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Public Support Group 373 total results
Discussions (50)
Lanrotide & PRRT: Blood sugar and gluten
My 29 son has a grade 3 PNET and Liver METS. He receives monthly Lanrotide which causes wild blood sugar highs and rapid lows. He...
Has anyone chosen the Watch and Wait and regretted that choice?
I am new to this group and thankful for the insight offered by those who post their experiences. I am a 68 year old man...
Is there a link between Autoimmune & Neuroendocrine conditions?
Hi. Age 51. Diagnosed with Scleroderma, Lupus and Raynaud’s 20 yrs ago. Had a Bronchial Carcinoid removed in ‘07. A routine Gallo scan in ‘19...
Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver
Hi everyone. I am new to the group and wondered what kinds of symptoms others with Pnet go through. I was diagnosed just under a...
PNETs: What comes first? Surgery or try to shrink tumor with chemo?
Pancreatic nets on the tail moved to liver. It might be nonfuntional as it was found by accident and was shocking is an understatement.Do the...
Pancreatic NF-NET stable since 2005 - surgery or not?
Hello the NET community, I am a 63 yr old male with generally good health and BMI. About a year and half ago I had...
Y90 AND Captem Combo
Pnets KI67 25%. My husband had 3 captems cycles. The last cycle had toxicity and became sick. Anyone experience Y90 procedure for Pnets mets to...
What helps with muscle aches and weakness after Lanreotide injections?
I've had only 3 Lanreotide injections for my PNETS and I'm experiencing muscle pain/weakness. Has anyone else experienced this side effect and was there a...
Anyone have experience with Acites?
I have been diagnosed with PNets grade 2 that metastasized to liver. The past few months I have been dealing with acites. Currently doctor is...
Anyone have experience with "functioning" Pancreatic NETs?
I was recently diagnosed with PNETS saw an oncologist and had a second opinion through University of Kansas. Through that session I learned my tumors...
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