Living with Neuroendocrine NETS, any advice?

Posted by gg66 @gg66, Dec 13, 2024

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience

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

Thanks, I’ll post again when I have more time.

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Thanks so much, I’ll post again when I have more time, Merry Christmas.

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@catalinaharley752

Living with NET with symptoms of flushing,diarrhea, tremors and profuse sweats. Had radiation chemotherapy and now on chemotherapy of another type. The injections every 28 days of Sandostatin are helping the tremors and sweating, the diarrhea not so much, but now I’m experiencing swelling of the ankles and feet. My ankles are always sore and I see this listed in the symptoms of NET . Anyone else have this symptom?.

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Yes, I had the swollen feet and joints before I started Lanreotide shots every month. I also changed my diet. I think changing my diet made the biggest difference since my liver and digestive system is compromised.

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@stevestenberg31

Yes, I had the swollen feet and joints before I started Lanreotide shots every month. I also changed my diet. I think changing my diet made the biggest difference since my liver and digestive system is compromised.

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What changes have you made to your diet?

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Has any one else also been told they have fatty liver and would loosing weight in general hoping from the liver also make any difference with NET? Seems the belly is the last to notice getting smaller.

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@amygirl

Has any one else also been told they have fatty liver and would loosing weight in general hoping from the liver also make any difference with NET? Seems the belly is the last to notice getting smaller.

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Yes, I’ve lost 35 pounds in the last three years but the belly is the last to shrink. Arms and legs are a lot smaller.

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@amygirl

Has any one else also been told they have fatty liver and would loosing weight in general hoping from the liver also make any difference with NET? Seems the belly is the last to notice getting smaller.

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Hello @amygirl,

The question about fatty liver and NETs is something that your doctor could best answer. On Mayo Clinic's website there is some information about Nonalcoholic Fatty Liver Disease, Here is the link to that information,
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
On Mayo Connect, we have several members who have discussed fatty liver. Here is a link to those discussions,
--Has anyone reversed fatty liver?
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
Has your doctor given you any information on healthy eating habits for fatty liver disease?

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@hopeful33250

Hello @amygirl,

The question about fatty liver and NETs is something that your doctor could best answer. On Mayo Clinic's website there is some information about Nonalcoholic Fatty Liver Disease, Here is the link to that information,
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
On Mayo Connect, we have several members who have discussed fatty liver. Here is a link to those discussions,
--Has anyone reversed fatty liver?
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
Has your doctor given you any information on healthy eating habits for fatty liver disease?

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My question is really to get others opinions on this site that are experiencing the same. Thank you for the link.

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@amygirl

My question is really to get others opinions on this site that are experiencing the same. Thank you for the link.

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I understand, @amygirl, however, Connect members are not medical professionals, but patients like yourself. The question you are asking about the correlation between NETs in the liver and fatty liver disease is something that your doctor could answer better.

In very general terms, I do not recall seeing any posts from NET members with liver NETs who also have fatty liver disease, however, feel free to search the Connect website to see what you can find. You can search by going to the top of any page on Connect where you see the "Search" bar. There you can type in the information you are looking for. If you find anyone discussing this correlation, you can post to them and make comments or ask questions.

Does that help?

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@catalinaharley752

What changes have you made to your diet?

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Cut out red meat, alcohol and foods high in amines mostly. I also cut out soda and fast food. I try to eat mostly whole foods. I find daily consumption of blueberries and yogurt has helped with my digestion too.

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