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Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: 11 hours ago | Replies (63)Comment receiving replies
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?.
Replies to "Living with NET with symptoms of flushing,diarrhea, tremors and profuse sweats. Had radiation chemotherapy and now..."
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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Hello @catalinaharley752 and welcome. I'm glad that you found this forum where you can share your experience with NETs with others. When I first found Mayo Connect, I was facing my third surgery for NETs in the upper digestive tract and felt very encouraged and more hopeful after reading the posts of others who had faced this same issue.
As you have just begun posting on Connect, I'm looking forward to learning more about your issues with NETs. For example, how long ago were NETs diagnosed, where were they located, and have you had any surgeries?
As I learn more about your experiences, I can connect you with others with similar experiences.
I look forward to hearing from you again.