted treatments and tools for earlier diagnosis;
Building a strong bench of committed researchers through grants and awards to support young investigators and emerging research talent;
Leveraging exciting developments in cancer immunotherapy and potential targeted therapy breakthroughs in other cancers, and bringing the leading techniques and experts to the work to control and cure NETs;
Providing objective, valid and actionable information and guidance to patients and families dealing with neuroendocrine cancers.
Help us spread the word about NET Cancer Awareness Day to give hope for the future to patients suffering from neuroendocrine cancer. Visit our new website to learn more about our impact on NET research.
And let me tell you, the new website is cutting edge. They group has been very good to Walking with Jane from the time we started to now. If you want to support their research, you could do much worse. I send them what I can every year.
Among their projects is an immunotherapy initiative that is really interesting and has enormous potential to make a significant difference. It is the only idea I see being actively pursued that has curative potential.
6:30 p.m.
Sorry for the unannounced extended break, but it occurred to me as I finished that last post that I was feeling a might peckish. Then I released that I’d had a bowl of cereal and glass of OJ about 5:30 a.m., a tuna salad sandwich and some grapes around 1 p.m. and had barely moved from the chair I’ve been writing in most of the day.
Do I fixed myself some dinner and am now ready to confront the final 5,5 hours of this excursion into the underbelly of NET cancer and the dark recesses of my mind. I hope more than a few of you will hang around for the night–and that you’ll all recruit a few more likely listeners to help the next few hours feel less empty.
Let’s meet Angie, next. She’s a 46 year old patient from Des Moines, Iowa.
I was diagnosed with neuroendocrine carcinoma in Feb after having about a week of dull, but annoying pain in my right abdomen area, and “self diagnosing” a gall bladder issue. An ultrasound ordered by my family doc showed “multiple lesions on my liver.”
She referred me to a local oncologist and I had a liver biopsy a few days later. I also sought a second opinion at the Mayo Clinic and they agreed with the diagnosis.
A typical day for me very much depends on where I am in my chemotherapy cycle, since this is my only treatment option so far. In March I began getting Cisplatin & Etoposide chemotherapy every three weeks. Side effects were mainly fatigue and taste issues, very little nausea, I lost my hair, and by round four we stopped this combination because the Cisplatin caused severe hearing loss/ringing in my ears. I now wear hearing aids.
This was followed by two rounds of carboplatin & Etoposide. CT scans were done every two rounds and tumor shrinkage was shown with each scan. I took about ten weeks off from chemo after that, went back to Mayo to see a different doc (a true NET specialist), then started having some pain again.
I then started a new chemo combination of taxol & carboplatin and am on round three. Taxol is nasty! More fatigue, some nausea, very uncomfortable muscle/joint pain, neuropathy in my feet. It kicks my butt for about a week, then I start to feel great (which I’m very grateful), just in time to get ready to do it all over again!
I actually feel very lucky that I was diagnosed quickly, even though mine is high grade and fast growing. I love my local oncologist and feel fortunate to only be three hours from Mayo and about an hour from the University of Iowa hospitals.
My biggest frustration has just been the confusion associated with this cancer, trying to learn all I can, hoping I’m making the right decisions about treatment, and just knowing it is treatable but not curable.
6:45 p.m.
The Carcinoid Cancer Foundation is likely older than all the rest of the NET cancer foundations in the US combined. It was formed about the same time the federal government decided funding what was then called carcinoid cancer was not cost effective. For four decades, they were pretty close to the only game in town for funding research or raising awareness about NET nationally.
They seem more focussed on awareness and patient support than on research at this point if you look at their website. But they do an exemplary job at those two things. They fund patient conferences where lay people can find out the latest NET information, help people find the nearest doctor who works on NET cancer, provide support groups and other resources. They know their stuff–and they are on my very short list of NET cancer groups I give money to.
Patients would be lost without them. But they also provide information and support for doctors trying to help patients get through the mess that is NET cancer.
They, too, were very supportive when I started working on Walking with Jane. They helped us set up interviews for our first big NET cancer awareness project back in 2011–and when i have a question, Grace Goldstein, their director gets back to me with information worth its weight in gold. Again, if you have money to donate, this is a good home for it.
7:00 p.m.
There are a number of other small foundations working on NET cancer. Honestly, none of us are in the same league with either the Carcinoid Cancer Foundation or the NET Research Foundation. We simply don’t have their experience, their staff, or their national reach. Any one of us could likely piece together a regional conference if we needed to and have one or more of the big names who will answer our phone calls or emails.
But small as the NET community is, pulling in a significant group of national figures is well beyond what Walking with Jane could pull off. And I’m not sure how much else we could do that year beyond that effort. Walking with Jane is really largely a one person operation that can call on a good-sized group of volunteers for a few hours every month. But if letters are going to get written or posts get made or posters designed, that largely falls on me most of the time.
And I suspect most of the rest of us are in the same boat. We are doing what we can, but our fundraising reach and real areas of influence are regional, not national or international. I suspect we all aspire to be national or international in scope on down the road, but we are not there now.
And I have to admit, I find the process wearing. I don’t like begging for money. I don’t like spending all day every day confronting the disease that killed my wife. I do it because it needs doing–not because I enjoy doing it most days.
I do like learning new things. I like the fact I’ve had to n]master a number of new skills. And I know that it prevents me from lying in bed staring at the ceiling and wishing Jane hadn’t died and imagining the life we might have had–all of which would depress me more than words can say.
7:15 p.m.
Late last year, shortly after NET Cancer Day, I took a good hard look at the NET cancer universe–not as a doctor or researcher–but as a marketer and organizer. I wrote a series of posts in which I argued for a whole range of ideas about how we could make the landscape better for researchers in terms of resources by rethinking how we were approaching what we were doing.
