1. < Neuroendocrine Tumors (NETs)

Lanreotide side effects: diarrhea constipation, what to do?

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.

dbamos1945 | @dbamos1945 | 4 days ago

@robin5: Hi! I was diagnosed NET small intestine primary with liver metastases, grade1, well-def, stage 4, KI67 -1% in 2021.
I found that a NET specialist oncologist offered me the best imaging, advice of treatment; as well as most effective treatment for specific symptoms and tumor control.
NET cancer reacts differently than other cancers and every NET diagnosis presents a patient whose cancer is unique to them. I would ask for a consultation referral from your doc to receive expert opinions on NET symptom relief, tumor treatment and verification that a NET surgeon could remove primary tumor.
It is time you have the best NET specialists so you will be able to live WITH this cancer and control tumor progression. Just my 2cents…

REPLY
2 replies
robin5 | @robin5 | 4 days ago
In reply to @dbamos1945 "@robin5: Hi! I was diagnosed NET small intestine primary with liver metastases, grade1, well-def, stage 4,..." + (show)
@dbamos1945

@robin5: Hi! I was diagnosed NET small intestine primary with liver metastases, grade1, well-def, stage 4, KI67 -1% in 2021.
I found that a NET specialist oncologist offered me the best imaging, advice of treatment; as well as most effective treatment for specific symptoms and tumor control.
NET cancer reacts differently than other cancers and every NET diagnosis presents a patient whose cancer is unique to them. I would ask for a consultation referral from your doc to receive expert opinions on NET symptom relief, tumor treatment and verification that a NET surgeon could remove primary tumor.
It is time you have the best NET specialists so you will be able to live WITH this cancer and control tumor progression. Just my 2cents…

Jump to this post

He has spoken to dieticians and each person says eat what make you feel good. Just thought if anyone else had the same situation and what they take or eat to make them feel better. Thank you.

REPLY
kjstein | @kjstein | 4 days ago

I did lanreotide injections for about 3 years until it appeared that it was not as effective at slowing progression and I was switched to Everolimus (Affinitor) tablets once a day. I have an unknown primary with mets to liver and no carcinoid symptoms (diarrhia or flushing). With Lanreotide I had constipation, bloating, and abdominal pain most days--all disappeared when I discontinued the shots. Miralax helped with the constipation and I never figured out the diet triggers either. Looking back, I'm pretty sure that the lanreotide caused digestive enzyme insufficiency for me and I found that taking digestive enzymes (over the counter, but brand recommended by my doctor) with meals really helped to relieve my symptoms. Since I do not have a gall bladder, I have continued with the digestive enzymes and think they are still helping me feel 'normal'. I'd talk to your doctor about your issues and get his/her perspective and ask about digestive enzymes. I think the first place I heard them suggested was on a support group zoom meeting with Dr. Starr from Mayo Jacksonville--he thought it was worth a try.
Good luck!

REPLY
susan481 | @susan481 | 4 days ago

My partner has tried a variety of approaches - settled on prunes which seem to help all sorts of gastrointestinal issues. . . There is a tea she sometimes uses if very constipated …

REPLY
bluebird1953 | @bluebird1953 | 3 days ago
In reply to @cmhgiddy24 "Hi, I SO feel for your partner! I have primary pancreatic net, liver mets. and had..." + (show)
@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!

Jump to this post

My husband takes Creon for his diarrhea even though his tumors are mostly in his liver. It has helped him very much, but he also takes an otc anti diarrhea med. But not as many as before the Creon. It’s been a god send for him.

REPLY
1 reply
lindabees | @lindabees | 2 days ago
In reply to @bluebird1953 "My husband takes Creon for his diarrhea even though his tumors are mostly in his liver...." + (show)
@bluebird1953

My husband takes Creon for his diarrhea even though his tumors are mostly in his liver. It has helped him very much, but he also takes an otc anti diarrhea med. But not as many as before the Creon. It’s been a god send for him.

Jump to this post

That's great news! I'm so glad the creon is helping him!

REPLY
lindabees | @lindabees | 1 day ago
In reply to @robin5 "Hi I am writing this for my husband who has been diagnosed with neuro endocrine pancreatic..." + (show)
@robin5

Hi
I am writing this for my husband who has been diagnosed with neuro endocrine pancreatic cancer, stage 3 grade 1. He takes lanreotide injections every 28 days. It will almost be a year now. Problem is he wakes up every morning with stomach issues, upset stomach. Tries to watch what he eats. Takes creon with every meal. Any suggestions would be helpful. Inoperable and unable to have chemo. Thank you.

Jump to this post

I'm sorry your husband is going through this. You may get more responses if you start a new discussion with your question. I pray he finds relief.

REPLY
robin5 | @robin5 | 23 hours ago
In reply to @dbamos1945 "@robin5: Hi! I was diagnosed NET small intestine primary with liver metastases, grade1, well-def, stage 4,..." + (show)
@dbamos1945

@robin5: Hi! I was diagnosed NET small intestine primary with liver metastases, grade1, well-def, stage 4, KI67 -1% in 2021.
I found that a NET specialist oncologist offered me the best imaging, advice of treatment; as well as most effective treatment for specific symptoms and tumor control.
NET cancer reacts differently than other cancers and every NET diagnosis presents a patient whose cancer is unique to them. I would ask for a consultation referral from your doc to receive expert opinions on NET symptom relief, tumor treatment and verification that a NET surgeon could remove primary tumor.
It is time you have the best NET specialists so you will be able to live WITH this cancer and control tumor progression. Just my 2cents…

Jump to this post

Thank you. Tumor is inoperable. So injections are to maintain
It.

REPLY
View MoreView Less
Please sign in or register to post a reply.