← Return to Carcinoid cancer: Want to meet others

Discussion

Carcinoid cancer: Want to meet others

Neuroendocrine Tumors (NETs) | Last Active: Aug 7, 2023 | Replies (93)
Comment receiving replies
@derekd

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.

Jump to this post

Replies to "I am a new member (aged 84) even though my cancer was discovered in 2007 during..."
Colleen Young, Connect Director | @colleenyoung | May 10, 2016

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?

VIEW AND REPLY
gaylejean | @gaylejean | May 11, 2016

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.

VIEW AND REPLY
Teresa, Volunteer Mentor | @hopeful33250 | Sep 21, 2016

Hello @derekd. It has been a while since we have heard from you. How are you doing? If you care to share about your treatment, I was wondering if you are still taking the sandostatin injection. @gaylejean just mentioned that her doctor told her of a new medication soon to be available. Have you heard about that?

VIEW AND REPLY