Lanreotide side effects

@destinjim: Your symptoms sound so familiar, Lanreotide injections slowly relieved these symptoms for me; however, I am now in my 4th year of 28day injections. A year ago I finished my PRRT Lutathera treatments (good resolution of liver metastases and small bowel primary NETS) and am overjoyed to report I am now feeling like my old 80 yr old self. Bowel activity is pretty normal without the clay-like color (no diarrhea except if I ingest spicy or
No-No foods). I have continued to take “Gas-Ex” when eating gassy meals & stool softeners before bed.
NET patients report different results from same treatments; but I can offer you my experience… It Takes Time To See Results From Lanreotide. Be persistent in receiving your 28 day shots! Bette (dbamos1945).

@destinjim Like dbamos1945 I have been taking Lanreotide injections for three years. I have the same symptoms you and dbamos experience, but they are small price to pay for the extended life Lanreotide is providing me. The loose stools are not a problem, and I have no pain or indigestion. Scans are scary times as my doctor told me Lanreotide has a finite time span to work, but I take heart from others on this forum who report continuing to see no growth or spread of tumors after seven, even ten years. Long may it continue to work its magic, I say!

You had 2 ft of small intestine removed due to NETs. I'm assuming you also had your gall bladder removed? I contribute those light stools to less fat absorption. I'm in the boat. Same amount of SI removed and still have NETs and I suspect I will for now on. I'm on Lanreotide for 2 years now. I more often than not have those light stools. It's a real pain in the butt, but I'm glad to be here.

Yes, those are all classic side effects of the shots. Check with your doctor first & see if you can try Imodium or Lomotil for diarrhea & gas x for gas.

Hello @destinjim and welcome to the NETs support group on Mayo Connect. I see that many NET forum members have responded to your concerns about Lanreotide treatment. I hope you have a better understanding of the side effects as well as the benefits of Lanreotide.

On Connect, there are other discussions about this treatment. You can read more of these posts by following this link: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I would be interested to know whether any of the suggestions offered here have been helpful to you. Will you continue to post updates?

@fraaseo

Hi, regarding Imodium - I find it helps, but if I wait, then it goes away on it's own. It's a matter of comfort. The Gas X did not work at all for me and created more discomfort.
We are all test subjects for ourselves as responses will differ........Zebras!