My dad was dx with SCC, HPV+ of tonsil in 2019, had modified neck dissection, TORS of both tonsils with wide margin on right affected tonsil. He was T1N1 with only pos. node on neck dx. Radiation to area, PET 3 months later showed mets to lung. Had Keytruda/Cabozantanib clinical trial where growth stopped to lung mets, stable for 2 years. Stopped tx and rescanned, showing growth to lung, right hip. Hip radiated recently, started back on Cabo/taxol, has had one dose. Several days after first dose, had seizure at home, scans reveal mets to brain. Will cont. current tx. Question is, is this it? Should we seek another opinion? Has anyone had this prognosis and ended up living years? If we need another opinion, where should we start? Thanks so much
Hi CarrieSpen
So sad to read about your dad. I can never understand why there is this two year moratorium on immunotherapy
If we need another opinion, where should we start?
I would start at The Royal Marsden
WE had a member here who had to deal with brain mets for which he actually had awake surgery.
He didn't respond, sadly, and passed away.
I know of one person who has been on immunotherapy for four years. I don't know how he has managed to swing continuation past two years but he did. Maybe you could ask?
On balance it seems like all you can do is make the most of the time you have together (sorry that always reads like a completely inadequate phrase)
Hugs
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
