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I also have Nets on my Pancreas and only receiving Octreotide injections every two weeks for treatment. May I ask you what meds you take for yours? I just returned from the Mayo Clinic in Jacksonville, Florida and they want to do an endoscopy with ultrasound and inject Ethanol into the tumor area to kill the tumor cells. This can also give me Pancreatitis, which scares me. My doctors here know absolutely nothing about this disease, which is also quite frightening for me. I appreciate anything you can share. Up until three and a half months ago, I was able to go to the gym three days a week. Now I barely have the strength to walk through the house!
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@kbtexan Hi. I didn't know if your question was for me, so sorry for the delay in responding if it was. I was on capecitabine and temozolomide, captem, for 13 cycles which took about a year. I now have been taking just capecitabine for a little over two years which has kept everything pretty stable. Where is here? When was the tumor discover? Did it spread anywhere?
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@kbtexan Im sorry you feel frustrated. I was told when I left Mayo Rochester 8 years ago, after surgery, I would have PTSD. No truer words…
NETS was misunderstood for many years. There remains a lot to discover.
Mayo Jacksonville has a great staff and excellent resources in the international NETS experts at Mayo Rochester, Dr. Halfdanarson snd Dr Hobday. Hang in there and continue to ask questions. Search NERF online for resources. Good luck.