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Feb 12, 2018 · Pheochromocytoma & Paraganglioma in Neuroendocrine Tumors (NETs)

No he hasnt and the Mayo clinic wanted him to make an appt with a dr. first. Well thats not happening since we live in NJ.

Jan 19, 2018 · CGA (Chromogranin) results from different labs in Neuroendocrine Tumors (NETs)

My husband said getting that test done at different labs can throw off the results. It’s just the way the different labs and their systems run it. I hope that makes sense. My husband had it done at U-Penn and it was 23,000 and then again a month later at a different lab in NJ and it was 13,000. That’s what his oncologist told him, he also said that they want him to get the blood work done at their lab all the time so it’s ran the same way. I hope this helps you understand. If your still concerned ask her dr to explain it to you.

Jan 19, 2018 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

When he was diagnosed it was already metastasized throughout his whole body. That same year they did a treatment called MIBG, which is liquid radiation injected into body and it travels to attack all the tumors. He was good until Oct. of 2016 when the cancer became active again. It took a long time for them to come up with a treatment and in the mean time it landed my husband in the hospital 2 different times. The tumors in his liver are the ones that grew enough to stretch the lining of the liver to cause unbearable pain. They tried a drug called sutent for a few months, then went to chemo. He was on 3 different drugs to start. It was suppose to be 2 days together every 3 weeks. He never made it to the 2 treatment day because he was so sick, and by the second treatment they had cut it down 30% and only 2 of the drugs. It made him extremely ill, for days in bed. so he did that for 5 treatments and then said he had, had enough. He wants to know if Mayo offers treatments that are not chemo. Any Dr.’s names that deal with this disease would be appreciated.
His symptoms are kinda under control, he takes pain meds every day just to be able to function. He currently sees an oncologist at U-Penn that deals with this particular cancer.

Jan 19, 2018 · Paraganglioma in Neuroendocrine Tumors (NETs)

When my husband Joe was diagnosed it was already metastasized throughout his body. That first year they did a treatment called MIBG, it’s liquid radiation that’s injected and travels to attack all the tumors. He was good until Oct. 2016 and the cancer became active again. It took forever, literally months for them to come up with something to do which in the mean time landed him in the hospital 2x’s in 2 month spand. The tumors in his liver were the ones that grew a little that were stretching the lining of the liver causing unbearable pain. They started him on a drug called sutent. Took that for a few months, then they changed to intervenors chemo. I honestly forget the names of them. It was suppose to be 3 different drugs 2 days, every three weeks. Well that mad him so sick he never did the second day, cut back 30% of all the drugs and after the second treatment they stopped one of the drugs. He go t 5 treatments, and here we are. He doesn’t want anymore poison treatments. We want to know what other treatments they offer before flying down there. A dr.’s name that deals with this disease would be great. I would like to send down his records for review before flying down. Does anyone know if they do that?

Jan 19, 2018 · Pheochromocytoma & Paraganglioma in Neuroendocrine Tumors (NETs)

Oh great for you. That’s awesome. Can you tell me who your dr is? I live in NJ and we don’t want to go that far with out any more insight of treatments. My husband is beyond surgery, his was already metastasized when he was diagnosed.

Jan 19, 2018 · Pheochromocytoma & Paraganglioma in Neuroendocrine Tumors (NETs)

Was yours metastasized when you were diagnosed?

Jan 19, 2018 · Paraganglioma in Neuroendocrine Tumors (NETs)

Anyone have paraganglioma?