At the end, of that process, I wrote up a collection of goals for all of us working on the NET cancer funding and awareness problem. Much of what I wrote fell on deaf ears, I suspect–but a lot of people read those ideas and thought about them. At least I hope so.
One of the things I suggested was that each of the smaller foundations adopt a NET cancer center in its region to develop support for. Late last summer, Dana-Farber came to a similar conclusion about needing to put together a group to better support its Program in Neuroendocrine and Carcinoid Tumors. We held an initial meeting in early September that included Matt Kulke, who directs the program, Hillary Repucci from the development office, a patient with a business background, and me.
Matt had put together a presentation about what the program could do if it had the resources to do it. We take about a range of issues and I came away with a real positive feeling, in part because Matt was talking about exactly the same idea I’d hatched myself 10 months before.
7:45 p.m.
By now, you’ve figured out that I have a special relationship wth the Dana-Farber Cancer Institute and its Program in Neuroendocrine and Carcinoid Tumors. If you are a regular on walkingwithjane.org, you know how tight Jane and Jen Chan were from the start. And you may remember that, periodically, Jen and I sit down and have a good cry over our loss of Jane.
I am not one to put all my eggs in one basket–thus my ongoing support of the Carcinoid Cancer Foundation and the NET Research Foundation. But the lion’s share of my effort finds its way into the DFCI coffers when all is said and done.
And my support is not based purely on an emotional response. DFCI’s fingerprints are on one of only two NET cancer cell lines ever developed, on all three of the drugs at the top of the NET treatment list, and on a couple of other things as well.
The fact they are only 50 miles from my front door doesn’t hurt either.
So after our early-September meeting, I drafted a plan for what such a group might look like and do. I doubt the entire plan will ever be adopted–its scope is likely too large to really work the way I’d like it to; and it is a bit scary even to me looking at it now. But basically, it called for a team that would work like a high-powered board of directors–though without that kind of management authority. Each member would chair a subcommittee with a specific charge.
I reproduce that set-up here as a thing for others to think on in the hopes it will spark at least some conversation–and encourage through a concrete example the kind kind of thing I was thinking about last winter.
The group would be structured into the following sub-committees:
Steering Committee. This group is charged with planning the agenda for team meetings and overseeing the work of the various other committees. Membership should consist of the team chair(s), the head of the program (Matt) or his/her designee, other team officers—co-chair, secretary, treasurer (?), and the person from development responsible for the Program (Hillary).
Major Donors Sub Committee. This group is responsible for cultivating potential large donors, both corporate and individual. The group should create at least one presentation/slideshow for major donors. The chair or co-chairs serve as ex officio members of the committee. Hillary should be part of its meetings, as should someone from the Program.
Annual Giving SC. Create and maintain a list of smaller donors and develop an annual campaign based on letters and a mass mailing. Develop other methods of reaching this group. Perhaps this group should have as part of its charge running the Marathon Walk team.
Event Planning SC. This group is responsible for planning fundraising dinners, tournaments and other events. It may also plan awareness events in conjunction with the Awareness SC below. We should aim to develop at least four significant fundraisers each year. These might include developing teams for the PMC, Jimmy Fund Walk and Boston Marathon. Hillary or someone else from development should be a member of the committee. The chair or co-chairs serve as ex officio members of the committee.
Priorities and Critical Needs SC. This group exists to lobby within DFCI for such needs and priorities as seem important. For example, we should be taking steps to make the octreoscan and the Gallium 68 scan available to our NET cancer patients. I agree, this committee should not be raising money for these, but we need to argue effectively within DFCI for these kinds of things. It could also press for more people on both the clinical and research sides of the equation. Matt or his designee should be on this committee. The chair or co-chairs serve as ex officio members of the committee.
Awareness SC. This group works on creating general awareness of NETs both among doctors and patients. It is charged with organizing a lay conference and a conference for PC doctors—perhaps on an every other year basis. It should also create and distribute pamphlets about NETs. (I have one in hand and could easily create a second.) The chair or co-chairs serve as ex officio members of the committee.
Science SC. Reviews the science and advises on what pieces of research would be most useful to report on to the larger group. Looks for synergies in the global research that further research could exploit. The chair or co-chairs serve as ex officio members of the committee.
Communications and Public Relations. In addition to cultivating media contacts and organizing press focussed events, the group puts the latest research into laymen’s terms. It also works on public service announcements for various media. It should create a November 10 package of stories in several media for NET Cancer Awareness Day in conjunction with the Awareness SC. It should develop a speakers bureau and actively market that to the various civic organizations: Kiwanis, JayCees, Lions, Elks, etc. It should have a representative from DFCI’s communications group involved. The chair or co-chairs serve as ex officio members of the committee.
These groups meet as needed, but at least quarterly. The majority membership of the subcommittees should likely not be people on the Program team.
Other things we need to think about:
Develop a Sustainer model for annual giving.
Explore ways to use the Jimmy Fund Radio Telethon to raise awareness of both the disease and the Program.
Examine our current program for patient advocacy and support to determine whether the services we offer are sufficient and how they can be improved. What do patients and caregivers need that we are not currently offering? Perhaps this should also be a standing committee.
8:00 p.m.
We arranged for several potential members of this group to sit together at the Annual Visiting Committee Dinner in late October. There seemed to be some interest in pursuing the general idea, although the detailed structure outlined above was not raised.
In December, we will pull together a somewhat larger group of potential members. We are in the process of discussing who to invite and what the agenda for that meeting should look like. We’ve also had some discussions about potential goals for the group.
Over the next week or so, I will begin putting together a draft slide-show for the group for that meeting.
We’ll see how this evolves and where it goes.
And that, friends, is the major announcement I teased late this afternoon. What do you think? Is this a potential model for other NET cancer centers?
Hillary, I hope I haven’t gone too far here.
8:15 p.m.
Jillian is a member of our Marathon Walk team. This is her story.
