Any one with Neuroendocrine tumors getting the shot once a month?

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

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zacharycat | @zacharycat | Jul 25 10:50am

In reply to @beatie62 "I one more question is anyone experiencing bitter taste with eating food and what are you..." + (show)

I take cabometyx (40 mg tablets) and it gives a metallic taste to food. Not sure what can be done, if anything.

shcreighton | @shcreighton | Jul 25 9:38am

In reply to @kevinmonroemi "I had unpredictable diarrhea, as far as I know lesions are tumors." + (show)

Try going gluten free. My son resolved his diarrha that way.

Turkey, Volunteer Mentor | @tomrennie | Jul 24 6:40pm

In reply to @beatie62 "Yes" + (show)

What is it supposed to do? How long have you been taking it? Is it working?

beatie62 | @beatie62 | Jul 24 3:13pm

In reply to @tomrennie "I never heard of it until you mentioned it. Are you taking it?" + (show)

Yes

Turkey, Volunteer Mentor | @tomrennie | Jul 24 2:27pm

In reply to @beatie62 "Is anyone on the xermelo 250 mg tablets daily and how much is it helping and..." + (show)

I never heard of it until you mentioned it. Are you taking it?

rkklinger | @rkklinger | Jul 24 11:40am

My husband has been having Lanriotide injections every 28 days for 2 1/2 years. He is Stage 4 with tumors throughout his skull and body. He had 1 tumor removed 30 years ago when there were no medication options. He has minimal side effects. The first week after injection, he isn't very hungry and has a hard time eating. However, he does everything he wants to do -- golfing daily, 120 pushup/day, 30 minutes on a stationary bike. Really the only issue is not likely most food and not being hungry. He takes enzymes to help with digestion which definitely makes a difference.

beatie62 | @beatie62 | Jul 24 7:39am

I one more question is anyone experiencing bitter taste with eating food and what are you using to help?

beatie62 | @beatie62 | Jul 24 7:38am

Is anyone on the xermelo 250 mg tablets daily and how much is it helping and the best way to take it before a meal or after a meal and what else do you take with it that will help a lot with the diarrhea