The carcinoid/NETs litany

My insurance company won’t pay for my octreotide prescription. Where do I find $64,000 a month for that?

I need to go to Vanderbilt to see a carcinoid specialist treatments. It’s 500 miles away? How do I pay to get there? 

I can’t get PRRT treatments locally–and the specialist says I need them. But my insurance probably won’t pay for the treatments, let alone a place to stay for a month.

It’s hard enough to fight this cancer–why do I have to fight the insurance company, too. I think they hope I’ll just up and die so they won’t have to pay for it.

Help me stay alive: go to my GoFundMe page and make a donation.

Beggary and the cancer ward

Every day I read variations on the above themes. That last one is particularly galling. We live in the richest nation on earth and cancer patients have to sit on virtual street corners with tin cups in their hands begging for help to pay their medical bills. Some put jars in their local stores–a few literally panhandle on the streets like homeless people, hoping against hope that somehow they will fight their way clear.

There is no way to cover everything that is out there…

When they die, too often their families end up filing for bankruptcy, losing everything they had to the carcinoid maw that devours everything in its path.

We all pay the price

It makes me insanely angry every time I see one of those posts. We need to fix the healthcare debacle in this country that turns cancer patients into beggars. But that is not going to happen in the next two years. The political will to do something to make radical changes in the system does not exist.

We live in the richest nation on earth…

So this article is not going to turn into a rant about the shortcomings of Obamacare or the efforts of the Republican Party to turn back even those modest reforms. That won’t help those people struggling to make ends meet while facing carcinoid/NETs or some other form of cancer.

Paying patient support forward

There are groups and organizations out there working to help patients get the treatments they need, get the travel they need, get the lodging they need and the drugs they need in spite of government gridlock and corporate greed.

It makes me insanely angry every time I see one of those posts.

The first stop on your cancer journey is a name most people already know: the American Cancer Society. The ACS is about a lot more than research. In fact, the vast majority of the money ACS raises goes into patient support services, not research. If you need a ride to treatment, for example, there is Road to Recovery. They coordinate a network of volunteers who drive patients to treatments free of charge. In some areas, they actually run buses on specific days to large cancer centers.

No pay to stay

While they don’t arrange travel to cancer centers at a great distance from your home, the ACS can supply a place to stay for an extended period of time through the Hope Lodges once you get there.  These are not flea-bag hotels in dangerous neighborhoods. They are extended stay facilities designed with the needs of cancer patients and their families in mind.

The ACS is about a lot more than research.

 

There are 30 of these scattered around the country in close proximity to major cancer centers with 20 more in the planning stages. You can stay there for as long as you need to–and they won’t charge you a dime for it. And there is one near most of the major carcinoid/NETS programs across the country.

Help with getting insurance to pay

The ACS offers two different things to help patients deal with insurance and financial issues. The first, and more useful,  of these is the Health Insurance Assistance Program. That group within ACS deals with patients who are having issues with their insurance–or the lack of it.

These are not flea-bag hotels…

 

The second is a series of posts and articles on insurance and financial issues cancer patients and their families may confront during their battle with cancer. The pieces are very informative and written in easy to understand language. But the entire weight of the process ends up in the hands of the patient or their immediate family if that is the only device you avail yourself of. Patients and families need to focus more on the cancer than they do on the financial issues. Still, the background those pieces provide can be very useful.

Paying for the day-to-day

ACS also functions as a clearing house for information about non-ACS financial aid programs for patients and families struggling with cancer ranging from help with day-to-day living expenses to mortgage help.

…the background those pieces provide can be very useful.

Carcinoid/NETS patients can get some financial help for treatment specifically from the Lois Merrill Foundation. They give small grants to individual patients based on an application process. Those grants are only made once a year. Applications are due no later than June 20 and awards are announced shortly thereafter. The average grant is less than $2000.  That may not seem like much, but every dollar counts.

When it pays to travel…

For carcinoid/NETS patients in particular, treatment often means having to travel great distances–and air travel is expensive. The National Patient Travel Center functions as a clearinghouse for many different kinds of long distance travel for those with medical needs that cannot be addressed locally. They staff a full-time help center that evaluates a patient’s situation and sets up what is available for them. They also can help with ground travel up to 250 miles.

Applications are due no later than June 20…

Southwest Airlines’ announcement in March about free flights to Vanderbilt made a huge splash in the carcinoid/NETS community because Vanderbilt has one of the best carcinoid/NETS centers in the US. What quickly got lost in that announcement was that Southwest has a medical travel program that goes anywhere they fly to the tune of $2.8 million a year. Patients should check with the cancer center they need to get to see whether they are part of the program. If they are not, they have until September 30 to apply for this year’s program.

Other airlines may also have similar programs. Check with them. Most, however, seem aimed primarily at children with medical issues.

The price of drugs

Another potentially major expense for cancer patients generally–and carcinoid/NETS patients in particular–is prescription drugs. Jane and I were stunned to discover a single month supply of a minimal dose of Octreotide was over $58,000 in 2010. Fortunately, we had a platinum insurance policy that left us with a $40 co-pay. We had argued about the expense of that policy every year, but had finally concluded it was worth the price, just in case something awful did happen. And then it did.

Southwest has a medical travel program that goes anywhere they fly…

Not everyone makes that decision–or can afford to make it. Some of the oral medications currently in trials would not have been covered by even our insurance policy. We would have found a way to pay for them: money matters little in a life-or-death situation. But there are other options.

Help to pay for drugs

Nearly every drug company has a program that makes their drugs available at reduced or no cost for people who lack insurance or who cannot afford to pay for a drug they need. The RxAssist Patient Assistance Program has a list of guidelines for some of these programs.

Not everyone makes that decision–or can afford to make it.

Novartis, which manufactures both Octreotide and Sandostatin LAR, two of the standard drugs used to treat carcinoid/NETS, as well as Afinitor, which is used in pNETS, has a patient assistance program for users of its drugs that patients should look into.

A number of foundations also offer help with co-pays.

Trying to reach the bottom line

There is no way to cover everything that is out there to help patients with the financial problems they face in a single short article–and I’m sure I have missed some things people will want or need to know. But this should give you some good places to start as you figure out how to pay the financial price of the battle you face without resorting to begging on the real or virtual streets.

Nearly every drug company has a program…

And if I’ve missed something–either in terms of a financial issue or a place offering real solutions–please let me know. I’ll try to cover those items in a future article.

 

Starting the 24-in-24 Challenge

Good afternoon and welcome to our Walking with Jane 24-in-24 Challenge to benefit our Relay for Life of Greater Fall River team. I’m Harry Proudfoot, chairman of Walking with Jane and captain of our Relay for Life team. I’ll be here from now until midnight with a whole slew of information that I hope will encourage you to help us reach our goal of $2400 for April 24.

Normally, our focus at Walking with Jane is raising money for research on carcinoid/NETs and helping patients and doctors alike learn about the disease. But we also very much recognize that there are people out there who have other forms of cancer–and that regardless what form of cancer you or someone you care about has, that cancer brings with it all the pain, all the anguish, and all the stress that Jane and I went through when she was diagnosed in August of 2010.

The Challenge of patient support

While cures come from research, patients and their families have a whole host of other issues to deal with. It’s hard to stay positive when your hair falls out and your clothes no longer fit because of all the weight you’ve lost. It’s hard to focus on treatment when you are worrying how you will get to that treatment and where you will stay afterward if you’ve had to travel a long distance to get there–or if your treatment leaves you too weak or sick to travel more than a few miles afterward.

Support for patients and their families is an important part of cancer treatment. The American Cancer Society does a better job of that than nearly anyone–and they do it on a national scale. When most of us think about ACS we think about them as a research organization that funds the search for cures for the biggest killer in America.

Challenge supports more than research

But the truth is more than 60 percent of the money they raise each year goes to programs that support cancer patients and their families. They provide make-up and classes in how to apply it so that women can feel good about themselves even in the midst of sugary, radiation and chemo-therapy. When you hair falls out–a frequent side-effect of many cancer treatments–they supply wigs and scarves and lessons on how to look and feel better.

Those may seem like little things, but they are huge matters to someone fighting cancer and trying to maintain a positive attitude at the same time. I remember a nurse coming in and cleaning up Jane’s hair and face after one of her more difficult carcinoid attacks. We’d faced a grim war for several days–but that small act of kindness gave Jane–and me–a huge lift far beyond what either of us could have imagined.

