Clay colored bowels & diarrhea side effects with Octreotide

Posted by splendrous @splendrous, 6 days ago

Anyone have the above side effects? I was reading that the shot could effect your liver enzymes? I have non-functioning (no symptoms) metastatic tumors in liver. Considered coming from GI Track. Had my first Octreotide shot 12/18. Three weeks later I have the above side effects. Wonder if the second shot will make it worst. I have a call into my doctor but wanted to know if others have had similar experience.

SEE YOUR DOCTOR AS SOON AS POSSIBLE (DURING OFFICE HOURS) IF YOU
HAVE:

• Signs of liver problems such as yellow eyes or skin, white or clay-colored stools.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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!!💜🦓

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@jefffranken

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.

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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.

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@splendrous

Thanks for your reply. Have your doctors ever run any tests to determine if pancreas or liver function is good? Do they think it is not a symptom to be concerned about?

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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.

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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.

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@stevestenberg31

Yes, I have had 25 Lanreotide injections (24 months) and have similar experience that you cite above. Diet matters.🙏

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Thanks for your reply. So it has not gotten any better for you over the years. No damage noted to the pancreas or liver from the drug? That is what is my concern besides it seems that digestion is not working as it should to absorb nutrients. Best to you as you continue your treatment.

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@gesmone1

Yes. I experience the same thing. I have been on the injections for 2 years.

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Thanks for your reply. Have your doctors ever run any tests to determine if pancreas or liver function is good? Do they think it is not a symptom to be concerned about?

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Yes, I have had 25 Lanreotide injections (24 months) and have similar experience that you cite above. Diet matters.🙏

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This is an interesting question, @splendrous. When you hear back from your doctor, I'd appreciate you letting us know about the doctor's response.

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Yes. I experience the same thing. I have been on the injections for 2 years.

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I have been taking octreotide injections for 4 years for lung NETs and have not had those issues.

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