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

[RCD]

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?

[mahootna]

@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

[Alan22]

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.

[CaptainAustrali]

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.

[Mozz]

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

[Katekat]

Hello everyone!

Hoping you are all well this morning 😘

I just wanted to let you know that we have launched a new group for people affected by Head and Neck cancers. This is being facilitated by a head and neck cancer support nurse coordinator and the team here at Cancer Council. This group is closed, so your discussions will be in a safe and enclosed area of the community.

To request access, do the following:

• Find Online Support Groups in the menu if you're on a mobile device, or using a web browser, you will be able to see it in the menu at the top.
• Locate the group titled "Head and Neck Cancer Peer Support Group", and click that link (it is 2nd in the list of groups from the top).
• Click the blue "Join the group" button.

Myself, or another member of the team, will then approve your access during work hours (Sydney time). I just realised I'm posting this on a Friday, so I'll keep half an eye on it over the weekend. Just bear with us 😀

Cheers and happy posting!

-Kate

Cancer Council Online Community Manager

[highlander2425]

My diagnosis and treatment appears to be the exact same as your husband's. Same timeframes and side effects.  I am 21 years post-treatment and live in the USA in the state of Oklahoma. I was 45 years old when diagnosed and treated and will turn 66 this month. There are many more mouth rinses available here today than there were then. One thing that helped the healing process for me was an aloe vera rinse. My wife was able to find it in a local health food store. I rinsed with it regularly and helped treat the burns and damage from radiation.  I hope this helps--and to know that someone is 21 years post where you are right now. Blessings and prayers from the U.S.! 

[Joolz]

Thankyou so much for your reply. It does give us both hope to hear you are 21 years post treatment, wow! That is amazing. So glad for you.

My husband is now 15 months post treatment. So the physical effects of the mouth ulcers etc are now totally gone. He has some taste although he says some foods taste different and some textures he finds difficult. But he is eating pretty well most things although small amounts. He lost over 20 kgs and has yet to gain  any weight back. 
‘The main problem he has now has been a deep depression and anxiety, also chronic fatigue. He has tried for over 12 months to return to his previous job as a diesel mechanic but has been unable to manage it. It is very heavy work. He is now almost 62 so that alone is a factor anyway I feel. His employer has been very supportive, trying to find him alternative work. But so far it hasn’t been successful. He is not a computer minded person, finds it hard enough to use a smart phone! So he struggled with the computer based role they gave him. Anyway, I keep reminding him he is ALIVE and to embrace life, he has a second chance. 
‘He will most likely need to take early retirement. 
I will show him your reply. I’m sure it will give home hope. 
Thankyou again and stay well in these crazy COVID times. 
‘He is seeing a psychologist as well 

[ShaundenBakker]

Hi Joolz, I took early retirement Aug 19 at the 4 year mark of my recovery. I am 63. Found the ongoing side effects just made worklife just too exhausting. I’ve missed my work very much but now know it was the best decision for both my mental and physical health. Less stress has meant giving my body the best opportunity for healing. You’re doing a great job supporting your husband’s journey. My wife has been incredible just understanding and letting me be me.
He will be fine. Shaun

[OzStu]

For pain, I was on the oral morphine.  But the best thing for the mouth and throat pain was this pink oral liquid,  I can't remember what it was called.  I used to take small sips and just leave it in my mouth and let my saliva dilute it and let it trickle down my throat and regurgitate it trying to keep in mouth as long as possible......it numbs everything.  Ask them about it.  And I found that with it,  I could even eat soft food in my sixth week.   Your taste will go to shit.  There will be two types of food after about week four........food that tastes like turds, and food that tastes like cardboard.   Sweet things will be the worst.  The more bland and flavourless the food,  the better  you'll handle it.  I found bread with the crust cut off and lot's of marge was good........scrambled eggs was my favorite,  it even still tasted like egg.   Natural yogurt.  Sustegen, lots of that.  Drink through a straw and put the straw far back towards your throat.    They don't like to fit feeding tubes in your stomach after they have started the rad and chemo,  because chemo lowers your immunity makes infection post surgery likely.   But they can fit a feeding tube that goes up ne nostrile,  and down your throat all the way to your stomach.  It's very thin, and has to be pumped with liquid for a long time to get a good feed into you,  but that's something they can do if you find you can't get enough down by mouth even in liquid form.