Pheochromocytoma & Paraganglioma

Hi, My name is Tabatha and my husband was diagnosed with paraganglioma over 6years ago. He is out of treatment options as of now and we’re in hopes that maybe the Mayo Clinic can help. He doesn’t want anymore chemo/poison treatments. Can you please help?

I hope that you can find some answers at Mayo! I had a great care team there that removed my para December 2016.

Was yours metastasized when you were diagnosed?

No, I am one of the lucky ones that has no signs of mestasis. Mine was removed and they don’t expect any more issues. I know others that have had lots more issues than me, but have still had good routcomes. Are you on Facebook? There is a great group for Paraganglioma and Pheochromocytoma. Lots of good info and support there.

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.

Hi @jls77 and @sharik, welcome to Connect. You’ll notice that I moved this discussion to the Neuroendocrine Tumors (NETs) group on Connect, so you can meet and share with others living with NETs.

Hello @jls77

I am Teresa, a volunteer mentor with Connect and I have had three Neuroendocrine tumors. I see that you have posted regarding your husband’s diagnosis with paraganglioma.

Have you been able to get any other opinions on his NET situation? How is he feeling?

Teresa

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.

@jls77

I understand – that would be quite a distance to travel. How is he feeling?

Teresa

Hello @jls77

It has been a while since you have posted and I was thinking about you. How is your husband doing? I know you were looking for a second opinion.

I would appreciate hearing from you and any updates regarding your husband.

Teresa