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Anyone with lung neuroendocrine tumor experienced significant weight?
Neuroendocrine Tumors (NETs) | Last Active: Jun 8 11:18am | Replies (19)Comment receiving replies
@tomrennie I have been seeing my gastroenterologist and had endoscopy, colonoscopy, abdominal CT, MRCP, ERCP and HIDA scan, all negative. I attempted a DOTATATE scan but had allergic reaction to the nuclear dye and did not complete the test.
I do believe I have cachexia. I do not have any fever but I have the rest of the symptoms. I have lost 10% of my body weight the past 6 months.
I am in the process of scheduling an appointment with Dr. Wolin at Mount Sinai.
He is a NET specialist doctor.
What was your experience with the weight loss? Have you been able to regain any of it? I have been meeting with a nutritionist who had many recommendations however I continue to lose weight due to the nausea and no appetite. Food just does not appeal to me.
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@pantfan I lost over 100 pounds prior to diagnosis and during the first few months of treatment. I know that I lost more, but I was afraid to get on the scale for a long time. Unfortunately, the dotatate scan is what my oncologist uses to monitor my cancer. I wonder what @californiazebra uses for her monitoring? I recall her saying that her body doesn't show the contrast. I know that you have had a lot of tests and scans, but not wanting food and the associated weight loss is a concern. A person can't live like that long term. Even the smell of food made me nauseated. Ever have that happen? I primarily survived on fruit protein smoothies. My PNET was over 8cm. I also had innumerable liver lesions with the largest over 8cm. They also blocked veins, so my body wasn't digesting food properly. It took a few months of chemo to shrink everything to allow my body to absorb nutrients again. Once that happened, my appetite returned with weight gain.