Hello Justin,

Welcome to the group and I hope you find encouragement and helpful information here. You are definitely a newbie with just being diagnosed in May. As you explore and read more, you will find that everybody's journey can or may be different from another's, but we all have something to share.

I'm in my ninth year of treatment, diagnosed in late 2008. I've had no surgeries to date, which bothered me in earlier years, but I've since learned that
for some people "wait=and-see" may be an accurate treatment course. I've been on sandostatin since January 2009, with a dosage change here
and there based on my numbers. A few years ago, my oncologist prescribed Afinitor (pill version of chemo) and I tried it for six months but my body
did not tolerate it well so he took me off of it. The sandostatin alone has been working very well for me in keeping the tumor growth at bay and helping
with the diarrhea and flushing.

You mentioned you suffer with chronic diarrhea. The FDA approved a drug, Xmerlo, this year that helps with controlling diarrhea when the SSA injections fails to do so. You may want to ask your doctor about this.

When I was diagnosed and told that carcinoid is a slow growing cancer, I began my research for information. At that time I learned that I would probably only have 4 - 5 years left. How wrong that information was. I now know people can and do live a lot longer -- the moderator for our Michigan carcinoid support group has been living with it for over 20 years and I met a woman at a seminar that was also past the 20 year mark.

May I recommend a book entitled "But You Look So Good......Stories by Carcinoid Cancer Survivors" by Maria J. Gonzalez. The book starts with good information from some of the leading carcinoid doctors in the country, however the rest of the book deals with actual stories of carcinoid survivors (some sad, but most are informative, encouraging and hopeful).

I, too, stay as positive as I can along this journey. My glass is always half full...sometimes three-quarters full. I agree, too, that attitude plays a significant part in dealing with this rare disease. I count my blessings, treasure my family and true friends and try to keep stress to a minimum.

Please stay informed and keep in touch.

Regards,
Mary

Jump to this post