Category Archives: NETwalkers Alliance

My experience: Gallium-68 scan

Metastases, NET Cancer Awareness Day/Month, NET cancer experiences, NETwalkers Alliance, Personal treatment stories, Treatments

(Editor’s Note: This is the first of two parts of a piece Beth R. McGivern has written about her NET cancer experience. In this section, she talks about her diagnosis and her experience with the new Gallium-68 scan that is nearing the end of trials in the US. In the second part, she talks about her surgery and the drug trials she is now considering. That piece will run here the end of next week.)

by Beth R. McGivern

Discovery and questions

In 2010, I was diagnosed with widely metastatic disease with tumors all over my abdominal and pelvic area, the largest being a 12x10x8 cm tumor hanging from my liver. Surprisingly, there were only a few very small tumors in my liver.

…the expert opinions were so divided as to what I should do.

My first specialist started me on monthly Sandostatin injections but did not believe I should have surgery. I then had another specialist review my case through a second opinion service sponsored by my employer. This doctor also did not believe I should have surgery.

Scanning options

I was quite dissatisfied with my first specialist so I changed to another doctor and they suggested that I have an octreoscan, which I had never done. I had heard that there was a better scan called a Gallium 68 PET (68-GA) that was much better at detecting tumors than the octreoscan. This doctor thought I should have a de-bulking surgery and the octreoscan would help define my tumor load and surgical plan.

My first specialist started me on monthly Sandostatin...

The FDA has not approved the 68-GA PET as a diagnostic test in the US at this point. At the time of my investigation, the closest place to get into a clinical trial for a 68-GA PET was at Vanderbilt University in Nashville, TN. The problem with the clinical trial was that it would not be covered by standard medical insurance.

Goals and fears

The goals of this test were 1) to get an accurate idea of my tumor load, 2) to see if I had the receptors that would make some of the radiopeptide therapies available in Europe a treatment option for me and 3) to get another opinion about how I should treat my disease.

The FDA has not approved the 68-GA PET as a diagnostic test…

In July 2012, I had my appointment with Dr. Eric Liu, followed by my scheduled 68GA PET scan. This was my first scan other than a CT. I was nervous about being injected with a radioactive tracer–it just sounds a bit scary.

Last in line

Dr. Liu was very articulate and professional and spent a lot of time with me. I was very impressed with my experience at Vanderbilt-Ingram Cancer Center. Dr. Liu talked about my experience to date to gather some history. He said the 68GA PET scan would answer two questions: 1) Do I have appropriate receptors for the scan to work? 2) What is the extent and location of my disease?

…it just sounds a bit scary.

The doctor said I was the last of the 50 patients that were in this clinical trial. He also mentioned, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US. This cost was explained to me up front before my appointment, so there was no surprise here.

Pre-test procedure

Dr. Liu said the injection should not hurt or cause any side effects–but an EKG was required before and after the scan. He assured me the radioactive tracer has a very short half-life and that I would be fine going through airport security the next day. We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.

…I was the last of the 50 patients…

The prep for the scan included the EKG and the 68GA injection. Then I drank the same large container of barium contrast that I have had for all my CT scans. This process took about an hour. The injection did not sting, burn or cause any adverse consequences.

The scan experience

The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes. The machine does not tell you to breathe in and out like the CT scanner does.

The injection did not sting…

Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move. Dr. Liu came into the room while the scan was going on. This surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.

Scan results

After the scan was over I went for the second EKG and then to lunch.

It was a nice pep talk.

Later in the afternoon, we met again with Dr. Liu. He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease there is no evidence of metastatic disease outside of the abdomen/pelvis.

Surgical questions

With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the 68GA scan on the computer screen. It was quite amazing, though I had no idea what we were looking at. The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.

…I was positive for the receptors… 

The largest tumor hanging from my liver would most probably cause a bowel obstruction should it grow. There was also, they said, multifocal small bowel disease. That is where the primary tumor is located.

More surgical questions

Dr Liu said that he definitely thought that this was resectible because all of the tumors are in the abdomen and pelvis, i.e., not bone, brain or other mets. Surgery, although not curative, would mean that I would most likely die of something else other than carcinoid cancer.  He described the surgery as major– probably six hours in the operating room with a 6-8 week recovery period.

…I had very low liver involvement…

Dr. Liu was the third carcinoid specialist that I had seen. Two had recommended taking Sandostatin and “watch and wait.” I took Dr. Liu’s surgical recommendation  lightly as he is a surgeon and they usually recommend surgery.

Looking for answers

I was seeing another specialist in New York who was also recommending surgery and putting some pressure on me to do this, but I was uncomfortable because the doctor was not being clear as to what the surgery would entail or the rationale for it. Also, I was not comfortable with a giant abdominal surgery when I had no symptoms and the expert opinions were so divided as to what I should do.

He described the surgery as major…

At this point, I had two opinions for surgery and two for watch-and-wait. Later in 2012, I went to a conference sponsored by the New England Carcinoid Connection support group in Boston and heard some of the doctors from the Dana-Farber Cancer Institute speak. I thought they were more conservative and concerned with quality of life issues than most of the other doctors I had been to. I decided to get my fifth opinion there and that would break the surgery-or-watch-and-wait tie that I was in.

(Editor’s Note: Beth R. McGivern is a member of our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team. You can make a donation to her Walk effort here.)

Together, we can do anything--nothing is impossible. Let's cure NET cancer.
Together, we can do anything–nothing is impossible. Let’s cure NET cancer.

Filling out Form 990

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

An apology or two

I’ve had an insane week that has put me so far behind on a number of things I may never catch up.

First, my apologies: I have a piece in hand for liver radio-embolization. I’d promised the writer to get it back to him with my edits close to two weeks ago. I just haven’t gotten there. The piece is coming–just not as soon as I’d like.