The Challenge of getting there

But the American Cancer Society does more than help patients look good and feel better. The people I worked for were wonderful during Jane’s illness. If I needed a day to take her to Boston for treatment or an appointment, they were fine with that. Not everyone is so lucky. And were I hit with cancer and needed to get to Boston for regular treatments, I’m not entirely sure how I would get there.

Fortunately, ACS has a program for that: It’s called Road to Recovery. Locally, they run a bus out of New Bedford once a week so cancer patients can get to Boston for treatment. If the bus doesn’t work for you, they have a network of volunteer drivers who will take you there–or to a local clinic–from your doorstep, wait while you go to your appointments, and then return you home–all without charging you a nickel.

The Challenge of staying there

And if you need to stay overnight–or longer–there are the Hope Lodges, where patients and families can stay–again, without charge. And these are not flea-bag hotels. Rather, they are buildings designed and dedicated to cancer patients and their families. Unfortunately, there are only about 30 of them but they are near major cancer centers–and another 20 are in the planning stages.

Jane and I were financially very lucky in our battle with her disease. We had great insurance coverage and an insurance provider that supported us every step of the way.When I needed information about coverages–I handled all the medical and business contacts when Jane was sick because I wanted her to focus entirely on fighting her cancer–my calls were answered pretty quickly–and when they said they would call back about things they did not know the answer to, the always did.

The financial Challenge

But that is not everyone’s experience. Every day I read about patients having problems getting even simple answers to their insurance questions; every day I talk to people who have been denied coverage or who cannot pay for their prescriptions. Navigating all those things is very difficult.

As cooperative as my insurance people were, there were still days they made me crazy. I can’t imagine being a patient AND trying to navigate through that storm. Fortunately, ACS has a link for that as well. The Patient Advocate Foundation, an ACS partner, has a website whose only job is to help patients deal with those kinds of issues. ACS also offers an insurance assistance program

The Challenge for you

I don’t just support ACS because of the work they do in supporting research–though without the funding they provide for that carcinoid/NETs research would be even further behind than it is–I support them for the work they do to support patients and their families get through the most difficult struggle many of them will ever endure.

Parents facing cancer in their children don’t need to be worrying about where they will be staying after a treatment or operation; husbands and wives should not have to think about the fight that is coming with the insurance company over the other’s coverage when they need to be focussed on being with the one they love in that hospital room.

This first hour is about re-introducing you to an organization you think you know: the American Cancer Society. Please take a few minutes, right now, to go back and look at the links above. They will tell you about all these support programs in more detail. I think you’ll come away from that experience with a better understanding of why I think Relay for Life and the American Cancer Society work Relay supports are so important.

The Relay Challenge

Let’s talk a bit about Relay for Life before we go any further. Relay is the single biggest charity fundraiser in the world. The Greater Fall River Relay for Life is just one of thousands of Relays around the world raising money for the ACS’s work–but it is one of the heavy hitters here in New England, raising nearly $300,000 nearly every year for the fight against cancer.

That’s good enough to put our Relay routinely in the top ten in New England in recent years. And the money raised goes to the many different programs the ACS provides. I’ve listed some of those programs above, but here is a short video that does a nice job of summarizing those programs.

The beginning of Relay

Relay was started by Dr. Gordy Klatt as a young doctor. Now, many years later, he is fighting cancer in one of its truly challenging forms. He talks here about how he got the ball rolling.

My own involvement didn’t really begin until after Jane’s death–but we both knew about it before she got sick–and both planned to become involved with it after we retired. The local Relay had an impact on our struggle with carcinoid/NETS almost from the beginning.

First, An update of donations and such

So far today, we’ve raised $200. We received $100 in cash donations this morning. But we also got a note from an anonymous donor offering to match the first $1200 in donations we receive today. That turns that $100 into $200. You can make a similar thing happen when you donate to our Walking with Jane Relay for Life team between now and midnight–or whenever the matching money runs out. Make your donation now.

I am also pleased to announce that tickets have arrived for our Clam Cake and  Chowder Dinner on May 22. While sales from that won’t count toward today’s matching offer, you can order tickets today either by calling me at 508-674-0279 or by emailing me at walkingwithjane@gmail.com

The personal challenge

“He thinks it’s probably cancer,” Jane said to me as she got out of the car. She’d gone to the doctor alone that morning despite my attempts to go with her. Jane could be pretty tough when she wanted things her way. It was an argument I had lost. It would be the last time I would lose that argument.

“But he says we won’t know for sure until after the biopsy–and that until the biopsy, it isn’t cancer.” She told me after he said that he had introduced her to Chris Palmer, one of the women in his office, and left the two of them alone. They talked for a bit–and then Jane had come home.

Chris was chairing the local Relay for Life, a group she had been among the local founders of–and Jane was not the first patient she had talked to following that kind of news. I owe Chris a huge debt of gratitude for what she did that day. And I owe her–and Relay–equally big time for helping me get through some of the days, weeks and months that followed Jane’s death. Much of that was in the future, though, on that ironically sunny July morning.

The personal challenge, part 2

Jane wanted a vacation to take our minds off the impending biopsy and what we were both pretty sure would follow. So we packed up the car and went back to the Lakes Region of NH where we had spent too few days on our Honeymoon nearly 21 years before.

Her legs were badly swollen, though we didn’t know why, and her insomnia was a constant presence. She had little appetite. She sent me out alone early one afternoon to have lunch. She was bloated and didn’t want to even see food. I sat alone at a table in a restaurant for the first time in a quarter century–and hated every second of it. I’ve no memory of what I ate–I simply absorbed it and hurried back to be with her.

I did not eat alone again on that trip. It felt too much like a precursor of life to come–and it was. The rest of the trip, if she didn’t feel like eating, I didn’t either. The last night, she wanted chowder but did not want to face a restaurant. I went down the road to a place that did take-out. I brought it back to the room and we curled up in the window seat and ate looking out over the lake.

The Personal challenge, part 3

The next morning we went for a final New Hampshire walk. It was among the first things we did after we were married. We were both aware of the symmetry. Jane took a couple of pictures of the lake and we recruited someone to take a picture of the two of us together. We were still using film, so there was no way to know how badly we had chosen our photographer.

I had the film developed the week after Jane died. The shot was taken from too far way and by the time I’d blown it up enough to see our faces it took on an impressionistic feel. We are standing with our arms wrapped around each other with brave smiles on our faces. Jane is thinner than I remember her.

It is the last picture I have of her–and one of only a handful with both of us in it. I framed an 8×10 copy and put it on the hall table where I see it every night before I go to bed. I share it with no one. It hurts too much.

The personal challenge, part 4

The biopsy was the morning after we returned home.

That was how we planned it. We didn’t want to have a lot of time to think about it. Of course we thought about it–even talked about it while we were away. But talking about it while sitting next to the lake  had a dreamlike character to it. We were constantly aware that Jane was sick–and seriously–maybe even fatally–so.

But it was like we were on some kind of drug like the one they gave her for the biopsy. I was there when Jane woke up from that. She said she finally understood why people were fascinated by drugs–even became addicted to them: “You could tell me right now that I was going to die,” she said. “It wouldn’t matter to me. I just feel wonderful.”

There were times in the coming months we both could have used those drugs. That weekend, Jane had some swelling in her arm. She wanted to wait until her scheduled appointment to bring it up with her doctor since it was only a wait until Tuesday. But it didn’t feel right to me. I called the doctor Monday morning and he said the results were in and we could get both things done at the same time later that day.

Challenge Update

So far, we have an audience of about 80 people–most of it on Facebook. Please remember we have a dollar-for-dollar match going between now and midnight up to $1200–so your $10 donation becomes $20 for today only. Please share these posts with others. Hoping to see some serious upticks in the next hour. Donate now.

The personal challenge, part 5

It was a good thing we had not waited. Jane had thrown a clot in one of the blood vessels in her shoulder. If it dislodged, she might have a stroke–or worse. She would spend the night in the hospital for the first time since she was born. I came home alone that night and slept alone in our bed for the first time ever.

But I wish we’d been able to wait even another 24 hours. Hearing a cancer diagnosis–even for a minor skin cancer–is like nothing else I can describe. Hearing your wife’s doctor say she has a form of cancer he has never heard of is 1000 times worse at a minimum.

Learning a week later that your local, Dana-Farber Cancer Institute-trained, oncologist has never seen a case of it before and honestly doesn’t know much about it beyond the name is the kind of thing you only see in medical thriller films. And now you have to live in that world of specialists and experimental treatments and the increasing probability of death–not your own death, but the death of the person you love most in all the world.

