Making a decision about trying octreotide

I took it for a while. Didn't have a problem with it. I'm on a monthly regiment of Lanreotide now. I can't think of a reason NOT to give it a go. Might be a big help.

If it is NET, then by all means do octreotide. Been on it for 13 years and its no big deal. I have never had any serious side effects except a sore butt sometimes. You mentioned not having a gall bladder? are you avoiding fats? You can't eat fast food because most of it is greasy. My wife had her gall bladder removed at age 25 and didn't have dietary issues until she got much older. Our bodies change and so now she has to avoid fat pretty much except stuff like olive oil. she can't eat out anymore because of this issue unless she wants diarrhea. Maybe your problem is the gall bladder being missing and dietary fats.

I’ve been on Octreotide for about 18 months and it stopped the diarrhea. I am back to regular bowel movements. The only side effect has been a sore shot site for a few days.

Hi, something else to perhaps consider trying especially if your diarrhea is possibly caused by bile acid malabsorption also known as B.A.M. ( I always kind of laugh at that acronym) is Colestipol. It is a prescription medication originally for cholesterol lowering but often prescribed for BAM.
I take this medication and truly love it. The only downside is if you take other medications you must time them either one hour before or 4 hours after taking colestipol, as colestipol binds to all medications rendering them ineffective, this includes probiotics and vitamins as well.
Anyways, just thought I would share my experience and what could maybe help.
Good luck!

Ive been on Ocreotide for about 3 years, started with Lanreotide but it didn't suppress the hot flashes caused by Carcinoid Syndrome. Ocreotide did, I get 2 shots every 28 days, just a little tired after for about a day but other than that no other side effects..

I was on lanreotide for 6 months and my first scan after showed significant progression. Have just finished my 4 th round of prrt. It's been really rough especially this last round. Now just waiting fir scan to see if it helped. The waiting for these tests and results is the worst.

I am on octreotide for several years
I still get diarrhea when I eat what I know I shouldn’t
But every once and awhile I need to treat myself
Try keeping a daily journal of what you eat and see what causes the diarrhea you will be amazed at what does
If you get the shot have them spray the area with cold spray and then put all your weight on the other side and leave the leg on the shot side hang
Always make sure they continually keep shaking the shot it is very important
It’s not bad

There really is no down side to octreotide and plenty of upside. Not just symptom control but also tumor control for any microscopic cells that could be floating around. However, there is a blood test the Dr can order to check for bile absorption issues. Mybhusband had that done, confirmed it and was put on colestipol.

I have been on lanreotide for over 5 years. No significant side effects and it has shunk a couple of tumors slightly. Only thing is it hasn't stopped the flushing, but that usually only happens if I occasionally have a drink.

I have been on it for over a year my tumor in the head of my pancreas has gotten smaller and not in pain like I was before take it monthly no problems .