100 Years+ and So What?

Hi Everyone!

Congratulations—this month will be a terrific month for carcinoid and related neureondocrine tumor patients! The NIH/NCI will be hosting the first-ever Carcinoid Summit as a result of language in a House Report that accompanied a House Bill sponsored by Congressman Ralph Regula. Despite many phone calls, the folks at Congressman Regula’s office will not indicate whose efforts resulted in the Carcinoid Summit. But, thanks to the efforts of all of you, the biology of carcinoid and related neuroendocrine tumors will receive more attention.

This year I have been saddened by the many deaths of carcinoid and related neuroendocrine tumor patients. A celebration occurred earlier this year that honored Obendorfer’s coining the term “carcinoid” in the early 1900s. Personally, as a patient, I find that marking this anniversary is rather sad. Over 100 years later, many exciting therapies and genetic understanding exist for many other cancers, but not our own.

Despite all the time that has passed since Obendorfer’s discovery, for us carcinoid and NET patients, no curative therapies exist. Even worse, no deep scientific understanding of these cancers, their pathways or their underlying genetic causes exists. Even worse than this situation is that the carcinoid/related NET field still lacks the critical scientific tools to attract scientists from other fields of cancer research to test drugs and novel hypotheses in this area. Among critical scientific tools, I refer to reliable cell lines and mouse models that are shared among all scientists. I wonder—what has been going on for so many years?

I admit that surgery is always a possibility and if these cancers are caught early enough, they may be successfully surgically resected. However, after metastases occur, surgery becomes riskier and the real possibility exists of the cancer returning.

Despite these challenges or opportunities, I always see the glass as half-full. I am grateful to the Scientific Advisors of the Caring for Carcinoid Foundation, the many scientists that will convene at the NIH/NCI Carcinoid Summit, and the many scientists funded by the Caring for Carcinoid Foundation who are working hard for all of us. The needless deaths of so many this year should spur us all to greater collaboration and action.

In this vein and in keeping with my love of a quote (greater eloquence than my own is often needed!), here is an excerpt from the poet, Rainer Maria Rilke:
What is required of us is that we love the difficult and learn to deal with it. In the difficult are the friendly forces, the hands that work on us. Right in the difficult we must have our joys, our happiness, our dreams: there against the depth of this background, they stand out, there for the first time we see how beautiful they are.

P.S.—to respond to comments received:
Thank you for all inquiries concerning my health—I cannot complain.

Also, the Caring for Carcinoid Foundation has been incredibly busy this summer with:
• a Pan Mass Challenge bike event that raised approximately $250,000,
• a walk that will raise approximately $40,000 and
• a Chicago Marathon team that will raise approximately $40,000.
As you all know, 100% of all of donations to the Caring for Carcinoid Foundation go to scientific research, so this amount of money raised is thrilling!! With this fundraising, the Caring for Carcinoid Foundation will be able to spur scientists to discovery and overcome scientific barriers.
The Caring for Carcinoid Foundation has had many scientific advances by our funded scientists this year. Soon, CFCF will issue an E-Update full of great information and positive contributions to the community by our members. Stay tuned!