How I found out I had NETs: I began flushing one day after breakfast. It was mostly after eating, but there were other times of the day that it would occur as well. One day, it just appeared out of the blue with no other symptoms.
It took a handful of doctors across two states before I had a diagnosis. Doctors said everything from, “drink more orange juice” (thinking it was blood sugar related) to “you can’t have NETs because you don’t fit the profile.” Even when my tests were coming back positive, it took scans for some doctors to actually believe it. One doctor dismissed the possibility simply because he said it was rare and he had never seen a case.
When were you diagnosed: fall of 2008
Problems NETs creates for me: I have to be careful not to get myself in really stressful situations because such situations elicit syndrome symptoms for me.
For treatment, I get monthly shots of Sandostatin LAR. I had major surgery in 2009, and I had two chemoembolizations done early this year. The treatments have all worked for me. Side effects from the chemoembolizations were nausea, vomiting, weight loss, severe back pain.
How does where I live affect my ability to get treated? Currently, living in New England, I have easy access to Dana-Farber which has been really nice. Previously, when I lived in Hawaii, it was really problematic. I had to fly to the mainland for my surgery.
My biggest frustration: Lack of control. I’m a go-getter and I feel like I can’t really be that in person right now. I worry that I’ll have a syndrome flare up if I get at all stressed.
8:45 p.m.
Patient stories with this disease are frustrating. Doctors don’t see it–and even when they do, the deny it. They don’t want to believe what the tests are telling them–and I don’t understand why. For example, I give you Jacquie Prevette
I have been diagnosed with metastatic pancreatic neuroendrocrine cancer. I am married; the proud mother to 3 very lovely daughters, and Nana to 13 (the youngest is 3 months old). I would give ANYTHING just to be able to dance at my youngest grandchild’s wedding.
My story begins with a different type of cancer, Clear Cell Renal Cancer. It was during the removal of the Kidney cancer that the surgeon located a small tumor in the mesenteric. My family and I were told it was nothing to worry about. This was July 2013.
It was not until my first visit with a local oncologist that I realized this was something I needed to research.
At the time of my cancer diagnosis, I had been a caregiver to my twin who has metastatic rectal cancer. His care took most of my day. So it took a while to find information on the website.
After a year, I finally suggested to my local oncologist that I probably needed some standard testing done…My Chromagranin A was through the roof, but other tests (blood and various scans) have came out negative. My local oncologist was happy with those results and didn’t want to see me for another year.
After more researching and traveling from IL to TN and then from IL to IA (sometimes by myself), I have found a doctor that understands the disease. I am not sure I am with the doctor I need to be with…there is one in CO that was the first doctor that I found on the internet that helped me to understand this disease a little better.
For me, the worst part of having this disease has been the fact scans have not been able to locate the primary tumor. It is my understanding that my prognosis is way better if they are able to remove the primary.
I do not have all the symptoms of Carcinoid Syndrome…I do have multiple bowel movements that limit my activities. Sometimes depression sets in…not the kind where I want to end my life. The complete opposite really.
I am at my heaviest weight; have constant pain around the pancreas area through the back; extreme GERD; and sometimes nausea.
Sometimes it is very frustrating to feel so awful…but look fine. A lot of people I care about do not understand. At times I feel they do not believe I have cancer at all. I am scheduled to have the Ga-68 scan the beginning of the year. This scan will cost $6k..but if the tumor(s) are located, it is well worth it.
On another note, I have found a new local oncologist…but I have to drive 45 miles to visit.
9:00 p.m.
Here’s a short video on telotristat etiprate that was made before the release of the latest study. But it does a good job of explaining the process of all the trials that have put the drug on the edge of FDA approval.
Here is a really good explanation of NET cancer from the Royal Free Hospital in London. I’ve seen a lot of these in the last five years, and this may be the best I’ve seen in terms of making the disease clear to a lay audience. The guy is really good. It is a bit long–a little over an hour–but the man is entertaining as well as very knowledgeable.
10:15 p.m.
High grade aggressive NET is about as bad as things can get. There is no such thing as a good NET as far as I’m concerned–but this type is really awful.
Hi my name is Angie. I live in North Huntingdon, Pa., a suburb of Pittsburgh. I was diagnosed with Stage 4, High Grade Neuroendocrine Carcinoma on Oct 4th, 2014. My life has not and will not ever be the same.
For over 10 years my health status was declining. I had a hystectomy because of fibroids, endometriosis and painful menstrual pains. B-12 and D3 vitamin deficient, wheezing and other respiratory issues, Rynauds Syndrome, diverticulosis, diverticulitis, polyps, increased B/P, palpitations, flushing, diarrhea, constipation, night sweats, insomnia, sleep apnea and increased anxiety because of all these health problems.
My PCP could not think outside the box. Every time a health problem would arise, I was sent for more testing and sent to more specialists. Just another diagnosis added to the list of many.
On Oct 1st I decided to go to the ER. My stomach was distended and my right leg was triple the size it normally is. For 2 days of testing, scans, a colonoscopy and a liver biopsy. The pathology report came back. We knew it was NET but there are various levels of NET.
On the night of Oct 4th, my Oncologist came in to talk with my Husband and I. He said it is not the scenario that we were hoping for. You have Stage 4 High Poorly Differentiated Grade Neuroendocrine Carcinoma(NEC). It’s aggressive, rare and there aren’t many options. Chemo and radiation are the options. You can’t have surgery because in the time it takes for you to heal, you will have even more tumors every where. My Husband and I cried, we held each other and wept. These weren’t the answers we wanted.
It took me a few days for the news to sink in. I decided at that point that I will stay POSITIVE! FIGHT this cancer with everything that is inside of me. GOD is in control, not these doctors!
