I just had my second lanreotide injection this past Tuesday with very little adverse reactions to which I give much credit to the diet information I received from this group. Thank you all very much! Prior to the injection I had a 5-HIAA blood test. My oncologist seemed all right with the results, although he noted a couple of areas that were high. I will have a scan in late August prior to my next appointment & injection to see if anything has changed, so my treatment is early compared to many of you.
Sounds .like my husband. 7 months in, blood work shows marked improvement. Wonndering what dietary suggestions you got. He is a tough 75 with type 2 diabetes for three decades.
Sounds .like my husband. 7 months in, blood work shows marked improvement. Wonndering what dietary suggestions you got. He is a tough 75 with type 2 diabetes for three decades.
Several on this site who were taking lanreotide injections shared their experiences with dietary issues and it varies as to what is tolerated, but I googled until I found a site for what to eat if you have neuroendocrine cancer that was pretty straight forward. With that help I found that eating a pretty bland diet kept the lanreotide from upsetting my GI system.
Sounds .like my husband. 7 months in, blood work shows marked improvement. Wonndering what dietary suggestions you got. He is a tough 75 with type 2 diabetes for three decades.
Hello! I have been on lanreotide injections since March 2023. The first day I go on crackers and swiss cheese. Avoiding tomatoes, hard cheese, watermelon, pineapple. I tolerate eggs and half an avocado a day. Eat lots of protein - cottage cheese, sardines, chicken and fish. Nothing fried! Occasionally I have a piece of chocolate as my blood sugar tends to drop ( due to lanreotide!). Good luck! We got this!💜🦓
Recently diagnosed with NET of small intestine. I had a bioposy of it ...and its Well-differentiated neuroendocrine tumor, WHO grade 1. I realize this just states its slow to grow. I do not know the stage yet. I was to have surgery but now its pushed back to 3.5 weeks...
Hello, my NET is metastasized to my liver from my lung diagnosis in Dec 2022. My most recent treatment was a Y90 in Dec 2024 after a series of lanreotide injections & oral Temozolomide. I’m waiting to get final results from an MRI tomorrow before we know how successful the Y90 was. Remember this is a marathon not a sprint. Good luck!
Hello, my NET is metastasized to my liver from my lung diagnosis in Dec 2022. My most recent treatment was a Y90 in Dec 2024 after a series of lanreotide injections & oral Temozolomide. I’m waiting to get final results from an MRI tomorrow before we know how successful the Y90 was. Remember this is a marathon not a sprint. Good luck!
Hi
I am curious about your diagnosis & treatment. What type & stage was your NET? What was your course of treatment?
The reason I ask is
I had a 5cm NET in my left lung and I had a lower lobectomy in February 2025. Will start my surveillance CT scans in August. I’m nervous about it all but especially the risk of metastases.
Thank you!!!
Hi
I am curious about your diagnosis & treatment. What type & stage was your NET? What was your course of treatment?
The reason I ask is
I had a 5cm NET in my left lung and I had a lower lobectomy in February 2025. Will start my surveillance CT scans in August. I’m nervous about it all but especially the risk of metastases.
Thank you!!!
Recently diagnosed with NET of small intestine. I had a bioposy of it ...and its Well-differentiated neuroendocrine tumor, WHO grade 1. I realize this just states its slow to grow. I do not know the stage yet. I was to have surgery but now its pushed back to 3.5 weeks...
I had surgery for the very same thing n 2022. Dr removed the obstruction & 1 lymph node & I went home after 4 days. Stayed cancer free until 2024. Best advice I can recommend is getting up & walking after surgery, helps you regain your strength. I also had diarrhea but monthly Octreotide injections helped immensely. Good luck to you!
Hi
I am curious about your diagnosis & treatment. What type & stage was your NET? What was your course of treatment?
The reason I ask is
I had a 5cm NET in my left lung and I had a lower lobectomy in February 2025. Will start my surveillance CT scans in August. I’m nervous about it all but especially the risk of metastases.
Thank you!!!
Hi @blm1024
Welcome! Glad you’re in the other side of surgery.
