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

[Bill1]

Hi Capt

i have what you had in respect to racid taste and cannot eat....had it weeks...using the tube you recommended that has saved my life...thank you once again...but....one more question...did you find anything at all you could put in your mouth to take out the 24/7 rancid taste ?   i have been sick to my stomach day and night due to the taste in my mouth and trouble sleeping as well due to it ....i have NO TASTE but rancid taste....it feels like small droplets leaching from my tongue that start real sweet then turn to battery acid and rotting flesh.....

if only there was something i could put in my mouth that is dry as the Sahara  and all slimed up and stringy as well as pure foam....when i put plain water in my mouth it really wakes up the sores from the radiation....i assume the taste is from the chemo cisplatin.

my tongue is white slippery slime covered, cant brush the tongue it hurts for a day if i try....my teeth must be crying for mercy....but i can brush the teeth.

having trouble sleeping as well as being awake not being able to get away from the tase and slime....

tried to chew gum....forgetaboutit...almost threw up...anything that goes in my mouth causes the gag reflex...even water if i am not very careful....something with taste of course gives me a rancid taste and the gag reflex starts...and hurts as well...

got 3 more weeks of chemoradiation left tonsil and 4 lymphs....then the real pain begins for awhile i guess from reading....then some let up....i sure hope i return to normal somewhat because this wont make it......i am not looking forward to each new day right now except knowing in 3 weeks no more treatments......24/7 nausea (take a nausea pill once and awhile if really bad...cant live on them) and the mouth of course....

all i have been doing is some water drinking by mouth to try to keep troat muscles going and using the tube for everything including water etc....

thanks

BIll

[CaptainAustrali]

Hi Mate

I tried heaps of things, but regrettably no real relief. 

Clinicians recommended things to stimulate saliva and taste like butterscotch candy and these little tablets that adhere to your gums and dissolve over night (to help with the dry mouth).  When the rancid taste problem was at it's worst, anything that stimulated saliva was a terrible idea .. because even saliva was poison.

Still, a major priority to stay hydrated - Every couple of hours I was putting water in the PEG, trying my best to get adequate hydration, protein and nutrition (in that order of priority).  Aside from that, I just had to wait it out.  

If it's really bad now, my suggestion (which you need to weigh up for yourself with your own experiences, buddy) is:

- once per week do a taste experiment, sucking on a sweet tasting candy.  When you reach a point that it is tolerable (still bad, but not vomitty bad) keep it in longer each time, but if it triggers the rancid taste just spit it

- expect that over a period of somewhere between 6 weeks - 6 months, it *WILL* improve.  It will eventually go away

- in the meantime, optimise your PEG use to get the best out of it (although it was counter to hospital advice to stick only to their formula - blockages issues etc - I put all kinds of things down it .. medicine of course - pain relief, but also stuff like musashi protein shakes, custard, things that were high calorie, high protein, anything that was safely liquid but provided some kind of optimal benefit)

- I remember reading 8 weeks as the average time for mucositis to heal .. I think for me it was closer to 10-12, I honestly can't remember.  I'd take that as a signal for when the rancid taste problem will also fade (for me the rancid taste issue did seem somehow tied to the damaged mucosal lining, so it can't solely have been a chemo side effect)

Sorry mate, I think it's a waiting game - but don't let that stop you from owning your own path - if you think an experiment is worth pushing, trial it.  Me personally, I think it's also a priority not to fuck up your processes too badly (force eating poisonous food can form subconscious eating/flavour aversions that could cause you problems down the track, apparently)

Only other thing is your swallow reflex, thyroid and neck muscles:

SWALLOW:  try and find was to do it, even if its a dry swallow just to help the muscles keep their memory

THYROID:  get it checked once your side effects start fading and you begin eating again - if your thyroid is damaged, you can pile on dangerous amounts of weight fast

MUSCLES:  try and do/get massages regularly to help with the muscle damage if you had radiation to the neck

[Azjoetrucker]

Hi Bill:

    I agree with Captain about experimenting...although my bout with the Nasty Taste got nowhere close to what you guys experience...I wonder if Ginger Tabs may help (yes you're probably going to have to pre-wet the palate or, as I did, crush a bit at a time and drowned it in water before that painful swallow.