It’s been a year of three different kinds of chemos. Two months in the hospital, pain, fatigue, neuropathy, pulmonary embolisis and dehydration. The tumors have responded somewhat but my liver tumors have doubled and I now have Mets to my brain. I had radiation on Friday.
I’m not with the same Oncologist that I started with. No disrespect, but he wasn’t a specialist. I’m at Hillman Cancer Center, in Pittsburgh. With a Specialist that was recommended by a surgeon that was recommended. They have no other ideas than what we started with. I was told last week that I have one more chemo to try and that is it. This is NOT acceptable to me!
I researched NET specialists. None of them specialized in NEC. Until finally, I found a NET specialist that also specializes in NEC. He’s a “Rock Star” He has practiced all over the world. He has doctor privileges every where. He is the BEST!
My Husband and I flew across the United States to meet with Dr. Eric Liu. I was told he was booked for months but because of the severity of my case they would see me.
Yesterday I had to drop off all of my medical reports and Cd’s. The atmosphere at Rocky Mountain Cancer Center was calm and tranquil. Everyone we met was very helpful. The Dr. Liu’s, administrative assistant, Doni, has been amazing. He met with me yesterday and he could tell I didn’t feel well. He went and got Dr.Liu’s RN, Pam. She assessed me and my vitals. We both knew I was in crisis.
We talked about when this happened before and she just relaxed me. We went to Dr.Liu’s office. Dr.Liu came in. “Good job on Pittsburgh winning!” What?! He already knows me! He told his RN to have my Sandostatin shot authorized by my insurance because it was due to be administered in a few days. Dr. Liu is a very kind, compassionate, brilliant and humble man. I can’t wait to sit down and discuss what options are in the toolbox still. My appointment is tomorrow.
Through this fight I have stayed positive! Attitude is a EVERYTHING! I have been blessed with the very best support system, my friends! The number one thing in my life is GOD! He has a plan for me. I have to be obedient and follow his path for me. LIVE like it’s your last day! Laugh until you pee your pants! LOVE with all of your heart!
Today is NET awareness day! Every day should be NET awareness day! “IF you don’t suspect it, you can’t detect it” My case is rare. If I would have been diagnosed sooner, my life would have been different. Please EDUCATE and be AWARE of this disease!
Thank you for reading my story. God bless you!
10:30 p.m.
Don’t ask me how I’ve managed this, but despite having posted more than 6000 words more than we did a year ago and several more and longer videos, we are still 90 minutes from midnight. I have a couple things left, but without some help in terms of comments and things to play off of, this next hour and a half is going to be a little tricky.
Next year is 12 months away, but I’m already thinking about how to make things better. I hope that next year we will find a way to go 24 hours rather than 18. One way to do that is to recruit some folks in other time zones to take on the first six hours.
I’m also thinking a co-host–or having a number of co-hosts join me over the course of the day–would liven things up. As I’ve noted above, having someone responding to what I’m saying and doing helps keep things moving, We had some of that early in the day, but far less of it tonight–and it makes a difference–especially in these final hours when I’m beginning to have trouble piecing words together. My typing skills also seem to decline the closer we get to midnight.
If you think you might be interested in helping out next year, let me know.
10:45 p.m.
Vicki Harris Living in Duncanville Tx. I was diagnosed after being in the hospital with Pneumonia. Going on 3 years ago I was diagnosed with A-typical Lung Carcinoid. I am still trying to get care. I am without any insurance. My typical day includes worrying about how to get care. Now having bad bone pain, so really concerned.
I don’t have a lot of symptoms right now. Some wheezing. Get tired easy. But now I’m having severe pain on the side of my hip. Can’t walk good. Getting worried about that.
Vicki’s story raises an issue I went into a lot of detail about a year ago–and then discovered that what I was being told by some organizations was true wasn’t.
This year, not a week goes by that I don’t get a post from someone asking for help funding their cancer treatment through a gofundme or similar account. I know from talking to many patients that Obamacare was an improvement over the little or nothing they had–just getting rid of pre-existing conditions language helped. But too m any people are still without health care.
I know some folks will accuse me of being a socialist, but I don’t care. The longer I deal with cancer patients the more I am convinced that national health is an idea whose time has come. A month’s supply of octreotide was $58,000 in 2010. A single Sandostatin LAR injection today runs about $10,000, depending where you are.
Jane and I were fortunate enough to have really good health insurance. Knowing what we spent on her care the last four months of her life, I know I would be living on the street if I’d had to pay all that–or even a significant fraction of it.
Something to think about.
11:00 p.m.
I recorded this two years to explain why I do what I do. How I feel hasn’t changed in that time. The good news is some things are changing that mean the outlook for others is getting better.
11:15 p.m.
Ronny Allen really does a great job of talking about his experiences with the disease. If you want a site to subscribe to. Ronny’s is one. Here is another of his clear posts about the fundamentals of the disease. It serves as a good review of some of the major things we’ve talked about today.
11:30 p.m.
So here we are, coasting to the close of another NET Cancer Awareness Day on the East Coast of the United States. My neighbor are sleeping and many of those who started the day with us at 6 a.m.–especially those in Europe–are as well.
Every year at this point there is a bit of depression in my soul. I look at the numbers–the number of words posted, the number of comments and likes, the number of people in the audience–and I wonder whether all the stress and effort was worth the trouble. Did we reach enough people–make substantial differences–or even small differences in their lives.
I know one patient who understands her husband better because of one piece of today’s work. I know a couple of caregivers who are relieved to discover they are not monsters because of the anger they sometimes feel.
And I know there are some patients and caregivers both who learned about a new treatment or two that are not in the too distant future. They have renewed hope that the dream of seeing a son or daughter graduate or get married isn’t as unrealistic as they thought was when the day started.
But I wanted to do more today–wanted to discover more. I had hoped to be reporting on the Uppsala virus in some way, shape or form. But that cancer-eating virus seems to have slipped beneath the waves of a distant fjord without sound or notice. Maybe next year.
