Head & Neck Radiation Recovery

nckaren

I had 30 radiation treatments for a tumor in my neck, which ended 6 weeks ago. Since that time, my hearing has gotten worse and I had to have a tube inserted to drain that ear. Also, I still have ulcers in my mouth, which come and go. One doctors told me I would be fine by now - another tells me it is a rebound effect. Has anyone had this problem and how long did it take to resolve itself. I don't know what is worse -- the muted hearing or the mouth ulcers? No improvement has come and I am wondering if I will be partially deaf forever? No doctor wants to touch the answer to that question. Any help in what to expect would be desperately appreciated. Thanks, Karen

AuthorUnknown

During and after radiation, my hearing was the other way. Any noise above a whisper bothered me. This went away over time, maybe 2 or 3 months. I don't know if it was a side effect of just the radiation or a combo of the radiation and chemo.

As far as the mouth ulcers, those took several months to go away. Foods high in sodium and spicy foods bothered them the most. So I would stick with relatively low sodium (salt) foods to see if eating is any better.

amr2662

I had cancer 6 years ago and had tubes placed in both ears 5 1/2 yrs ago. I have had them replaced a few times (they can fall out depending on the type) Did your ENT check your hearing after the tubes were put in. I can usually tell there is dramatic improvement right away. Occassionally (the last few day most recently) I have some fluid build up that makes it hard to hear. It will last a few days (with draining) and then go away. If is persist or hurts I'll see the ENT and get ear drops (antibiotics) to clear it up.
Be patient with the mouth situation. It will clear up soon. I had mouth sores during chemo and the doc prescribe "magic mouthwash". It helped enough so I could swallow, but numb so that eating was a strange experience. My post radiation experience was severe and I was hospitalized once for dehydration and vomiting. By the fact that you were able to post this message I would say you are doing better. Hang in there. It is a slow process. Let the docs know about your problems and maybe they can help. It may take a few months for things to calm down. I was told that the side effects from radiation don't peak until 2 weeks after treatment ends.

steviet

nckaren.......I had 9 weeks of radiation; will be 6 years ago this Fall. We all seem to have different problems from the radiation. I had no ear problems, but lots of mouth and throat issues. It is so destructive! amr2662 is right about recovery taking a long time. It took me over two years to gain back the 40 pounds I lost w/ the treatments. Be patient; things will get better, but it will surely take some time. I will never be without some problems caused by my radiation, but those problems are quite managable. The big issue is getting rid of the cancer. Things will get better for you. I wish you the best. Steve

penny2001

I have a friend that I met here at Cancer Survivors network who has the same identical cancer as I. He said that after he was radiated, his hearing was really bad. I believe that it took him about 7 to 8 months for that problem to correct itself. You may visit my website at Penny2001 here on the network. You have thrush mouth ( yeast infection ). It comes and goes many times during the radiation process. It has been 3 years for me, and still, once in awhile, I will get it. You have to take diflucan ( not sure of the spelling ), but your doctor will know what to give you. Usually after only 4 pills, it will go away.

egge

What is the "magic mouthwash" you are refering to. My husband is in the middle of his radiation treatment and is having lots of mouth sores. Thanks for the info.
Jessica

maur

egge said:

What is the "magic mouthwash" you are refering to. My husband is in the middle of his radiation treatment and is having lots of mouth sores. Thanks for the info.
Jessica

Some doctors and dentists call it magic swizzle. It really works, I work for a dentist we use it all the time for mouth ulcers!Good luck & God bless

sonner68

I as well have had problems with my hearing either being muted or at times super sensitive. I get the darn mouth blisters or now I have a mouth that feels on fire after or during eating. Ugh I do wish this part would get better. I was eating more but have gone back to drinking protien drinks again. I think it is hard for doctors to give a time frame on the healing part. Things are different for everyone and we won't get the answers to that unfortunately. Sondra

Skiffin16

sonner68 said:

I as well have had problems with my hearing either being muted or at times super sensitive. I get the darn mouth blisters or now I have a mouth that feels on fire after or during eating. Ugh I do wish this part would get better. I was eating more but have gone back to drinking protien drinks again. I think it is hard for doctors to give a time frame on the healing part. Things are different for everyone and we won't get the answers to that unfortunately. Sondra

All Different...

Welcome Sondra...

You might want to start a new thread and introduce yourself and all...

