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

WHAT???? Ive never heard of anyone being cured without chemo radiation and I'm a nurse. Go get treatment before it’s too late. The treatment is not bad. I didn't think so the recovery was a bit more grueling. I’m sure when u tell your team u have No support they will set u up. Post on here I’m sure everyone will support u. U R IN CHARGE OF YOUR HEALTH AND U CAN DO THIS.

I had tongue cancer with 7 weeks of radiation and chemo ( cisplatin) simultaneously. I was tired a lot. I was lucky and did not get mouth sores or nausea. I used the baking soda rinse liberally. I did get a g tube and maintained my nutrition and hydration. The whole saga was not as bad as I had expected it to be. I was very worried going in. I stayed at home mostly so I wouldn't pick up a cold or flu.

@harleytiger
At two weeks I finally was able to taste chicken soup, and primarily the salt. In a month or two things should be improving a lot taste wise.
I know this whole cancer battle has just wrecked your year, your plans, your life for now. Give it time. Measure improvement week to week rather than day to day. Next year should be a whole lot better although likely you won't be 100% by then and maybe never will be again. We call that a new normal and we get used to it. You have cheated death and in the long run you will be stronger for it.
We all heal from this differently and at different rates, but we heal. You will heal. In the meantime we are here to help you along.

@harleytiger From what I have read and what I experienced the peak of pain/symptoms was about 2-3 weeks AFTER radiation treatment was over. Then the slow climb back to somewhat normal taste, swallowing, eating foods you like, etc. My guess was about 3 months I could get faint tastes and saliva production was getting better and not so thick. It was about a year before most all of my taste was back and Saliva pretty good. AND yes your taste buds are toasted. Thats what the radiation does unfortunately as it kills the cancer cells. I would think by Christmas you will be about to taste. It started with my tasting for a few bites and then fading through the meal. Try to be patience as It is a slow process.

@hrhwilliam At what point did the radiation effects get bad? My husband is facing 6 weeks of radiation and possibly 3 chemo sessions. Very scary.

@lizzyj58 I think at the end of week three I began to get sick to my stomach. Food had lost it's taste. I lost my appetite. A feeding tube was never mentioned nor did I know that was an option. Medicines however were offered up to deal with nausea, which is not common in all cases. Yet if there is a side effect I certainly will be the one to have it.
Very scary is appropriate. This journey is unlike anything your husband has ever experienced. It is not impossible but it is difficult. It is day to day and always in the knowledge that it will be finished and eventually life gets back to normal. For you and he this holiday season upcoming is more or less off the books. Make no plans or promises. The recovery from radiation is far slower than most people expect. It will be two steps forward and one step back, but it is progress. Tough times never last but tough people do. In many cases this is a life changing experience for the better, in reflection.
Please don't hesitate to ask away any concerns you or he might have in the coming weeks. You have a fantastic resource here of patients with specific experience in these treatments. I leave you with the immortal word of Churchill, "Courage".

@hrhwilliam Thank you for sharing your experience, it helps to hear how other people went through. Did you have pinpoint radiation or regular? Not sure which my husband will have as yet. I foolishly thought that as his Treatments will bo over early December, that christmas might be ok,now I know otherwise. We google all the time but it's much better to hear other people's experience. Thank you and I am so glad that your experience is behind you.

@lizzyj58 pinpoint aka proton radiation wasn’t widely available when I was treated. It is now within reach of most of the population in the US and when it comes to head and neck cancers, highly recommended to limit damage.
After the radiation therapy you can expect him to continue to go downhill for several days to perhaps a few weeks before the recovery starts. Add Chemo to that schedule if that is the recommendation and you can see this going into the next year a bit.
Ensure his oncologist has specific experience with head and neck radiation. It is vitally important. If the answer is less than yes, go elsewhere.
Proton or photon for your husband?

@deb26 I'm six months post treatment and still have no saliva however I'm told it will come back to some degree. My mouth is always VERY dry. For sleeping I place two Xylimelts in my mouth before I go to bed and they definitely help. I find so many of the over the counter remedies do little or nothing however I know these work because if I forget to take them I wake up within an hour or so and am quickly reminded. Give them a try.