Welcome!

Today I’m sitting at the wooden desk where I do most of my work for the Caring for Carcinoid Foundation. The air is crisp, cool and the leaves are beginning to change color. Although I’m a native San Diegan, fall in New England is unparalleled! The clematis that my next-door neighbor planted is in beautiful, white bloom.

Why am I writing?

I write today because of the wonderful e-mail messages and letters I receive from all of you.

Questions about my health—

Many people ask me about how I feel; what treatment I receive; what food I eat. In general, I feel terrific although my health has declined gradually since my diagnosis in July 2000. I need more and more sleep. I suffer from occasional abdominal pains, deep flushing and extreme bony pain as a result of the metastasis to my bones. Recently, I landed in the hospital due to diverticulitis. I’d be curious to know if many carcinoid and related neuroendocrine cancer patients have experienced diverticulitis.

I receive regular shots of Sandostatin LAR for my carcinoid syndrome and bisphosphonate treatment to stabilize my bones.

I try to eat organic foods and a balanced diet. I do not drink alcohol, but I eat whatever I want in moderation.

Upcoming plans—

During the last week of September, I will attend a terrific scientific conference at Banbury Center in Cold Spring Harbor, New York at which many eminent scientists are invited to discuss their scientific research and insights into carcinoid and related neuroendocrine cancer. Immediately after, I will return to Washington, D.C. to meet with our supporters at the FDA, NIH and in Congress to continue to educate and inform them of carcinoid and neuroendocrine cancers. In mid October, I will be in the San Francisco area to speak with the terrific scientists and oncologists there, including Dr. Seung Kim, one of four recipients of the $250,000 2006 Caring for Carcinoid Foundation Research Grants.

Parents?

I’m not a parent, but I receive many e-mails from parents diagnosed with carcinoid who also have young children. Are you a mother or father with carcinoid or neuroendocrine cancer and young children? Please e-mail me and let me know if you’d like to support others in the same situation. I’d like to bring all of you together to support each other with the unique challenges that you face.

As a six-year carcinoid patient, I’ve learned that the journey is challenging, but filled with tremendous joy, new friends and promise.

I hope to meet you soon! Thank you for your support. Please continue to let me know how the Caring for Carcinoid Foundation can serve you better. Our primary purpose is to improve your lives now and in the future.

Warmest regards,
Nancy