…my bottom line. 

There is also a series on immunotherapy coming. I’ve, again, been too busy to write it and get it off to the doctor who has agreed to read it and make sure I don’t screw anything up. It is coming–just not quite yet. I want to be sure I get it right.

Life intervenes

Part of the problem is my father-in-law was admitted to the hospital again last weekend, one day before he was supposed to come home from rehab. He is doing better and is back in rehab as I write this, but it’s been a scary few days–and I’m not sure he is close to being out of the woods.

I want to be sure I get it right.

And then there’s the other fly in the ointment: I have been at work on our first long Form 990 EZ filing for Walking with Jane, Inc. For those of you not involved with running a foundation, we are required to file a form with the IRS every year in order to keep our tax exempt status. That is Form 990.

Living with the Form

That process, at the federal level, is insanely simple, until you raise more than $50,000 in a year. You file a postcard online that requires little more than your corporate ID number and a statement that you did not make more than $50,000. It takes about five minutes.

…it’s been a scary few days…

Unfortunately, the Commonwealth of Massachusetts requires you file one of the longer 990 forms if you go over $5,000, as well as a form of its own. That is significantly more complicated–and significantly more complicated than I anticipated. I now understand why our lawyer suggested we might want to think about an accountant.

Requirement makes sense

I understand why the Commonwealth requires the more complicated form. In fact, I wondered why the IRS didn’t require it as well. The detailed questions the form asks–and the records it requires one keep–make it pretty difficult for anyone short of a criminal genius to engage in fraud or embezzlement–at least I would think so.

That is significantly more complicated…

When time allows, I will post those completed forms on our About Us section of this website. I think it’s important that you see what kind of money comes through our door at this point–and where that money goes. It isn’t a huge amount–about $21,000 last year, if memory serves–actually passed through our hands.

Money vs. Money

That’s a very different number than the amount we generate each year. Most of the money we create for carcinoid/NETs research is given by donors directly to the Dana-Farber Cancer Institute, the American Cancer Society, the Caring for Carcinoid Foundation or the Carcinoid Cancer Foundation. Unless it is donated to our Jimmy Fund Walk, the Walking with Jane Fund at DFCI or to our Relay for Life team’s online site, I don’t even know that money exists unless the director of an organization says it happened. And they often don’t know it has.

It isn’t a huge amount…

 

I know it happens because I see on our stats page here that people clicked on a “giving” link to those organizations–but once you’ve gone to their site to make a donation, there is no paper trail here about what you gave them. And they have no idea that you arrived there from out site and made a particular donation–unless they have a better stats section than we do.

The point of the exercise

 

I can say with certainty that our Walking with Jane, Hank and Anne Jimmy Fund Walk team generated just under $67,000 for NET cancer research at DFCI in 2014, for example. I can also say, with certainty, that less than 20 percent of that money was ever held by Walking with Jane, Inc. I can also say with certainty that another $15,000 was donated  last year directly to the Walking with Jane Fund at DFCI that I set up in the year after Jane’s death–and that none of that money ever was a part of Walking with Jane, Inc., for all that I know Walking with Jane inspired that amount to be donated.

I know it happens…

And it doesn’t bother me. When I started on this journey my only interest was in finding a way to cure carcinoid/NETs. Part of that is about raising awareness: you really can’t cure something if you don’t know it exists. Part of that is about research–and you can’t do research without a steady flow of money. If people want to give that money to Walking with Jane because they don’t want to get on someone else’s mailing list, that’s fine with me. If they want to give that money to some other group engaged in fighting carcinoid/NETs because of something they read here or hear me say somewhere, that’s fine with me, too.

The ultimate goal

So long as we find a cure, so long as this disease goes into the dustbin of history with small pox and polio, so long as we find ways to let people take the walks Jane and I will never get to take,  I don’t care who gets the money or the credit. I just want this disease dead before it kills someone you love.

…that’s fine with me.

And that’s my bottom line.

For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.
For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.

 

 

May Marathon Walk Update

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

A Hero of our own

I’ll start this month’s update with some exciting news: Our team will have its own Walk Hero this year.

Jillian raised almost $7000 last year.

Jillian Emmons, who serves as one of our NETwalkers Alliance co-captains, has been named as a Walk Hero–and as our team’s official Walk Hero partner. What that last bit means I am not 100 percent clear on, but given the small number of Walk Heroes—one for each mile—this is a singular honor for both Jillian and our team. I know you will all join me in congratulating Jillian on her appointment.

By the numbers

Our official numbers, as of this morning, have us at five Walkers officially signed up and $7,639 raised so far. That’s good for fourth place in the team standings. However, I have an additional $2,000 in donations from my latest direct mail campaign that have not yet been credited. That will not move us up in the standings—we trail third officially by about $2500—but it does keep us on the top page of the leader board. The top team has raised nearly $13,000. We’re closing in on $10,000.

…this is a singular honor for both Jillian and our team.

The standings, though, are less important than what we are trying to do for NET cancer research. Jillian’s becoming a Walk Hero creates a platform for raising awareness about NET cancer. Every new member we pick up is one more spokesperson who also helps raise awareness. Every event we hold is another opportunity to spread the message about this disease and what it does.

The personal touch

Sometime in the next two months, our local daily and weekly newspapers will run stories about my personal Marathon Walk effort. They’ll run a picture of me striding along on a training walk. But the important thing about those stories will have nothing to do with me. They will give me the opportunity to tell our NET cancer story to an audience that may not have heard it before. That chance to educate people about this vile disease is every bit as important as the money our events will raise.