11:45 p.m.
I’d also hoped for more information on immunotherapy. I’ve heard a single whisper on that–and everything in that whisper was contradictory. It will either work or it won’t. For now, I’ll view at as a deep pass that is still in the air. It may prove to be a touch down–or it may fall incomplete. Five tears of watching and waiting have brought me to a point where neither the possibility of success nor the possibility of failure gets me very excited.
I want to thank everyone who helped today–and there are dozens of you–from the ones who simply said thank you to those who wrote things to those who passed along links and videos. I get to play front man today, but none of this exists without the many of you who take the time to read what I write and those of you who let me borrow your words and work.
People tell me that Jane would be proud. I don’t know whether she would be or not. I disobey her last requests every time I run into this wall that is NET cancer. I just know that I am doing the best I can in the tradition we both observed–embracing the good of the many.
Walking with Jane raised no money today. That wasn’t part of the plan. But I know we raised some spirits today and gave some people some hope. That’s the thing that really matters.
I’ll be back in just a few minutes with tonight’s final numbers. See you then.
11:58 p.m.
We did well today, according to the metrics. Our total audience was well over 6000 once all the numbers from the various site were added up. walkingwithjane.org had 526 visitors from ten different countries. We generated over 700 likes and comments.
I’ll let our last commenter have all but the last word here tonight. This is from Linda, commenting on the caregiver piece.
I know most caregivers do not want to discuss what they go through, including my husband. But, I see him sitting hour after hour in the most uncomfortable chairs ever created just to be with me. He has his own health issues. But, he keeps putting my care before his. Even when I keep nagging, he will only take care of himself after he is sure that I’m ok.
As I read what you are doing, I see him. You are a very compassionate person. I see where you have done much of the same through all of those long waits in ERs, surgical waiting rooms, doctor’s offices, and all of the different types of testing we go through. We go to sleep and wake up confident that the one we love most will always be there. It gives us the strength to go on when we find it to be difficult.
So, we all thank you for continuing to support the fight!! In many ways yours is the more difficult part of this battle.
Dr. Matthew Kulke, who heads the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute, calls 2010-11 a watershed moment in NET cancer. Results on the trials of Everolimus and Sunitinib were released, leading to their approval by the FDA for pancreatic NETs; trials were gearing up in the US for PRRT, the radiation treatment long in use in Europe for alleviating NET cancer symptoms, but about which questions remained in the US; the first cell lines for NETs were in development both in vitro and in vivo.
…every day brings a greater understanding…
If 2010-11 was a watershed moment in NET cancer history, 2015-16 may prove a true turning of the tide moment. The announcements and events of the last few months create new hope for every NET cancer patient. They range from substantial new research grants to significant drug trial results to a potentially entirely new understanding of how neuroendocrine tumors grow and develop.
Five years of growing change
When Jane was diagnosed in August of 2010, I read everything I could find on the topic. A Google search turned up barely a page of references–and some of those were duplicates. The day before Jane died, her doctor told me Jane’s case alone had doubled our knowledge of the disease. We spent about as much on treating Jane over those four months as was spent on research in the US for that entire year.
…a true turning of the tide…
Last month, more than 25 presentations were made at ECCO in Vienna on NET cancer–including a pair of featured presentations. We will spend more than four times as much money on research into NET cancer in the US this year as we spent in 2010. There is reason to hope.
Funding matters
In September, the NET cancer group at Iowa University received a SPORE Grant from NIH to study the “genetic and molecular composition” of neuroendocrine tumors with an eye toward developing new diagnostic techniques and treatment of the disease.
Results of the international PRRT trials, which included a number of US sites, were released at ECCO last month and could lead to FDA approval of that technique within the next year. Among the findings was a method of determining who the therapy would work well on.
…working to increase private funding…
Meanwhile, everolimus, already approved for pancreatic NETs, moved closer to FDA approval for gastrointestinal NETs as a result of the RADIANT-4 Phase III trials; telotristat etiprate, as reported here and in August, also will likely win FDA approval next year based on its recently completed TELESTAR trial.
Future matters
And these are just the highlights of the last few months. There are whispers of even bigger things on the near-horizon. Nothing looks like a cure yet–but every day brings a greater understanding of the disease and how it works, as well as new ideas for treatments that will not merely extend patients’ lives, but improve the quality of those lives as well.
…could lead to FDA approval of that technique…
We’ll look at all of these things–and much more–in more detail during the November 10 Walking with Jane Social Mediathon, which I am trying to get ready for. Stay tuned.
There are lots of different hands working on NET cancer issues–and we are beginning to see an increase in knowledge as a result.
I went to the cemetery yesterday morning. I go there every Saturday, usually in the morning. Jane and I went there most Saturday mornings when she was alive. We went to her mother’s grave. Her mother always liked to hear people talking, so we would talk there. It was always quiet.
They are words–and nothing more.
We would water the flowers we took there. We would water the flowers on other nearby graves if they looked dry, pick up the vases and pots that had fallen over in the wind. We did not stay long on any given day–and less on days when it was cold or rainy. Her mother, Jane would say, would understand.
Engraved words
Some day this week, the engraver came through. He incised the date of Jane’s father’s death on the stone and added the date of Jane’s death at the same time. It’s been nearly five years since Jane died–and I kept forgetting to have the date of her death put on the stone. Her sister suggested we do it when her father died.
We did not stay long…
I admit that I’ve avoided doing that–not so much consciously as subconsciously. Nearly five years of weekly visits, nearly five years of visits on the tenth of each month, nearly five years of visits on her birthday, on our anniversary, on Valentine’s Day–on all the small dates of remembrance that make up the memories of a marriage–and I have not yet really come to terms with her death.
