Your tips for recovery after 35 radiation treatments for tonsil cancer

Posted by dragonfire @dragonfire, Oct 18 12:06pm

Just completed 35 radiation treatments for HPV positive tonsil cancer at stage 1. I am frustrated with the pain, dry throat, medications and the duration of all this. My last treatment was last Thursday I met with my doctor yesterday to learn I have weeks possibly before I can eat in a normal manner which was difficult to accept. I have been told to focus on the positives which right now is difficult for me to do. If I had really known all that would happen I would have never agreed to the treatment. I can only manage cream soup, scrambled egg, jello for foods during this what I term a living hell.

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William Olsen, Volunteer Mentor | @hrhwilliam | Nov 28 10:49am

I think Christmas dinner might go a bit easier for you. At least let's hope so. Lot's of butter on the bread if you can do bread. Gravy of course. For the first year or so we don't worry about what we eat so much as what can we eat and how do we get calories and protein.
Slow steps and time. It does get better. It likely will never get to the way it was but new is good too.
My first couple of years were challenging, particularly because I often traveled overseas. When I would request water or liquid to go with a meal and not get it right away, my food went cold simply because I could not eat without sipping water.
Now, years later, I'm still here and doing fine. You will be fine too in the long run. I was impatient like you, but no longer. No choice in that. Good to hear you are on the mend.

pfitziern | @pfitziern | Nov 28 11:20am

In reply to @zenren14 "I was not a fan of gravy before c-journey. Mama would make it from scratch. I..." + (show)

@zenren14 Isn’t it amazing how God works. Your healing through his grace with your mother’s comfort. That is a heck of a Thanksgiving.

dragonfire | @dragonfire | 6 days ago

In reply to @lizzyj58 "@dragonfire Maybe try to focus on the fact that your treatments are over and each week,..." + (show)

@lizzyj58

The Thanksgiving dinner was well enjoyed by the family except me I could taste very little very disappointing after all the work. I have tried lasagna, Asian, beef stew and can taste very little. Eating has become a needed chore without enjoyment. My unhappiness and frustration will be a major part of my discussion with my oncologist on Monday. I really hoped after almost 8 weeks I could taste and eat better which is not the case. I regret everyday that I put my body through this and to know this was my only choice other than the other side of the grass. Here is it 2025 and this barbaric treatment is all we have. I have a complete write up containing my symptoms, feelings, goals, expectations and life plans to discuss during my oncologist visit.

lizzyj58 | @lizzyj58 | 6 days ago

In reply to @dragonfire "@lizzyj58 The Thanksgiving dinner was well enjoyed by the family except me I could taste very..." + (show)

@dragonfire I sincerely hope your dr can give you some advice and help with what you are experiencing. I'm sure it's very disappointing for you at the least! There has to be something that your dr can suggest!

lilypilly | @lilypilly | 6 days ago

In reply to @dragonfire "@lizzyj58 The Thanksgiving dinner was well enjoyed by the family except me I could taste very..." + (show)

@dragonfire please share what your Dr says. It has been 18 months for me a.d I can't taste. Eating is now a task but I beed to to survive. I too am desperate for an answer. All I get is keep trying. Good luck.

ggg80206 | @ggg80206 | 6 days ago

The 35 radiation treatments are complex for your body. Talk to your oncologist about therapy to help with swallowing or if you are not eating enough and losing weight. The upside is that hopefully your cancer is in remission. Better days are ahead.

lizzyj58 | @lizzyj58 | 5 days ago

In reply to @dragonfire "@lizzyj58 The Thanksgiving dinner was well enjoyed by the family except me I could taste very..." + (show)

@dragonfire Did you get any swallowing exercises or neck exercises before your treatments?

bmora | @bmora | 5 days ago

I lost too much weight during my treatment and my doctor order a feeding tube placement. It didn’t hurt, it was a pain in the butt. I had to take all my nutrients by mouth for two weeks before I could get it removed. I had it in for 3 months. Towards the end of the 3 months, I was drinking the feeding tube supplements with a little coffee creamer. Keep in mind not all feeding tube supplements are meant to be taken by mouth. It’ll be a while before your taste buds come back, but don’t give up. Hope it eventually happens. On a positive. I now have a bathing suit body! I’m skinnier now than I was in high school!

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @robpara "Hi Folks, I have been a long time lurker in this group. I can’t say enough..." + (show)

@robpara

Hi Folks, I have been a long time lurker in this group. I can’t say enough about the people that post their experience - shout out to @hrhwilliam and so many others. I also followed @jkhagen1 as she was just a few weeks ahead of me.

I had left tonsil SCC and one suspicious lymph node. I was originally stage 1 going into the de-escalation study but then the review board was not sure about if the growth extended into the tongue muscle. So there was a last minute change, a little un-nerving to say the least, which led to the basic 35 rounds and 6 week protocol. I’m not sure I would have been the person to end treatment without being absolutely sure so I think it all worked out.

