The quest for NET cancer resources
The work of raising money for NET cancer research has drowned nearly everything else for the last six weeks. The good news is we have raised just over $6000 in that time–a good start for a small foundation with limited reach and resources. But that work is just a tiny piece of the work that has to be done in the weeks and months ahead. Our goal this year is to raise $200,000.
…it is what I promised Jane.
How we will reach that goal is every bit as much a mystery to me now as how we would generate $75,000 a year ago at this point. Eventually, through matching opportunities and other magic we got to just over $100,000–though less than $3000 of it ever saw the inside of our Walking with Jane bank account. The majority of it came from people donating money at our urging to the American Cancer Society, the Dana-Farber Cancer Institute, and the Caring for Carcinoid Foundation.
Curing NET cancer
And that’s fine with me. My goal is less about money coming through our door than money going in the doors of people in a position to do the research and the education that will eventually beat NET cancer. I’m far more interested in a cure than I am in who gets credit for raising the money to fund that cure. I still, however, get excited when I go to the mail box and find envelopes with money in the–and am equally disappointed on the days there is nothing there.
…the first faint glimmerings of a possible cure…
But my focus on the financial side of the research in recent weeks–and months–has put limits on the amount of time I have had to keep up with the research. And the research is much further along than when Jane was diagnosed in August 2010–much further along than when she died December 10, 2010 and I took on this task of working to find a way for others to beat NET cancer in her memory.
NET cancer diagnosis
I got a significant reminder of that progress in reading a paper by Dr. Lawrence Anthony from the University of Kentucky earlier today. His primary purpose is to talk to doctors about the latest treatments for NET cancer but the contents were just as useful in bucking me up about the longterm prospects for NET cancer patients.
For pancreatic NETs we have two new, fully approved drugs…
We have a better ability to diagnose NET cancers of all stripes than we did three years ago. The gallium-68 DOTA octreotide scan I wrote about 18 months ago clearly works better than what we used to have. And there is a 5-HIAA blood test in trials that may one day soon replace the cumbersome 24-hour 5-HIAA urine test. Of course doctors still need to know to order those tests–and we have a way to go where that is concerned–but we are better off than we were.
NET cancer treatments
For pancreatic NETs we have two new, fully approved drugs that, while they do nothing to cure the disease, still appear to slow its progress while alleviating the symptoms of the disease. We have three other drugs and drug combinations that are currently in trials that appear to do similar things for other forms of NET cancer. Peptide Receptor Radionuclide Therapy (PRRT), which has long been in use in Europe, is in trials in the US.
We have a better ability to diagnose NET cancers…
When Jane was in the hospital we were talking about next steps following her heart surgery to get the tumors in her liver under some semblance of control through liver embolization–a technique that really had not been used in NET cancer cases. Today, multiple methods of liver embolization are being used with significant success to alleviate symptoms and debulk liver tumors in patients for whom liver resection is not an option.
NET cancer’s cutting edge
We also seem to have developed a better understanding of cardiac carcinoid syndrome–the piece of NET cancer that destroys the valves in the right side of the heart, as well as developing a better idea of how to deal with carcinoid attacks that follow surgery.
…the research is much further along…
And out on the cutting edge, we have two viruses–one developed here and the other in Sweden–that seem to look at NET cancer cells as a tasty snack. They hold out the first faint glimmerings of a possible cure that may become available for the recently diagnosed before they reach the point Jane was at.
NET cancer’s price tag
The science is making progress. But that progress comes with a financial price tag too few in the private sector seem to want to pick up. So I will keep writing my tin cup letters, running fundraisers, and glad-handing rich and poor alike in the quest to generate the resources we need to kill NET cancer.
Our goal this year is to raise $200,000.
It is what I promised Jane’s doctors. More importantly, it is what I promised Jane.