Impact of words
I saw those words on her grave yesterday and I cried. Once again, I was back on the day she died, on the day we buried her, on the day she was diagnosed, in the waiting room of the hospital on the day she was operated on, in her room during the onset of each of the carcinoid attacks and comas, and holding her hand through that long last day when there was no longer any hope.
…I’ve avoided doing that…
I visited my sister-in-law afterward. She said she thought this would finally give me closure–finally let me accept Jane’s death and move on with my life. Part of me hopes she is right. I’d love to stop crying out of nowhere; I’d love to stop having days where I wander aimlessly from room to room thinking I need to do the laundry, vacuum the floors, write this letter, draft that article. Then I look up and the day is gone and nothing is done.
Speaking of words
But I also know she is wrong. I know too many people who have suffered this kind of loss. One of my neighbors lost her husband more than 15 years ago. The tears still hit her. The aimless days still come. It still hurts. Nothing cures this. There are only things that mask the symptoms for a time. There are only coping mechanisms we get better at employing over time.
…the day is gone and nothing is done.
Sometimes, Jane and I would look at the words on the other stones in our little section of the cemetery. We would note the spouses who were still alive and those who weren’t, how long they had gone on without their other half. Some were gone in a year or two. Others lived for decades. We wondered how they endured that much time. Neither of us could imagine losing the other.
The meanings of words
And then, I had not just to imagine it, but live it. I keep looking for words–and there are none. One moment, you are sitting in a room holding her limp but living hand. The next, there is a catch in her breathing and you are holding a hand that has no soul attached to it. You are alone in a way that cannot be described–only experienced. And it is an experience you would not wish on anyone.
Others lived for decades.
A wife or a husband is the family member you choose to give absolute and unconditional love to. When you are hurt, they nurture you; when they are hurt, you nurture them; and there are no questions asked in those hours of need. There is no birth connection there–only a conscious decision that you will share your lives with each other, no matter what comes.
The death of words
And then death comes for one or the other of you–and no words can console the survivor; no physical or emotional gesture changes any of that vast emptiness. It is a pain so great and so deep that often, at the moment it happens, you feel nothing at all. Only months later, when everyone else has gone back to their lives, does the real pain begin. You face that, as you faced the moment of death, alone–alone in ways that cannot be described, only experienced.
…the family member you choose…
The words on the headstone that describe the date of Jane’s death may signal closure for her sister. If they do, I am glad for her. For me, they are only another reminder–like the emptiness in the soul of this house–of all that I have lost. They are words–and nothing more.
Jane’s death has cast a shadow on my life words cannot describe.
We are walking through the woods on a trail that is wide enough that we can walk side by side. We are holding hands. We come to a clearing and turn to each other. Our arms come up into a tight hug. Nothing could be better.
…my brain is melting.
Then I wake up. I am alone. Jane is not there. The anger and the hurt well up in me in a storm that leaves me shaking. It is 4 a.m. Part of me wishes I could just roll over and go back to sleep–recapture that dream and live there. I know better. I will just wake up again. And every waking is like the moment Jane breathed her last.
Fifty-eight months
The pattern has gone on for months now. It may be years. It may date back to Jane’s death 58 months ago. I know I have come awake in the middle of the night virtually every night since she died in the same state of hurt and rage. Only recently have I begun to remember the dreams that bring me awake.
We are walking through the woods…
In December, it will be five years since Jane’s death: five years of trying to come to terms with that and all it means. Barring accident or some global pandemic, I can reasonably expect to live another 30 years or more. My days are filled with meaningful and important work. I can lose myself and my pain in that. Sometimes, for a few hours, I can almost forget that Jane is not out with her sister or in another room.
Caregiver roll
I read a piece last night on being a caregiver for a cancer patient who is your partner. It says all the right things about diet and note-taking and general support. It gives the standard advice about making sure to take care of yourself. But doing that last piece is easier said than done.
My days are filled…
Jane spent her last 28 days in the hospital. I spent every one of those days with her. The nurses made sure I ate regularly, kicked me out for a periodic afternoon away from her bedside, made sure I showered and shaved and stayed as positive as possible. They, and Jane’s doctors, held my hand through every crisis and helped me let her go at the end.
Caregiver price
I had every form of support from them, from our friends, from her family–and from mine. Total strangers reached out to us in unimagined–and unimaginable–ways. A security guard I’d never met convinced his entire church to pray for us.
The nurses made sure I ate…
I lost 25 pounds in those 28 days. I lost my mind several times. I lost half my soul and the one thing that really mattered in my life. I’ve regained–and lost–some of the weight. But despite support groups and professional help and meaningful work, my heart, mind, and soul are still a shattered mess. I still feel like Job, sitting in the ashes of his burned out farm, surrounded by his friends and neighbors who can only wonder what Job has done to bring God’s wrath down upon him in such a terrifying way.
The living
God’s wrath is not something I concern myself with. I am more concerned with finding answers that will prevent others from going through what Jane went through in the final months of her life, that will prevent their spouses from going through what I went through as caregiver and spouse in Jane’s last months–and what I have gone through since. If my pain is the cost of that knowledge, I may whine about it periodically, but I’ll pay the price.
I still feel like Job...
I’m tired, though. The last two months have drained me. I’ve done fundraiser after fundraiser, meeting after meeting, reading after reading. I’ve walked my father-in-law to the end of his life and held his surviving daughter’s hand through both that and her own broken heel–and she still faces months of physical therapy for the latter while she deals with the aftermath of her father’s death.
But my brain is melting. I’m taking a few days off. I’ll do some yard work, go see a play or two, maybe pick some apples or just find a quiet spot on a beach or forest somewhere that I can listen to the waves or the wind in the trees. Cancer may never take a day off, but humans have to sometimes.
I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk.
