Your tips for recovery after 35 radiation treatments for tonsil cancer

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. And yes eating was a CHORE.. My guess it was about 2 months before I could get faint tastes ( which faded as I ate) and saliva production was getting better and not so thick. It was about a year before most all of my taste was back to 95% 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 within 2-3 months of final radiation treatment you would be at 40% normal. 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. Of course everyone is different and depends on the radiation dose and areas treated.

@dragonfire just an anecdote here - my taste also disappeared but eventually came back. Shortly after my treatment a friend of mine came to visit and brought some expensive chocolates. When I took the first bite it was totally shocking - absolutely no sweet taste instead just the bitter chocolate, like taking a tsp. of powdered chocolate. Now the only thing I notice (20+ years later ) is having lost the ability to differentiate red wines and most hot pepper sauces are equally hot.

@lizzyj58

15 weeks post radiation and taste still very limited. PET scan is today will know results in 2 weeks. This is still a difficult slow journey I never dreaming of experiencing. I miss my taste so very much can taste some things but many things no taste yet. I keep reading it will take 4 to 6 months to see noticeable improvement do not know how accurate that is. How is your husband doing with treatments hope things are going well.

@omaest I read somewhere that saliva can renew every 10 days? I suppose the consolation is that treatments are over and hopefully cancer is as well.

@robpara,

Please let me know if you do actually get the pump from Tactile Medical insurance approved.

Thanks,
Rob

@roblem I just wanted to let you know that not much has happened since this post. I have contacted Tactile several times over the last 2 months. Each time, crickets. It only leaves me guessing that either they are short on supplies or there is something in my case that is holding it up.

This is strange because at the time of my demonstration back in late Oct, they said the equipment would arrive shortly. Then came requests for a follow up appointment with the PT at Mayo. Which I did, and it wasn’t free. Both the Dr and PT person (2 separate appointments no less) said the same thing they did back in June. I felt like those appointments didn’t add any value.

Tactile asked me to forward the information from those appointments. I did. And nothing since.

It’s possible that since my insurance starts over on Nov 1 in terms of deductible, that my coverage was not so good because Tactile dragged the process out from Oct. but the least they could do is tell me.

One last possibility is that my lymphedema, or the lack of a serious issue, makes me unqualified.

So I continue to do the self massage daily and wear the compression mask at night.

Hi @robpara

Interesting. Appreciate the update. They (Tactile) denied me initially, it took months and then I appealed another two times and was denied again but a lot faster.

@roblem I guess my advice to others is get an honest estimate of all the upfront costs, not just the equipment but the qualifying appointments along with the likelihood of getting approved before moving ahead.

I probably spent a $1-2,000 on unnecessary appointments. The PT person seemed surprised that I came back in for a follow up appointment.

And here I sit without anything. I don’t feel good about how that went down. I hope others have a better experience.

@dragonfire At least you can taste some foods. I'm sure it's very frustrating for you but it will get better. Think about how you felt last week, this week is probably a little better. It's like baby steps to get back to normal, but you will get there. Let us know how your dr visit goes and your pet scan results.

@lizzyj58

I wanted to follow up since it has been some time. I had my PET scan results and it was good news the test was clear the oncologist said it looked great. The physical exam did not show any signs either. This is great news however my taste is so very slow to return after 18 weeks now. I see my ENT next week but don't see the oncologist for 2.5 months.