Your tips for recovery after 35 radiation treatments for tonsil cancer

@cskippy Exercises and stretching help. But my Mayo surgeon prescribed massage by an OT. That was wonderful. She did myofascial massage to loosen up the fibrosis as well as scar massage. It worked very well to restore a lot of flexibility.

I am now 1 year past my radiation treatments. The oncologist and ENT are thrilled with my recovery. They are moving my throat scopes to every 2 months. I still have not regained all my taste. I do not have the taste I had before treatment. I would gauge my taste at 70-80 percent normal but sweets are still an issue and I am not fully savoring all foods. My extensive research tells me it will still be 1.5 to 2 years if at all to gain normal taste. I have talked this over with my oncologist and he said this was pretty much true. I feel so lied to about this which I have expressed I was told that I may experience loss of taste nothing was said to the degree I have experienced. I can eat and swallow but really miss true flavor from all foods and I fear that things will NEVER be normal again. I have been told improvement should continue but difficult to believe after all I have experienced. Has anyone ever regained their original taste and if so how long did it really take?

I am now 1 year past my radiation treatments. The oncologist and ENT are thrilled with my recovery. They are moving my throat scopes to every 2 months. I still have not regained all my taste. I do not have the taste I had before treatment. I would gauge my taste at 70-80 percent normal but sweets are still an issue and I am not fully savoring all foods. My extensive research tells me it will still be 1.5 to 2 years if at all to gain normal taste. I have talked this over with my oncologist and he said this was pretty much true. I feel so lied to about this which I have expressed I was told that I may experience loss of taste nothing was said to the degree I have experienced. I can eat and swallow but really miss true flavor from all foods and I fear that things will NEVER be normal again. I have been told improvement should continue but difficult to believe after all I have experienced. Has anyone ever regained their original taste and if so how long did it really take?

I am now 1 year past my radiation treatments. The oncologist and ENT are thrilled with my recovery. They are moving my throat scopes to every 2 months. I still have not regained all my taste. I do not have the taste I had before treatment. I would gauge my taste at 70-80 percent normal but sweets are still an issue and I am not fully savoring all foods. My extensive research tells me it will still be 1.5 to 2 years if at all to gain normal taste. I have talked this over with my oncologist and he said this was pretty much true. I feel so lied to about this which I have expressed I was told that I may experience loss of taste nothing was said to the degree I have experienced. I can eat and swallow but really miss true flavor from all foods and I fear that things will NEVER be normal again. I have been told improvement should continue but difficult to believe after all I have experienced. Has anyone ever regained their original taste and if so how long did it really take?

I am now 1 year past my radiation treatments. The oncologist and ENT are thrilled with my recovery. They are moving my throat scopes to every 2 months. I still have not regained all my taste. I do not have the taste I had before treatment. I would gauge my taste at 70-80 percent normal but sweets are still an issue and I am not fully savoring all foods. My extensive research tells me it will still be 1.5 to 2 years if at all to gain normal taste. I have talked this over with my oncologist and he said this was pretty much true. I feel so lied to about this which I have expressed I was told that I may experience loss of taste nothing was said to the degree I have experienced. I can eat and swallow but really miss true flavor from all foods and I fear that things will NEVER be normal again. I have been told improvement should continue but difficult to believe after all I have experienced. Has anyone ever regained their original taste and if so how long did it really take?

@dragonfire Pretty much where I am. Radiation stopped mid-October last year. I'm alive but not normal

@dragonfire I think you are beginning to get comfortable with your new normal. I agree, taste is never quite the same. But you might now find certain foods not so bad as you once thought, although I don’t think kale is one of those yet.
We probably should count our blessings. Others have it so much worse.
As far as eating a proper diet, etc., the heck with that. Eat what you enjoy. You’ve been given a second chance at life. That’s my two cents. Happy to hear you are doing well.

@dragonfire I' don't think there are "normal recoveries" from the effects of radiation and chemo for treating tonsil cancer. And unfortunately more recent studies have indicated that it takes far less radiation and chemo to treat it.

I'm almost 2 1/2 years beyond my treatment and am still cancer-free. I was supposed to have 35 radiation and 7 chemo sessions. I had to stop chemo after 3 because of blood issues. I voluntarily stopped radiation at 29 because of excessive mucus and congestion that prevented me from sleeping for 2 weeks. Fortunately that treatment was enough.

Everyone seems to respond differently. For me taste has never recovered. They told me it might take a year. My saliva production has not recovered either. I've tried acupuncture but had no improvement. I've assumed now that what I have is my new normal but most importantly the cancer has not returned!

@dragonfire as a chocoholic, I was surprised at how bad chocolate tasted when I lost the ability to taste sugar. That lasted for about a year, and recovery took a while. 20 years later, I enjoy most foods, but I would say that everything is a bit less sweet tasting. Unfortunately, I tend to eat more sweets to get my fix. Good luck!