    Since ginger tabs killed the nausea and minimized my gag reflex, I was actually able to drink more water.

   Hope it works for you.

PS update...four months past last chemo/Rad I still have the same pain spots in the throat as thru treatment and am walking around with a swollen neck, mostly feeling like there's a stranger with his hands around my throat, like the song goes.

   Regards, JoeAzTrucker

[Bill1]

thanks Capt...will truge along and wait it out....thanks again....

[Bill1]

thanks Joe....i may try the ginger thru the feeding tube...i used to take a lot of vitamins until treatment and they stopped me but i have ginger capsules and i will crack one open and pour in a drink and shoot it....see if that helps with the nausea....thanks

[CaptainAustrali]

No doubt someone will have already told you, but be super careful pushing non-liquids down the tube.  Even stuff that dissolves, like aspirin, can have tiny little particles that can accrue.

ALWAYS make sure to flush water down the tube after you put anything else, you can't have too much water anyways.

[Azjoetrucker]

Oops...

    Thank you Captain.  Actually I was suggesting watering a well chewed pieces of a ginger tab down the throat to see if it'd help with the roadkill taste...not down the feed tube.

    In my case the Ginger did not cause nearly as much pain going down as other foods and did help with nausea and roadkill mouth...

   JoeAzTrucker

[Bill1]

Hi Captain

thought i would inquire as to whats going on with my mouth...since you seem to have a vast understanding of the tonsil/lymph chemo radiation procedure and had some difficulty.

i have the left tonsil and 4 lymphs in neck to refresh your memory of who i am....this Tuesday i finished chemo and i have 3 more radiations left counting today...i will be done next tuesday.

i have kept my weight up thru it all with the feeding tube thanks to you....and thought i was going to be out of the woods since my mouth pain is very significant but the Dr. is telling me its all normal etc....

in this past week i have been getting more and more irritation of the mouth and throat and a white film has developed as of this mornings inspection across the roof of my mouth....like someone went in and spray painted it...not just thick saliva but a mold looking white bumpy solid covering....i had a bit on the  back gums for weeks but not much and its not painful including the roof of my mouth...no pain...

now where he has shot the tongue on the left side is all swelled up and looks a mess and truly hurts and has hurt for a month....

now this morning my tongue has oblong circles of red on it and the tongue is also white but not like someone painted it like the roof of my mouth ???

yesterday the Dr. prescribed oxycodone 5mg to take every 4 hrs for pain....all this did not break out yesterday on tongue etc but he only looked in my mouth for about 5 seconds and said it looked beautiful???  the tongue broke out this morning and i guess the roof of the mouth got much worse overnight also.

reading about mucocitis on the internet it states if infections set in you can die from this ....???  

you had told me you had a bad go with mucocitis as well as thrush and thought i may get your opinion on this and if i am worrying too much and just take the oxy and continue to feed and hydrate thru the tube and get on with it....the pain is multiplying and the slime in mouth has kept my tongue white all the time like its encapsulated in the white thick gel i now have for saliva and its been that way for many weeks .....

i dont know how serious this is or if its just the way it goes at the end... ???

i rinse and brush a few times a day....the baking soda and salt feels like i put razor blades in my mouth so i use warm tap water ?

sorry for such a long inquiry....but i am worried that the Dr. may know how to radiate but may not be so good at keeping me out of trouble with my mouth sores etc???

hope your doing fine in your recovery since you said your much better but got some way to go....

thanks Captain....

Bill

[Mozz]

G'day Bill,

You might want to have your local Family Doctor have a look inside your mouth. The white coating sounds like Oral Thrush.

If it's very painful, burning and stinging it may well be Thrush. It will also hurt like hell if you put anything in your mouth. Until you see your Doctor you should be able to get Oral Thrush medication over the Counter at your local pharmacy i.e Nystatin, Nilstat etc.

Your doctor may prescribe Fluconazole oral tablets if it's really nasty. the tablets take a couple days to start working but will bring great relief.

Hope this helps.

Maurie

[Bill1]

thanks Maurie..

i will do that

....i am guessing what i have is quite normal for my condition ?

thanks

Bill