Looking back
NET Cancer Awareness Month ends today in Massachusetts and Texas. It is 20 days since Worldwide NET Cancer Awareness Day. I’m not sure how many new people we’ve reached with those events–at least a few, I’m sure. But neither NET Cancer Day nor NET Cancer Month reached a fraction of what Breast Cancer Awareness did in October. Of course, we didn’t really expect to do that.
I can’t end death.
This year, thanks to improved diagnostic techniques and greater awareness, we will diagnose about 15,000 new carcinoid/NETs patients in the US. We will likely lose about 12,000 diagnosed patients again this year. That will leave us, as usual, with somewhere between 100,000 and 120,000 diagnosed patients wrestling with the disease on a day-to-day basis as the year draws to a close.
Where we are
We will end the year every bit as uncertain of how many people are actually living with undiagnosed NET cancer as we were at the beginning of it. All we really know is that there are more cases out there than we know about. We know that many cases of idiopathic right-side heart disease are likely caused by carcinoid/NETs, but how many cases that is remains a murky subject. Equally murky is the number of IBS patients who actually have NETs.
…we didn’t really expect to do that.
Nor do we know how many cases of NET cancer are missed because our diagnostic tools can’t reliably detect the disease. Nor do we know how many cases are missed because many primary care doctors don’t know to look for it–or how to.
Before and after NET Cancer Month
But things are getting better. In 2010, when Jane was diagnosed, there were two trials underway in the US. Jane qualified for neither. They were aimed at pancreaticNETs. Jane’s primary tumor wasn’t there. We had octreotide and its long acting form that might ease her symptoms and slow the growth of her cancer. In retrospect, they were like trying to put out a five alarm fire with a fire extinguisher.
…there are more cases out there than we know about.
Today, we have more than a dozen trials underway in the US–and new ones coming online after the new year. At least one of those new trials will try immunotherapy–an idea I will write about at length in December. Early results from other cancers have provided some spectacular results, especially in pediatric cancers, melanoma, and prostate cancer. Whether those results will be duplicated in carcinoid/NETs patients remains to be seen, but there does seem cause for hope.
Better Diagnostics
Ongoing efforts testing Gallium-68 scans as a diagnostic tool for carcinoid/NETs also seem promising. Neither that nor the weaker but now accepted octreoscan existed when Jane was searching for answers to her ongoing diarrhea and gas. PRRT treatment trials are continuing, with more and more cancer centers able to provide access to that therapy that is widely used in Europe.
But things are getting better.
Research funding remains a critical issue. Neither government nor drug companies are much interested in financing the basic research that treatments spring from. I am not, by any stretch of the imagination, a wealthy man. Jane and I were school teachers–and even by the standards of school teachers, we were not particularly well-paid. But I know how important basic research is to any endeavor.
The personal commitment
Four years ago, I pledged I would personally donate $100,000 to the research effort at the Dana-Farber-Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors over a five-year period. So far, I have fulfilled $85,000 of that pledge. In addition, I have personally raised another $46,000+ through the Boston Marathon Jimmy Fund Walk over the last four years. This year, our Caring for Carcinoid Walking with Jane, Hank, and Anne team raised over $67,000–bringing our team total for the Marathon Walk in the three years I have served as captain to over $100,000.
Research funding remains a critical issue.
I have to admit to being greedy–greedy for a cure for NET cancer. Five days ago, I set up the team page for our new Jimmy Fund Walk team: NETwalkers Alliance. Our current, published, goal is to raise $80,000 this year. But I, personally, want us to raise nearly as much money next year as a team as our team has raised in the previous three years combined: $100,000. To do that, I’ve managed to convince the Jimmy Fund to let us use their logo on our team Facebook page and set up some meetings with the leaders of one of the more successful PanMass Challenge teams to learn from them how they do what they do.
Piloting the future
The researchers at Dana-Farber need the money. But so do researchers at NET cancer research programs around the country. I hope that what we do with the NETwalkers Alliance can become a pilot for other programs and small foundations working on carcinoid/NETs across the country.
I have to admit to being greedy…
We need to create reliable fundraising vehicles across the country everywhere people are doing reputable research on NET cancer. We need to be as open source about our fundraising techniques as many cancer researchers are becoming about making their research available to other researchers.
Stealing an arrow
Jane gave the last months of her life to helping researchers learn as much as they could from her disease-riddled body. It was a conscious decision. Since her death, I have put my financial, physical, mental and emotional resources into that fight. I will continue to do so until we have both reliable ways to diagnose the disease and a way to cure it. I know what it is like to sit by a loved ones bed as they die, knowing there is nothing you can do but hold her hand. It is the most awful feeling in the world.
The researchers at Dana-Farber need the money.
I can’t end death. But if I can help take an arrow or two from his quiver–especially an arrow that causes such a wasting and painful death–I will do whatever it takes to do so. I hope you will join me in that quest.
