It’s building toward a beautiful day outside–great weather to be training for the Boston Marathon Jimmy Fund Walk. I started my serious training last week. At my age, it’s start early or pay for it later–as I discovered last year. So far, we have five Walkers signed up–four from last year and one new.
If you haven’t signed up yet, today would be a good day to do so. Walk organizers have announced a new incentive I’ll get to in a moment. Our goal this year is 60 Walkers–and we have a long way to go before we get there. If you use the code word TEAM you can get $5 off your registration fee.
Building on last year’s foundation
We moved comfortably into the top 25 teams with last year’s effort. We were in the top 10 Honor Teams for the year as well. Jillian Emmons was ninth among first time walkers, and we had eight Pacesetters among our 48 walkers.
The Walk Chair, Zack Blackburn, and Quincey Spagnoletti have gone out of their way to be helpful as we work toward moving to six figures this year. I’ve spent some time talking with the captain of Team Neuro, which routinely raises over $125,000 a year, picking her brain about how they consistently do what they do.
Where we are
Her emphasis was on recruiting lots of people for the team. And so far, we are slightly ahead of where we were at this point last year. But we are behind on money raised to this point. That’s largely my fault–I’m $6000 behind where I was this time last year because my winter fundraising letter didn’t get out until last week.
I’ll make up that ground in the next few weeks, but if we are going to make that six-figure team goal this year, we’re going to need to build up our Pacesetter roster as well as our membership roster. So here’s that incentive I talked about earlier: be one of the first 100 participants to reach Star Pacesetter (raise $1,500 or more) to earn two tickets to the July 26 Boston Red Sox vs. Detroit Tigers game. Make sure you check out the How to Raise $1,500 worksheet.
The road ahead
Here’s a to-do list for the next few weeks:
1. If you have not signed up yet for this year’s Walk, do it today. Remember the code word TEAM will get you $5 off your registration. If you were a Pacesetter last year, you need pay no registration fee this year.
2. Make sure you have changed the date of the Walk on both your page and your personal calendar. The Walk is officially set for September 27. The original materials said September 20.
4. Start your own fundraising projects. Remember, I will come talk to any group or fundraiser you put together. Just let me know where to be and when. You can also use the letter in my welcome letter or use it as a template for your own. My letters routinely raise $3-5,000 for my Walk.
Team Building
5. Recruit other Walkers. The more Walkers we have the larger the amount our team will raise.6. Visit our NETwalkers Alliance Facebook Page to read what others are doing and post what you have planned.7. Let me know if you want to be a co-captain for a particular region or distance. Because of our past record and the size of last year’s team, they are letting us have some extra captains to help us stay organized.
Staying in touch
That’s all for this month. My plan is to put out an update once a month for everyone on the team.
As always, if you have questions or need anything else from me, feel free to email me (walkingwithjane@gmail.com or hproudfoot@verizon.net)
Liz and Beth walked–and ran–the full 26.2 miles last year after my knee cut me down to the 13.1 mile course. You can walk any of the four routes–but we need you to join us.
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.
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…
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.
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.
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.
I learned something important over the last two weeks. While I am not constantly aware of the pain Jane’s death has caused me, I am in no way fully recovered from that event despite nearly 50 months having gone by. I can pretend, sometimes for weeks at a time, that I am back to a state of normalcy. But that is an illusion–or worse, a lie I convince myself of.
It’s the only thing that keeps me sane.
Two weeks ago, I had the latest in an ongoing round of oral surgeries. I followed the surgeon’s post-operative directions flawlessly. I iced the site of the latest wound the way one is supposed to, avoided the nuts and crispy foods, outlawed juice, tomato sauce and all the other acidic foods I like, gave up the heavy lifting of my constant training. I spent four days largely confined to the house we built, reading novels to take myself out of the world.
Staving off Hell
It wasn’t enough. No matter how effectively the books populated my mind with other people, when I came out to eat or sleep, I was still alone–am still alone. I posted to my online grief group, trying to stay positive. But words on a screen are useless when what I really need is Jane’s physical presence–her voice–even the sound of her breathing.
