Mayo Clinic Connect
I would like to be in voplved in carcinoid cancer only as that is what I have
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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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,
I’m amazed that three people in the same family have this disorder. It really sounds as if there must be some genetic connection. Keep us posted when you learn something from the genetic testing.
I will do so
Welcome to Connect @amyh2439.
We have a few members in the Connect community who have experience with carcinoid tumors. Please meet @joanney @hopeful33250 @lucci50
Ruth Ann, we look forward to getting to know a bit more about you. When were you diagnosed? How are you doing today?
Hello to all — I am new to the group and interested in connecting with others diagnosed with NETs. I was diagnosed in December 2008 and have been on sandostatin injections every 28 days since 2009. I live in the SE Michigan and the closest support group is in Grand Rapids, about 150 miles away. Even though I know better, sometimes it feels that I’m alone with this rare disease, so I welcome friendly and informative connections with others that are living with Carcinoid. I’m in my 92nd month of treatment, no surgery to date and doing well except for occasional flushing with itching and fatigue. I’m extremely thankful for my doctors that work together to ensure the best care possible and for my progression to date. I stay as optimistic as I can in view of my condition. Even in bad situations I look at what is good and positive in my life. This attitude keeps me going — my glass is always half full.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
Hello – sounds like you are doing well. I was diagnosed in May 2014 and on sandostatin shots every 28 days. I have had surgery – a hemicolostomy, They removed a little bit of my small bowel at the bottom end, my appendix, cecum, illium and any other plumbing in that area , plus all of my ascending colon , 1/3 of my transverse colon, a small piece of my lower stomach and some more small bowel at the top. It took a long time to heal and my body to adjust to the removal of my insides, but I am doing well. I was glad to hear that the only treatment you have needed is the sandostation as that is what I am hoping for. I am expecting to need my gall bladder out as I now have stones and thickening of the wall of gall bladder and pain but that should be a piece of cake compared to what I have already been through
Liked by Colleen Young, Connect Director
Hello @tresjur and welcome to Mayo Connect. I appreciate your attitude and the “glass half-full” approach to life! I also live in SE Michigan and U of M has become my source for carcinoid treatment. I would love to attend the support group in GR, however, it is a distance for me as well so it is good to have Mayo Connect. Carcinoids do produce a sense of “aloneness” in that very few people have ever heard of it and because traditional chemotherapies and radiation are not used, it also leaves you feeling on the outside of the traditional cancer spectrum. I have had three surgeries for carcinoids, but no other treatment have been needed as I don’t have the symptoms of the carcinoid syndrome (flushing, diarrhea, etc.). If you live in SE Michigan have you tried Gilda’s Club? It is a cancer support group. Their main office is in Royal Oak, however they also have meetings in Farmington Hills at Beaumont/Botsford. They offer yoga classes, art therapy, Look Good, Feel Better, etc. It is good to have you join our group here at Mayo Connect. Keep in touch!
To amyh2439: I’m so sorry to hear of your carcinoid diagnosis. It is a difficult diagnosis to understand because it is rather rare and even doctors do not always have good info to give you. I’ve had several, all in the duodenal bulb. They have all been removed quite successfully and I’ve had good outcomes. I hope that you will have a similar experience. The important thing about carcinoids is to find a doctor who is experienced in this type of cancer and be diligent in following up with your doctor(s) to be sure that you are carcinoid-free. As they do not show up on regular X-rays or CT scans, special tests and procedures must be done to track them down. Best wishes and stay connected with Mayo Connect. We are all here for each other!
@lucci50 I go to University of Michigan. I have two doctors there. One does the surgery and the other is a GI specialist who specializes in Carcinoids.
I’d like to add my welcome to you @tresjur. Thanks for joining our Carcinoid group here.
Good to hear from you @hopeful33250 and @joannem
@joanney @amyh2439 @lucci50 @derekd @gaylejean it would be great to get an update from you all. How are you?
Many thanks to all who have responded and welcomed me into the community. I look forward to
receiving and sharing information and experiences as I travel this slippery road of Carcinoid. Blessings,
I continue to have followup every six months at Mayo Clinic. They do a 24-hour HIAA urine test, blood work and CT scan. I continue to get a Sandostatin injection every 28 days to 1 month at the 30 mg. dose. I do well and feel good – only have occasional flushing and, for the most part, diarrhea. My doctor told me about a new medication waiting FDA approval this fall. It has shown some promise in reducing tumor size/growth. Hopefully I can use this.
Has anyone done any research with immunotherapy or talked to their doctor about it to know if it is something that NET patients can consider?
Liked by Teresa, Volunteer Mentor
Hi @gaylejean. Thanks for sharing more of your treatment. I’m in the process of the 24 hour 5 HIAA test as well and a repeat of the Serotonin Serum blood test. While I see a doctor at Univ. of Michigan, I noticed that my lab tests are sent to Mayo. I had a high Chromogranin A blood test so that is the reason for the 24 hour 5 HIAA and the repeat Serotonin Serum. I’m not familiar with the new medication that your doctor mentioned, however, there is a National NET Cancer Patient Conference in New Orleans Sept. 22 through 24, so perhaps some more info will come from that conference. While I’m not attending, I hope that some folks who do attend can fill the rest of us in on what is new in the area of treatments. May I ask the name of your doctor at Mayo? Keep us posted on your progress. Best wishes. Teresa
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