Jillian’s becoming a Walk Hero creates a platform… 

A few months ago, we received a check from Safeco Insurance because of the efforts of the people at W. T.  Phelan in Belmont, MA last year. In the next few weeks, we will create a photo-op with Matt Kulke and others to formally present that $3000 check. We could just have submitted that check and moved on. But that presentation, again, gives us an opportunity to get the word out about NET cancer and carcinoid syndrome and the ongoing research the Dana-Farber Cancer Institute is doing in that area.

Create Walk opportunities

As you think about your next event, please also think about it in those terms. As I say all the time, if you need me to come talk at an event, I’ll be there unless I’m already promised somewhere else. I’m sure others on the team can make similar offers. But each of us has a NET cancer story to tell—and those stories matter.

We could just have submitted that check and moved on.

While many of you know something about Walking with Jane, the foundation I set up after my wife died, most of you only know the webpage and what we do with DFCI. In addition to that, among other things, we give scholarships at the school Jane and I taught at and at Bridgewater State University, where Jane did her undergraduate degree and some of her graduate work.

Activity ideas

This year’s recipient of the BSU scholarship is Devin Kenney—a double major in chemistry and biology, who is also pre-med. He and his brother run a small company that does reptile shows. He has offered to do a show for free for us as a fundraiser. I have no idea how to make that work, but if you do, I offer you his services. Just let me know what your plan is and I’ll put you in touch with him.

…each of us has a NET cancer story to tell…

We are also looking for t-shirt sponsors again this year. I’ll have a letter shortly I’ll send out to team members for soliciting those. Sponsor levels include: platinum for $1000—the company logo on the front of the shirt; gold for $500—the company name on the front of the shirt; silver for $250—the company logo on the back of the shirt; and bronze for $100—the company name on the back of the shirt.

Moving ahead

We already have two platinum levels from money donated last year after the shirts were printed—including Safeco Insurance—and four bronze sponsors from people who jumped the gun locally, knowing I was going to ask. You can start without my letter if you want, but I must have all sponsors in hand no later than August 15.

We are also looking for t-shirt sponsors…

Saturday, I was at a local craft fair. The weather was too nice, so we didn’t do very well, but we made a little money and we educated a few people. Next week, we will do a meat pie supper for Relay for Life and a yard and craft sale in early June for the same group. I’m working on a mini-golf tournament and a comedy show and another direct mail campaign for the Marathon Walk. And I’ll set up a booth at additional craft fairs over the course of the summer. I’m retired and widowed. I have way too much time and not enough to fill it with.

The learning process

But I’ve learned a lot about fundraising and NET cancer both along the way. I’ve learned to listen to what people are saying. I’ve learned that there are people who know how to do things I have no clue about—and if I ask them how to do it, they’ll be glad to help me figure it out. The people in the Walk office are more than willing to get you together with people who know how to run a golf tournament—or anything else—and you should use them as a resource when you can.

I have way too much time and not enough to fill it with.

And I’m always here. If I don’t know how, I’ll find you someone who does. And if no one does, we’ll figure it out together. You can always email me at walkingwithjane@gmail.com.

Facing the Walk challenge

Jillian raised almost $7000 last year. Virtually every idea she had was brand new to both of us. Some worked really well. Some crashed and burned. But the one thing I know about NET cancer patients is there is no quit in them. There’s no quit in their caregivers either.

…we’ll figure it out together.

So here are the three challenges for this month: 1.) If you are not signed up yet, get signed up; 2.) recruit at least one other person to join our team; 3.) Raise some money. With 144 days standing between us and the Walk, we just need to keep moving forward.
Talk to you in June, if not before.
Pax et lux,
Harry
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.

Marathon Walker Update for April

Boston Marathon Jimmy Fund Walk, NETwalkers Alliance, Uncategorized

Walk season

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance, , , , , ,

The walking man

I walk a great deal. Under normal circumstances, I walk 3-5 miles every day. In the summer, as I ramp up for the Boston Marathon Jimmy Fund Walk, that number climbs until I am doing 60-80 miles a week. After that 26.2 mile effort, I taper off for a few months. Winter arrives and I am reduced to walking an hour each day in a local mall.

Come walk with me.

Walking is good for me in two very different ways. The first is physical. Walking helps me build muscle and lose the flab that winter brings with it. But a walk is also a mental thing for me. It becomes a meditation–and the longer the walk, the deeper that meditation becomes.

Walk history

Jane and I tried to walk together every day when she was alive. We would hash over the day’s events or our plans for the next day. Sometimes we would try to decide what we needed to do about the dying lawn mower or what piece of the lawn we were going to turn into a new garden bed. Sometimes we just moved in companionable silence, holding hands.

I walk 3-5 miles every day.

But the habit of walking was there for me long before I met Jane and has endured long after her death like little else that we did together. Part of that has to do with the realization that walking was a good way to raise money and awareness for the cause of NET cancer–and for other issues I care about.

MS Walk

This weekend, I will head down the road to Dartmouth. They are doing a walk for MS research. A friend from my high school days lost a sister to it, and she is part of the reason I do it. But I also see it as an investment in other lives–as I do with all these walks.

Sometimes we just moved in companionable silence…

I have a friend whose mother has wrestled with the disease for many years. I’d like her to have more years with her grandchildren. I have another friend when fights the disease every day, herself. She has two still young children. I’d like her to see them graduate from high school. I’d like to see her hold her grandchildren in her arms. Jane’s cousin has a son with an aggressive form of the disease–but he was one of the lucky ones in a drug trial. He is not cured, but the pace of the disease has slowed.

Walking the walk

Later this month, I’ll walk with a former student and her team as she walks to raise awareness about her mother’s rare angiosarcoma. It is known even less well than NET cancer. She deserves to see her young grandson grow into adolescence and adulthood.