The personal challenge, part 6

Jane and I were very fortunate when it came to doctors. Her doctor sent us to an oncologist who knew little about the disease–but who did know who the real experts in treating the disease were. And she had no qualms about getting us to them–and getting us there quickly.

We were also lucky that two of the best people in the field were right in our back yard. The Dana-Farber Cancer Institute is barely 60 miles from our door–less than two hours away even in rush hour traffic.

That Jane and Dr. Jennifer Chan took an immediate joy in each other’s company was simply the best situation possible. And Jen quickly assembled a great team of doctors who quickly diagnosed the heart issues the cancer was causing. The head of cardiac surgery at Brigham & Women’s hospital, a man others called the most creative heart surgeon they had ever seen in the operating room, agreed to be her surgeon. One of the handful of oncocardiologists (doctors who study the impact of cancer on the heart) in the world became her cardiologist.

We knew we were up against long odds. But we also knew that we had a team that was capable of shortening those odds. If beating carcinoid was possible at all, we were in a position to do so.

The Challenge of finding a doctor

Most people have a far tougher time finding a doctor when they’ve been diagnosed even with one of the more common cancers.  Most cancers are life-threatening–and also mean you will likely spend a lot of time in the presence of that particular doctor. You are likely to have a far different relationship with them than you do with any other medical professional.

And increasingly, cancer treatment takes a team approach. You not only have to like your oncologist, you have to trust their ability to put together the right team for your particular cancer. Most of us lack the knowledge and expertise to find a good doctor. Most of us pick our primary care doctor seemingly at random–and hope for the best.

The American Cancer Society, whose work we are trying to support here today, has a great guide for how to go about choosing your oncologist–and your hospital. It’s just one more of the many support services they have for cancer patients–and like everything else they do, they put it out there for free for any patient or family member who needs it.

Challenge Update

The thermometer has started to rise a bit: we’re up $120 including the matching money in the last hour, bringing our total for the day to $320. Still a bit of a climb to $2400 ahead of us. And our audience has climbed over 100 for the first time today. Donate now. 

The Palliative Challenge

When most people think palliative care they think about end of life care. While palliative care is a part of that scenario–making the dying patient as comfortable as possible in their final hours has a lot to be said for it–it is also a significant part of the healing scenario as well. If you break your leg, for example, the surgeon can set the bone and put it in a cast and you will heal. But you will heal more quickly if you have some painkillers prescribed that will keep you from thrashing around in agony. They will also help you get some sleep–which will also help you heal.

Jane was in palliative care from the moment she got her first octreotide shot on our first day at Dana-Farber. In some cases, that drug will actually slow or stop–at least for a time–the growth of carcinoid tumors. But it also can–and in Jane’s case did–alleviate the two worst symptoms of the disease: constant diarrhea and gas that is so bloating it limits how much you can eat.

I can’t describe how happy I was when she turned to me on the drive home and said she was hungry–and could we stop to get something to eat. At first, I thought she just wanted to make sure I ate something. But she attacked her hamburger in way I had never seen before–even when she was healthy. It was clear that little shot had made a difference. And that night–and the next morning–she was diarrhea free for the first time in months. That meant she actually was able to absorb nourishment from her food for the first time in a long time.

The challenge in the sixth hour

OK, folks. I’ve been writing since 9 a.m. and posting since noon. I’ve given you lots to read and to think about. I could use a little help here, so comments–good, bad or indifferent would be a really welcome thing at this point–not that I’m anywhere close to out of material yet. I’ve got things coming on chordoma, triple negative breast cancer and Merkel Cell Skin Cancer, as well as some more about ACS and the ways they provide not just research money but patient support.

Also, if you have your own ACS cancer stories to relate, feel free to post them both here and on our Walking with Jane Facebook page.

The personal challenge, part 8

We were at Dana-Farber Cancer Institute in Boston virtually every Thursday from September through November 11, the date of Jane’s last appointment before she went into the hospital for surgery. We would get up each morning and I would go off to work. I had said I wanted to stay home with her–take a leave of absence, but she would not hear of it.

“What would we do if you did that,” she asked? “Sit here and stare at each other?” The tone in her voice ended that argument before it could begin. The truth was, my staying home would have defined her in her own mind as an invalid. She had enough trouble with me gradually taking on all the household chores we had once shared as her body increasingly failed her. She told me she felt guilty about that. I told her she would do the same if it were me.

So I went to work, came home, did what needed to be done in the house, sat with her on the couch until she could sleep for a little. The insomnia got worse with each passing week–and the range of her movement became smaller and smaller. Increasingly, I did the shopping alone because her diarrhea meant even the short trip to the grocery store was fraught with peril. Then she gave up going down the stairs to the basement. Her crafting died. Her world shrank with every day.

Those of you who knew Jane remember the active person she was–and understand the psychic toll those new and ever increasing limits took on her. She did all she could to rein in her temper, as did I. No one can be in that close proximity to human suffering day after day and not suffer some enormous hurt.

One afternoon I was outside doing yard work. We’d had a sinkhole repaired some years back and that day my foot found a new one. All the anger came pouring out of me then. That anger had not subsided by the time I got back inside and I ranted about it for a few seconds.

Jane’s response was to let her own anger leak out a bit: “Why does this seem to upset you more than my health?”

That took me back a bit. And then I knew why. “I can’t let how I feel about that out. It makes me so angry…” I paused. I could feel it bubbling, begging for me to lose control. “I need to be able to think, to stay rational, so we make good decisions about this cancer. I can’t be emotional about that without hurting you. So I get mad at things that are safe to get angry at, like that damned sinkhole.”

We all pay a price when the people we love are sick. We pay a price when the one we love dies. Both hurt so badly that if we fail to contain the flames it will burn everything about both of us to death.

And now this challenge

Finding cancer answers begins with research, but curing patients begins with support. Help us provide both. Donate now.

The personal challenge, Part 9

There are times I wish I had known about the Hope Lodge program during the 28 days jane was in the hospital–but most of the time I am glad I didn’t. I spent the first four days with a hotel room I barely used. In fact, Wednesday night, when Jane was in what we would later realize was her first carcinoid crisis, I never left the hospital. I was awake for over 38 hours and would have gone more if it had been necessary.

After those four days, I moved into her hospital room. We both needed me to be as close to her as I could get. She was scared, she told me, and it was a comfort for me to be close by. It was a comfort for me as well. I’ve written about that ordeal before and don’t want to go into it in great detail here again tonight. Frankly, I’ve cried my way through so much of what I’ve written today that I’m not sure how much good I will be for anything tomorrow. Reliving her last hours is more than I can handle just at the moment.

But there was so much courage in every second of those days. The doctors saw it. The therapists saw it. The nurses saw it. Even the cleaning staff saw it. After she died so many of them talked to me about what they had learned from her–and from us. They told me how what they had witnessed in that tiny room had changed their lives. And I knew those were only a small portion of the lives she had changed in the years before her world had shrunk down to the size of a hospital bed.

The personal challenge, Part 10

Jane’s death, for all the hideousness that accompanied it, had a kind of stark beauty to it that came out of the courage she showed in facing it. She faced it patiently and calmly and forgivingly. Her body betrayed her–and I failed her in those last days more than once. But I did the best I could with the knowledge I had at the time–and her doctors made sure I had the best knowledge they had every step of the way. They let me sit in on rounds, listened patiently to my questions and thoughts and answered with the best knowledge we had at the time.

Jane spent her life in the pursuit and sharing of knowledge. The problem with her cancer was–as it is now–that we did not know enough to make the difference in her life we all wanted to make.

Two-thirds of all the people who are diagnosed with cancer survive the experience today. Not so long ago, it was ten percent. But for cancers like Jane’s carcinoid/NETs, for people like my friend Katherine, who died this winter of Triple Negative Breast Cancer, for those diagnosed with Merkel Cell skin cancer, and for too many others, there is no cure–nor anything that even looks like a cure.

One third of those diagnosed with cancer will die from it. Some will die because it was diagnosed too late for the cures we have to work. But most will die because their particular cancer has no cure.

The personal challenge, Part 11

In a few minutes–as I write this–it will be exactly three years, four months and 14 days from the moment Jane stopped breathing for the final time. From that moment to this my entire life has been bent to finding a cure for what killed her. I live frugally. At the end of the month, what I have finds its way, for the most part, into cancer research or patient support.

This is not the life Jane and I had planned for our retirement. It is not the life she told me she wanted for me if she did not survive the battle we had in front of us.

But I loved her too much and her death–even at this distance–still hurts too much. I would have no one die her death. I would have no one live this life.