This thread was actually started (and last replied) nearly ten years ago...

Best ~ John

Sven55

Tongue swelling and taste buds

i am now 25 weeks post radiation and wondering if any of you had the pie crust tongue do to the swelling of it that pushes your tongue against your teeth, also my taste buds are only about 20% maybe? Just wondering if I have something to look forward to, lastly still a lot of hanging flem in back of throat that just seems to not want to go away, I am down about 20#s from where I used to be, I call it the new me, Drs seem to think I am cured, another pet scan in a month, I had 28 rads with 6 chemos for tonsil cancer hpv 16

CivilMatt

welcome

Sven55,

Welcome to the H&N forum, sorry that you are here, but I understand your issues.

My tongue has never felt like it did before, but it is livable. In some ways, my tongue feels just like I just finished rads, kind of tingly. I don’t know about pie crust, but it certainly dries out.  That is why I use xylimelts every night.

My taste and feel buds were totally screwy for 7 months, but are now fine (new normal).  I enjoy most things as before along with a few new food friends.

Not to take anything away from you, but the cure date is normally around 5 years post.  Those who make it 5 years may have been cured at 1 day post or like you 25 weeks post. 

As Skiffen mentioned above, you may want to start a new thread for optimum response.

Matt

macstaff

Jumping to 2023

Mike here. I had 33radiation treatments summer of 2023. 6 chemo treatments. I finished treatment Aug 28th. I was told I handled treatments well. But the last 5 did me in. Upon recovery I had horrible first few weeks. I lost 40# and almost had to have feeding tube. My mouth is like a box of chocolates. I never know what I am going to get on any given day. I am at post rad week 11 and things are looking up. I ate a full burger this week. Full deli sandwich. Waffles. Pancakes I still have my softer foods. I have gained 11 pounds ! My Dr says it will take a year to get to 80% of normal Whatever that is. Two full years to get to as good as it gets

I wish everyone the best F cancer

wbcgaruss

Mac, welcome to the CSN H&N discussion forum.

It looks like you are done with treatment and are recovering fairly well, being able to eat and gain back some weight. I don't think it was the last 5 treatments that did you in I think the cumulative treatment effect finally piled up on you. No matter, I know what you went through, it is brutal treatment and I am glad you are through it. Your doc is right on in relation to the recovery time and after H&N cancer treatment there is no normal, there is your new normal, abinormal, and there could be other variations but the old normal is left behind and we all live with permanent changes some being very small to some being severe. We are all in the same club. Keep eating and keep going. Again welcome aboard.

Wishing You The Best

Take Care, God Bless

Russ

Our motto here is NEGU (Never Ever Give Up)

macstaff

https://csn.cancer.org/discussion/comment/1710656#Comment_1710656

thanks Russ. I am trying my very best to navigate through this. Based on the 12 months to get to my new normal 80% I am 25% there. I was a zombie after treatments for a 5-6 day period. I hear radiation stays "hot" for up to three months after treatments. I am on the cusp of that so I hope my daily surprises start to wane. Better days ahead. :)

ed12083

I finished 35 radiation treatments 2 weeks ago along with 5 chemo sessions finished a month ago. Actually 7 chemo sessions were planned, but a couple days after the 5th session I had an episode of AFIB ( 240 bpm...yikes) that resulted in 7 shocks from my implanted defibrillator. The decision was made that the toxicity risk outweighed the benefits of the last 2 treatments and I didn't argue. I have been lucky so far, no severe mouth, hearing or skin issues but appetite, taste, food texture and saliva have been a problem. It's great to be a part if this community though where there is support and encouragement that there might be light at the end of a long tunnel.

will6103

I finished 30 radiation treatments at the beginning of April of 2021. I was also in the process of still recovering from a glossectomy along with the removal of about 20 lymph nodes from that same side of my neck. It was pretty painful and I went through several months of living on nothing but weight gain and protein drinks. I managed to keep my weight up through the entire process until I was able to start to eat solid foods. While going through this whole process I was taking Percocet for the pain which in turn caused a bowl blockage. This pain was exponentially worse than the pain in my mouth. If you are taking Percocet or a similar pain med make sure you are taking a softener so it does not happen to you. It is wonderful to have a community of people who have been through similar situations to talk to about what they have experienced. Keep up the good fight and there is always light at the end of the tunnel.