I’d like her to see them graduate…

Next month, I’ll travel to Chelmsford to walk against Cystic Fibrosis, a nasty bit of business I’ve seen several times in my life. I’ll remember the classmate who died when I was a high school freshman–a person I did not know at all, but who placed the name of the disease in my mind. More importantly, I’ll walk with my friends Nancy and Bruce and their 30-something daughter who had a lung transplant four years ago days before her CF would have killed her. And I’ll walk in hopes my friend Wendy’s daughter, now a teenager, will live in a world where a CF patient will have the same life expectancy and quality of life as anyone else.

Hunger Walk

Next month, too, I’ll do the Walk for Hunger in Boston. I’ll do it because I know what it is to be poor–to not know where your next meal is coming from or what it will be. My sophomore year of college, I learned how ketchup and hot water can be used to make your stomach think you’ve had real food. And then things really got bad.

I’ll remember the classmate who died…

I’ve known too many people who have spent time homeless, too many people who have had to rely on soup kitchens and food pantries, too many people who’ve gone to bed hungry so their children can go to bed a little less hungry. Every mile I walk, every dollar I raise, makes an immediate difference in someone’s life that day.

Relay for Life

In late June, I’ll walk through the night at the Relay for Life of Greater Fall River to raise money for general cancer research and patient support programs. The American Cancer Society only spends 20 percent of its income on cancer research, but what they do with the majority of their money is every bit as important to cancer patients.

And then things really got bad.

A great treatment is of no use if you can’t get to where it is offered, is of no use if you have no place to stay when you get there. And cancer treatments can be both physically and mentally debilitating, as well as financially crushing. Road to Recovery provides rides to treatments; Hope Lodges provide patients and their families a place to stay during treatment; Look Good, Feel Better provides wigs, make-up lessons, and prosthetics; there is even a program that helps patients find ways to pay for treatments.

Marathon Walk

But my biggest commitment comes in late September with the Boston Marathon Jimmy Fund Walk. Most of the money people raise in that event goes into a general fund for research and patient support.

…cancer treatments can be both physically and mentally debilitating…

But teams like our NETwalkers Alliance raise enough money to determine where that money is spent. Every dime our team raises is earmarked for NET cancer research at the Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors.

Walk for the living

NET cancer killed Jane, but I don’t walk for her. She’d never forgive me if I did. Rather, I walk to help the 112,000 diagnosed patients in the US for whom we have no cure;  I walk so people like my friend Jillian will see her boys into adulthood and hold her grandchildren in her arms; I walk so people like my friend Alicia will have years to spend with her husband; I walk so people like my friend Pam can celebrate her daughter’s achievements; I walk so people like my friend Beth can have the life with her husband that Jane and I didn’t get to have.

…my biggest commitment comes in late September…

And I walk so the caregivers and families of those 112,000 diagnosed patients don’t face so young the grief of losing a parent, like my friend Jenaleigh has; face the grief of losing a brother or sister, like my friends Elizabeth has; face the loss of a child, like my father-in-law has; face the loss of their beloved, like my friend Robert and I have.

Time to walk

I walk every day. I hope every step I take helps someone, just as I hope every word I write–every action I take–makes a positive difference in someone else’s life.

NET cancer killed Jane…

You can help make that difference. Come walk with me.

Come walk with me. Together, we can make a difference.
Come walk with me. Together, we can make a difference.

We need you–all of you

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Faces of NET cancer

I follow about a dozen online NET cancer support groups. I check in with each of them for at least a few minutes every day. The stories I read in them, and the questions people ask, tear at my soul. Sometimes, they take me back to Jane’s experiences. Sometimes they open new possibilities of hope. Sometimes they tell me that someone I have come to know through their posts will no longer be posting because their battle has ended the same way Jane’s did.

…I’m not asking you for money.

I don’t comment very often. On medical issues, the doctors know much better than I do what a set of symptoms means. I try to be supportive when someone goes in for surgery or some other procedure–knowing how much those few words of support are to someone with NETs. I share these posts on those sites when what I’ve written seems appropriate.

The need to listen

Mostly, though, I listen. Walking with Jane‘s goal has always been to help patients–and the only way to do that is to listen to people talk until you understand what it is they need. Some of the most important pieces I’ve written in the last year emerged from patient concerns I first learned about by listening to what people in the groups were worried about.

…the questions people ask tear at my soul.

But there are some underlying themes in those posts that never really get addressed. They are the elephants in the living room of NET cancer that sometimes we desperately need to talk about–but are terrified to raise outside the edges of a conversation. In theater, we talk about the subtext of a script because people in real life never talk about the real issues they confront–and neither do actors on a stage.

The elephants in the room

The two biggest elephants in the room are interconnected. The first of these is we have no cure for advanced NET cancer–and very few NET cancers are discovered before they have become advanced. The treatments we have can slow tumor growth down for a time for some patients, can alleviate the symptoms for some patients. For a lucky few, those treatments can even shrink the tumors they have for a while.

…people in real life never talk about the real issues they confront…

And we have new drugs and procedures in the pipeline that may help more patients survive with a better quality of life for a longer period of time. But we don’t have a cure. We have ideas that may eventually turn into cures, but those ideas are only now getting into trials and are likely years from being proven and adopted or disproven and shelved.

Some things, you never forget

But the lack of a cure leads directly to the second elephant in the room: People die from NET cancer every day. I have seen what that death looks like. It is something I can never forget.

…we have no cure…

And it is something we each need to work to change every day–no matter how difficult that work may seem.

Walking the talk

For the last four years, I’ve walked the Dana-Farber Cancer Institute’s Boston Marathon Jimmy Fund Walk to raise money for NET cancer research. I’ve been joined by former students and by friends and families of those who have lost loved ones to NET cancer. Over the four years the groups I’ve walked with have raised over $130,000 to help fund research we hope will lead to a cure.

It is something I can never forget.

But last year was special. In April, I got a note from a young woman with advanced NET cancer. She wanted to walk with our team. She didn’t walk the entire 26.2 miles–she wasn’t sure she could. But she took on the 13.1 mile course. And she raised $7000 doing it.