That’s why I will sit here typing my fingers raw until midnight. It is why I cannot fully enjoy the daffodils that are blooming in my yard and why the same thrill Jane and I once shared at the first sign of a crocus is no longer there for me. When a dragon loses its mate its heart takes a wound so deep that only growing a new heart will heal it.

And to grow a new heart takes, it turns out, a very long time.

Challenge Update

We have moved closer to our goal in the last hour and, including matching money now have raised $520 toward our $2400 goal. We have just under four hours left to earn the rest of that $1200 in matching money that is on the table–and we won’t get it without your help. Please donate whatever you can afford tonight.

The personal challenge, Part 12

The American Cancer Society could do nothing to save Jane’s life. By the time Jane was diagnosed that ship had not only sailed, it had reached port, unloaded, reloaded and reached another port entirely. Without ACS funding, small as it was compared to what gets spent on the more well-known and more frequent cancers, we would have known even less than we did about Jane’s carcinoid cancer in August of 2010.

I remember going online to study up on the disease shortly after Jane’s diagnosis. The number of entries on Google did not even fill a complete page. The US government had only funded a single conference on it–and no research–since 1968.

But the Relay for Life of Greater Fall River certainly saved what was left of my life in the months after Jane’s death. I had yet to hear of the foundations working on carcinoid/NETs and while I knew I wanted to do the Jimmy Fund Marathon Walk, I had no idea that if we raised enough money we could determine where that money went specifically. I only knew I wanted cancer–all cancers, really–dead.

The people at Relay took me in. They gave me a place to put my anger and my energy. They held my hand when it most needed holding. They could never replace Jane–no one and no thing can ever hope to do that–but they understood what it was I had seen. Many of them had been cancer patients. Others had been spouses or parents of cancer patients. Soldiers say only someone who has been to war really understands it. The same is true of those who have dealt with cancer.

Unfortunately, the number of people who have dealt with cancer is large–and growing. One in three women will face a cancer diagnosis. Half of all men will face that same reality. That diagnosis will have an impact on their spouses, children and parents–and sometimes that impact will be shattering.

The best oncologists say that when one member of a family has cancer, they all have cancer. That is the size of the impact crater even a survived cancer leaves in its wake.

9 p.m. Challenge Update

As of 9 p.m., we have raised $740, including matching, toward our $2400 goal for today. we need $830 to claim what is left of the $1200 in matching money–that would get us to that $2400 goal for the day. And we have just under 3 hours to do that in. Please donate whatever you can.

 The challenge of cancer

Jane’s death was not the first death from cancer in my life, nor–unfortunately–the last–but it was the most difficult to deal with. By the time I was 16 a close friend had already lost her father to it and a classmate I hardly knew had died from it. Things did not get better thereafter. On average, I have lost someone to cancer about every two years since I knew what cancer was.

The pace of loss has accelerated since Jane’s death–even if I eliminate the cancer patients I have encountered in my work since. Eight people I knew well enough to count as friends have died of cancer since Jane’s death. Double that number have been diagnosed and undergone treatment.

Part of that is the number of people I know. Jane and I were both teachers and knew thousands of young people and their parents. Part of it is that I am of an age where cancer becomes increasingly frequent. Part of it is the huge number of carcinogens we are all exposed to every day–and have been exposed to for years.

We can do something about cancer deaths. We can support cancer patients better. We can try to raise more money and recruit more good minds for cancer research. We can live a more healthy lifestyle and rein in our exposure to the things that cause cancer.

But, like everything else, we have to make the commitments necessary to bring about those results. And that commitment begins with each of us as individuals.

 Final words and thoughts

Today has been pretty wrenching on multiple levels for me. I started writ in at 9 a.m. this morning after spending much of the last few days buried in the research that has to go into this kind of project. That research also brings me back into close contact with my least favorite experiences and ignites all kinds of memories of Jane’s last days and what I wish we had known.

There are two hours left between now and midnight, but honestly, I’ve said all I have to say. Oh, there are couple things I could raise about Merkel Cell skin cancer and chordoma, a very rare cancer that affects about 300 people a year–a good friend among them–but if the other nearly 6000 words have not convinced you to open your wallet, another thousand or so won’t do it either.

And for far too many of you there is a good reason not to open your wallet. I came into today believing that the economy was getting better. Clearly, from the number of personal notes I have received today, it is not better than it was a year ago–and for many of you it is worse.

So let me make this clear: your families and their immediate needs always have to come first. If you have bills hanging over your head that you don’t know how you are going to pay, quash that charitable impulse right now. You and your family need that money for the necessities of life. Let others in better circumstances carry the charitable weight for right now. Your day will come, but until then, please put your family’s needs way ahead of this on your priority list.

I’ll monitor things on the various sites between now and midnight and write responses to those of you whose comments say they need some kind of response. I’ll post updates about additional contributions that come through the door.

Thanks to all of you who have dropped in or hung around for a portion of the day. I hope you learned something useful about life, the universe and everything along the way. That’s the more important part of these things for me in many respects: giving people the information they need to make better decisions and live better lives.

Be well, all of you.

Harry Proudfoot

11 p.m. Challenge Update

As of 11 p.m. EDT we have raised $790 so far today for our Relay for Life team. this includes matching money. $1000 is just $210 away–and with matching money still on the table, we just need another $105 to get there in the next hour. Donate now. 

Busy ten weeks ahead

One social mediathon, one 20 mile walk, one lobbying trip, one dinner, one craft and yard sale, working with doctors, caregivers, and patients, and daily efforts to recruit walkers and donors for both our Relay for Life team and our Jimmy Fund Marathon Walk team: that’s what my life looks like for the next several weeks in the run-up to the Relay For Life of Greater Fall River June 27-28 at Bishop Connolly High School.

 I know precisely what it means to be a widow or widower.

When I list just the cancer work on my plate like that–and combine it with the usual spring house projects–it is easy to get overwhelmed by everything. But my life has never been less than busy. What makes this tough is facing it–as I have everything since Jane’s death–without her. But that loneliness is a constant reminder of how important this work is to the lives of others.

Raising awareness and cash, Thursday

The heavy lifting for the Walking with Jane 24-in-24 Challenge Social Mediathon on Thursday has already begun. Putting together the ideas and materials for 12 hours of programming takes some time and some thought. The good news is that others have already done much of the video work that needs to be done and it is a simple matter of collecting those materials from the appropriate sources.

…my life has never been less than busy.

Unlike, however, our November Zebra Social Mediathon, this effort is also connected with trying to raise a substantial chunk of money. The goal this year is to raise $2400 in 24 hours. Last year, that was the goal as well. But we only managed about $1600 with that effort compared to the $2400 we raised the previous year with a simple email campaign. All the money we raise will benefit our Walking with Jane Relay for Life of Greater Fall River team.

Talking to politicians, recruiting sports teams

April 30, I’ll be in Boston to talk with state senator Mike Rodrigues about a palliative care bill the American Cancer Society Cancer Action Network is backing in the Massachusetts legislature. I’ll also be talking with him about getting a proclamation issued making November NET Cancer Awareness Month again this year. I want to get that done early so that we can work with several other groups to make NET Cancer Awareness Month much more broadly acknowledged by real people in the Commonwealth and elsewhere.

The goal this year is to raise $2400 in 24 hours.

A number of us are hoping to get all our professional sports teams in New England to put a zebra ribbon on their uniforms in November. That will require dealing with the various leagues as well as the teams. Having that proclamation in hand will make that a bit easier. We’re also trying to get a formal presentation of the proclamation with a truckload of dignitaries, patients and caregivers in attendance so that we can get the media attention we need to really make people aware of carcinoid/NETs.

Teaming up with ADVOCATS and the Grange

May 22, we will help the Westport High School ADVOCATS put on a clam cake and chowder dinner at the WHS cafeteria in Westport, MA. The last two years we did a spaghetti dinner that did not do as well as we would have liked last year. Depending on how the event goes, we may give up on dinners in the future. This event also supports our Walking with Jane Relay for Life of Greater Fall River team. Tickets are $12 per person.

…we need to really make people aware of carcinoid/NETs.

Just over a week later, on June 1, we’ll host our Third Annual Walking with Jane Yard & Craft Sale at the Westport Grange Hall. Admission is free. Vendors pay $25 for an indoor or outdoor site–all of which goes to our Walking with Jane Relay for Life of Greater Fall River team. We already have six people interested in joining us with things to sell, and I just posted the event broadly yesterday.

