1. < Neuroendocrine Tumors (NETs)

Diet restrictions with Lanreotide?

Posted by helloitsme @helloitsme, Sep 28, 2023

I had my first Lanreotide injection four days ago on Monday, but was not told of any diet restrictions. I've seen that I should eat lean protein and lots of vegetables, but I read in the past that I need to stay on a low fiber (not many veggies) diet to reduce diarrhea due to the tumors in my cecum and small intestines. Now that I'm on Lanreotide, am I allowed to have veggies, my favorite foods in the world??? Will the Lanreotide keep me from having diarrhea if I do eat cruciferous veggies? I've never eaten much meat, and I'm really having a hard time eating the low fiber diet, that I feel is not a healthy diet! I haven't had any side effects from the injection other than a horrific headache about 4 hours afterward that lasted about 5 hours. Then another headache on the second day that lasted a couple of hours.
I chose not to have any surgery. I have NETs in my cecum, small intestine, lymph nodes, liver and heart. Lanreotide stopped my diarrhea the first day of treatment, and I am so darn happy about that!
Anyway, I would love to hear what diet y'all are following while on the Lanreotide! Best of luck to you all...my prayers are with you!

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

jlsgt | @jlsgt | Sep 17 1:32pm

"My question is simply, would not eating these foods if I am not having problems change my prognosis at all."

Based on my experience as a NET patient and having talked to no less than 10 surgical and medical oncologists over the course of this journey, I don't think so. My Surgeon said " eat what you want to". That's what I do. Your diet just sounded strict to me, but it may have been your diet without a NET diagnosis anyway? Information and recommendations surrounding this cancer is always changing though. When I read recommendations, I always look for a date on that information.

On the subject of the drug Lanreotide and your diet, I found it to really help me digest food before NETs small bowel surgery (I had 3 constrictions) . I continue to believe that I benefit from it in that regard today. I currently do not have any problems. It sounds like your current diet is working well for you. That's what counts.

REPLY
phyllisden | @phyllisden | Sep 17 11:37pm
In reply to @dougt "I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five..." + (show)
@dougt

I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five of 16 lymph nodes. Was monitored by oncologist with no experience in carcinoid cancer for seven years mostly via annual CT scans and early on a couple of Octreoscans. Self-administered Octreotide injections for only a few months. I was symptom free from Carcinoid Syndrome at the time.

Roll the clock forward seven years and I found out all was not as good as we thought. Went in to ER for what my wife thought was a heart attack and found out tumors had metastasized to liver, pancreas, mesentery, and bone. After switching doctors to a more renowned hospital in the Cleveland area, I was put on Lanreotide. I currently have Stage 4 illness that is inoperable.

I was told of no diet restrictions. I even asked directly to doctor who is now treating me. Was told there are no diet restrictions.

I have been eating raw carrots, brocolli, and celery for lunch for years and have not stopped after Lanreotide. I also eat apples (skin on), and many forms of berries. I also take Metamucil once daily at the advice of my colorectal doctor. I am not experiencing problems with diarrhea but have bloating usually late in the day, and facial flushing occasionally.

Should I not be eating raw veggies and fruits with skins on them? Is this sound advice even if I am not having regular symptoms for carcinoid?

Jump to this post

Dougt - There is a good website you might checked out http://www.netrf.org (Neuroendocrine Tumor Research Foundation) that has a link - Nutrition & NETS that might be very helpful for you.
It's not so much about food and the Lanriotide, but foods and your body - particularly if you've had intestional surgery. Your system just cannot digest and process foods like it used to. Vegetables with skins on are harder to digest, and some (brocoli for example) can cause more gas).
I was diagnosed with Stage 4 neuroendocrine cancer in March, 2018 when I had a blockage in my small intestine that was a neuroendocrine (carcinoid) tumor. They removed 10". This was after eleven years of misdiagnosis. In July, 2019 I had another blockage in my large intestine and lost 11". So I've lost 21" total. So I certainly can't eat like I used to.
There are several other sites that also have information about eating/nutrition while dealing with this cancer. LACNETS.org is a great source of helpful information.
I hope this is helpful.

REPLY
1 reply
janmar1960 | @janmar1960 | Sep 26 8:51am
In reply to @dougt "I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five..." + (show)
@dougt

I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five of 16 lymph nodes. Was monitored by oncologist with no experience in carcinoid cancer for seven years mostly via annual CT scans and early on a couple of Octreoscans. Self-administered Octreotide injections for only a few months. I was symptom free from Carcinoid Syndrome at the time.

Roll the clock forward seven years and I found out all was not as good as we thought. Went in to ER for what my wife thought was a heart attack and found out tumors had metastasized to liver, pancreas, mesentery, and bone. After switching doctors to a more renowned hospital in the Cleveland area, I was put on Lanreotide. I currently have Stage 4 illness that is inoperable.

I was told of no diet restrictions. I even asked directly to doctor who is now treating me. Was told there are no diet restrictions.

I have been eating raw carrots, brocolli, and celery for lunch for years and have not stopped after Lanreotide. I also eat apples (skin on), and many forms of berries. I also take Metamucil once daily at the advice of my colorectal doctor. I am not experiencing problems with diarrhea but have bloating usually late in the day, and facial flushing occasionally.

Should I not be eating raw veggies and fruits with skins on them? Is this sound advice even if I am not having regular symptoms for carcinoid?

Jump to this post

Some diet restrictions are because the Nets have caused a possibility of bowel obstruction so raw veg is avoided for these people

REPLY
dougt | @dougt | Sep 27 11:57am
In reply to @phyllisden "Dougt - There is a good website you might checked out www.netrf.org (Neuroendocrine Tumor Research Foundation)..." + (show)
@phyllisden

Dougt - There is a good website you might checked out http://www.netrf.org (Neuroendocrine Tumor Research Foundation) that has a link - Nutrition & NETS that might be very helpful for you.
It's not so much about food and the Lanriotide, but foods and your body - particularly if you've had intestional surgery. Your system just cannot digest and process foods like it used to. Vegetables with skins on are harder to digest, and some (brocoli for example) can cause more gas).
I was diagnosed with Stage 4 neuroendocrine cancer in March, 2018 when I had a blockage in my small intestine that was a neuroendocrine (carcinoid) tumor. They removed 10". This was after eleven years of misdiagnosis. In July, 2019 I had another blockage in my large intestine and lost 11". So I've lost 21" total. So I certainly can't eat like I used to.
There are several other sites that also have information about eating/nutrition while dealing with this cancer. LACNETS.org is a great source of helpful information.
I hope this is helpful.

Jump to this post

Phyllisden, thank you for the information. At this time, I will continue with no diet restrictions as I don't seem to have any symptoms of blockage or carcinoid syndrome.

My situation is similar to yours. After 15+ years of being told my digestive issues were all in my head or related to "micro-colitis" or IBS, I landed in the hospital to have a blockage removed along with 16 lymph nodes and approximately 34-inch of small and large bowel combined. Spent over 30-days in hospital and an additional 2-weeks in rehab. That was 8 years ago this month. Until a year ago, things seemed to be going well and then I was diagnosed with stage 4 carcinoid with tumors on liver, pancreas, mesentery, and bone. My diet has slowly returned to what it used to be. However, I no longer consume alcohol or spicy foods.

REPLY
beatie62 | @beatie62 | 1 day ago

Have any experience symptoms of loss of taste food taste better

REPLY
beatie62 | @beatie62 | 1 day ago

I am taking the lanreotide injection every month

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