I have never felt more alone than I did when Jane was in a coma. I had the words we had spoken to each other and the love we shared, but it was not enough. I remember saying to myself at one point, “You are all alone out here, on the very tip of the spear, and you have to decide whatever is going to be decided.”
It is what families do.
To this day, I don’t know that I made the right decisions in those last days of Jane’s life. I know I made the best decisions I could based on the information I had at the time. I had friends and doctors and nurses to help me think things through but, in the end, I had to make the final calls.
Alone in the dark
Sunday morning at 5 a.m. I boarded the bus that would take me to the starting line of the Boston Marathon Jimmy Fund Walk. It was 42F and sunrise was not even a glimmer on the horizon. It was the first bus and it got me there in time to eat a banana and down a bottle of water before the official starting time.
I had to make the final calls.
I walked up the hill to the start point, asked a police officer to take my picture, and headed off into the dark. I was wearing shorts, knee braces, and a t-shirt pulled over a sweatshirt. I’d decided to wear gloves against the cold and against the blisters my trekking poles would otherwise induce over the 26.2 miles.
The real Marathon
Most human bodies are not really designed for distances greater than 20 miles a day. When armies literally marched into battle, the wise commander limited his men to 20 miles a day, knowing that going much further than that would leave them too tired to fight at best–and vanished into the night at worst.
I walked up the hill to the start point…
Asking a human being to run a distance greater than 20 miles is even more difficult. As a friend who was preparing for his first marathon-length run reminded me, the first guy who did it died at the end after shouting the single word, VICTORY!”
A test of will
I’ve walked 20 miles many times in the last four years. I’ve walked further than that maybe ten times–four of them on the BAA Boston Marathon course for the Jimmy Fund. Most years, I’ve trained hard for that walk. The only difference that training has made is when and where my body starts to object strenuously to what I am doing to it.
…the first guy who did it died…
Yesterday, that point came about Mile 21. The latest it has arrived for me is Mile 23. But whenever that moment arrives, the Marathon Walk ceases to be about physical conditioning; it becomes, instead, a test of will.
My one talent
People tell me I am a gifted writer, a gifted speaker, a gifted teacher. I am none of those things. I am good at each of them, yes. But the word “gifted” implies some inborn talent and that, I don’t have. My heroes had those talents–and I wanted them. But I did not have them.
I’ve walked 20 miles many times…
I became a good teacher, a good writer, a good speaker because I worked to develop those skills–and was fortunate to have good teachers and good models to help me reach my goals. My single talent, if I have one, is that I am stubborn to the point of foolishness. If I want to learn something, I work at it until I understand it. If I want to do something, nothing gets in my way. Or almost nothing.
The tip of the spear
Five years ago, Jane was dying. Neither of us wanted that–and we fought with every measure of our being to stop it from happening. We failed–and every fiber of my being hurts every second of every day as a result.
…nothing gets in my way.
So when my muscles start to scream near the end of a Marathon distance, they have to compete with an even stronger vision–an even stronger voice: I remember Jane’s pain in the last days of her life; I remember my own pain in those days; and I remember the emotional pain I deal with every day; and I know I don’t want anyone to go through what Jane went through, what I went through, what I continue to go through.
Paying the price
Beside that pain, what my body goes through is nothing. It is a part of the price of finding a cure–and a minuscule part for me compared to losing Jane.
Five years ago, Jane was dying.
So I walked through the dark until the sun came up. I walked until I met up with the part of our team that was starting at 13.1 miles. I walked until my body broke–and then I walked some more. And when I crossed the finish line at last and shouted “victory” again, most of our team and another team of zebras was there to meet me.
Forming the spear point
And this is part of what I said to them: We are not merely an alliance; we are not merely a team; we are family. From this moment, no zebra awakens from surgery alone, no one fights alone, no one dies alone, no one mourns alone, no one stands at the tip of the spear alone.
…and then I walked some more.
“Today, we are the tip of the zebra spear. That spear is aimed at the heart of NET cancer and, together, we will kill it.”
The point of the spear
And to each of you reading this, I say the same thing–and make the same pledge: From this moment, no one fights alone, no one dies alone, no one mourns alone. At one time or another, each of us will stand at the point of that spear, each of us will strive to drive it through the heart of NET cancer–and in the end, we will kill it.
…we are family.
If that means walking, we will walk. If that means being part of a trial or study, we will do it. If it means speaking or acting or simply living, we will do it. It is what families do.
Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family–and never alone again.
I’m supposed to be retired. I’m supposed to be sitting on my deck, looking out over my finely manicured landscape design. I’m supposed to be relaxing and traveling to exotic spots. I’m supposed to be doing all of those things with Jane by my side.
…I know I have to try.
Five years ago this fall, all of that changed. Jane was diagnosed over the summer with NET cancer. In early September, we learned it had damaged the valves in her heart. In late September, we knew we were in a race between her cancer and her heart–a race we needed to win if we were to enjoy even a few months of retirement together.
The cost of failure
By Christmas, it was over–and I was alone. Sometimes, I try to explain what that means to people who have not experienced it. People tell me I am good with words–and maybe I am. But I have not yet found anything that even begins to convey the emptiness that loss creates. My father’s words come closest: “And now you know there is nothing anyone can say to you that will make this feel any better.”
…with Jane by my side.
Someone told me last week that if we had even one child, this would be easier to bear. My father had six of us when my mother died. I don’t think it helped much, even when his eldest son was equally a widower. The relationship between spouses is different from what exists between brothers or sisters or children or parents. Our spouse is the person we choose to be our family. It is the only family relationship we make a conscious choice to have.
Why keep going?
Someone else asked me this week why I take on so much–why I can’t just let this be someone else’s problem. And I have to admit there are moments I just want to walk away from all of it. Nothing I do will bring Jane back. Nothing I do will truly avenge her death. Nothing I do will make this emptiness I feel any better.
…I was alone.
