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Hello again
I just read that yes, Proton tgerapy is commonly used for HPV-positive base-of-tongue cancers. It can cover the primary tumor and involved cervical nodes while reducing dose to salivary glands, oral cavity, spinal cord, and swallowing structures—often leading to fewer side effects (dry mouth, taste changes, swallowing problems) compared with some photon plans.
I’m going to have to ask the doctors at jhopkins if I would be a good candidate.
Would you mind telling me about the side effects you had from the proton therapy? Was there scarring involved? Anything really adverse?
Thanks!
Replies to "@jonesja @slmoore0626 Hello again I just read that yes, Proton tgerapy is commonly used for HPV-positive..."
@justwow I agree with Metsgirl comments. Very little adverse lasting effects. During treatment I lost all my taste, saliva production went down almost completely, Dry mouth, sores in throat, Very difficult to eat/swallow, Radiation burns to the neck. However, Two years out I am 95% back to normal. I have some slight scarring inside at my throat at base of tongue but It doesnt really effect me. No outside scars and My appearance hasn't changed other than I cannot grow bread where I was treated. You are going through a very scary time as you have alot of unknowns. Your outcome will be excellent but the 6 month journey will not be so pleasant. Hang in there as most everyone on here has been in your shoes and We are doing well! Good speed.
@justwow I am just over a month out from 5.5 weeks of proton and chemo for T2-N1-M0 HPV16+ SCC of the left tonsil.
Just getting my sense of taste back a bit now. That (and the throat pain) were the worst side effects. Eating was almost impossible. I narrowly dodged the PEG feeding tube after losing nearly 20 lbs.
As far as scarring goes, once radiation stopped I did develop a very painful radiation burn on my neck (expected). It was like a bad second degree sunburn (blistering from my jawline to my collar bone). That’s mosly healed now, but could leave some minor scarring. Too soon to tell.
All in all, it was a rough experience, but I have an exclamation prognosis (~90% cure rate). Very pleased I chose proton over photon and Mayo Rochester in particular.
Good luck!
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@justwow I am 8.5 weeks out from both chemotherapy and 7 weeks/35 treatments of proton therapy for stage 2 tonsil cancer with one lymph node affected on each side of my neck. Surgery was not recommended. lost most all my taste by week 3. I am just now regaining some taste. I still do not have much of any saliva. I experienced mouth sores and some associated pain. The radiation did cause the skin on the outside of my neck to burn and scab around the 5th week of treatment. I followed my team's skin care directions and it healed by the end of treatment and has been and still is perfectly normal in appearance. I do not believe that you should experience any scarring from proton treatments.