I spent four days largely confined to the house…
Then it began to snow. Neither of us liked to shovel snow, but we made a game of it. Jane would start at the garage end; I would go down to the street where the plow had left a drift. We would set to work. Sometimes we pretended we were working on the tunnel between England and France. Other times, it was the transcontinental railway. When we came together somewhere in the middle, we would hug and kiss as though we had been separated for days in celebration of the breakthrough. When we were done, we would come upstairs for hot cocoa, then sit on the couch–her feet buried under my legs to warm them up.
The Ice Hell
Now, I wheel out the snow blower I bought after Jane’s death. There is no romance or fantasy involved in the task. To be truthful, I try to avoid thinking of anything beyond guiding the machine down the driveway. I fail at doing so, miserably. There are too many memories and they flood into me like the Red Sea on the Egyptians.
Then it began to snow.
The days have been cold–far colder than normal–the last two weeks. That, too, isolates me. A group of us has a monthly lunch date. But many of the retired teachers in that group are elderly. They don’t do well with the cold. This month’s gathering was cancelled as a result. I didn’t realize how much I was looking forward to the event until I got the call it was not going to happen.
Presentation Hell
And then there was Friday. A group of student councils from area high schools was having a conference. I’d been asked to set up a table and do a series of short presentations for Walking with Jane in hopes of getting some of the schools interested in doing fundraisers for the Marathon Walk. I told Jane’s story seven times over the course of about three-and-a-half hours.
…they flood into me like the Red Sea on the Egyptians.
I taught high school for 34 years. Every class was a high wire act. As Jane said one time, even if you were teaching the same thing five times over the course of the day, the last group deserved as much energy and focus as the first one got. You had to do every show as though it were the first time you’d said it. Great stage actors, great stand-up comics have to have that same attitude.
Hell on stage
So that’s what I did Friday night with the most wrenching material any teacher, actor or comic ever presented. There’s no way to insulate oneself from that much raw emotion–that much reliving of the horror of watching the person you love most die before your eyes. It comes at a steep cost–but I pay it. NET cancer doesn’t die if people don’t tell their stories–and I want it to die more than I want to live most days.
And then there was Friday.
I understand why people don’t do what I do. I understand why people bury the dead not just physically, but also mentally and emotionally as well. I know why many men remarry within a couple of years of losing their spouse–and why many women, given the chance, do so as well. We want to find some way to mask the pain–to bury it any way that we can. Grief is Hell.
Edwards’ Hell
I used to teach Jonathan Edwards’ “Sinners in the Hands of an Angry God.” I tried to explain his vision of Hell this way: Have you ever scalded yourself with really hot–literally boiling–water? That pain you feel, right at the outset, before your brain intervenes or the nerves die–that is the beginning of Hell. Now, imagine that initial pain never lessens, never eases in any way–but goes on and on forever at that same intensity–and you never, in any way, get used to that scalding initial pain. That is the Hell of Jonathan Edwards.
Grief is Hell.
Sometimes, I think that is what real grief is like. It never truly ends. But, unlike Edwards’ Hell, it ebbs and flows. And somehow, that makes it worse. We get the illusion that we are getting better. We begin to hope that, finally, we are going to stop hurting–that our lives are going to be more than coping with the pain and that we will be able to truly live again.
Hell in the grocery store
And then we are walking through a store and see a can of a particular soup on the shelf–maybe so briefly we do not even know we have seen it–and the pain comes roaring back in, overthrowing every coping strategy and barrier we think we have in place.
And somehow, that makes it worse.
My problem is that because of what I am trying to do–put an end to this foul cancer–I purposely set off those triggers constantly. Every article I read, every piece I write, every talk I give puts me in contact with the raw emotions I felt the day Jane was diagnosed–and every day thereafter until we buried her.
Marley’s Hell
That makes me a stupid fool who insists on putting his hand in the flames every day because maybe the evidence of the last 100 times is wrong–maybe today it won’t hurt. And maybe today I will tell that story to the right person who will have the right skill set to eventually kill NET cancer. But probably not.