I have typical lung carcinoids and DIPNECH. Very slow growing. Discovered in 2008. Too many to remove. Had largest 2.6 cm destroyed with ablation. CT scan surveillance all along. Still stage 1. Octreotide injections to control respiratory symptoms.
I talked to a lady from another NETs site who had a typical lung NETs tumor the size of a tennis ball removed along with one lobe at 70 years old. I last talked to her when she was 80. She just had CT scans for 10 years. No recurrence or metastasis. No breathing issues. Doing great.
Lung NETs is much less likely to spread than GI NETs. I hope you find this encouraging and you’re one and done. 😄
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Sounds .like my husband. 7 months in, blood work shows marked improvement. Wonndering what dietary suggestions you got. He is a tough 75 with type 2 diabetes for three decades.
Several on this site who were taking lanreotide injections shared their experiences with dietary issues and it varies as to what is tolerated, but I googled until I found a site for what to eat if you have neuroendocrine cancer that was pretty straight forward. With that help I found that eating a pretty bland diet kept the lanreotide from upsetting my GI system.
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5 ReactionsHello! I have been on lanreotide injections since March 2023. The first day I go on crackers and swiss cheese. Avoiding tomatoes, hard cheese, watermelon, pineapple. I tolerate eggs and half an avocado a day. Eat lots of protein - cottage cheese, sardines, chicken and fish. Nothing fried! Occasionally I have a piece of chocolate as my blood sugar tends to drop ( due to lanreotide!). Good luck! We got this!💜🦓
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Like -
Helpful -
Hug
6 ReactionsRecently diagnosed with NET of small intestine. I had a bioposy of it ...and its Well-differentiated neuroendocrine tumor, WHO grade 1. I realize this just states its slow to grow. I do not know the stage yet. I was to have surgery but now its pushed back to 3.5 weeks...
Thoughts of people who have been thru this????
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1 ReactionHello, my NET is metastasized to my liver from my lung diagnosis in Dec 2022. My most recent treatment was a Y90 in Dec 2024 after a series of lanreotide injections & oral Temozolomide. I’m waiting to get final results from an MRI tomorrow before we know how successful the Y90 was. Remember this is a marathon not a sprint. Good luck!
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Hug
3 ReactionsHi
I am curious about your diagnosis & treatment. What type & stage was your NET? What was your course of treatment?
The reason I ask is
I had a 5cm NET in my left lung and I had a lower lobectomy in February 2025. Will start my surveillance CT scans in August. I’m nervous about it all but especially the risk of metastases.
Thank you!!!
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Helpful -
Hug
2 ReactionsHello @blm1024 and welcome to the NETs group on Mayo Connect. We have several discussion groups on Connect where members have posted about Lung NETs, here is link to many of those discussions:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NETs#discussion-listview
Here you will meet members like @californiazebra @pb50 and many others. As you read the posts in the link above, please feel free to post comments or questions.
Have any other treatments been suggested other than the surgery and follow up? Do you know the type and stage of your lung NETs?
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1 ReactionThank you!!! 💗
No other treatment was suggested.
StageII, typical with LVI.
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1 ReactionI had surgery for the very same thing n 2022. Dr removed the obstruction & 1 lymph node & I went home after 4 days. Stayed cancer free until 2024. Best advice I can recommend is getting up & walking after surgery, helps you regain your strength. I also had diarrhea but monthly Octreotide injections helped immensely. Good luck to you!
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Helpful -
Hug
1 ReactionHi @blm1024
Welcome! Glad you’re in the other side of surgery.
I have typical lung carcinoids and DIPNECH. Very slow growing. Discovered in 2008. Too many to remove. Had largest 2.6 cm destroyed with ablation. CT scan surveillance all along. Still stage 1. Octreotide injections to control respiratory symptoms.
I talked to a lady from another NETs site who had a typical lung NETs tumor the size of a tennis ball removed along with one lobe at 70 years old. I last talked to her when she was 80. She just had CT scans for 10 years. No recurrence or metastasis. No breathing issues. Doing great.
Lung NETs is much less likely to spread than GI NETs. I hope you find this encouraging and you’re one and done. 😄
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Like -
Helpful -
Hug
6 Reactions