Being brave because we need to be brave

By Walk Day, we had three more patients determined to walk at least part of the distance. One felt even the three-mile course would be a stretch for her–so she recruited three friends, in case she needed them, and pushed her wheel chair from the Jimmy Fund building to Copley Square. And I know of two other patients who made the journey over part of the course for the same purpose.

But last year was special.

The thing that strikes me about NET cancer patients is their bravery in the face of long–seemingly impossible–odds. They need to be brave because they know what will happen if nothing changes. Their caregivers need to be brave for the same reason.

The unkindness of strangers

For 40 years both the federal government and the cancer establishment largely ignored NET cancer because they did not see their support of it as cost-effective. That meant NET cancer patients became orphans totally at the mercy of the kindness of strangers–and there were very few kind strangers. The result of that less-than-benign neglect was likely hundreds of thousands of deaths.

They need to be brave…

And even since the “rediscovery” of NET cancer by those with resources seven years ago, the amount of funding NET cancer researchers have found still does not amount to table scraps left behind by the family dog. Last year, the total spent on NET cancer research in the US from all sources was no more than $10 million at best–and realistically likely less than $8 million.

We need everyone–starting with you

I know what NET cancer looks like. I know how crippling the diarrhea, the flushing, the panic attacks–all of it, is. But we need every patient’s help if we are going to change the landscape of NET cancer. I know the commitment of time and energy being a lay caregiver for a NET cancer patient takes. I’ve lived it. But we need the help of very caregiver if we are going to save the people we love from this vile disease.

…table scraps left behind by the family dog…

On September 20, I will take on the Boston Marathon course from Hopkinton to Boston–26.2 miles. Between now and then, I’ll write letters and do every fundraiser I can manage. I’ll talk to women’s clubs and business groups and high school assemblies.

Come walk with us

But I’m not asking you for money. I’m asking you for something more. I’m asking you to come walk with us, either on the Jimmy Fund Walk if you are here in New England, or on some other fundraising walk for your regional NET cancer program if you are not. Every NET cancer research program is dying for your help and support.

…change the landscape of NET cancer.

To quote another of my heroes, George Washington Carver: “Put down your buckets where you are.” If we are going to change the future, we all have to do more than we think we can to make it happen.

We need every caregiver and every NET cancer patient's support if we are going to find the money to cure NET cancer. Come walk with us.
We need every caregiver and every NET cancer patient’s support if we are going to find the money to cure NET cancer. Come walk with us.

 

Preparing for a long walk

Boston Marathon Jimmy Fund Walk, Fundraising, Jane, NETwalkers Alliance, Uncategorized

Hat in hand

Dear friends,

Jane and I usually liked snowstorms. They often meant an unexpected day off from work and an extra hour or two snuggling under the covers. We would have a leisurely breakfast, then go out to shovel together. I would clear a path to the drift from the snowplow at the end of the driveway and work my way through that mountain while Jane attacked the path to the front door before starting on the snow in the driveway.

We are making a difference…

We made a game of it, her working from one end and me from the other. When we finally met somewhere in the middle we would hug and kiss as though we had been separated for days rather than an hour–and that the obstacle between us was greater than a few feet of snow.

Missing my other half

Clearing the snow from the driveway and walks is not the same since Jane died of NET cancer in December of 2010. Now it is just a chore I try not to think about as I do it. Every snowstorm is laced with too many memories. The hot chocolate doesn’t taste the same when there is no one to share it with.

We made a game of it…

Doctors and researchers learned a lot from Jane’s final struggle with NET cancer—and they have learned a great deal more since. The use of liver embolization has become relatively common in assaulting NET cancer tumors that have metastasized to the liver. We have promising new drugs in trials that may better slow the progress of the disease and its debilitating symptoms.

On the near horizon

Later this year, a Phase 2 trial on an immunotherapy treatment that seems to offer a chance of a cure for some patients will begin. A new scanning technique using Gallium-68 is being tested and is detecting NETs we were not able to see before—as well as giving greater clarity to those we can see using the relatively new Octreoscan developed since Jane’s death.

We have promising new drugs in trials…

Those new scanning methods, combined with greater awareness in the medical community, have increased the number of NET cancer cases being diagnosed every day. Four years ago, we were finding 34 new cases a day. Now, 40 new people will hear they have NET cancer in the US today. Another 40 will get that news tomorrow and another 40 the day after that.

Cost of a cure

And while we can offer them more hope than we could offer Jane 55 months ago, we can still not offer them a cure. It is only a matter of time before the number of deaths attributed to NET cancer every day begins to increase to match the number of diagnoses if we don’t keep moving the research forward.

Now, 40 new people will hear they have NET cancer in the US today.

But research costs money—lots of it. And while drug companies and government have increased their support a little bit in recent years, we are still spending barely $8 million a year on a form of cancer that is so nasty even patients are sometimes reluctant to talk about it and its symptoms.

Walk the walk

That’s where you and I come in. I’m not wealthy—and neither are the vast majority of you who will receive this letter. But fighting a cancer whose research has been so poorly funded for so many years, every dollar counts.

…research costs money—lots of it.

And every dollar you donate through this letter will go straight into carcinoid/NETs research at the Dana-Farber Cancer Institute through my Boston Marathon Jimmy Fund Walk. Again this year, I will take on the 26.2 mile course in Jane’s memory–and in support of NET cancer patients everywhere. Please, give what you can.

Change the future

We are making a difference with every dollar every day. And some day, I really will stand at Jane’s grave and tell her we’ve killed her cancer once and for all—that no one is going to die of it ever again.