But then I think of the people who walk today because, in part, of what we learned from Jane. I think of the doctors and nurses and researchers Jane’s life–and final days–inspired. I think of the literally hundreds of people I know who are fighting the same cancer Jane had.
I walk because I know…
And I think of their children and their husbands and wives and parents. I know how it feels to look across the kitchen table and see no one there, what it’s like to wake up in the night to half the bed being empty, what it’s like to see something and have no one to share it with–and I know I would condemn no one to those things.
Nothing I do will bring Jane back.
Jane’s death set me on this path–but it is not what keeps me there. Jillian and Andrew and Amanda and Ronnie and their spouses and children do. Pamela and Kelly and Josh and Alicia and all their loved ones do. And Jen and Matt and Eric and Emily and George–and all the doctors and researchers working on this difficult cancer–do.
Choosing to ignore limitations
In the end, I know I won’t find the cure for NET cancer. I know I’m not rich enough or well-connected enough to come up with the money that will find that cure. But I also know that if I don’t do all that I can I won’t be able to live with myself.
I know how it feels…
I know how to write. I know how to speak. I know how to walk. Doing those three things, perhaps I can inspire the people who have the money; perhaps I can inspire the people who have the knowledge and the skills; perhaps that will be enough. And perhaps not. But I know I have to try.
You come, too.
Each year, I cry, “Victory” as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.
(Editor’s note: I wrote what follows on Monday morning. Hank died early that evening. Only now, on Thursday, a week after the 57-month anniversary of Jane’s death, have I had time to post it here. You can view his obituary here.)
Life—and death—intervenes
The 57-month anniversary of Jane’s death was last Thursday. I’ve had little time to reflect on that because her father’s health has taken a significant turn for the worse. As I write this, he is on his death-bed just a few feet away. It is 5:50 a.m. and Gail, his other daughter, is sleeping.
Every person’s death diminishes me…
I slept for a few hours earlier. The medicines he is on to keep him comfortable have to be given every hour, so one of us has to be awake at all times. How long this death will take, neither of us knows. But he is seemingly comfortable and, at this stage, that is all that matters.
A time to live…
Jane’s dad was sick long before we discovered Jane’s NET cancer. Kidney problems are easy to spot with the standard blood tests everyone gets with every routine physical. It was a bigger struggle to get him to accept dialysis than it was to discover that he required it.
…he is seemingly comfortable…
Dialysis is an exhausting experience, but it does clean out the toxins in the blood pretty well. While Hank’s life the last six years has not been perfect, the quality of it, until recently, has been decent. He was able to get out of the house, go to cookouts, watch football—most of the normal things people do.
A time to die
Unfortunately, Hank was done in by another medical failure. Apparently, we stop testing for prostate cancer in older men at some point. The thinking, they tell me, is that prostate cancer generally moves very slowly in the elderly. In Hank’s case, that meant the cancer had spread to his bones before it was detected.
Dialysis is an exhausting experience…
The last year has not been good. He has been in and out of the hospital, in and out of rehab, and the quality of his life has steadily declined. Last Tuesday, Gail called 911 when he had become increasingly confused and lethargic. We expected he was dehydrated—the weather was hot and humid and there is no way to pump enough liquids and electrolytes into a person in Hank’s general condition orally.
Waiting for Death
But that was not the problem. The vital organs in his body had begun to shut down. We moved him into hospice care Thursday and brought him home Friday afternoon. He was already asleep most of the time—waking up only when we changed his bed-clothes. Since late Saturday night he has not opened his eyes.
The last year has not been good.
We wet his lips, give him his comfort medications, and sit with him. We talk to him—we can’t know how much registers. But I think that while the porch light is on, there is not much of him left at home.
Memories
Jane’s death was similar at the end. She went into that final coma and slowly drifted away. The difference was she did so in a hospital room. I would have liked to have brought her home to die, but she might not have made it there had I tried—and I did not want her to die in an ambulance surrounded by strangers.
…he has not opened his eyes.
I’ve spent the last few days thinking about Jane and her parent’s house. I have stood by the fence outside where I first told her I loved her, stood in the hallway where I kissed her good night after a date, sat in the dining room where we ate Thanksgiving, Christmas, and Easter dinner—as well as a host of Sundays.
Inhaling life and death
I have stood under the grape arbor where we once sat and inhaled their late summer perfume. That scent is there this week as we wait for Hank’s death. It will close the book on so many memories in a way I can’t quite describe.
Jane’s death was similar at the end.
We forget, sometimes, that medicine is not an exact science. A test not given, a series of diverse symptoms not recognized as part of a larger pattern, a specialist’s rather than a generalist’s view of things—by such little things all our lives hang like the grapes on that arbor. We don’t know when a particular grape will be fully ripe, when a particular leaf will fall—when a specific life will end.
Nine years tomorrow
Jane’s mother died nine years ago tomorrow. I thought of the irony of that last week. That Hank should die on the same day as his wife has powerful symmetry to it, but I kept it to myself at the time. Gail raised the idea this morning and I agreed with her. I feel uncomfortable intruding on her grief.
…medicine is not an exact science.
In a few minutes, I will dip a fresh DenTip—a tiny sponge at the end of a long plastic stick—in water, cleanse Hank’s mouth and then give him his next bit of medicine. I’ll note the slight change in the sound of his breathing, and continue to wait—as I waited with Jane during her mother’s last hours, nine years ago, as I waited for Jane’s death 57 months and four days ago.
Waiting for the harvest
And when the waiting is ended, Death and I will become full adversaries again. I understand the cycle of life and death—of birth and rebirth. I know even the stars have expiration dates. But I am very much a disciple of John Donne: Every person’s death diminishes me, for I am involved with humankind.
Jane’s mother died nine years ago tomorrow.
For now, Henry is dying. I will do what I can to make him comfortable as he waits like a grape to be plucked from the vine.
