Chemo for carcinoid

My mom has severely advanced carcinoid cancer -- she's on sandostatin and Zometa, and had two rounds of radiation, but it's virtually everywhere in her body, and will not stop.

They are installing a port for chemo now, and the doctor isn't even sure yet what kind he's going to give her. She's already so weak and thin, I am afraid they'll kill her sooner with the chemo. Does anyone have any experience/recommendations/ advice they can give me? How bad is the chemo? I live in another state and am going to her first week of chemo, but should I just quit my job and move in to take care of her -- how bad is it?

If you happen to read this and happen to have early-stage carcinoid, please find a qualified doctor and demand aggressive intervention. My mom had a simple lung carcinoid five years ago that was removed surgically, and they decided to "wait and see" about another spot rather than treat it right away. This ridiculous judgement cost her years of her life. Many doctors don't understand that carcinoid is not the "good" kind of cancer. There is no good kind. Be aggressive early on. It's worth it.

 

On 9/16/2009 GwennG wrote:

My mom has severely advanced carcinoid cancer -- she's on sandostatin and Zometa, and had two rounds of radiation, but it's virtually everywhere in her body, and will not stop.

They are installing a port for chemo now, and the doctor isn't even sure yet what kind he's going to give her. She's already so weak and thin, I am afraid they'll kill her sooner with the chemo. Does anyone have any experience/recommendations/ advice they can give me? How bad is the chemo? I live in another state and am going to her first week of chemo, but should I just quit my job and move in to take care of her -- how bad is it?

If you happen to read this and happen to have early-stage carcinoid, please find a qualified doctor and demand aggressive intervention. My mom had a simple lung carcinoid five years ago that was removed surgically, and they decided to "wait and see" about another spot rather than treat it right away. This ridiculous judgement cost her years of her life. Many doctors don't understand that carcinoid is not the "good" kind of cancer. There is no good kind. Be aggressive early on. It's worth it.

Wow! First of im sorry noone has responded to your post. I live in NY so I go to Sloan Ketting and see Dr. Lenord Saltz. I was always under the impression that this cancer is the wait and see. However Im having the same problem that is happening to your mother. My cancer is spreading like crazy.  The old wait and see but I dont know what else there is to do. Chemo is not supposed to work and can make you horribly sick.  I would suggest to try http://www.caringforcarcinoid.org/ This is a great site for info and diffrent doctors in your area that specialize in this. Where do you live? Im curious to hear how your mother does on chemo??

My dad also has aggressive carcinoid (most seem to have slow growing). He was diagnosed 14072009 with lung primary and mets to liver and bones. He was referred for chemo carboplatin and etoposide had two cycles but the tumours continued to grow so chemo was stopped. He then had 5 cycles of radiation to his lung tumour to try to improve his breathing.   He is well except short of breath. While having chemo dad was weak and dizzy but not too bad - its work a try as it does worth for some people. Dad at present is having scans to see if nuclear treatment is suitable he is not on any medication as has no symptoms.

Good luck with your mom   Jen N Ireland