I would like to be involved in carcinoid cancer group as that is what I have.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I’m also interested in experiences persons with neuroendocrine carcinoid tumor have had.
I am a new member (aged 84) even though my cancer was discovered in 2007 during an emergency operation for a twisted bowel. Transpired I had a carcinoid tumor which was removed and subsequently my oncologist discovered I still had rogue cells. It was not the end of the world because a treatment existed for this cancer and while not a cure it restricts its development. Every 4 weeks I receive a sandostatin injection and have just received number 100. The outcome for me has been the ability to get on with my life and thereby devote what time I left to my family.
It would be great to hear from others who have carcinoid syndrome.
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Hi @derekd and welcome to Connect.
I moved your message to this thread to introduce you to other members who have carcinoid cancer. Please meet @hopeful33250 @lucci50 and @amyh2439. You may also be interested in this discussion https://connect.mayoclinic.org/discussion/has-anyone-used-mayo-clinic-in-rochester-minnesota-for-carcinoid-tumors-the/
Really like your attitude Derek. What side effects (if any) do you have to manage with the sandostatin injections?
My last experience (the best yet) I went to U of Michigan. They have a doctor there who removed a small lesion through an endoscopy procedure. U of Michigan also has a doctor who specializes in carcinoids, his name is Del Valle. I have an appointment with him next week. I believe it is important to be connected with a good teaching/research institution when you are dealing with something unique or rare, the hospital in your neighborhood might not be your best choice. It may involve some extra driving but it is worth the time and expense.
Ralph: If you live in Michigan you might already be aware of a Carcinoid Support Group. They are on the western part of the state, Grand Rapids. So far, I’ve only been in contact with them though email and phone calls, since I’m in SE Michigan, however, the leader of the group has a lot of personal experience with carcinoids and has great info that he can send you. He was the one who told me that many of their members have seen Dr. Del Valle , at U of M. Here is the website to find all of the carcinoid support groups in the U.S. http://www.carcinoid.org/resources/support-groups/directory/. Best wishes, Ralph!
Dear Gaylejean: If you would like to find a carcinoid support group in your area here is a website where they list all of the groups in the U.S. Support Groups Directory – Carcinoid Cancer Foundation. The group in Michigan, where I live, is about three hours from me, however, I’ve been in contact with them through email and phone calls and have received a lot of good information that has helped me to talk to doctors more intelligently and certainly understand this rare disorder in a new way. Best wishes you to and blessings! Please keep in touch via Mayo Connect.
Support Groups Directory – Carcinoid Cancer Foundation
A support group would be helpful, I think. Just to compare treatments others are receiving. I have been living with this since 2002. My mom had the same diagnosis and she lived with it for 24 years before dying at 85. She never had treatments of any kind which is a hopeful prognosis for someone older with this diagnosis. I get a Sandostatin shot 1x/month with a recent increase from 20 to 30 mg.
I was diagnosed in 2002 and mine was already metastasized to liver and lymph nodes. I had surgery – kind of at my insistence because Rochester had a wait and watch attitude. It was lucky I had surgery because I had “blue bowel” which left alone would have probably killed me. I have had monthly Sandostatin shots since 2008 – so about 90 injections so far. My 20 mg. dose was just increased to 30 mg. It is going well but the higher dose has a side effect of pain at the injection site. I feel good most of the time and am grateful for every day I have to spend with my family.
Yes, a support group would be good even if you connected with them by email or phone. There is one person in the Michigan group who also has the disorder in her family. I have never taken any other treatments other than surgery since mine have been small and there is no evidence of metastasis so far. It is good to know about Sandostatin, though. The leader of the Michigan group mentioned he has used it as well. I’m not sure what state you live in, however, if you would like to correspond with the person in Michigan who has the family history, I’ll see if I can put you in contact with her via email. Just let me know. Have you checked the website for support groups to see if there is one in your state?
There is a support group in my state of residence, Minnesota. I have spenttime on that web site and will continue to check in. My mother also hadneuroendocrine carcinoid. She lived with it for 24 years – was diagnosedafter having surgery for colon cancer. She never had treatments oroctreotide. I believe it affected her heart in the end and she died of astoke.Tests have shown our carcinoids not to be genetic – hard to believe.
Yes, that is surprising that your carcinoids are not genetic. They are certainly rare. I’m glad that there is a support group in Minnesota. It will be good to keep in touch with them.
I am taking part into a genetic program as my Daughter has this same cancer also have another relative that has it so we are looking into this,
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