Please help us make that day happen sooner with your donation today.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Team Captain, NETwalkers Alliance

p.s. An anonymous donor has again offered to match the first $5000 I raise between now and June 30. That means when you donate to my Boston Marathon Jimmy Fund Walk now, your donation is effectively doubled. Please take advantage of this generous opportunity.

p.p.s If you cannot make a donation, please share this letter with people you know and encourage them to get involved. Or, if you’d rather make a donation for NET cancer elsewhere–please do so. I want this thing dead.

p.p.s Of course if you’d like to walk with us, either for real or virtually, you can sign up for that here.

The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic--the research is real.
The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic–the research is real.

WWJ NET News for January 15-22

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, NETwalkers Alliance, WWJ NET Cancer News

The beginning

Hello and welcome to the first edition of the Walking with Jane NET Cancer News Podcast. I’m Harry Proudfoot, the chairman of Walking with Jane, and I’ll be your host for these weekly audio podcasts. Our hope is to bring you up-to-date on what is happening in the Carcinoid/NET cancer community, both in terms of the latest research and treatment and in terms of fundraising and awareness events going on across the world.

If you have news you’d like to share with that community—whether it be a piece of research or an event—please send an email with the details to walkingwithjane@gmail.com. We’ll check it out and get a story on the air as quickly as we can. We will also post confirmed fundraising and awareness events on our calendar page at walkingwithjane.org.

AdVince virus close to initial trial

Our lead story this week is about the Uppsala Oncolytic Virus trials researchers hope to begin this spring in Sweden. The initial test will be on pancreatic NETs patients. But all of this is pending approval from the Swedish Medical Product Agency’ of the researchers application. That application is supposed to be filed in either February or March of this year.

The treatment has been renamed AdVince for the late Vince Hamilton, whose large donation has made clinical trials possible. Hamilton, who owned Tethys Oil, died of NET cancer in March of 2014.

The AdVince for the trials has been produced and purified and the protocols for the trials are being finalized. This initial human trial will begin with dose escalation to demonstrate the virus is safe for human use. Researchers will try four different dosages with three to six patients in each dosage group.

The AdVince virus is programmed to attack NET cancer cells while leaving healthy tissue alone. The hope is the virus will destroy the tumors it finds. If it works as hoped, it could offer patients the possibility of a cure.

The trial is six months behind where researchers hoped it would be at this point.

CFCF immunotherapy initiative

Another possible cure may come from research into immunotherapy. The Caring for Carcinoid Foundation has announced it will fund three separate initiatives on this potential treatment, including a clinical trial involving a combination of two immunotherapy drugs already in trials for other cancers. That trial will take place under the direction of Dr. Pamela Kunz of Stanford University who will lead an interdisciplinary team.

Immunotherapy expert Dr. Carl June, and neuroendocrine tumor researcher Dr. Xianxin Hua, both from the University of Pennsylvania will head a separate project that will develop immunotherapies specifically for NET cancers. They plan to modify CAR T-cells to target and kill neuroendocrine tumor cells, a method used in patients with other cancers that has had strong successes.

The final piece of the CFCF initiative will fund basic research into the immune characteristics of NET cancer tumors to guide the organization’s testing of immunotherapy treatments. The Foundation is inviting researchers to apply for grants for studies in this area of research.

Initial funding for all three of these initiatives will come from a one million dollar grant to the Caring for Carcinoid Foundation from the TripAdvisor Charitable Foundation. Caring for Carcinoid’s executive director Ron Hollander sees that grant as, Quote, a challenge to CFCF and the entire NET community to rapidly raise the remaining one million dollars to pursue these exciting projects. UnQuote.

You can find a link to the Caring for Carcinoid Foundation contributions page on our website at walkingwithjane.org/contribute. We hope to have a series of stories on immunotherapy and cancer in the next few weeks on our website.

Lanreotide study presented at symposium

Meanwhile, efforts continue to find therapies to slow down NET cancer tumors and improve the quality of life for the approximately 112,000 known patients with NET cancer. This week’s Gastrointestinal Cancer Symposium in San Francisco will include a presentation and two posters on the CLARINET phase three trial of lanreotide. That drug was approved for NET cancer patients in December of 2014 by the FDA based on that trial.

The drug, which is marketed by Ipsen Pharmaceuticals under the trade name , showed a minimum 22 month progression free survival, though the data had not fully matured at the time the study was reported to the FDA. Like Sandostatin, the drug is injected in a clinical setting.

NETwalkers Alliance new team name

Finally, Walking with Jane will walk in this year’s Boston Marathon Jimmy Fund Walk again t with our partners from Caring for Carcinoid, the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute and Kulke’s Krewe. But the team will have a new name this year: the NETwalkers Alliance. Our team name last year was so long the Jimmy Fund Walk organizers had to reduce the size of the print and extend the name over two lines in publicity materials.

Fundraisers for the team have already begun and will include the Hank Landers Memorial Golf Tournament, letter writing campaigns and other events that are still on the drawing board. The team hopes to raise at least $100,000 this year for NET cancer research at the Dana-Farber Cancer Institute.

Be well

That’s it for this week. If you would like a transcript of this broadcast, you can find one at walkingwithjane.org/news. That transcript will also provide links to more detailed information about any of these stories.

This is Harry Proudfoot. Until next time, be well.

My hope is that this weekly podcast will keep people up-to-dateon the latest NET cancer news. If you have something we need to cover, let us know at walkingwithjane@gmail.com.
My hope is that this weekly podcast will keep people up-to-dateon the latest NET cancer news. If you have something we need to cover, let us know at walkingwithjane@gmail.com.

 

 

 

WWJ goals 2015–Part 3: More money

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Raising money

The hardest part of this job is asking people for money. I am not very good at it and am embarrassed by the need to do it every time. The second hardest thing I do is ask others to help with raising money. I know most people hate doing it. It makes me feel like a panhandler every time I ask people for money–and like Fagan every time I ask others to do so.