Walking the Walk–literally

I’ll personally be doing a lot of walking between now and the Relay For Life. May 4, I’ll tackle the 20 miles of the Walk for Hunger. May 17 I travel to Chelmsford for the Cystic Fibrosis Walk. And every day I’ll put in at least five miles–and often 10–as I train to spend the night on the track June 27-28.

… I just posted the event broadly yesterday.

Killing cancer, like beating hunger or cystic fibrosis or MS, takes lots of money and lots of effort. But that effort is as nothing to the effort that patients and their families face. I can’t tell you what it is like to be a patient. I can tell you what it takes to be a caregiver and a spouse. And I know precisely what it means to be a widow or widower. I live that life every day. I want no one else to face that life as a result of cancer.

The search for the Holy Grail

One of the holy grails in carcinoid/NETs research is a reliable diagnostic test that will consistently find the presence of the disease. Many forms of imaging, blood tests and urine tests fail to see tumors that a surgeon’s knife discovers. But opening up a patient absent a good reason to do so is not a practice any reputable surgeon would consider.

…it could be a game changer…

As a result, many patients are excited by a new test, called NETest, marketed by Wren Laboratories that promises to detect carcinoid/NETs tumors with a single blood test. The test is based on three papers by researchers from Yale and uses 51 different genetic markers that, taken together, indicate the presence of carcinoid NETs in a person’s body according to the researchers.

Claims for the test

According to the company website, the NETest can reliably tell if a patient has carcinoid/NETs. It says it can be used after an operation to determine whether or not surgeons got all the tumors there were to get or not. It says it can measure the efficacy of treatment. It says it can be used after a “cure” to determine whether or not the disease is really entirely gone.  Finally, it says it can, if you have symptoms, determine whether or not those symptoms are caused by carcinoid/NETs.

…many patients are excited by a new test…

The test uses two five ml blood samples and does a polymerase chain reaction test on them to unveil those 51 genetic markers that may be hiding in the sample. The lab then reports those results on a 0-8 scale with 1-4 representing low levels of NETs activity, 5-6 representing medium activity, and 7-8 high activity. Both the site and the papers the test is based on say the test has a high sensitivity level for carcinoid/NETs: 85-98 percent compared to the 64 percent recorded for the Chromogranin A test that is currently in use. CgA tests for a single peptide many–but not all–carcinoid NETs tumors produce. The company says the better  results come from the fact it is looking for 51 markers that are all associated with the disease.

The cost of the test

While the samples themselves do require some special handling, there are no real restrictions on what foods patients can have beforehand–nor much of anything else. The cost of the test is $750. If you want a consultation with one of their physicians before or after the test, it’s another $1000–but that consultation is not required.

The test uses two five ml blood samples…

However, the test is not yet covered by insurance. The company says they have applied to the AMA for a billing number and their decision is due this month (April 2014). Meanwhile, they are offering three free tests per patient. So what’s not to like?

Where is the FDA testing?

The papers the test is based on were written last fall. The test became available very quickly after those papers were published. That struck me as peculiar because most tests don’t become available until they have gone through a series of FDA trials. Even a Phase I trial for an orphan disease like carcinoid/NETs takes more than six months to complete. I first heard about a possible blood test to replace the 5-HIAA urine test not long after Jane’s death–and it may have been around well before that. It is only becoming available broadly now.

…the test is not yet covered by insurance.

I can find no record of an FDA trial for NETest. The website says the test has been validated with over 600 NET cancer patients–and another 1000 either cancer free or with other cancers. But if that took place under an FDA regimen, I would expect that to be mentioned. It isn’t. The only trials specifically mentioned are going on overseas.

What the numbers say–Part I

In the company’s defense, they do say the test is being used at “the Mount Sinai Hospital (New York), the Mayo Clinic (Rochester), and Yale University (New Haven) and is being implemented at Cedars-Sinai Medical Center (Los Angeles), the University of Iowa (Iowa City) and Columbia University (New York),” all of which are respected cancer centers in the US. But the tests were also available at a number of patient conferences as well–bypassing traditional ways of gaining access to patients.

I can find no record of an FDA trial for this test.

There are also some problems involving the way in which one of the papers lays out the basics of carcinoid/NETs incidence and prevalence. Using the same statistics every other paper uses to declare this a rare disease–an incidence of 3.6/100,000 and a prevalence of 35/100,000–the authors declare the disease common. I am not quite sure how that works.

What the numbers say–Part II

Do not misunderstand me: I think the disease is significantly more frequent than those numbers show. But I can muster no evidence beyond the anecdotal for that belief. Until we have other, concrete and replicable, evidence to dispute the prevalent view, we don’t get to argue the disease is common on the scientific stage. Nor do we get to cite the same numbers that declare the disease rare to declare it common.

…the authors declare the disease common.

That use of the interpretation of numbers makes me nervous about the rest of the paper: is this a work of science or is it the prospectus for a business venture? The two don’t mix very well for me.

Financial Connections

Another problem is the connection between Wren Laboratories and two of the authors of the papers who have a financial connection to the company. Irvin Modlin, the Medical Director of Wren Laboratories, is the primary author on two papers the test is based on, and the second author of a third paper cited on the website. Mark Kidd is the company’s Scientific Adviser–and the third author on two papers.

 Nor do we get to cite the same numbers that declare the disease rare to declare it common.

The authors do acknowledge in the studies that the research was funded by Clifton Life Sciences, but make no mention of Wren in their disclosures. Perhaps that is because Wren was only formed after the pieces went to press, but some acknowledgement on their website of that connection for papers posted there would be the ethical thing to do–or so it would seem to me.

The scientific method

That connection may not mean much to some people, but it evidences a significant problem: there is no independent acknowledgement that what they are saying is true. No one has independently reproduced their results–and that is one of the hallmarks of modern science: can someone else replicate your results independently of your lab and supervision?

 …two of the authors…have a financial connection to the company.

I am not saying they are lying or that they fudged their results. But I grew up in a household where the scientific method was sacred–and part of that method is independent verification. That seems to be missing here. I’d be much more comfortable if it were present. FDA trials would provide that.

Where do we go from here?

For now, at least, we need to treat these results as preliminary, for all that they are interesting–even promising. I can fully understand the excitement patients feel about them. I feel that same excitement myself. And for those who have been trying–sometimes for years–to get a straight answer about what they have, the test may offer that knowledge.

No one has independently reproduced their results…

But from a medical point of view, there are other questions that need to be answered before doctors can be entirely comfortable with it. In addition to those I’ve raised above, these include how–or if–this test should influence patient treatment; who should be tested and when; and finally, what ethical questions will doctors have to deal with? Assuming the test does work as advertised, these pieces of the puzzle still need to be addressed.

Trust, but verify

I really hope that this  turns out to be the armor-piercing bullet we are all looking for. It would be nice to have an ironclad diagnostic tool for carcinoid/NETs. It would be more than nice: for many, many patients it could be a game-changer. It could be a game-changer for researchers as well because it potentially provides a fuller genetic map to the disease’s weaknesses.

I feel that same excitement myself.

But until these red flags are lowered, I am not entirely willing to place even a small wager on what is on offer here. After the three free tests, each additional test is $750. Whether insurance companies will agree to pick up that tab absent FDA approval or other replication of the results remains to be seen.

Another person diagnosed with Jane’s cancer

Every day, 33 people are diagnosed with carcinoid/NETs. Every day 33 people with that diagnosis die from the disease and its complications. Most live for several years–even decades–between the two events. Others, like Jane, for a variety of reasons, are gone in what seems like a heartbeat.

 You face a real struggle in dealing with this disease, but there is hope.

A friend was diagnosed with carcinoid/NETs in recent weeks. I only learned about it this weekend–and when I did it brought back all the memories of our first weeks dealing with the disease in 2010. I wish we’d known then what I know now. But so much of what I wish we’d known did not exist then.

Newly diagnosed need to learn the basics

That–and some posts by people newly diagnosed with carcinoid/NETs on the various online support groups–got me thinking about the need for a primer for patients on what resources are available and background materials. Sites like this one have lots of information about the disease, but in the panicky first weeks after diagnosis no one is in a mental state to sift through  dozens of sites trying to figure out what is useful and what isn’t.

I wish we’d known then what I know now.

I quickly put together a note to my friend about the things I thought she needed to know–the things I wish we had known at the beginning. What follows is based on what I told her. If you are recently diagnosed, it may prove useful to you, as well.

The moments after diagnosis are scary

First, take a deep breath. You are probably feeling a thousand different emotions this point–and your mind is likely chasing off in an equal number of directions. Your doctor has likely told you this is a rare disease–may even have told you he has never seen a case of it before. Your oncologist has likely told you something similar. Those are scary things to hear from the people you view as the experts you have put in charge of your health.

