Carcinoid cancer: Want to meet others

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

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.

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

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!

@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?

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