My experience with treatment was better than I anticipated yet still tough. I was shown the food hierarchy that had a chicken sandwich as the goal and I set out to eat that every week of treatment. I never reached a point where the pain was too much. For me it was loss of taste. I have a hard time eating something with zero flavor. So for two weeks (like week 7 & 8) it was hard. I lost a little weight (I’m 6’3” and 165Lbs so little to give) and that got some attention. I went to shakes just to supplement meals. But I always tried to eat something to exercise my throat.

I stayed active with pilates and walking with my wife at the local indoor mall along with biking. My labs were good during chemo yet most doctors don’t want you doing anything that could lead to a fall (broken bones). But by the 7th week I needed to cut down on activity to help with my weight.

At 7 months out, I’ve had 2 PET’s at the 3 & 6 month interval. First was very good and second was better - all primary sites were clear and it was great to see the screen during my scoping that showed all normal looking throat tissue. The body is amazing.
I have some general uptake in my tongue which I’m told is normal but of course needs to be run to ground. At 6 months there’s still a lot of activity and healing going on.

I’m not sure our medical care team would approve but I uploaded all my test results, labs and even pictures into an AI tool to get feedback. At Mayo, you get results from scans and labs before you get to your car in the parking lot. So it can be helpful if you’re wondering what it all means while you wait for a doctor call or appointment. Again, proceed with caution on this.

I have read that healing is like two steps forward, one back. I agree. It’s not been a straight line for me. I feel like my mouth goes through a healing cycle every 1-2 weeks where the inside of my cheeks feel strange and a tiny layer off skin peels off. I’m not sure if it’s triggered by foods. I try to eat diverse flavors yet I stay away from really spicy food (which I was never good at anyway) and acidic foods with vinegar, etc.
I recall ketchup tasting horrible at the height of treatment. All I tasted was the vinegar. Now it’s maybe 50% normal and tolerable.

My taste is mostly back to normal. I didn’t have any metallic taste but lost sweet early on and it has yet to come back. Sadly chocolate taste like not much. I also have some dry mouth. I tried acupuncture but no success. I used the xylitol tablets at night and Therabreath lozenges during the day if necessary.

I don’t really notice neck pain or jaw (opening wide) pain but it’s there if I press my range of motion. If I sleep wrong, it can trigger sore muscles in my neck and that can get me concerned that something else bad is going on.

Oh, and I wear the head/full neck mask at night when I sleep. I really haven’t had too much external lymphedema but this helps along with daily manual massage. I’ve been told after completing a couple throat exams and a swallowing test that I don’t really have any or much internal lymphedema.

So for me, and like many of you, it’s waiting and hoping for some (in my case sweet) taste to return and a little saliva. I think I need to do a better job with rinses as I really only did that back in the treatment phase to combat sores - which I no longer have had since the treatment ended.

One last comment. Mayo was amazing. I miss seeing all the people. I felt the safest when I was there with lots of eyes on me. The actual radiation treatments went fast and I seemed to tune out the fact that my face and shoulders were locked so tightly in. In fact, I routinely fell asleep which had me concerned that my mouth bite would shift. They of course assured me they monitor my positioning so throughout. And chemo was easy compared to what I witnessed others go through. So many people much braver than me. I did routinely get hiccups on Wednesdays and the steroids were awesome for my lower back!

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@robpara, I always get excited when a lurker comes out from behind the screen to share. It's helpful, informative and kind posts like yours that helps other lurkers to have to confidence to post if they have a question they're afraid to ask or a part of their story or health issue they'd like to share.

And, as you posts indicates, until people are ready to post or may never post, we can make lurkers feel welcome, informed and included through reading.

Thank you for posting your treatment journey.

I can understand missing the care team and the assurance of eyes and knowledgeable professionals around you. How often will you return for follow-up? Or will follow-up be done locally?

robpara | @robpara | 5 days ago

In reply to @colleenyoung "@robpara, I always get excited when a lurker comes out from behind the screen to share...." + (show)

@colleenyoung All my follow up is local here in Scottsdale. I’m fortunate to live only 15 minutes away.

I assume I will repeat the PET scans for the normal intervals - my next is 12 months. The Mayo team has told me that there is no concern for any remaining disease based on my recent scans and also for recurring disease. I don’t think I can ask for any more assurance since no one can give 100%.

The one point I was reminded of is that most of what we read on-line is questions and issues. Not all the success stories are posted. So if you’re new to this discussion, keep this in mind.

I can also track my progress based on how my beard is filling back in. I don’t grow mine out - but I can tell by the need to shave. I started with a loss of hair on the left lower back of my head and left and right front area just below my jaw line.

The hair in the back took about 6 months to return to normal. A few months later, my right side (front side) filled in. Last to fill in will be the left side which received more treatment. I’m told the body prioritizes hair growth last - not sure if this is right. But it seems to line up with what I feel elsewhere.

Just in the last few weeks I feel like a little more saliva production has returned, but not even near 50% yet.

And yes, as hard as it is to hear (I hated hearing it), you have to vary all the taste inputs even if it taste like nothing. Been there. Done that. Only exception is spicy.

I recall complaining that ice cream tasted like hand lotion. It was awful. Today, still not sweet, but I can taste flavors - malt especially.

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