Clay colored bowels & diarrhea side effects with Octreotide

Thanks for your reply. So over 8 months were your tumors at the same size or did they grow or from your note new tumors appeared? Are you on any type of treatment since stopping the shots?

I took lanreotide shots for approx 8 months and they caused me more issues than they helped me with so I chose to stop them! They’re supposed to help with the hot flashes & diarrhea but they seemed to cause more and the shot doesn’t shrink the tumors or prevent more future tumors so why bother 🤷‍♀️

My experience is that it’s hard to say if my diarrhea is from the cancer, the meds or diet. So could it be any combination ? Hard to say, but the meds certainly are something I feel great about taking. Just knowing there is something that we can use to battle the cancer. Creon and Xermelo are two meds besides monthly Landreotide injections that are part of my plan. You may want to ask your doctor about them.

Thanks for your reply. Dr Liu of Rocky Mountain Cancer Center has a facebook page, Dr. Liu's Zebras: A Neuroendocrine Cancer Community. https://www.facebook.com/groups/402282629858283 It is a private group. Submit your info to join, He does a zoom call once a month I believe. I listened to the one last night which is recorded and posted on the site as is the one for last month. All of the prior monthly meetings are posted under media and then select video. He mentioned PRRT. He said it was sometimes good but not always. Could affect bone marrow and blood sugar. He does telemedicine visits and I know several people who did see him that way and were pleased to get his opinion on a course of treatment. What was the length of time from when you stopped the shots till you saw that the tumors had grown and there were new ones? Best of luck with your appointment as you pursue a treatment that is right for you. Do let me know what you decide and how you are doing with the new treatment. Joy
Dr Liu office can be reached (303)388-4876
Carina.Carnelian@usoncology.com

We sound very similar. Small bowel primary with mets to liver. Started octreotide after bowel resection. I had the same side effects. I stopped the monthly injections after 1 year because the diarrhea was not being managed well enough with Imodium. My tumors shrunk but I recently found out they have grown and there are new ones. I'm headed to a consult for PRRT today. Not looking forward to that treatment. I should have just suffered thru the diarrhea. I wish you well on this journey.

You are welcome. My blood work up, which they do every month, shows liver and kidney function are fine. However, tumor in liver is growing, so now moving to TARE (Trans Arterial Radio Embolization).

I have been on Lanreotide 120mg since April 2023. First few injections were with bad reaction (nausea, vomiting), I take Zofran 10-15 min before the shot. Light colored stools and diarhea are result of Steatorhea and maladsorption, due to lack of pancreatic enzymes. I have been taking Creon and it seems to help.
I had distal pancreatectomy, removal of spleen and gallbladder(which gets damaged from the drugs, so they remove it) and debulking liver surgery to remove larger metastatic tumors.
Reach out if I can be of any help!
Believe me - it gets better!!💜🦓

Thanks for sharing. Mine was better by the end of the week. Blood test were run to check pancreas and liver function and both were fine. I get my second shot Wed, so will see if side effects return or I will be fortunate like you and they are gone. Good luck with your treatment.

Splenderous....I am on shot 6. My experience with the first injection was clay color and diarrhea for about 4 days. As I got more injections, the duration of the color and texture issues decreased. With shot 5...I had virtually none. My doctors said that as long as I am not Flushing and the diarrhea is halting (ie: non-functioning) that I am fine. They asked me if my stool was oily 9to see if I was just passing, and not digesting fatty foods). I told them it was not and the docs replied that is good. Hope that helps a bit.

Splendrous, I've been on Octrotide injections monthly since April 2018, a month after my first surgery where they found multiple scattered carcinoid tumors, and removed 10" of my small intestine (other than several months during those years where we tried Lanriotide). And yes, I can still get those side effects. Over 50% of patients do have the diarrhea after an injection. If there's more serious effects due to Octreotide, it's more common for them to occur after long term use. After almost seven years of dealing with these tumors, I just recently started taking Creon for malabsorption. Is that due to the fact I've been on Octrotide or the fact I've lost 21" of my intestines? Who knows - maybe both. But labs indicate no serious problems with my pancreas.
Certainly talk to your doctor about any concerns/questions you have.