Sites like this one have lots of information…

We don’t train doctors to deal with unusual diseases very well. They are taught from the beginning of medical school that when they hear hoofbeats they should think horses, not zebras. What that means is that a particular set of symptoms most likely is the result of the most common illnesses (horses) associated with those symptoms, not some other disease that is relatively rare (zebras).

The newly diagnosed zebra

Carcinoid/NETs is a zebra even in the cancer community. We diagnose about 12,000 cases in the US every year. There are about 120,000 people living in this country who have been diagnosed with it at any given time. Both those numbers have been rising in recent years, though whether that is because there are more people getting it or whether our ability to detect it has gotten better is unclear. What is clear is that about 12,000 people who know they have the disease die of it every year.

First, take a deep breath.

If your cancer was detected early, there is a good chance surgery will cure you. Unfortunately, this cancer is rarely detected early. If the cancer has spread beyond the primary site, we currently have no cure for the disease. We do have  therapies that will often slow it down and alleviate some of the symptoms. And we do have some things in trials that offer the possibility of a cure for at least some patients.

Newly diagnosed have reasons for hope

In most cases, this is a fairly slow-growing cancer. The therapies we do have may buy you enough time and quality of life for better therapies to come along. Things are changing rapidly in this field and you have reason for hope.

Carcinoid/NETs is a zebra even in the cancer community.

Carcinoid/NETs is unlike any cancer you have heard of before. Most tumor cancers take up space and consume resources. Eventually, they are consuming more resources than your body has or begin to impinge of the spaces of vital organs and destroy their functions.

This cancer is radically different

The primary tumor for most carcinoids is very small–often getting no larger than a lentil. The daughter cancers–the metastases–may get much larger, especially those in the liver, but even those are harder to detect than the more normal cancers. Regular scans often fail to pick up even the larger carcinoid tumors. Every tumor has what are called receptors on them. Contrasting agents–essentially radioactive dyes–are picked up by those receptors, making the cancer visible.

Things are changing rapidly…

But carcinoid tumors lack the common receptors so the dyes don’t stick to them–sort of like the wax on the Easter eggs refusing to pick up the color. This helps keep the tumors seemingly invisible. Two new types of scan can see carcinoid/NETs tumors by using radioactive agents that are traced by their decay —octreoscan and Gallium-68. Unfortunately, some carcinoid tumors are not revealed by those either–and remain invisible.

But just because you can’t see them doesn’t mean they are not there.

The hormone/peptide difference

Another difference between this form of cancer and others is that these tumors can–and often do–produce any of the more than 24,000 hormones and peptides the body produces. Increasing the amount of any hormone can have a huge impact on your life because each is involved in body chemistry.

…just because you can’t see them doesn’t mean they are not there.

For example, my wife’s tumors were producing serotonin. Serotonin is involved in controlling digestion, sleep, respiration and blood pressure among other things. Too much of it results in food being digested too quickly for the body to absorb its nutrients–and results in frequent diarrhea; in greater and greater difficulty falling asleep and staying asleep; in dangerously low blood pressure and respiration.

Diagnosing hormone issues

For a long time we had only one test for excess serotonin levels: the 5-hiaa urine test, which requires the patient collect all their urine over a 24 hour period. It is a cumbersome test and doctors, not wanting to put patients through it, can be slow to order it–especially when the disease it tests for is rare. A blood test for excess serotonin appears to have finished trials and is now available, but its broad use is still some years away because few doctors know about it.

Increasing the amount of any hormone can have a huge impact…

But the hormone or peptide being produced doesn’t have to be serotonin–it’s just the one we check for most often. It can be any of those 24,000+ hormones and peptides–and we only have tests for a relative handful of them. And the result of those excess hormones can also result in carcinoid syndrome.

Unique tumor biology complicates life

This complex biology is the reason a mainstream oncologist is often not the best choice for dealing with this disease. I can’t tell you how often I’ve heard things like, “Your 5-HIAA urine test came back negative, so we can rule out carcinoid/NETs;” or “The scans all came back negative, so it can’t be cancer.” The doctors involved were excellent doctors. Their lack of experience with this particular cancer left them prone to mistakes.

…we only have tests for a relative handful of them.

I can’t say strongly enough how important it is to find an oncologist who is familiar with this disease and who can put together the right team for you. Jane and I were lucky to have two of the best people in the field virtually in our back yard–and a local oncologist knowledgeable enough to send us to them.

Medical resources for newly diagnosed

There is a list on our resources page of some of the places that have carcinoid centers at them. That list is not exhaustive, however, because new centers pop up with some frequency. Nor can I recommend any of them, save one, based on personal experience because I have not worked with them. They are often worth the trip because the doctors working at them should have both the expertise and the resources available to make things the best they can be for you. There are also many fine individual doctors with experience with this disease outside those centers. The Carcinoid Cancer Foundation maintains an extensive list of doctors who report they have expertise in this area.

Jane and I were lucky to have two of the best people in the field…

That specialist should put together a team of specialists in other medical areas your cancer will have an impact on. In Jane’s case, because the serotonin was affecting her heart, we also had an oncocardiologist and a heart surgeon on our team–and would have added a liver specialist in due time if she had lived.

Support resources for the newly diagnosed

Just as important as finding the right team of doctors is finding others with the disease to talk to. When Jane was diagnosed, the nearest group we could have found was in New Jersey. Honestly, even had we found the New England group I discovered 18 months after Jane’s death, their meetings would have been too far away for her to get to.

There are also many fine individual doctors with experience…

Now, several groups have moved online. There are several support groups on Facebook who function very well. They are private groups open only to patients and caregivers, but all you need to do is ask to be admitted. All the groups below are useful but each has a slightly different personality. I spend time in each regularly, trying to be useful for both caregivers and patients alike.

Carcinoid Cancer Awareness Network

Carcinoid Coffee Cafe

Carcinoid Neuroendocrine Cancer Awareness

ZEBRA Awareness Global NETS

Lovable Lungnoids  (This group deals specifically with carcinoid lung cancer)

The Carcinoid Cancer Foundation also maintains an extensive list of support groups.

Information resources for the newly diagnosed

You can also find additional information and support though a number of other organizations. First, walkingwithjane.org is the website of Walking with Jane, the foundation I set up shortly after Jane’s death to raise money for research and raise awareness about carcinoid/NETs. It has lots of information, but is also in the midst of a renovation project, so I am a bit behind on some things. Use its Resources section to find other groups and organizations, as well as some basic information about the disease. The News Archive at bottom of every page may also prove useful to you.

…several groups have moved online.

The organization that has dealt with this the longest is the Carcinoid Cancer Foundation. Their site has lists of doctors who have dealt with the disease before, as well as national and regional support groups. The Caring for Carcinoid Foundation in Boston has similar, though less extensive, listings. They have a strong research focus.

There are many good videos online the Carcinoid Cancer Foundation has posted–including all the sessions from some excellent patient conferences. Walking with Jane has also posted some, though our collection is dwarfed by theirs. Here is a basic FAQ video we did last fall.

Some final thoughts

I hope this has helped you get through some of the initial shock of being diagnosed. Things are much better now than they were four years ago when we were just beginning to try to figure out what was going on with Jane. There are some therapies in the pipeline that offer hope of a complete cure for many patients. And our increasing knowledge of how this beastie works offers hope of even better treatments in the near future.

There are many good videos online…

Be optimistic, then. You face a real struggle in dealing with this disease, but there is hope. You will often have to be your own advocate, but the doctors you will need to find will understand that sometimes you will have heard something before they have. One of the standard openings at patient conferences is that anyone who has dealt with this disease for more than six months has the equivalent of a Ph.d in the subject. There is more than a little truth in that statement.

Editor’s note: None of the above constitutes medical advice. I am not a doctor–and don’t pretend to be. The information above is based on my experience dealing with my wife’s battle with carcinoid/NETs and what I have learned since from talking with her doctors, other patients and caregivers, and reading everything I can find on the subject. Before making any medical decision you should speak with your doctor about your particular situation and circumstances. They are qualified to help you make decisions on these things. I am not.

Overwhelmed by carcinoid/NETs stories

I am feeling a bit overwhelmed the last few days. I’ve spent some time on the sites of five different carcinoid support groups. Their experiences are jarring. Not only do they bring back memories of Jane’s struggle, but they underline just how lucky Jane and I were to have access to the doctors and resources in this part of the country.

