Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[Ben0]

Hi all

I am week 14 post treatment.

At the finish of my 35 rad + 2 chemo treatment I slowly started to improve until week 10 post treatment, when I abruptly started to have a sore throat worse than at any stage during treatment.

This is combined with severe trismus. I can just open my mouth to fit one finger.

I have read previous posts in this  thread about people getting late radiation side effects post treatment which has eased my anxiety a bit and to be patient with recovery. 

I trying to maintain my weight.

I am taking panadol for pain. I tried liquid ordine but it gave me severe abdominal pain.

Any response from those who have similar experience appreciated as I am worried if throat and trismus will improve. 
I am still waiting for my 3 month scan to be done.
Thanks Ben

[beekubee]

Hi Ben, 

Sorry to hear you have to deal with this. I would say it took me about a year and a half to fully feel better. Try to be patient! But about the trismus, has your Dr recommended stretching your jaw or seeing a speech pathologist? This is essential. You have to stretch every day multiple times to improve and it’s better to start early. There is a device you can get called therabite. Maybe your insurance would cover it. I would ask your Doctor about it because the stretching is something you have to do or else it could get even get worse, but you can improve it now. 

Hang in there!

marie 

[Ben0]

Thanks Marie
Guess I just need to be patient.
Am attempting stretching exercises but pain limits how much I can do. 
The crazy thing is in the initial period post treatment doing the jaw exercises I nearly got back to fitting 3 fingers in my mouth and then suddenly lost it all again. 
I am also back biting the inside of my cheek involuntarily which I don't understand.
Thanks for the reply

Ben

[beekubee]

Hi Ben,

Oh sorry to hear about the pain- glad to hear you have already been doing stretches. I think whatever you can manage is good if it can be consistent and isn’t painful. That’s strange it happened all of the sudden after you got back to 3 fingers- could the muscles have been injured somehow?  I do notice for myself it’s like a rubbberband-  I make progress with the stretching and then by the next day it’s like starting all over again, but slowly within that there is a bit of more permanent progress. It is hard to stay hopeful sometimes, but give yourself a break and just keep going, knowing you are doing the best you can. 

marie 

[Ben0]

Thanks Marie, appreciate response.

[April-Showers]

Hi Ben,

Sorry to hear of the side affects you are having.  It is really still early days post treatment and as other members have said it does take time for things to return to a new sort of normal.  I would say a good year.  The first three months are the hardest with the most affects lingering.  

For the rebuilding of the throat, jaw and mouth tissue the best thing is to be eating and drinking.  Have you managed to return to solid food?  How are your meals looking?  I found it took around 6 weeks to 2 months to be able to eat a complete solid diet again.  After three months I found chewing was less painless and less tiresome.   It really takes time for the tissue to rebuild.  

Even until now, I am 5 years out of treatment this month, I get muscle cramping/spasms in the neck, tongue and throat.  However, it is manageable.  I can eat and drink anything but the dryness in the mouth is still an issue for salting or dry foods, I need water on hand.

Time really is the healer so you will need a bit more patience, I know that is a big ask considering what you have been through with treatment but it is achievable just take one day at a time, one week at a time.

All the best.

[Ben0]

Thanks April
Just hearing from others who have gone through this is helpful.

I had my feeding tube removed on new years eve.

So about 7 weeks ago. Which was a fantastic relief!
My diet is mainly softer foods such as porridge, coffee, fruit, eggs, salmon and soup. All with a glass of water.
Like others I feel my tastebuds are returning just some things taste different.
I also have gone back to including 2 or 3 sustagen drinks this week in order to try and stop my weight slipping further, and due to difficulty eating solid food.
My jaw definitely starts to ache when trying to eat combined with the trismus and soreness when trying  to swallow.

Do your spasms result in you biting the inside of your cheek or tongue?

[Jen827]

Hi Ben! Sorry to hear you went a bit backwards. It happened a few times to me as well.  I was fully feeding tube for 6 mos post treatment. Took me almost 2 years to have some semblance of taste. I am three years post now and if I don’t do my jaw stretching eating a sandwich is painful. It’s silly things like that which happens and reminds me I have to stay on top of it. The therabite hurts like hell but works.  Everyone heals differently but even when it feels like you never will (like when food still tasted bad two years out) you wake up one day and taste your coffee again… take all the small wins as they come, they will come! Feel good 🙂

[Ben0]

Thanks Jen 

[Paula007]

Hi Ben,

So sorry you are feeling like this as already suggested I would get in touch with your team/nurse looking after you get some pain relief that does not cause you problems and do your exercises.  You are less likely to do effective ones if you are in pain.  Also please contact your speech pathologist asap as the longer it goes on the longer it will take to get better.