Your tips for recovery after 35 radiation treatments for tonsil cancer

@dragonfire Great news that your cancer is gone! I'm sure it's very frustrating not having taste buds come back yet, have you tried all types of salty and/ or savory? How about hot and spicy? Ice cream? My husband's taste buds are almost gone too but for some reason he can taste jello. Sincerely hope your pet scan comes back totally clear. Keep us updated.

@lizzyj58

I can taste baloney, pickles, mustard the best. My next step will be back to hot and spicy I cannot describe how much I miss tacos. I have tried a couple to hot sauces could feel the heat but only so much taste. I grilled burgers and they had more taste but everything still lacking. My tongue swelling is still there so eating takes me awhile. I was told years ago aging in not fun and they were right. When I was going through treatments I could taste jello don't know why. I hope things go well for your husband this is nothing but a living nightmare for anyone going through this. I am the family cook and not being able to taste is frustrating.

@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.

I completely understand the frustration everyone is going through. They didn't give me any warning of the difficulties I would face with eating, or the pain. I'm 20 years out and I can say it gets better with time, but going through it isn't easy. A nurse put it to me bluntly, "You didn't need to worry about that, you just had to decide whether you wanted to live or die." I've come to appreciate that sentiment when I find myself getting down about my situation, and now that my sister has gone through throat cancer twice and isn't expected to make. Despite the treatments being brutal, they allow us to survive, which in my book is a blessing. Take care.

@56tburd

That was exactly my choice either take the treatment or die. I just think before people go through this the doctors being graphic of what will happen not the sugar coat you might experience this. That explanation does not come close to the real nightmare of radiation. The lost of taste for whatever the duration is very disappointing.

@dragonfire You are so right. I am very thankful for my doctors and their honesty. I remember one saying something to the effect, "If you live long enough" ... and then added the possibilities.
At my 12 year check up, he said we really didn't expect to be seeing you this long. Well, it's been over 20 years and I'm still going - although no longer eating anything orally. I still cook and bake and enjoy doing so. Hardly miss eating because I know if I do what the ramifications would be (aspirationn pneumonia!) But, to be honest that Christmas baking and all the holiday foods did make me feel a bit sorry for myself.

@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.

@dragonfire Same situation here,he finished his treatments Dec 31st. Some days he can taste savory for a little while then next day can only taste sweet. He gets breakthrough taste that lasts about 30 mins then nothing. Just like you, very frustrating. For some reason he can taste BBQ sauce! Dr said it takes time but not much consolation in that. He had 15 radiation treatments and 2 chemo sessions. I can't imagine how you must feel after all your treatments. I sincerely hope you get good news woth your pet scan results. Can you taste coffee? How about ice cream? Dr said to look on eating as a chore,that's exactly what my husband is doing. Not easy at all but at least treatments are over.

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.