First Lanreotide Injection: Any tips about diet and side effects?

I have had 5 octreotide injections so far and have been loosing weight ( which I need to). Is that from this shot?

Just to update my ongoing process: I am continuing to lose weight, so I tried to drink a Fairlife High Protein Milkshake in chocolate this week to add some fat and calories. The taste was quite good and I decided I could continue them until I spent the night with very crampy abdominal pains and woke to flushing on my face. I had read about some food items causing flushing, but I’m not sure what in the shake caused it. Was it the milk or the chocolate or perhaps some other ingredient? I receive my 3rd lanreotide injection on Aug 29 and a CT with contrast on Sept 8 to see if results are being accomplished. I am truly so appreciative to this group for everything I have learned from you
all!

https://www.oncolink.org/cancers/carcinoid-neuroendocrine-tumors/support/nutrition-for-people-with-neuroendocrine-carcinoid-tumors

I have a Pnet. Sorry that I don’t have advice but rather a question. Why a low amine diet? Many thanks.

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First dose of Lanreotide. Can you share any good resources in following a low amine diet? Particularly a good substitute for nut butter, salad dressing, and any soup?!

I'm popping in late, but thought I'd link to these related discussions:
- Anyone else get bloating and abdominal pain from NETS or Lanreotide?: https://connect.mayoclinic.org/discussion/does-anyone-else-get-bloating-and-sharp-abdominal-pain-from-nets-or-la/
- Facial and lip sores from lanreotide injections for NETs?: https://connect.mayoclinic.org/discussion/faciallip-sores-from-net-injections/

@nana120, I hope you don't mind, but I also extended the title of the discussion you started to reflect the discussion. 🙂

I did have a biopsy in Dec 2022. It was very painful since the IR said he could not sedate me with twilight sedation as originally planned due to the tumor being up under the dome of my liver too close to my diaphragm and my breathing would be too shallow if I was totally sedated. If I had had any symptoms of my NETS I did not know what they were and did not recognize them. I have not mentioned to this group that I also have CLL and have had it since 1996. My local oncologist told me I was his first patient with both. Thank goodness I have a NETs specialist in Dallas who directs that portion of my treatment.

Hello @nana120

I would like to join the other members of the NET support group in welcoming you to Mayo Connect. I'm glad that you found this forum and are learning from the experience of others. I would encourage you to do what others and I have done and that is to ask your doctor for a referral to a registered dietitian at your local hospital. I have consulted with a registered dietitian several times and have found them most helpful.

I see that your NETs were found incidentally. I'm wondering if you have had any other treatments such as surgery, biopsies, etc.? As many of us were symptom free prior to our diagnosis, I'm wondering if you having any symptoms prior to the diagnosis?

I look forward to hearing from you!

I am learning so much from this group. That is one I have never heard of. I was about to get Premier Shakes since my cousin who has diabetes recommended it. I just must do something to not only add protein, but also gain weight. Thank you so much!

I use Orgain Nutrition vegan protein shakes...plant based, gluten free, free of dairy and they also have lots of fruits and vegetable powders in them. They also have non-vegan. You can get them on Amazon...I love them!