Thanks so much. They are definitely not doing chemotherapy. I think that will lessen side effects. Pretty sure they are doing 7 weeks or 35 treatments using very focused radiation. I already have a speech pathologist and an amazing oral surgery/dental team that made me a retainer to be able to swallow - but then they said I would be in such pain and agony from mouth sores, burns, pain, nausea, really thick mucous that all three of them said I would not be able to swallow anything for a few weeks a least. They also described the reasons why they believed that anti-inflamatories such as thalidomide, NSAIDS, or even steroids would be prohibited.That specific theory has never been proven or even supported with clinical research.
My taste buds are great. I just can not swallow NOW without this retainer. I had three teeth implants done last week.
I'm supposed to have four procedures done on the same day next week and I have said no until they can justify why that is necessary. I have severe sciatica and neurological damage so unless they put me out cold 2 hours is an hour too long for anything. Every time I can them they say a nurse or doctor will get back to you but they never do. So I just keep sending messages to staff I've already seen and the nurse or doctor's scheduler will just ask if I need to reschedule. Answers would be nice!
They estimate 6 hours lying still just for the simulation. Then a PET scan. Then an MRI. Then molding a mask and beam testing? Is that even humanly possible?
A thirty year old buddy of my also had an HPV16 marker positive SCC cancer in his mouth. That's usually a good thing but the number of young guys of whatever sexual identity/orientation are my new friends is staggering. Anyway, they stopped him five weeks in. Like me and all their patients, they will not put in a tube for food beforehand. He had a heart attack, evidentlly something that happens more often than we know in radiation therapy.
Imagine if they all had gotten their HPV vaccinations. There is a new one out I just finished and supposedly it does help. The number of girls with HPV related diseases has really decreased and I forced my sons all to get 3, not 2 shots.
Anyway thanks alfredo for the info. This is pretty scary stuff. It's really generous of you to share your experiences. Thanks for the tips!
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