HPV Tonsil cancer: I'm very nervous about chemo and radiation

@justwow My Proton treatment delivery was set up to first hit the tumor bed site and then it moved to my Right neck lymph node site and then it moved to the left side of neck( opposite side) to treat just in case I had any cancer on that side that was not detected.

@kamrin I had one lymph node affected on each side. So bilateral radiation was a definite for me. I'm not sure about the worst side effect. I felt exhausted and generally unwell after the third week. I think that was likely the combination of the two treatments. My mucositis was mild to moderate, but my pain was tolerable. I did not use opiates. I drank very high calorie boost throughout and did not have a feeding tube. The worst effects of the radiation came the 2 weeks after treatment ended. That was my worst pain. But it passed quickly after that.

@justwow Sounds very thorough. Wish you the best of luck regardless of the methodology. It’s not easy but you’ll get through it!

@lizzyj58
Hi again -
Is your husband a former smoker or smoker by any chance?

@justwow Yes,he stopped smoking the day after we saw surgeon,back in Oct of last year. His tonsil cancer is HPV positive, this type seems to respond well to treatments. So far so good.

@metsgirl I am trying different ways to drink the boost. Ive tried different flavors. I just cant stand that stuff, any suggestions?

@kamrin
Nothing tastes good right ? Including Boost.
I know, its not enjoyable eating most everything now,
I am mashing or blending most everything because one side of my mouth is sore
and some swallowing issues starting already as well.
Ice cream feels good after a meal.
The cold seems to ease the pain.
Made a smoothie today. Milk ,yogurt, ice cream and pistachios, was pretty good. Maybe could
mix a boost with something like that.

@kamrin I definitely did not enjoy drinking it either. The worse I felt during treatment the less I thought about it. I would pour half of it in a glass, plop a straw in and try to gulp down as much as I could as fast as I could...then the other half. If it seemed too thick on certain days, then I would mix it with either whole milk or a scoop of ice cream. Both of those helped mute the crummy taste. But I tried to get it down as quickly as possible and then follow with a salt/baking soda rinse.

@kamrin Mixing the boost with milk or melting ice cream thins out the consistency in addition to altering the taste. Still kinda crummy though.

Is there a Memorial Sloan Kettering nearby, they have clinical trials as do other hospitals. My husband had the same as you, tonsil hpv+ ,his had also spread to adjacent neck lymph node. At MSK they put him in their clinical trial, first he had tonsil removed, the instead of 6/7 weeks radiation he had 3 and instead of 3 chemo,cisplatin, infusions he had 2. We found that the doctors there really care about quality of life. His last day was Dec 31st Dec. His last 2 days had both radiation and chemo, they were rough. Now he will have CT scan end of Feb. Then we go from there. It seems that both of these treatments combined have a 90% success rate. Life is precious, think carefully about your next step. Be well!