1. < Neuroendocrine Tumors (NETs)

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

Posted by nana120 @nana120, Jul 18, 2023

Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec 2022. Like so many of us it was discovered by accident during a GI test. I received my first lanreotide injection July 6, 2023 with minimal instruction, only that I might have intestinal upset (I did) and that I would not be able to eat spicy food for the foreseeable future. I am to a have one injection every 28 days for the next 10 months. I stumbled on this site while trying to find some information about diet information and would appreciate any direction or experience the group can share.

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

pavlina60 | @pavlina60 | Jul 21, 2023
In reply to @nana120 "I am beyond appreciative for the internet resources and you are so right about not much..." + (show)
@nana120

I am beyond appreciative for the internet resources and you are so right about not much from the oncologists in the way of information regarding side effects or diets. I feel so blessed to have stumbled on this group while scouring the internet for myself! Hugs!!
P.S. Have you had issues with avocados? One site I found says not to eat, it some say it is a healthy fat.

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nana120- I eat 1 boiled egg and 1/2 avocado a day without any symptoms. My surgeon and oncologist said that if I do not feel any uncomfortable effect I should eat it. I feel cramps and pain from brie, and pasta with red sause ( even very small amount).

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pavlina60 | @pavlina60 | Jul 21, 2023
In reply to @nana120 "Good morning, I just wanted to let you know that with your encouragement I had my..." + (show)
@nana120

Good morning, I just wanted to let you know that with your encouragement I had my first small piece of dark chocolate last night with apparently no bad side effects Yay! Onward & upward! Now I’ll get some cherry juice I hadn’t even thought of it. Thanks for sharing your diet!

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I also eat lots of fish ( salmon and cod). Sardines have a lot of protein - good snack!

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1 reply
nana120 | @nana120 | Jul 21, 2023
In reply to @pavlina60 "I also eat lots of fish ( salmon and cod). Sardines have a lot of protein..." + (show)
@pavlina60

I also eat lots of fish ( salmon and cod). Sardines have a lot of protein - good snack!

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I could manage the cod, but already found out the salmon caused diarrhea. Just as the recommendation said it would fatty fish was on the no-no list, but I have already eaten albacore tuna on top of a lettuce salad. Made a shrimp fried rice for lunch today that turned out pretty good, so each day is an adventure! Your tips have proved invaluable. Thanks so much!

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helloitsme | @helloitsme | Jul 22, 2023
In reply to @nana120 "My oncologist’s nurse recommended I drink Boost for weight gain, but everything I’ve read says stay..." + (show)
@nana120

My oncologist’s nurse recommended I drink Boost for weight gain, but everything I’ve read says stay away from milk and Boost has milk in it. Has anyone had experience with it. She said there may be one that is lactose free.

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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!

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1 reply
nana120 | @nana120 | Jul 22, 2023
In reply to @helloitsme "I use Orgain Nutrition vegan protein shakes...plant based, gluten free, free of dairy and they also..." + (show)
@helloitsme

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!

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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!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 22, 2023

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!

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1 reply
nana120 | @nana120 | Jul 24, 2023
In reply to @hopeful33250 "Hello @nana120 I would like to join the other members of the NET support group in..." + (show)
@hopeful33250

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!

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 24, 2023

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. 🙂

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liefylaura | @liefylaura | Aug 17, 2023

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?!

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2 replies
RM | @mmerry | Aug 18, 2023
In reply to @liefylaura "Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First..." + (show)
@liefylaura

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?!

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

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