…we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel.

As I said in my last post, though, killing carcinoid/NETs requires we find large amounts of money–and that we find it every year. Further, what we have raised so far comes nowhere near the amount we really need to make a cure a reality in the relatively near term. There are people dying of this disease every day out there. I really want that to stop.

Boosting our Jimmy Fund Walk performance

Last year, our Jimmy Fund Walk team fielded a team of 48 walkers who raised a combined total of nearly $70,000. As good as that was, we need to do better. As I write this, the goal listed on our site for 2015 is $80,000. It is a safe number, I think. I set it in November before I had a series of meeting with members of the Walk staff and people at the Program for Neuroendocrine and Carcinoid Tumors. Now, what I really hope we can do this year, is break $100,000.

…killing carcinoid/NETs requires we find large amounts of money…

Over the next few months I will meet with members of two of the higher performing teams in the Walk and in the Pan-Mass Challenge. I intend to pick their brains about how they have done what they have done and try to apply those lessons to our own team.

Helping team members reach their goals

My hope is we will also do a better job of supporting the fundraising efforts of our team members. I have more than a little experience, at this point, in marketing events. It’s time I shared that knowledge more broadly in support of events run by other team members. If I’ve learned one thing over the past four years, it is that I cannot do everything all the time.

…what I really hope we can do this year, is break $100,000.

Jenaleigh Landers, one of our team captains,  got help from some of her late father’s friends last year who wanted to put on a golf tournament in his memory. The Hank Landers Memorial Golf Tournament in northeastern Massachusetts raised about $6000 last year. And it has significant growth potential, given what Jena and her friends learned from last year’s efforts. Their success has inspired me to consider trying two new events–a golf tournament and a mini golf tournament–in the Greater Fall River-New Bedford area this summer.

Backing creative ideas

But we also need to help people use their own creativity. One of our team members last year raised a considerable amount of money through the sale of small zebra themed sculptures made from polymer clay. She also made stitch markers for knitting projects and a range of other items. In total, between those efforts and others, she raised nearly $7000 for the cause.

Their success has inspired me…

My letter-writing efforts have generated as much as $6000 a year. Each year, I offer that letter to others on the team to use with people on their Christmas card lists. Very few people use it. But if only ten people did so, the results for their fundraising efforts–and for our team–could be significant.

What is your special talent?

Each year, I also seek sponsors for our team t-shirts. I tell team members the prices and provide a letter for businesses they may know. I routinely raise $1000 myself from that effort. But there is room on the shirt for another $1200-$1800 worth of sponsorships.

…we also need to help people use their own creativity.

Every person has a talent of some kind that could produce a significant sum of money for our Walk team efforts. We need to help people do that. Some of those things require more effort than others. I’ve heard people on other teams talk about yard sales, product parties, and softball tournaments. It is all a question of what people are willing to take on.

Starting with easy

My advantage is that I am retired and have more time than many others do to undertake larger and more complex projects. But my experience is that often the easiest projects raise more money than the more complex ones do.

…I also seek sponsors for our team t-shirts.

A dinner, for example, requires lots of people and lots of effort spread out over weeks. My letter-writing campaign, which goes out to 400+ recipients, takes a couple of afternoons once the letter is written–and a couple of hours if I have help stuffing the envelopes. The dinner might gross $2000 and net about half that. The letters generally gross $3000 and net about $2400 once the stamps and envelopes are paid for.

Recruiting more Walkers

The first task in reaching that $100,000 Boston Marathon Jimmy Fund Walk goal is simply to help those already committed to the team to raise more money. The second task is to recruit more walkers. My goal is to build the team to 80 this year. That is a more complicated task.

…often the easiest projects raise more money…

But we will have more support from both the Walk team and the Program in Neuroendocrine and Carcinoid Tumors than we did a year ago–not that we didn’t have their support before. For example, the Program has just launched a newsletter for NET cancer patients at the Dana-Farber Cancer Institute. Our NETwalkers Alliance team and its activities will get regular coverage in that publication. It will not do any active recruiting for the team–there are ethical issues involved in that–but just the knowledge that a team exists should bring more people to our door.

Building momentum

We will also try to encourage people on both the clinical and research staffs to become more involved with the team. We will try to set up tours of the DFCI facility and labs for team members and perspective team members through the efforts of the Jimmy Fund Walk team. And we will get local media involved wherever we have team members through interviews and press releases. In addition, we have launched a NETwalkers Alliance Facebook page where both team members and the general public will be able to learn about our efforts.

My goal is to build the team to 80 this year.

Finally, this week, we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel. That program will have regular updates on NETwalkers Alliance team activities to support everything we are doing, in addition to providing news about NET cancer research going on at DFCI and elsewhere, as well as what other groups are doing to raise money for NET cancer research.

(Editor’s Note: While the Boston Marathon Jimmy Fund Walk is one of our major initiatives in our efforts to raise money for research into NET cancer in the coming year, it is not the only effort we have made a commitment to, even at Dana-Farber. In the next part of this series on goals and planning for 2015, we’ll look at the other NET cancer specific money efforts on our agenda.) 

We have walk team members starting from every point on the Boston Marathon Jimmy Fund Walk route. Our Walkers include caregivers, patients and researchers. We all want to find the money that will help fund a cure for NET cancer in all its forms.
We have team members starting from every point on the Boston Marathon Jimmy Fund Walk route. Our Walkers include caregivers, patients, friends and researchers. We all want to find the money that will help fund a cure for NET cancer in all its forms.

WWJ goals for 2015 Part 2: Money

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

Why money matters

Walking with Jane does not do medical or scientific research. We try to help create the funds that make research possible. Research requires four things, three of which cost oodles of money. The fourth doesn’t cost money directly, but money spent wisely on the other three can help create the fourth.