…and the pain comes roaring back in…
We can’t stop NET cancer from killing those 34 people who will die of it today. We can’t stop NET cancer from killing the 34 people it will kill tomorrow or the next day or the day after. Nothing we can do will bring Jane back to me–or bring anyone else’s loved ones back to them. Those are all truths, and we have to live with them.
Ending Hell
But our actions today can make a difference for others on down the line. There are thousands–maybe millions–of people out there who have NET cancer and don’t know they have it. They have husbands, wives, fathers, mothers, children, loved ones who will feel this pain someday if we do nothing.
…maybe today it won’t hurt.
So I made a choice. If increasing my pain means that somewhere someone in the future doesn’t have to feel what I feel now, then that is a trade I am willing to make–even if it means I lose a week periodically to recover. It’s the only thing that keeps me sane.
I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.
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.
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.
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 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.
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.
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.
Dante finds himself contemplating life and loss at the beginning of the Divine Comedy. A bit more than two weeks ago, I found myself in a similar space. I had started my own epic, a book on grief that will eventually, if I can bring myself to finish it, help to fund both a cure for the carcinoid/NETs that took my wife from me and an online grief group that has helped me try to survive that loss. I have the first five chapters drafted–but each has exacted a steep emotional price as I journey again through the last months of Jane’s life and the early days following it.
…have a wonderful holiday…
Those emotions have been further exacerbated and complicated by the events of this past year. In August, I lost my father to a massive stroke. He was dead before my plane reached Seattle. Like me, he was a widower. My mother died of Alzheimer’s barely 10 months before Jane’s fight with NET cancer led to her death. My father and I spent that first Christmas–and all the Christmases since–together. We talked about my mother and Jane and about what we both were feeling. It was a peculiar thing to hear my father talk about how he felt. He was not one easily given to sharing his feelings.
A year of death and disease
This Christmas, I will not travel out west for the holidays. My father-in-law was diagnosed just six weeks ago with prostate cancer that has already metastasized to his bones. He will return home on Christmas Eve from a month in rehab and treatment. I cannot leave him and his surviving daughter to face this Christmas–perhaps his last–alone. My brothers and sisters will have each other this Christmas. My in-laws need me here more than I need to be in the west.
He was dead before my plane reached Seattle.
But I will miss those hours with my father. There would be much for us to mull over. Just days before his death, one of my nieces died from a disease she had fought since her teens. I can find no reason in it. Early in the year, I lost one of my oldest friends to breast cancer. Another lost her mother to Parkinson’s. Three friends lost their father to colon cancer. Another friend’s wife was diagnosed with breast cancer and is in treatment. My cousin spent much of the first half of the year fighting uterine cancer. In fact, not a month has gone by this year without either a cancer diagnosis or a death.
Intimations of mortality
Thirteen days ago was the fourth anniversary of Jane’s death. The lead-in to that date was more difficult than I expected. There were days it felt as though she had just died. Part of that was working on the book. But a major part of it was how empty everything seems without her. I can go to a play, listen to music, watch a film, bake bread–do nearly anything–but there is no Jane to share in the small victories or pleasures of life. It is all dust and ashes in my soul. I am tired.
I will miss those hours with my father.
I am reminded of mortality at every turn. Even my own body reminds me of that, though not so horribly. I have had gum surgery on every quadrant of my mouth this year and face more surgery there in the year ahead. Just weeks before the Boston Marathon Jimmy Fund Walk my right knee, which has often given me twinges, gave me pain serious enough that I cut my distance to 13.1 miles instead of the usual 26.2. I’ve only begun walking on it seriously within the last two weeks and, while it still gives me a twinge once in a while, it is healing nicely. Unfortunately, the months of enforced inactivity have put 12 pounds on that I had hoped I’d said good-bye to permanently.
While much is taken, much remains
But I would not have anyone believe that everything has gone darkly this year. Walking with Jane has begun to gather the momentum necessary for flight at long last. Since April, this website has been viewed over 1000 times a month every month except one–and it came close. And every one of those months has been the best of its kind ever in terms of traffic. In November, we had our first 3000 view month.
I am reminded of mortality at every turn.
