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← Return to Diet restrictions with Lanreotide?
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Diet restrictions with Lanreotide?
Neuroendocrine Tumors (NETs) | Last Active: Nov 16 2:41am | Replies (16)Comment receiving replies
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?
Replies to "I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five..."
Some diet restrictions are because the Nets have caused a possibility of bowel obstruction so raw veg is avoided for these people
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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.