Diet restrictions with Lanreotide?

@helloitsme , Hi! I have pancreaticNET with liver metastases, I am on Lanreotide after surgery for 7 months now. The only restriction I follow is no aged cheese, COOKED vegetables, peeled fruit. In other words - I can eat ( by trial and error) anything that does not upset my " insides" :). Sometimes I eat an accasional spicy meal and I ' pay' for it. But I am not staying away from any vegetables; eat greens in moderation as I am on Coumadin also.

Check out online sites like Neuroendocrine Tumor Research Foundation to locate what to eat with NETs, however the extra “no-nos” added by lanreotide are spicy foods, tomatoes, fatty meats, cruciferous vegetables, sugar/sweets. No uncooked veggies, all should be well cooked (not my favorite either). Upside it that you can have potatoes, white bread, white rice, white pasta, just be cautious of toppings on all! Peel all fruits i.e., apples & peaches, but no watermelon just cantaloupe is OK. I eat lots of grilled/baked chicken & fish & occasionally a lettuce salad with vacuum packed tuna on top. My specialist dietitian sent me a cookbook for NETS, but it didn’t include limitations of lanreotide so I’ve had to eliminate some ingredients that conflict. I hated that I was told initially that I would have to do a trial & error method, but I see why as I get further along since we all seem to react differently. Good luck!

Low fibre diet was advised due to my small intestine net causing a possible bowel obstruction.
I've nit heard of any duet restriction due yo lanreotide injections. But low amine diet is advised to help stop diarrhea and carcinoid syndrome. I find gassy vegetables like cauliflower and broccoli help me

I should emphasise I avoid cauliflower and broccoli to help curb diarrhea

After about 18 months' experimenting, I have finally found solace in porridge with milk for breakfast. White bread, butter and jam seem to agree with me; it's all trial and error of course. At least I am alive 🙂
Allgo

Hello @allgo,

As this is your first post on Mayo Connect, I would like to welcome you to the NETs support group. As you feel comfortable, please share a little about your NET diagnosis. You seem to indicate that you have been treated for about 18 months now.

How long ago was your diagnosis? Have you had any other NETs treatments, other than the injections, such as surgery, etc.?

Thank you for the welcome. 18 months ago I had surgery: am now inoperable, stage 4 and get a monthly shot of Somatuline to freeze the cancer

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?

dougt, your Doc said no diet restrictions. Why only eat those 3 raw vegetables at lunch for years? Are those your favorite foods? I'm stage 4 NETS, post Small bowel resection, plenty of tumors on board. Currently on Lanreotide. I have no diet restrictions. All that and I'm having a cheeseburger w fries for lunch. 🙂

jlsgt, I eat all sorts of raw veggies (tomatoes, cucumbers, lettuce, onions, broccoli, etc.) as well fruits with skins daily. I am not limited to broccoli, celery, and carrots. My question is simply, would not eating these foods if I am not having problems change my prognosis at all. Other than worrying about blockages, is there another risk to eating these type foods with carcinoid or while on Lanreotide?

I see a lot of literature warning NET patients to eat only well-cooked vegetables and skinless fruits if you are going to eat these at all. I want to know why this is the recommendation.

At this point I don't plan to change my diet a lot unless I start having symptoms related to the illness.