She wanted me to have an enjoyable retirement.

Every piece of research starts with a question or an idea. We have hundreds, perhaps thousands, of good questions and ideas about cancer, how it works, and how to cure it. Unfortunately, we only have enough material resources to fund less than five percent of those good ideas. The government won’t fund an idea unless the bureaucrats are fairly certain the idea will work or that the question will lead directly to a cure. Pharmaceutical companies will only fund trials when they are fairly certain the drug will work and that they will be able to turn a profit on it when it does.

The price of counting beans

Once-upon-a-time–when I was very young–American companies took a long view of success. Bell Labs sponsored huge amounts of research purely out of curiosity. Other companies did the same. They believed you could never be sure what new set of questions or ideas might lead to the next telephone or incandescent light. The graphical user interface (GUI) that we all use every day on our computers originated in the Xerox research lab. Then the bean-counters arrived and insisted companies worry more about next quarter’s profits than longterm success.

Every piece of research starts with a question or an idea.

Once-upon-a-time–when I was very young–the federal government was willing to fund basic research–research into things we didn’t have a clue where they would lead or if they would prove useful. We created nuclear power and sent people to the moon. Then the bean-counters took over.

Why what we raise matters

Today, real fundamental research funding comes from private charitable donors more than from anywhere else. I know I lack the knowledge necessary to decide what research money should be spent on. Places like the Dana-Farber Cancer Institute, the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation, among others, have people with good ideas that need to be funded. They have committees with expertise I certainly don’t pretend to have that review proposals and figure out what ideas make sense to look at and which ones don’t.

Then the bean-counters arrived…

Our job is to create the resources that will allow those groups to fund as many researchers and research ideas as possible. We help provide the people, the space and the equipment and supplies that are necessary to answer those fundamental questions that will lead to a cure for NET cancer.

A personal investment

Over the last four years, I’ve donated a substantial amount of my income to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute through the Walking with Jane Dybowski Fund.  In addition, I’ve personally contributed another significant amount to that fund through my own donations to my Marathon Walk.

Our job is to create the resources…

I’ve also donated another chunk of my income to the Caring for Carcinoid Foundation and to the Carcinoid Cancer Foundation. We won’t discuss the comparatively small amounts I spend on things like the rent for this website nor the hours I spend writing for it and trying to keep up with the research and maintenance.

Paying the price

I am not a wealthy man. I am a retired school teacher. I live frugally: I make most of my meals from scratch at home; I bake my own bread; clean my own house; do my own laundry; keep the thermostat set at no higher than 68 degrees; grow my own vegetables eight months out of the year; clip coupons and watch for sales.

I’ve donated a substantial amount of my income…

I don’t say theses things to brag or to earn your sympathy. I say them to demonstrate how seriously I take the battle against carcinoid/NETs. Eventually, I know I am going to miss the money I have invested in this. I know the good health I enjoy today will likely be gone by the time we find a cure and I can relax and enjoy my retirement. But none of that matters to me. NET cancer took my beloved from me. I will do all I can to keep it from stealing the lives–and futures–of anyone else.

The cost of a cure

But I also know that what I have personally done the last four years financially is a drop in the ocean compared with what we need to truly come up with a way to kill carcinoid/NETs–to remove it permanently from Death’s quiver. It would be so easy to simply write the checks once a year and move on if I did not know how expensive finding the answers to this cancer are likely to prove to be. Jane’s final days haunt both my dreams and my waking hours. But the face isn’t always Jane’s that I see. Rather, it can be the face of any of the NET cancer patients I have met these last four years.

I am a retired school teacher.

Teams I’ve captained the last four years have raised $110,000+ for NET cancer research and another $20,000 for general cancer research and patient support for the American Cancer Society. That’s about what I made my last two years of teaching–total. So one part of me thinks that’s a huge pile of money. But the conservative estimate for what a NET cancer cure will cost to find is $100,000,000. In those terms, we’ve done nothing.

The cost of doing nothing

About 15,000 people will learn this year that they have NET cancer. For many, it will be the end of a years’ long search to find out what ails them. Between 3000 and 5000 will learn they have it because of the advances in diagnostics made over the last four years. All will potentially have the opportunity to use drugs and other treatments we did not have four years ago. But none of those treatments will offer them a cure.

…one part of me thinks that’s a huge pile of money.

About 12,000 people will die of NET cancer they know they have this year. Their deaths will look very much like Jane’s death. Their spouses will suffer the same things I have suffered. Over time, the number of people dying who know they have NET cancer will increase as we get better at recognizing what the disease is. If we do nothing, only that will change. Without a cure, 33 deaths a day will become 40 deaths a day in a very few years.

Why this matters to me

I started this piece planning to talk about our plans to raise money for research and awareness in 2015. But then I realized I needed to provide some background about why raising money matters–and where the money we raise goes–before I started telling people about what we hope to do and how people can help us do it.

About 12,000 people will die of NET cancer they know they have this year.

Jane told me before she went into the hospital what she wanted me to do if she died. She told me not to mourn–or if I did, not to do so for long. She wanted me to move on with my life. She wanted me to forget about her cancer. She wanted me to have an enjoyable retirement. I’ve disobeyed her on every count except putting up the Christmas tree every year. It turns out I can’t move on until the kind of cancer she had is no longer a threat to anyone. Together, we can all make that happen.

(This is the second part of a series on Walking with Jane’s goals and plans for 2015. In the next part, we’ll discuss how much money we will try to raise and how we will raise it.)

We walk to fund the research that will let us reliably detect and reliably cure NET cancer in all its forms. You can join our NETwalkers Alliance team or make a donation here.
We walk to fund the research that will let us reliably detect and reliably cure NET cancer in all its forms. You can join our NETwalkers Alliance team or make a donation here.