Lanreotide side effects

Posted by susan481 @susan481, Apr 30 6:21am

My partner was diagnosed w a stage 4 grade 2 pancreas origin NET. She has started lanreotide & is having diarrhea and then very bad constipation. She is trying all sorts of things to address but mostly not getting relief and has pain. Advice?

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

Bless her heart!!! I have experienced those moments too but the more I have been taking the Lanreotide injection the side effects have lessened but the diarrhea and nausea is still in effect with me to. I did get some PROMETHAZINE for nausea and it helps.

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Thanks. Sorry to hear re your nausea - and thanks for the info

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Hello @susan481 and welcome to Mayo Connect. I'm sure your partner appreciates you reaching out for information to help her as she adjusts to this new treatment. Has she contacted her doctor's office to see if they have any recommendations for the side effects? If not, this would be a good place to start.

We have a discussion group with posts about this topic. Here is a link to that discussion,
--First Lanreotide Injection
https://connect.mayoclinic.org/discussion/first-lanreotide-injection/?commentsorder=newest#chv4-comment-stream-header
Many members speak of the side effects. For most, the side effects do lessen as the treatment continues. There is one post from @stevestenberg31 (https://connect.mayoclinic.org/comment/1122213/) where he discusses dietary changes he made in order to lessen the side effects. Feel free to review the posts in that discussion group and if you hit, "Reply" under a post that is of interest to you, you can post a question or comment to any post. By clicking on "Reply" the member will be notified of your comment or question.

How long ago was your partner diagnosed? Have there been any other treatments suggested?

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@hopeful33250

Hello @susan481 and welcome to Mayo Connect. I'm sure your partner appreciates you reaching out for information to help her as she adjusts to this new treatment. Has she contacted her doctor's office to see if they have any recommendations for the side effects? If not, this would be a good place to start.

We have a discussion group with posts about this topic. Here is a link to that discussion,
--First Lanreotide Injection
https://connect.mayoclinic.org/discussion/first-lanreotide-injection/?commentsorder=newest#chv4-comment-stream-header
Many members speak of the side effects. For most, the side effects do lessen as the treatment continues. There is one post from @stevestenberg31 (https://connect.mayoclinic.org/comment/1122213/) where he discusses dietary changes he made in order to lessen the side effects. Feel free to review the posts in that discussion group and if you hit, "Reply" under a post that is of interest to you, you can post a question or comment to any post. By clicking on "Reply" the member will be notified of your comment or question.

How long ago was your partner diagnosed? Have there been any other treatments suggested?

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Thanks for the reply and mentorship. Diagnoses on February. Yes she has spoken with her doctor. And just followed the digestive group top. Will check out the link. And thank you.

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Hi, I SO feel for your partner! I have primary pancreatic net, liver mets. and had surgery 10/23 to remove pancreatic tail and most mets in my liver. I 've also been on Lanreotide every 4 weeks since 1/24. This Feb. I began every 3 weeks because my liver mets had progressed a small bit. Every shot I have had, don't know if its the cancer or the shot, everything seems to freeze up both digestively and bladderwise, with lots of stomach cramping, bloating and misery for a week after. In Mar. , even though fecal testing has shown negative for me, I was put on Creon for Exocrine Pancreatic Insufficiency (EPI). I guess it's pretty common when you have pancreatic surgery for your pancreas to quit making digestive enzymes. This has REALLY helped me, even though I still have some issues re: dosing. I also eat light meals of very bland food like rice, toast, crackers for a few days after shot. Fiber and fats also seem to aggravate things. Magnesium at bedtime helps for sleep and resuming regularity. I would ask her drs. about that. Also, though Creon is expensive. If your partner is on Medicare, United Healthcare Medicare RX plan will cover it totally with the exception of your initial yearly deductible. This is huge! Hope what I've had to say will help and save a bit of time too. God Bless you & her on this journey!

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I have a very similar situation. ( you can look at my posts). But, in short - to aleviate the nausea at the time of shot I take Zofran ( ondansentron) right before the shot. Never eat before, and eat crackers and swiss cheese the day of the injection.
I also take Creon with all my meals! That has helped a lot! Diet is very important with pNETs - no tomatoes, watermelon, pineapple, aged cheeses, alcohol, low fiber diet (no whole grain). The good news is that with time the symptoms after injection lessen! (I have been on Lanreotide since March 2023). Good luck! Have faith! This is treated more like a chronic disease!💜🦓

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@cmhgiddy24

Hi, I SO feel for your partner! I have primary pancreatic net, liver mets. and had surgery 10/23 to remove pancreatic tail and most mets in my liver. I 've also been on Lanreotide every 4 weeks since 1/24. This Feb. I began every 3 weeks because my liver mets had progressed a small bit. Every shot I have had, don't know if its the cancer or the shot, everything seems to freeze up both digestively and bladderwise, with lots of stomach cramping, bloating and misery for a week after. In Mar. , even though fecal testing has shown negative for me, I was put on Creon for Exocrine Pancreatic Insufficiency (EPI). I guess it's pretty common when you have pancreatic surgery for your pancreas to quit making digestive enzymes. This has REALLY helped me, even though I still have some issues re: dosing. I also eat light meals of very bland food like rice, toast, crackers for a few days after shot. Fiber and fats also seem to aggravate things. Magnesium at bedtime helps for sleep and resuming regularity. I would ask her drs. about that. Also, though Creon is expensive. If your partner is on Medicare, United Healthcare Medicare RX plan will cover it totally with the exception of your initial yearly deductible. This is huge! Hope what I've had to say will help and save a bit of time too. God Bless you & her on this journey!

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Thanks so much. Had not heard of the Ecocrine Pancreatic Insufficiency & also that fiber could be a problem (has been adding fiber to diet). Thanks on Creon & on the magnesium idea. Appreciate the help and sending strength your way

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@pavlina60

I have a very similar situation. ( you can look at my posts). But, in short - to aleviate the nausea at the time of shot I take Zofran ( ondansentron) right before the shot. Never eat before, and eat crackers and swiss cheese the day of the injection.
I also take Creon with all my meals! That has helped a lot! Diet is very important with pNETs - no tomatoes, watermelon, pineapple, aged cheeses, alcohol, low fiber diet (no whole grain). The good news is that with time the symptoms after injection lessen! (I have been on Lanreotide since March 2023). Good luck! Have faith! This is treated more like a chronic disease!💜🦓

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Thanks for the reminder of being like a chronic disease! And no nausea here but will investigate Creon! Best to you

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@susan481

Thanks for the reminder of being like a chronic disease! And no nausea here but will investigate Creon! Best to you

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Creon has been my savior 🙂

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