Mouth pain post chemo radiation for head and neck cancer

[angieh]

Hello,  it is now 9 weeks since my treatment for throat cancer finished (3 chemo plus 35 radiation). I have recovered very well in all aspects except for ongoing mouth pain.  In particular my tongue and back of throat are still very sore and irritated. 

I eat all meals (PEG removed 3 weeks ago) but my diet has to remain very bland as I cannot manage anything that is even slightly spicy or acidic.  It is becoming harder to maintain my body weight.

I thought that my mouth and throat would be fully healed by now but that is not the case.  It would be super helpful if others who had similar treatment can advise me of their experiences re healing of their mouth and throat.

Thanks in advance,

Angela

[Budgie]

Hi Angela,

I only had 5 sessions of radiation on my jaw in January of 2018, my cheek is still quite thick & I bite the inside of it all the time. So, it might take quite a long time for things to settle back down for you, especially with so many sessions of radiation. I'm sorry I can't offer any advice or knowledge for you.
All the best
Budgie

[angieh]

Hi Budgie, thanks for your reply. 

I am probably being unrealistic expecting it all to be healed by now.

I hope all is going well for you.

Angela

[Budgie]

I'm fine thanks @angieh, 👍 plodding along nicely.
I'd call it wishful thinking instead of being unrealistic 😉.
Budgie

[Andz]

I got late side effects 3 months after treatment (35 R & 3 C). This was picked up on a routine PET scan 3 months after treatment, that has thrown a spanner into my life and uncertainty for another PET scan in 6 weeks

[Stan78]

Hopefully this doesn’t come too late to help you or can help someone else. My radiation Dr suggested I use a product called Helios as a mouth rinse. I got it the day he mentioned it and used it regularly throughout treatment. Kept my mouth from becoming overly sore and promoted healing of the cells that were being damaged by the radiation. I was also able to eat solid foods throughout my treatment I’m sure because of the Helios. He also suggested using Manuka honey to clear the heavy phlegm from the back of my throat. That stuff was awesome. Would grip the phlegm and carry it down my throat without any effort. Hope everything goes well for you.

[angieh]

Hello, thank you for the reply. It came as such a surprise because my post was a year ago and my situation has changed so much since then.

I am very happy to tell you that I subsequently healed completely, can eat and drink anything now. My tastebuds are probably 90% and I enjoy spicy food more than ever.  My salivary functions are not fabulous, but I don't have to carry a water bottle with me literally everywhere anymore. 

I returned to working full time in a very busy job that I love and in fact was promoted to a higher role only 5 months later.

I have no signs of cancer (I alternate between ENT and Oncologist every 8 weeks). I am a very lucky woman and never forget it. 

Have a great day.

Angela