We have to keep working to find answers…

We did not look forward to the 90-120 minute commute each way into Boston. That trip is a walk in the park compared to what most patients face. Several are traveling hundreds of miles to see the kinds of specialists we take for granted. Those who do not travel those kinds of distances often have to deal with doctors who have little or no experience with this most slippery of all cancers.

Overwhelmed by confusion and frustration

Those doctors do the best they can under the circumstances. But is it any wonder that patients become frustrated and confused when their doctors’ own frustrations and confusions are on display. I’ve read twice today alone of patients whose doctors were mystified that the patients’ tumors had gotten smaller after Sandostatin injections. I can’t count the number of times doctors have told patients–just this week–that because their 5-HIAA urine tests were negative they could not possibly have carcinoid.

…those savants are not always easy to get to physically…

In the first case, there is nothing miraculous about carcinoid tumors sometimes shrinking because of Sandostatin or Octreotide treatments. In a small number of cases, the tumors do actually shrink. The drugs block a receptor on the surface of the tumors. If the tumors happen to be just the right type, they starve a little as a result, and shrink. More often, the tumors stop growing for a while. Too often, though, the tumors continue to grow and spread despite the treatment.

Overwhelmed by lack of information

Some of the drugs in trials at the moment have more success than Sandostatin and Octreotide in shrinking and stopping tumor growth. The CAPTEM combination reported on in January has even recorded some complete remissions–as well as shrinking and delaying tumor growth, according to the interim report on a very small Phase II study. But no therapy we have under study works on everyone.

…we have no single test that can absolutely rule carcinoid/NETs out.

Over 60 percent of all the carcinoid/NETs we diagnose involve the production of serotonin. The by-products created when the liver metabolizes serotonin are what the 5-HIAA urine test is designed to detect. About 35 percent of the carcinoid/NETs diagnosed involve the digestive hormones and peptides created by the pancreas. They require a different set of tests.

Overwhelmed by complexity of diagnosis

The body produces over 24,000 different hormones and peptides–and carcinoid/NETs can produce any of them. Unfortunately, we only have tests for a relative handful of those hormones and peptides. And even the tests we have must be ordered by the physician to be of any use in diagnosing the disease.

…no therapy we have under study works on everyone.

The problem is we have no single test that can absolutely rule carcinoid/NETs out. Even the much-praised Gallium-68 scan–which is still in trials–and the Octreoscan patients and doctors have begun to rely on cannot be counted on to detect the disease. If the tumors have a different variety of receptor that does not take up the contrast agent, those scans will be just as useless as any of the traditional scans doctors have used to detect other forms of cancer.

Overwhelmed by the search

Dr. Eric Liu posted on Facebook last month about the value of having a carcinoid/NETs specialist who has seen a significant number of carcinoid/NETs patients. It is one thing to have read about the disease amid all the other things even a general oncologist has to read to stay current on the more common cancers. It is something else entirely to have made carcinoid/NETs the focus of your work. It is one thing to have treated one or two patients with this oddball cancer. It is something else entirely to have worked with hundreds–or even thousands–of people afflicted with the disease.

…doctors do the best they can under the circumstances.

But those savants are not always easy to get to physically–let alone find. Insurance companies continue to give people grief–even under the new regimen–about going “out of network” or wanting expensive drugs that will decrease the company’s bottom line. There are endless hurdles patients have to face–along with the debilitating symptoms.

Resolving confusion, resolving frustration

The size and scale of the problems carcinoid/NETs patients face every day can overwhelm them. We can’t let that happen. We have to keep working to find answers that will not only save their lives, but also give them a better quality of life.

I am feeling a bit overwhelmed the last few days.

That begins with educating both primary care doctors and traditional oncologists about what our  current tests can and cannot do–and why they need to be careful about the conclusions they draw from those tests we do have. It also means finding better ways to let both doctors and patients stay up-to-date about treatments for this perplexing beast of a cancer.

 

Last words to the dying

I spoke to my conscious wife for the last time 40 months ago today. She came out of the coma she had entered shortly after noon at 5:57 p.m. She could not talk.  I told her the doctors said there was nothing left to try and that we would take her off life support the next morning.

…one of the more horrible arrows in Death’s quiver.

She shed a single tear when I told her that. I told her I loved her. I told her I was sorry I had failed her. I told her she was going home to the garden we both came out of more than half a century before. I told her I loved her. She closed her eyes. I kissed her forehead and whispered, “Good night, my warrior princess.” I held her hand until the nurses insisted I go find something to eat. I came back and held her hand until they told me to go to sleep.

Descent into death

Telling her she was going to die may seem cruel to some people. But Jane prized honesty above everything. She needed to know what was happening. The greater cruelty would have been to lie to her, given who she was and what we both believe.

…there was nothing left to try…

In the morning, I read to her, chanted to her, sang to her the songs of our faith. I talked to her. I held her hand as they removed the feeding tube, turned off the oxygen, and took the sensors and IVs away. I descended into death with her as far as a living man can. Just before 8 p.m., there was a catch in her breath. I leaned in to kiss her and caught her final breath with my lips.

Forty months in my personal wilderness

Anyone who wants to understand English literature has to understand the symbolism involved in colors and numbers. Forty is the number associated with trials and temptations. Moses and the Israelites spent 40 years in the desert, Christ spent 40 days in the wilderness.

I descended into death with her…

Forty months after Jane’s death I am beginning to ascend from the gates of Death where I left Jane. Some days, I feel almost human–almost alive. Then, suddenly, I am back in that hospital room being brave and strong despite the certain knowledge that everything had unravelled in less than 24 hours and there was nothing more I could do than hold Jane’s hand and help her let go of the shattered vessel that had been her home.

Forty months of battle, forty months of healing

Forty months after Jane’s death I can finally move my wedding ring from my left hand to a finger on my right for a few hours each day. Last night, I did that for the first time in a public setting. I am finally able–for short periods of time–to accept that the “until death do us part” has happened and that my marriage to this extraordinary woman is over.

Then, suddenly, I am back in that hospital room…

Forty months after Jane’s death, though, my personal battle against the disease that took her life–that ended our life together–is far from over. We know more about her disease than we did on that August morning when her doctor told us what she had. We know more about it than we did the first time we met with Jennifer Chan in Boston. We know more about it than we did the night Jane killed it in the only way anyone ever has whose disease was not discovered before it could be detected.

Forty months of good and bad

Forty months after Jane’s death, we still have no cure. We can still only alleviate the symptoms some of the time–though we have a couple of new ways to do that. People still sit in their bedrooms or bathrooms injecting themselves in the belly once or twice or three or more times a day.

We know more about her disease than we did…

But 40 months after Jane’s death we are spending three times as much on research than we were spending when she died. Forty months after Jane’s death we have a couple of things that look like they have the potential to turn into a cure for at least some patients.

Forty months of small victories

Forty months after Jane’s death we have some better–though not perfect–means of detecting the disease. Forty months after Jane’s death, we have some small embers hope. Whether those embers can be coaxed into a full flame remains to be seen. These are difficult times financially–and research costs money.

…we still have no cure.

Forty months after Jane’s death I spend my days trying to help find the answers to this disease–and to bring comfort to those who are afflicted with it. I read, I think, I write, I plan. I work to raise awareness and spread the knowledge we have gained in those 40 months. I work to help raise the money to fund the research that will tell us the things we need to learn in order to find a cure.

Forty months of healing

But forty months after Jane’s death I also spend a part of every day trying to heal the deep wounds losing her has inflicted on me. Watching the person you love most dying in front of your eyes is a shattering experience. It is an experience I would shield Satan himself from.

…we have some small embers hope.

Carcinoid/NETs is one of the more horrible arrows in Death’s quiver. My work now is to steal that arrow so that no one lives the death Jane faced.

When is a zebra not a zebra?

Most people think of zebras as beautiful animals that inhabit the plains of Africa. They feel badly when a lion or some other predator drags them down. They are harmless animals: wild horses with wonderful stripes painted on their bodies.

There is nothing cute about this disease.

The night before Jane died, her heart surgeon and I had a conversation in the hall about Jane’s struggle with carcinoid/NETs. He explained to me the adage young doctors are taught: “When you hear hoofbeats, think horses not zebras.” It exists to remind them that the most common answer to a set of symptoms is most often the right answer.

The zebra as predator

Unfortunately, when the disease actually is rare, looking for horses is exactly the wrong approach. It can–and often does–lead to death.

Most people think of zebras as beautiful animals…

“A zebra killed your wife,” the surgeon said to me. He was not cold when he said it. Jane’s death hurt him. I could see that. He had done everything he could–everything he knew how to do–to preserve her life. And he had failed. He was the kind of doctor who does not like to fail–not because of ego, though those people exist–because failure means a life gone too soon, a life ended that still had things to offer the world.

