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Does anyone have paraganglioma tumors?

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Hello @jls77

I appreciate your posting about this rare type of NET, paraganglioma tumor.

I did a little research about this rare neuroendocine tumor (NET) and found this information on the Mayo Clinic website, https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970

I found one member, @jimdc, who posted in 2011, about his type of tumor.

You post that your husband’s tumor was diagnosed over 6 years ago. If you are comfortable sharing more about this, it would be helpful to know where his paraganglioma tumor was found and what type of treatment he has had. You mentioned chemotherapy, and I was wondering if he has had surgery as well? Also, is he being seen by an NET specialist or a general oncologist? Are your husband’s symptoms under control?

Another opinion from Mayo Clinic might be very helpful. There are 3 Mayo locations, Minnesota, Florida and Arizona. Here is information on appointments at one of these clinics:

Appointments by Phone
Calls may be monitored or recorded for quality purposes.

Mayo Clinic in Arizona
877-701-1691 (toll-free)
8 a.m. to 5 p.m. Mountain standard time, Monday through Friday
Mayo Clinic in Florida
8 a.m. to 5 p.m. Eastern time, Monday through Friday
Mayo Clinic in Minnesota
7 a.m. to 6 p.m. Central time, Monday through Friday

Tabitha, we look forward to getting to know you and supporting you and your husband at this time. Will you please post again and let us know how you and your husband are doing?


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.

Me. I had one in the base of my skull and was removed last December in Mayo Clinic in Jax by Dr Philip Pirgousis

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