Advanced metastatic paraganglioma diagnosis

Hello @gsm13161 and welcome to Mayo Connect,

The following discussion thread will introduce you to others with this diagnosis,
--Pheochromocytoma-Paraganglioma
https://connect.mayoclinic.org/discussion/pheochromocytoma-paraganglioma/
How long ago were you diagnosed? What type of treatments have you had so far?

A 10 cm tumor was incidentally discovered on CT Scan in the fall of 2016. Was referred to City of Hope surgical oncologist and he performed tumor resection along with right nephrectomy and adrenalectomy. Did OK for awhile but Pet CT in 2018 showed multiple new lesions in liver, spine and lymph nodes. Had thoracic spine surgery end of 2018 and robotic liver resection in spring of 2019. Also was initiated on Sandostatin injection as well as Zometa at about the same time. Since then have had numerous rounds of radiation, cyber knife to treat various bone matastasis. This year 9/6/22 had second liver resection by same dr.. He said the debunking would help bring the hormones down. It did help some although everything ( dopamine, norepinephrine, etc.) remain elevated, chromogranin A still up near 1000 last test. The oncologist I see is considering adding Temozolimide if I continue to show progression on future Pet scans. BTW I have mutation in sdha they discovered back early in 2019. They also changed Zometa to Xgeva earlier this year due to increase in bone matastasis.

@gsm13161

It sounds like your problem is complex. You do not mention having pain, but given the bone metastasis, I'm wondering what kind of pain you might be having.

Do you have much pain and is it being controlled?

I don’t have any pain issues at this point. Hopefully the radiation treatments and the Xgeva will control the bone matastisis.