The zebra as sadistic killer

I’ve never been able to think of zebras in the same way since that night. A zebra spent 30 years kicking my wife to death. It gnawed on her guts more insidiously than any lion ever devoured a zebra. A lion kills its prey before dining. This zebra had delighted in eating her while she was still alive–rejoiced in every diarrhea bout it induced, in every sleepless night, in every painful moment created by a belly filled with gas.

‘A zebra killed your wife.’

The ancient Greeks had a tradition of calling truly hideous things that made them appear less gruesome than they were. The creatures we call the Furies–goddesses charged with punishing patricides and matricides–they referred to as the “Libation Pourers.”

Owning the zebra

Those who suffer carcinoid/NETs have done a similar thing. They have made their emblem the zebra. They call themselves zebras and refer to their support groups as zebra herds. Some even collect stuffed zebras. They wear the word almost as a badge of honor.

A lion kills its prey before dining. 

And it helps. It helps them forget about the constant diarrhea that makes any trip into new terrain an adventure. It helps them forget that they know where the bathrooms are in any store or mall they frequent–and exactly how long it will take them to get there. It helps them mask the fact this hideous zebra is slowly devouring their lives–is kicking them to death one tumor at a time.

Another long good-bye

I understand it–and I hate it. To the rest of the world, zebras are cute. To me–and to anyone who has dealt with carcinoid/NETs–they are the most dangerous and insidious of predators. They are perfectly disguised for their trade. They are more hideous than the cheetahs of the cancer community–the cancers that kill swiftly and with comparatively minimal fuss.

…kicking them to death one tumor at a time.

If Alzheimer’s is the long good-bye, carcinoid/NETs is its cancer equivalent. It takes its time killing its prey–and leaves the prey completely aware of the pain and suffering it is creating.

Hunting the zebra

People who have not seen the disease up close don’t understand. Some doctors tell their newly diagnosed patients about its slow growth habit as though that were a good thing. Those of us who have seen it know that slow growth habit makes it harder to kill, harder to diagnose, harder to find–harder in so many ways–and ever so much more dangerous than some of its quicker-footed cousins.

It takes its time killing its prey…

There is nothing cute about this disease. It is a wolf dressed up as a zebra. And every day it ends the lives of 33 more members of the herd. It’s time to hunt it down and kill it.

Research: Drug/Radiation combination works in mice

A combination of an oral cancer

drug that inhibits the VGEF pathway that stimulates blood vessel growth in tumors and targeted internal radiotherapy reduced tumor volume by 97 percent in transgenic mice with pancreatic NETs, according to an article in EJNMMI Research.

The group combined an oral dose of vatalanib with the radio-peptide [lys 40(Ahx-DTPA-111ln)NH2]-exendin-4, that binds with the GLP-1R receptor on insulinomas and other NETs. The combination worked better than either treatment alone.

Drug reduces radiation dose

The valatanib, however, allowed for a much smaller dose of radiation, resulting in no damage to the pancreas. The valatinib had to be given at about the same time as the radiation because giving it earlier decreased the amount of radiation the tumor absorbed.

Use in humans is a long way off, of course. The technique will face the lengthy drug trial process before becoming broadly available. Many treatments that work in animal studies prove not to work at all in people.

Diagnostic technique wins orphan status in Europe

announced its OPS202–a gallium-68 driven PET scan–has received an orphan drug designation from the European Medicines Agency.

According to the preliminary research results released at the ASCO conference in San Francisco, the gallium-68 scan has “shown superior results compared to other modalities.” While the scan is diagnostic, it has therapeutic possibilities as well, using Yttrium-90 (90Y)–which is also under study.

Research into method taking place in US, Europe

The diagnostic procedure, which will go by the trade name SOMscan, takes about an hour to do. The gallium-68 binds to the somatostatin receptor subtype 2 on the surface of the carcinoid/NETs tumor.

Phase I trials will start in Europe later this year. A Phase II trial will start in the US at Vanderbilt this year, as well.

Tumor profiling aids treatment

Caris Life Sciences presented on its comprehensive tumor profiling service at the San Francisco ASCO meeting. They said their profiling program found drug targets in 90 percent of the carcinoid/NETs patients they looked at.

The company said their system goes beyond what can be found by DNA sequencing alone and can help

doctors tailor their approaches to specific patients with specific tumor profiles.

Research cites two NETs patients

They cited two specific carcinoid/NETs patients. In one, they found alterations in the expressions of three proteins and one somatic mutation. Identifying these variations, they said, identified an effective treatment for that patient.

In the second they found an alteration in a protein not generally measured in carcinoid/NETs patients that proved relevant to treatment.

CAPTAM study still the research headliner

The other major event of the last few months, was Dr. Robert Fine’s work with the CAPTAM drug combination we reported on last month. While his results were only an interim report, the fact the pairing is moving into a small Phase III trial is important.

I have read some patient accounts from England in recent days about their use of CAPTAM. Those stories make it appear that CAPTAM may be getting regular use in Europe, though I have only seen anecdotal evidence of that to this point. I’ll keep digging in the hope of finding out more.

Patients supporting patients

Spend a few days browsing the online carcinoid/NETs patient support groups on Facebook and you will come away with two impressions. The first is that there is no more caring group of human beings anywhere. There are many such groups for other forms of cancer and for those of us buried in grief that are as supportive and familial as the various ‘noid groups I spent time with over the last week. But none exceed them.

…discoveries will mean nothing if no one hears about them…

If you have carcinoid/NETs you need to become a member of one or more of these groups. I wish they had existed–or that we had been able to find them–when Jane was diagnosed. It might have made our lives a bit easier to have someone to share our agony with who really knew and understood what we were feeling. Don’t misunderstand me: We had great doctors and nurses and wonderful friends. But a carcinoid diagnosis is like the experience of grief–a thing only those who are going through it fully understand.

Support from doctors uneven

The other thing I came away with, though, was less positive. Because of the amount of time I spend with researchers and doctors and patients here in New England–where we have first class facilities and some of the most knowledgeable people in the world about this disease–I sometimes lose track of how desperate and frustrating this disease is for the vast majority of patients out there.

…only those who are going through it fully understand.

There are pockets where you can get the necessary expertise you need, but outside those pockets is a vast wasteland inhabited by oncologists who are not up on the current thinking–at best. At worst, they have so little idea about the disease that they don’t even perceive it as a cancer.

Horror stories from the front lines

On one site I visited to try to generate the list of patients and deceased for this year’s Walking with Jane Marathon Walk T-shirt, a recently diagnosed woman was stunned to learn from that post that you can die from carcinoid/NETs. Her oncologist had apparently told her it was a “manageable disease” like diabetes–and not even potentially fatal.

…outside those pockets is a vast wasteland…

Another was told that despite high readings on the Chromagranin A and 5-HIAA urine tests, that if a set of scans came back negative, they could “lay the carcinoid thing to rest.” Another was told to ignore anything learned on the Internet, even things posted by Dr. Eugene Woltering, one of the leaders in the field.

Patients provided better information than doctors

People had routinely been told by oncologists that carcinoid was not really dangerous, that it grew very slowly, that it was unlikely to spread, that there was no need for follow-up exams beyond a few years after successful surgery, that the disease could be managed, that they would live fully normal lives, that the tumors were benign.

Her oncologist…told her it was a ‘manageable disease’

I’m a layman–an English major, no less. I have no special training in medicine beyond having read the various studies done on carcinoid/NETs in recent years. I am certainly not an oncologist of any kind. The only truth in that laundry list of claims above is that most carcinoid/NETs tumors grow relatively slowly–and that slow growth is not a benefit because it makes it harder to kill.

None of these patients are stupid. They listen, as anyone would, to what a person they perceive as an expert in the field tells them. The problem lies with the doctors, not with the patients.

We need to do more to educate doctors

I would think an oncologist, confronted with carcinoid/NETs for the first time, would seek out the latest knowledge on the disease and base her/his actions on that knowledge. Apparently, that does not happen as often as it should.

None of these patients are stupid.

There is great frustration and anger in the carcinoid/NETs patient community. Yet there is deep and abiding patience and love there as well. Many of these patients deserve better than they are getting. My time with them reminded me just how important the education portion of this mission is. Yes, we need to continue to support the research side, but our discoveries will mean nothing if no one hears about them–or acts on them.

Editor’s Note: All these support groups are private groups on Facebook. They are open only to patients and their immediate families.