Hi all! This is my first post so I probably won't be brief, but I have followed all commentary on NETS Support with great interest! I have been on Somatuline Depot injections since Jan. I just had my 6 mo. scans and it IS working to keep my cancer at bay. However, I pretty much agree with all commentary above, SO many side effects from it, things to monitor, from within a day to 2 weeks of having my injection. Sluggishness is high and energy level is so very low. Ask my husband. Much constipation and terrible painful gas following the injection, many digestive issues which I now attribute more to my injection than my cancer. I recently had a hernia surgery and my preadmission EKG showed bradycardia, low heartrate, which I didn't have before. I also had a very low heartrate event in the hospital. My glucose so far has tested as normal and I also do not have EPI, yet anyway. My next oncology appt. and injection are next week and also many labs are due so we can see more what's going on, or not? I'll keep you posted. Bottom-line, I don't think any one of us are imagining any of these things, many variables for each situation and that is the challenge. (Background on me, I am 73. Last summer was having severe stomachache on my left side that was not going away. Had a cat scan, MRI, PET scan and liver biopsy that ultimately showed secondary liver NETS. I had multiple liver resections and exploratory surgery last Oct. where primary NET was found in my pancreatic tail and distal pancreatectomy was done also. My cancer was diagnosed as primary non-functioning PNET, liver mets / pT1, pN0, pm1a, grade 2, stage IV. My pancreas is now clear, but I still have a sprinkling of stuff in my liver, thus the lanreotide treatment. My oncology surgeon is great and has some pretty good creds and training, but what I have is not very common in my city so I'm not sure my oncologist has treated many people like me.)
Hello @cmhgiddy24 and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. I found Mayo Connect when I was facing my third surgery for NETs and it was great to find others who could share this journey with me.
It is good to hear that the treatment you've had is keeping the cancer at bay. I'm sure that you are pleased with these results. The side effects of the injections do sound problematic. Perhaps, at your next oncology appointment, you can talk about these side effects and ask if there is anything that can be done to lessen these post-injection problems.
You mentioned that your oncologist has probably not treated many NETs patients, like yourself. I would highly recommend that you scheduled at least one in-person or virtual appointment with a NET specialist to review your situation and determine the best treatment options going forward.
Mayo Clinic has NET specialists at all three of their locations. If you would like to obtain a consultation to review your records, here is a link to getting an appointment at a Mayo location, http://mayocl.in/1mtmR63. If, for any reason, you cannot be seen at a Mayo location, here is a list of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
Is a consultation with a NET specialist, something you might consider?