Apologies! I’m new to forums and didn’t know that replies had come in.

It’s a long story, so I’ll try to summarize. Nothing much addressed the pain, so at an appointment with the oncologist I said firmly that they had to figure out what was going on and address the pain. It was debilitating. She called us and said she thought it might be temporal arteritis and sent him to a specialist. Specialist was doubtful but said the only way to know was with a biopsy.

The anesthesiologist couldn’t place a tube because of stenosis from radiation, so used an oxygen mask which led to an oxygen fire, second degree burns on his face and 3 days in icu. But no biopsy.

Eventually, he had a follow up bx of the tongue tumor and they found necrosis of the hyoid bone and lots of infection. Barometric oxygen treatments and antibiotics cleared it up. And the pain got better. He was also put on nortriptyline for what they called nerve pain, so perhaps that helped as well.

Jane


Spouse diagnosed with stage 4 HPV mediated SCC
in BOT & 2 lymph nodes in neck 10/18
Radiation & chemo completed 12/18
Metastasis to lung - radiation 6/20
Mediastinal mass 2/21