In April, our Marathon Walk team combined with Kulke’s Krew to form one large team. When the dust settled in September, Caring for Carcinoid/Walking with Jane, Hank and Anne had 48 walkers, eight of whom achieved Pacesetter status. Total, we raised nearly $70,000 for NET cancer research at the Dana-Farber Cancer Institute. That total put us in the top 20 teams–and eclipsed the total of our separate teams the year before by about $10,000. I personally raised nearly $17,000–a personal best for me, as well, that should put me in the top 20 for individuals.
Raising the bar
Our goals for that event for next year are even bigger–and walk organizers at the Jimmy Fund are doing all they can to help us. They have granted us permission to use the Jimmy Fund Walk logos on a stand-alone Facebook Page–the first of its kind to be allowed to do so–for our renamed NETwalkers Alliance team, and are arranging for us to meet with some of the more successful longterm teams to learn from them what they have done to build and maintain success. We will be the official team of the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Both Drs. Matt Kulke and Jennifer Chan, as well as members of the research and support teams for the program walked with us this year.
That total put us in the top 20 teams…
I was reappointed to the Visiting Committee for Gastrointestinal Cancers at DFCI this year. We heard from former NBC News anchor Tom Brokaw at this year’s dinner. Brokaw was treated for multiple myeloma last year and, while he looks frail still from the treatment, still has that signature voice, as well as the ability to see the larger patterns in world events. He spoke eloquently for about 20 minutes without a script or even notes, weaving his cancer journey into world events and new and old scientific discoveries.
Promising discoveries
We also got a look at the meeting at some truly promising developments both on the general cancer and NET cancer fronts. Two items stood out in particular. The first is the discovery of some markers that may eventually make detecting pancreatic cancer earlier possible. The second was progress in the use of immunotherapy on cancer.
Our goals for that event for next year are even bigger…
The second is of particular importance to NET cancer patients as at least one Phase III trial of immunotherapy is scheduled to start in 2015 for carcinoid/NETs. That trial is funded by the Caring for Carcinoid Foundation, which has launched a million dollar matching program for that effort. If you want to make a contribution to that effort, you can do that here.
Moving the needle
Our Greater Fall River Relay for Life effort continued to grow this year, as well. Our team broke the $9000 barrier for the first time this year. While I have had to step away from the planning committee for the full event because of the increasing demands of our work on NET cancer, we remain committed to helping find cures for all forms of cancer–and for supporting cancer patients as they struggle with the disease.
The second is of particular importance to NET cancer patients…
Our fifth Walking with Jane Scholar was named at Westport High School in June. That scholarship gives a student interested in pursuing a career in either medicine or science education selected by the science department at WHS $1000 every year for four years while they work on their undergraduate degree. We also gave our second and third scholarships at Bridgewater State University, Jane’s alma mater. Those are one year $1000 grants for students selected by the university.
Original vision and current reality
This fall, we received final recognition from the IRS as a 501 (c)(3) charitable organization. That recognition is retroactive to our incorporation in May of 2012. I cannot tell you how pleased I am to have that piece out of the way.
Our fifth Walking with Jane Scholar was named…
But I had a very different vision of how all this was going to work in the spring of 2011. I thought then we would be raising a lot more money directly than we are. Instead, we are inspiring other people with far greater resources to step up and make donations to groups working on this fight other than us. Since Jane’s diagnosis there has been a steady increase in funding for NET cancer. Today, three times as much money is raised and spent on NET cancer as was in 2010. People tell me that we are, in part, responsible for that. I will take them at their word for that.
Moving forward
My vision has become increasingly decentralized and more regional. This fall, I wrote extensively on a marketing strategy for NET cancer so that we can raise not only more money for research but also to raise public awareness about the disease. I hope the model I proposed at the end can be used to increase both those things.
…we are inspiring other people with far greater resources…
Whether it will or not, remains to be seen. But the NET cancer community can rest assured that we will not stop trying to move things forward against this monster while life endures. I remain as determined as ever to be able to stand at my wife’s grave to tell her her disease is dead ands will not kill another human being again.
Final words
But I am also very aware that this is not a fight any of us can win on our own. We’ve had a lot of help the last four years from people all over the country–and I hope we have been equally helpful to them. Thank you to all of you who work in this vineyard. May the year ahead bring us the cure we all seek.
