Hi Claw, welcome to this site and best wishes for you and your husband. I too have SCC
HPV+. I was not aware of the importance of
HPV until I learned it is the most curable of head and neck cancers. If one has to get cancer, getting the type which is MOST curable is a good thing.
True, most Rad and Chemo docs know little about the
HPV effect (my words) because it is new. The drug companies do all the research and they have just not begun to sink enough time/money into the cures.
My ENT who first diagnosed my cancer, ordered the radial tonsillectomy, removing both tonsils.
Then I went to a cancer center (Walter Read National Military Medical Center at Bethesda) where the ENT said he might not have removed tonsils and would have treated with Radiation and Chemo which they have seen great results and cured those with SCCHN. Cure. This was before we knew I was
HPV+. I then kept checking the other lab results and a couple weeks later found out I was
HPV+ (yippee!!).
I received a standard protocol for Oropharyngeal squamous cell carcinomas (OSCC). 35 radiation treatments of IMRT and 3 rounds of cisplatin (Chemo).
They said a number of things would happen. Yes, I would lose my taste (it came at 10 days after first rad/chemo).
Lots of ringing in the ears. It comes and goes after chemo. Starts at day 4 after chemo, lasts a couple weeks. My hearing tests showed loss at the high end in the inaudible range, so not real loss.
Significant reduction in saliva production on the side (aim point) of radiation.
Accumulation of radiation effects. After about three weeks, I began to have a great deal of pain in the throat, which continuously increased.
I completed my radiation a week ago and now I am in the home stretch to recover and get well.
My doctors advised it may be up to 9 months before taste returns.
I pray my pain will be reduced so I can put food in my mouth and water down my throat. I'm wondering myself when the pain in the throat will be reduced to the extent I can eat/drink. If anyone else has personal experience I would be interested to know.
Claw, I hope you and your husband get through this with as little pain, anxiety, trouble as possible. I will pray for you.
Sincerely,
Ken
