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

[Bill1]

Hi Capt.

well here i go again...5 months out....thrush is upon me once again...the tongue is a mess...and now mucositis has  started on the roof  of my mouth and its large enough and sore enough that i cant even drink water...looks like its spreading to my gum line on left side of mouth...never had mucositis

went to the dr and he said to take fluconazole 200mg once daily for 10 days for the thrush(tongue)

he also said there is nothing for mucositis.....???  he said sometimes they prescribe Prednisone for extreme cases but in my case of treatment for tonsil cancer he said it would very possibly cause thrush to set in again or accentuate the present case....

sooooo, still on feeding tube 5 months out and was just starting to try to eat soft food when it all came down...

i thought i did remember something about you mentioning you also had mucositis if i am not mistaken and wondered if you found anything that would relieve it...??

thank you and take care...

Bill

[CaptainAustrali]

Buddy the only thing I know of is this product 'magic mouthwash'

It isn't commercially available here in Australia, I had to get the recipe and get it mixed up by a compound chemist. 

In principle, it's supposed to line the throat, easing discomfort from anything passing down, and it includes a numbing agent, antihistamine, anti-inflammatory and disinfectant-type effect

Mileage will vary from person to person I reckon, and mine wasn't mixed well, was lumpy and weird instead of fluidy .. but if you look into it, in theory it's just the thing to provide some kind of relief

https://www.healthline.com/health/magic-mouthwash

[Jen827]

Hi Bill - I had brutal mucositis despite having proton radiation which is supposed to be better.  I was on a med for a while called glycopyrrolate 1mg 2-3 times per day.  It helped slightly but they wanted me off of it because of some of the side effects of the med itself (tachycardia, decreased saliva, urinary issues, etc).  It is primarily to dry up secretions which as we know we are already dry as a bone.  But it did help to slightly reduce the mucus production.  As for sores/pain/thrush - it will not help with that.  That is strictly mouth care.  The constant rinsing with salt/baking soda solution helps a bit.  The magic mouthwash capt mentioned can assist with pain.  I used a special toothpaste and still do to this day (9 months post tx) that is high in fluoride.  I am of the lingering mouth issue club - I still cannot smell most things or taste most food.  I had my feeding tube for 5 months post and still live off of protein shakes due to taste and texture issues with no saliva.

The mucositis feels like it will never end I know.  It will.  The doctors know next to nothing about the side effects and do not focus on the treatment, I know.  Reach out with any questions.  

[Azjoetrucker]

Hi Bill

   I read in the facebook head and neck site that the magic mouthwash recipe was floating around in Utube.

   You might also want to check into different like recipes to find the one that best works for you.

 Regards, Joe

[Azjoetrucker]

Bill-

   Just checked my old notes and it seems that for thrush I also experimented with various dilutions of 3% hydrogen peroxide and water...building up towards full strength until I could stand the pain and got results.

   Apparently the peroxide wash kept the thrush problem at bay for me.

[Sirdragon65]

Funny you mention the magic mouthwash.  At 3 weeks in to the treatment my doctor gave us instructions to make a mix of Malox, Benadryl, lidocaine (local anesthetic) and Nystatin (antifungal).  He gave me instructions to gargle 30 minutes before every meal.  At that time I was experiencing throat discomfort and difficulties passing solid food.  My wife mixed it and it worked very well.  I used it for a week and for some odd reason the throat pain went away and I am now on my last 2 radiation treatments and the pain barely came back but I am still able to eat solids.   The discomfort is tolerable at this point.  It stinks though because everything smells so good but when you eat it, the taste isn’t there which leads to major disappointment but I force myself to eat.  I dream of the day I can taste things again.  The only other major issue is dry mouth and a lot of my dental work fell out even with constant brushing with fluoride toothpaste.  Doctor said I won’t be able to do anything with my teeth for at least 6 months.  So far some of the dental work stayed in and I’m hoping to maintain until I can get them refilled in 6 months.

[Mozz]

Joe@

[ I also use a tincture called Red Root which does seem to help unclog some of the lymph backup (every other week for 3 days, max 20 drops a day for me]

Hi joe,

Thanks for that info, i'll have to give it a go and see how it goes. I mainly just rub the palms of my hands down my neck to force the fluid down into Heart area where it can hopefully be pumped out.

Hope you are doing well. all the best to you.

Cheers

Maurie

CathV@

[I've had several bad nosebleeds due to the friable state of my blood vessels. Last week I had to go to ER because I had a bad one. Just discharged from hospital last Monday]

Hi CathV,

Sorry to hear, Hope you are doing better now.  🙂 wishing you all the best. One day at a time.