…to be able to stand at my wife’s grave…
And I am also very aware that I need to take periodic breaks if I am going to continue doing what I am doing. While I know I had promised a series on immunotherapy this month, it is increasingly clear that is unlikely to happen before January. I will likely write one more piece before New Year’s, but for the next few days I am going to try to get some rest and spend some time thinking about things other than cancer.
I hope all of you have a wonderful holiday, whichever of them you celebrate, and that your new year is filled with new hope, improved health and reduced christmas stress.
Patients, caregivers, researchers, widows and widowers and children all walked with our team this year. Merry Christmas to all of you who worked this year to end this scourge.
We were watching a “Frazier” rerun in Jane’s hospital room four years ago today. Jane had not slept much the night before but we had moved her out of bed earlier. Now she was having trouble keeping her eyes open. The nurse asked her if she wanted to get back in bed and take a nap—and she did.
…you’ll be making a difference in the lives of carcinoid/NETs patients…
Moving Jane from the chair to the bed meant getting her back into a sling that hung from a crane. I remember having to support her head as we moved her that morning—something I had not had to do before. Alarm bells should have gone off in my head at this new weakness, but we had been in the hospital for more than a month. I had helped change her bedclothes after multiple episodes of diarrhea, walked her through two comas, major heart surgery, and, just the week before, the installation of a pacemaker.
Everything looked promising
Neither of us had gotten much sleep the night before, but I was more optimistic every day that we were headed in the right direction in this long battle against her NET cancer. She had begun physical therapy again two days before and today was the third day in a row she’d been able to spend time out of her bed.
I had helped change her bedclothes after multiple episodes of diarrhea…
I held her hand as she fell asleep—and continued to do so as I read once she was napping.
Jane’s last carcinoid attack
Maybe 45 minutes later the nurse came in to take Jane’s blood pressure. While Jane was on a monitor, sometimes it would stop working because of her position and how thin her arms were. The nurse said she was checking it manually because of that ongoing problem.
…I was more optimistic every day…
But the monitor wasn’t the problem. Jane’s blood pressure was crashing as a new carcinoid attack went coursing through her body. This time there was nothing left we could do to stop it. Thirty-eight hours later, she would be dead.
What we learned from Jane’s case
In four months, from Jane’s single case, her doctors told me, we had essentially doubled our knowledge of carcinoid syndrome and NET cancer. It isn’t that we learned that much, it is that we knew so little. But Jane was a scientist—and she knew how important even the small amounts doctors and researchers could learn from her body as it dealt with the disease could be.
Thirty-eight hours later, she would be dead.
The world of NET cancer has changed a lot in the four years since Jane’s death. We’ve found some new techniques that can slow down its advance and discovered new methods that can help us detect it more reliably. And we know a lot more about the genetics that drive the disease. But we still have nothing that looks like a cure.
I’ll walk again on September 20, 2015 and serve as captain of the NETwalkers Alliance team—a new name for the Caring for Carcinoid/Walking with Jane, Hank and Anne team I’ve worked with the last four years. Every penny we raise will go to researching carcinoid/NETs and finding a cure for the disease that killed my wife.
You can help
You can help in one of two ways. First, you can join our Walk team. You can walk the full 26.2 miles of the historic Boston Marathon course from Hopkinson to Boston, or you can walk 13.1 miles along the same course, starting in Wellesley, or you can walk five miles from Cleveland Circle, or three miles from the Jimmy Fund Clinic. In each of those cases, you’ll need to raise $300. Or you can be a Virtual Walker, cover no distance, and raise whatever you can.
Either way, you’ll be making a difference in the lives of carcinoid/NETs patients–and hastening the day I can stand at my wife’s grave and tell her that her cancer will never kill another living soul.
Pax et lux,
Harry Proudfoot
NETwalkers Alliance
(Formerly Caring for Carcinoid/Walking with Jane, Hank, and Anne)
Join us as we walk to kill carcinoid/NETs on September 20, 2015 in the Boston Marathon Jimmy Fund Walk.
