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

Occasional Visitor

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

Hi everyone, 

 

First time poster on here, thank you so much to everyone who has taken time to share their knowledge and experiences - so valuable. 

My husband is five weeks post treatment for HPV+ Squamous Cell Carcinoma. Primary site was left tonsil, and it had spread to one lymph node on the same side. 

I have so much respect and admiration for all of you who have endured the harsh and challenging treatment for Head and Neck cancers. It’s an intense experience. 

My husband had 35 sessions of radiation treatment over seven week. No chemo - due to his age the advice was that the toxicities would outweigh the benefits. 

I’ve come with a very specific question. He is recovering slowly but steadily since the end of treatment - but is keen to explore a couple of options to help with the very painful mucositis. For him, his throat is healing okay but the roof of his mouth is still incredibly painful. He’s doing really well getting back into solid food already but everything - from the blandest foods to the mildest sauces - seems to be reaggravating his mouth and the pain there is getting worse not better. 

We have seen mention of mouth rinses/gels that seem to be available in the US and UK specifically for the treatment of radiation induced mucositis and wondering if anyone has found similar in Australia? 


Gelclair seems to be one brand name. Mucosamin is another. It sounds almost like the  Strata gel that you use on the exterior skin - it creates a layer that protects the inside of your mouth to allow faster healing and prevent pain. 

Any leads?

Occasional Contributor

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

@RCD 

Hi there, where in Australia are you?  I am in WA and had my treatment at Royal Perth.  They gave me a gel to rinse my mouth out before eating, this was used during treatment as well.  Not sure of spelling, it was called xylocaine.  It is pink and really thick.  You mix it with a little water and rinse around your  mouth.  It is the same as a topical or local aenesthetic.  Your oncologist or local hospital should know about it.  If you can get it supplied by hospital you should be able to get it on PBS.

I used this for more than six months after treatment and then gradually was able to go without.  Even eight years down the track I still have times when my mouth is sore due to thrush.

Eating will always be a challenge and trial and error will sort out what he can eat the best.

go back and read some of my earlier posts, there may be something to help.  I am the longest out from treatment and to date have remained in remission.

Good Luck

 

Occasional Contributor

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

Hi,

 

Mine too was a left tonsil SCC with I lymph node. Surgery and radiotherapy for 32 sessions in 2010.


I didn’t have a specific roof of mouth issue, but did consume mostly ENSURE supplement for many months. Got this account referral for free from the local hospital dietician. She was great. Can then buy it in discount by the slab! Also Consumed lots of milk as it was the softest...am still hooked on iced coffee in various forms...all good.

Super Contributor

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

G'day G'day

 

Listen, results may vary with this, but as your hubbie experiences active pain in the region, this might be worth exploring - some or all of the recipe - because a numbing agent is a key ingredient.

 

So the product would need to be mixed by a compound chemist - you approach them with the recipe and say you need it mixed up.  It might cost fifty bucks or somewhere thereabouts, as it'll be a custom mix they make up for you ... I can't speak for whether there are any commercial available alternatives (there weren't when I had awful mucositis and dysgeusia).

 

It's called MAGIC MOUTH WASH, and you can find the recipe and info here:  https://www.medicalnewstoday.com/articles/magic-mouthwash

 

Check it out - in concept, it applies a protective layer over the mucosa - you take it before eating, or at intervals, and that protective layer prevents irritants to the already insulted mucosal lining, and there are other components to the medicine like anti-fungal and numbing agents to help foster healing and reduction in pain.

 

Look into that, I hope it helps, there's no guarantee, but also take heart - I think I had profoundly bad mucositis, 4 years later, I still sometimes vomit up phlegm (but that's largely as a result of dry mouth, but the docs reckon there's sensitivity to the mucosa, it never fully recovered).  Anyways, it's really bad, but as bad as it is - six months from now he'll be a different person.  Head down, distraction, try and get through it .. but you will get through it.

 

Hope the medicine is helpful.

Contributor

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

Hi RCD,

 

[We have seen mention of mouth rinses/gels that seem to be available in the US and UK specifically for the treatment of radiation induced mucositis and wondering if anyone has found similar in Australia?]

 

If you can, go back or get an appointment with your treating oncologist. HE/She will be able to write you a script for Mucosoothe gel. it contains Lidocaine a numbing agent. if you cannot see your oncologist straight away then when you phone just ask the receptionist to have the Dr. write script and go in and pick it up and take to the hospital Pharmacy.

 

You swish this around in your mouth for a few minutes and then swallow. it will numb the mouth and throat so you can eat more comfortably. It will be far cheaper to get it with a script from your oncologist through the Hospital pharmacy as opposed to getting it yourself over the counter at Chemists.

 

it's great stuff too, even numbs the most agonizing toothache lol.

 

good luck.

 

Cheers

Maurie

Reply
0 Kudos
Post new topic
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.