Cheers

Maurie

Mahootna@

[I am six years post treatment so have a pretty good handle on what life will be like for you from now on. The saliva function never fully returns as the radiotherapy treatment kills some of the glands and they never repair]

Hi Mahootna,

I unfortunately  know what you mean. It sure is a pain when eating out like you mention. I too rely on soups and a lot of gravy on meals. I can eat some meats if i cut it up fine and smother it in gravy, Fish is easy to eat for me it just kind of melts in your mouth. I'm still taking the protein drinks for breakfast though as I find it easier to just shake the bottle and swallow lol.

My taste still hasn't fully returned and I'm not expecting it to. Chocolate now tastes absolutely disgusting to me. I guess this is the new Me and will have to live with it.

Hope this see's you well.

cheers

Maurie.

Bill@

[my mouth continues to go from dry as the desert to foamy like a rabid dog to sticky and disgusting and a few others....at night i have trouble sleeping since my mouth and throat are so dry my tongue sticks to the roof of my mouth and i need to take a swig of water but my mouth feels numbs afterwards...the doctor has never heard of]

Hi Bill,

I chew sugar free gum to help with saliva stimulation and also suck on Sugar free sweets. Probably not the healthiest options but they help a lot. if you are still finding foods hard to eat and taste terrible try the Ensure protein drinks. They will at least keep your weight up until you get some of your taste back. "You probably already are on them drinks"

Keep trying though with soups, runny pasta and sauce, scrambled eggs even though I know it tastes like roadkill. Fish too melts in the mouth if you cope with that.

With recurring thrush, Dr.s tend not to like keep prescribing Fluconazole as it can damage the liver. If you can find kefir in the supermarket or a health food shop and if it's the genuine product, drinking it will help kill off your Thrush. I used it with the EX when I lived in Latvia for awhile. It was actually prescribed to me by a Russian Dr. Tastes utterly crap but now days with little taste I reckon I could drink a whole bottle and not gag lol

You can also get creams from pharmacists to spread over your tongue and inside your cheeks as well, If all else fails then by all means see your doc for Fluconazole.

In regards to the Mucositis, I used to get a product called Mucosoothe from the Oncolgy dept at the hospital. it was a thick pink gel with Lidocaine in it and it worked a treat. You would swish it around in mouth and back of throat then swallow it. It would numb your mouth quickly and only cost $5 a bottle but that was with a prescription, without a prescription the pharmacy would charge $89 a bottle.

Unfortunately I cannot get it and send it to you as Customs here will confiscate it and even if it did clear customs here I believe Customs at your end would also confiscate it as well.

Your best bet is go back to your Doctor and get a prescription for Dukes or Mary's mouthwash and the pharmacist will make it up for you. I think though it may cost a bit.

There is also a mouthwash in the US called Caphosol (Available on script) which may help alleviate the Mucositis. Magic Mouthwash though is much much better.

Wishing you all the best Bill and to all the members of this Forum. I go for my one year post treatment PetScan on the 24th of March and see Oncologist on the 31st. I'm remembering the late Michael Becker as this scan approaches.

Cheers Maurie

[Azjoetrucker]

Hi Bill...

  i found a mention in my journal after which Thrush was never mentioned again (it's never reoccurred).

   It was a mouth rinse of plain water with a quarter teaspoon of apple cider vinegar.  Journal said it burned like hell but eliminated the thrush.

   Not sure that's a practice for the faint hearted but apparently it alleviated if not eliminated the problem.  It also burned like hell.

   Cheers Joe.

[Bill1]

Hi Capt

yes, i have about quarter bottle of magic mouthwash from last episode of thrush but it only lasts about 5 minutes and the pain is back...the way each dr mixes the magic m is different so mine may not be that good?

i have started taking the prescipt for the thrush and will watch the mucositis to see if it keeps spreading  since there doesnt appear to anything to cure it

always something....

thanks

Bill

[Bill1]

thanks jen

well its just impossible with the doctors since they dont follow the patient problems like they should...and try to get in for follow up is near impossible except monthly for scoping...

i appreciate your thoughts and experience and hope it all come together for you again...at this point my ability to smell food is perfect...my taste is zero...texture is horrible and hunger non existant....so i use the peg for drinks...they wanted to give me prescrip for   saliva stimulation and when i read the side affects of ALL it is nothing i would ever put in my body with all i am up against...

thanks and best wishes

Bill