Carcinoid Syndrome Support Group

I am on Sandostatin. I have carcinoid mets in my liver and my oncologist says that for right now it's the best option for me. There are other treatments and there are clinical trials. The chemotherapies (according to my doctor) don't work as well because this is such a slow growing cancer and chemo attacks fast growing cells. There are chemo's for creating blood clots in the tumors to try to cut off blood supply. It just depends on how many tumors there are and where they are. I do know that Johns Hopkins was doing a clinical trial using Thalidomide (remember the sixties when that was given to pregnant women with disastrous results? It does have other uses and this was potentially one of them). Ultimately you have to find a doctor you trust and then take his/her advice. I spoke at length with my oncologist more than once and she said weighing the risks of Sando against other treatments, this is the best option available and that if she were in my shoes this is what she'd do. I've been on this treatment for five years now and seem to be doing fine (well except for having a gall bladder attack this month--but now that it's gone, that won't happen again--gall bladders can't attack you if they aren't there anymore.)

Hope this helps,
pengie

What is Sansostatin??? Vic had about 2and a half years with no symptons and then in May started with exhaustion, and kidneys are now at 50% from dehydration and weakness. Two IV treatments have helped and we are hoping the shot will show results soon. He had to quit working and is now on complete rest for awhile.Hope to hear from you again. Crystalkay

I also so sando. and now I take interfron shoots 3 times a week doing well so far still working

Sandostatin is a once a month injection to control the symptoms of carcinoid--basically it interferes with the tumors ability to do their nasty stuff. (That's the very easy version of the answer). The risk is gall bladder trouble. The risk of not controlling the carcinoids is fibrosis of the tricuspid valve of the heart, among other things. One other thing I've done is to look up what foods feed carcinoids and I try to avoid them--caffeine, chocolate, soy, bananas, avocadoes, tomatoes, eggplant are among the worst. It's hard for me sometimes, but my tumors aren't growing, they aren't progressing, and that's the goal. I have too many of them and they are all in my liver (except one), so surgery is NOT an option for me.

Again, hope this helps
pengie

Sandostatin is the "brand name" for the octreotide. I am sorry for the confusion I created =).

pengie

Hi, I just joined this Carcinoid Support Group. It looks like it isn't as active as some of the other groups. I was really hoping to find people that share some of my problems (that doesn't sound right.....but you know what I mean).
Anyway, I have been on Sandostatin 30LAR every 2 weeks with sq shots for breakthru. Been doing this for over 2 years. My scans and my labs have improved since I have been on this regimen. I have it delivered to my house and taught my children how to give it (I am a nurse).
I hope that you have a good day and a great 09!
Rhonda

I'm glad the med is working for you. This year my dad has went steadily downhill and we really dont expect him to live thru the week. We are all at peace but hurting just the same. My mom is the one we are most concerned with now. daddy is going to a better place and she will be stuck here with us. lol. I know God has a plan for everything and my prayer is he uses Daddy's death to reach one of his grandchildren who are not walking with God. Good luck to everyone. Lisa

I did the sandostatin for 3 1/2 years but then did a bunch of research and found this great book: THE CHINA STUDY by Dr. Campbell. He's got a lot of evidence that shows that cancer lives on Animal Protein. If you don't eat animal protein, your cancer has nothing to eat and stops growing. (okay he said it with a lot more science but that's it in a nutshell).

Well, i was pretty sick and the sandostatin was barely doing anything so i took a chance and switched to a non-toxic, animal protein free diet AND went off the sandostatin at the same time. A year later, my serotonin was normal, no sign of the carcinoid, and I felt great. Now i'm on my third year of no treatment and still no sign of the carcinoid. I go in every six months for a scan and all the tests and still no cancer.

I tried it because i figured i was going to die soon anyway (i was told i had 2-5 years to live 7 years ago) and i figured i had nothing left to lose but the cancer. And, gosh darnit, so far i have.

PLUS i feel better than i have since i was 25. I am 50 and have run 5 half marathons in the last 2 years and lost over 100 pounds and I feel great. If we eat the foods our bodies were designed to eat, our bodies live a lot longer.