Carcinoid cancer: Want to meet others

Hello, I am new to this forum and would like to know the following if it applies to anyone. Diagnosed with carcinoid tumor in 2016, metastasized to the liver with lesions. I have been having injections Somatuline 120mg every 28 days. Although I feel great the lesions are slowly increasing. Doctors recommend Lutathera treatment. Has anyone had this treatment, if so what was the side effects & results?

I have had a very simular case of carcinoid and have had injections for 122 times on 28 day cycles. Leasions were stable or showed very minor growth until early this year. I just completed Luthera treatment, 4 treatments 8 weeks apart. A scan before my 3rd treatment showed no increase in tumor size, some reduction in size and no new leasions. The most significant side affect was headache and fatigue, started 3-4 days after each treatment and lasted about 10 days and then I felt fine with normal activity. I will have a scan in December to see how things are going.

Hello @tamb1104 and @dgtorbcwi,

I would like to welcome both of you to Mayo Clinic Connect. I am so pleased that you have connected with each other regarding your carcinoid diagnosis and treatment plans. I have had three surgeries for carcinoids in the duodenal bulb, but so far I have not needed other treatments, other than the surgeries.

I would like to invite you both to a discussion group on Connect about the PRRT treatments. Here is the link, https://connect.mayoclinic.org/discussion/prrt-treatment/. Here you will meet others who have had this treatment. Some have had success and others have not shown much improvement yet.

I hope that both of you are being treated by physicians who are very experienced with this type of cancer. If you care to share more, I would be interested in knowing what types of scans you have had. Have you had carcinoid syndrome symptoms as well?

Here is a video produced by the Carcinoid Cancer Foundation about PRRT treatments that you might find interesting,

I had surgery for carcinoid tumors in my small bowel and abdominal cavity 12 years ago, at Jacksonville Mayo. The report was that the tumors had metastacized, and they told me that I did not need further treatment, but to watch for the development of carcinoid syndrome. I had one small, fatty tumor on my liver, which has since disappeared. Although I have had no symptoms of the syndrome or regrowth of intestinal tumors (a possibility, they told me), I am wondering if I should have the HIAA and seratonin blood tests done just to see if anything is still active. I had my last check-up at Mayo two years after my surgery, and they told me I did not need to return until I had symptoms. My local doctors think if one is not actively ill, no need for tests. But I worry about what is there, and I should be more proactive about my health. Any advice, here, please?

Me, too. Husband is being treated for Carcinoid Syndrome after having a benign gastro tumor removed over 13 years ago. Don't know what the full body scan was that picked up the wide-spread recurrence without. No need for surgery, being treated with synthetic somatostatin Lanreotide.

Hi @docoltun, I thought I would bring in a few members to join me in welcoming you like @markmark007 @cu2 @patrick000 @kim1965 @laurell410 @nana120 who also have experience with lanreotide treatment.

How is your husband doing with the treatment? How are you doing?

I just had my second lanreotide injection this past Tuesday with very little adverse reactions to which I give much credit to the diet information I received from this group. Thank you all very much! Prior to the injection I had a 5-HIAA blood test. My oncologist seemed all right with the results, although he noted a couple of areas that were high. I will have a scan in late August prior to my next appointment & injection to see if anything has changed, so my treatment is early compared to many of you.

Hello. Your situation is very much like mine. I was diagnosed last November. I'm receiving monthly Octreotide injections. One of my tumors had increased appreciably and an interventional radiology procedure was done to reduce its size. Good to connect with you.

Hello...welcome! You have definitely come to the right place. It's informative and ppl here are sweeties. I've enjoyed being here since finding out I have neuroendocrine and carcinoid tumors in my GI tract. As I tell everyone..I'm Praying for US ALL!! 😊

Just wanted to agree about your connecting with the right forum. If we can answer any questions or provide any support, please let us know. I've found people here are so helpful and gracious!