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

[Kinkoona]

Well I really feel for you lot .I am 8 yrs post treatment and I don’t post long passages,but I will say life is different now.Plenty of plain sauces with your food and also soft foods I have soft wontons etc as my main intake of foods and soft noodles.I do miss my steaks  and chicken but have found some beautiful soft and eatable fish ,it’s called Toothfish and is slightly fatty and creamy to taste .I have it brought from Sydney to our local shop .Good luck to all ...Also lived off a peg for 9 mths  .

[Bill1]

thanks Capt...its ironic that i got "rancid taste dysgeusia"....i was eating great and put on 20lbs prior to therapy and now in 3 weeks lost 15 of those....its hard to push drinks down plus water...i am getting up really early to try to start and being told i need at least 5 drinks to get the cal and protein etc...taking most water by mouth.....just thinking about certain foods and drinks almost makes me throw up...never mind eat or drink them.....

in 3 weeks already got some mucocitis...back teeth and roof mouth where they are shooting the tonsil i guess...tight jaw etc....they say i am ahead of pain schedule for that by a couple weeks....wonder what wk 5-6 will be like  if its this bad now ?  the tonsil has already disappeared....but they will shoot it for another 4 weeks ?

your posts really helped me to get ready and will now finish the plan

did you ever find anything to help with the taste left in the mouth 24/7 ?  they say eat spicy sauces etc...????  how could you with mucocitis ???  i had to change tooth paste 3 times already due to the pain of it....spicy sauces ?

did you take any anti nausea meds?  they gave me Zofran....its the worst constipation med ever...and the rest are worse according to them so i have load up on fiber etc...its a job unto itself.... ?  the chemo hits me the next day for a few long days....

the dr. knows nothing about it...my radiologist yesterday looked at me like i was from outerspace...they are not in touch with the patient...they just want the patients to shoot but there is no safety net for the patient...i got the magic mouth wash...it lasted 10 minutes and tasted like jet fuel....useless...

thanks for all your help Capt

Bill1

[CAP]

Hi Bill
My husband had chemo his first and third week of radiation. The chemo dr. Gave him olanzapine and ondansetron for nausea. He had to start taking one of them the night before chemo and the next three nights. He also got some anti nausea med in his IV before the cisplatin. He was never nauseous, but he did have to take laxatives and drink a lot of water. Radiation left him with no appetite, no taste and the mucositis. His last radiation was June 11. He has gotten his taste back completely but not his appetite. He now has a severe lack of saliva, and says it is getting worse. He is going to try acupuncture as suggested by his speech and swallow therapist. Hopefully that helps because he is still only able to eat soup once a day and several ensures.
I’m not sure if you are in the USA, but hopefully your dr can prescribe something for your nausea.

[Azjoetrucker]

Hi CAP,

   The best nausea fighting stuff I came across during those Dark Days was GINGER tablets.

    No side effects and thankfully went past a mouthful of sores and a completely raw throat (using plenty of water, of course).

    The anti nausea results were almost instantaneous after the first bits went down the hatch.

    JoeAZtrucker

[CAP]

Hi JoeAZtrucker
Good to know about the ginger tablets. I forgot we had them for my son years ago for nausea.

[Bill1]

yes, nothing worse than no saliva...mine is all foam...and my entire mouth is full of slime underneath....and i get pings in tongue and cheeks of terrible tastes...its unreal...i am only in wk 4 next week and i lost all appetite and can not eat or really drink due to taste, all saliva and my tongue is road kill...zero appetite and anything that i bring near my mouth lets me know it will make me puke because of taste and texture....throw in a bit of mucocitis and you have everything that the doctor never told you about and....they have no fix for because they dont even know what your talking about...at least here in U.S. its pathetic...

CAPTAIN AUSTRALIA tipped me off prior to starting....if it wernt for him i would not have a stomach tube and be in the hospital...my Dr's were dead set against a feeding tube...can you imagine....

wishing your husband the best and we are all rowing the same boat it sounds like....better days to come !

[CaptainAustrali]

Mate, I don't think the condition is very widely recognised (although there has been scholastic research to differentiate the different symptoms and kinds of mucosa damage).

I think anybody who hasn't directly experienced it will struggle, and has to work hard, if they want to understand it.  Even saliva, water, medicine, in your mouth tastes like it is somehow contaminated, your brain things that swallowing those things will be like swallowing a foul, rancid poison that may kill you.  If you try to swallow the wrong things the gag reflex can kick in and then, when you actually start vomiting, you can wind up vomiting shakes that you took via PEG out via your mouth, and blood and pain along with it due to the area damage.

It's a shit show.

In my experience, the medicines just weren't helpful, even the 'miracle cure' type ones like 'magic mouth wash'.  At least, not effective in the worst parts of the experience .. being the last couple of weeks of therapy and the first few weeks AFTER therapy.  Once I was starting to feel a level of recovery, I tried a bunch of things, but basically what it needed was time and healing.

If anything, this would be my guess, science wise, on what would help push recovery along.

1) make sure you get enough PROTEIN (via PEG), for me, those body-builder musashi shakes were the go, the hospital shakes weren't great, I went my own way, my priorities were

- hydration, protein, nutrition, calories (in that order)

I'd speculate that making sure you had a surplus of protein might help ensure faster healing (you can google the weight:protein ratio, and then google how much extra protein you need for healing when injured)

2) external gentle massage of the area, keep using your throat, keep it stimulated.  Massage, wear scarfs, keep it warm and ready to move, do neck exercises and where & if you can, do little dry swallows to keep the muscles alive and working.  I think if a injured body part knows it's needed, the body finds ways to push things along, but if it's allowed to atrophy, it might slow things down.  I'd suggest if you can handle it (I couldn't until quite a bit after therapy), start with lollies - experiment until you find one with taste you can abide, it might be honey or eucalyptus or candy-sweet .. whatever it is, suck on candy, which will produce more saliva, and start to trigger more unconscious swallows.

I reckon it's just all about time, mate, and monitoring/use of the poor abused body-part - it'll return to function, and even if full taste doesn't return, you'll get to a stage where you can enjoy having food in your mouth again.

I can't 100% say it's truth, but for me, the dysgeusia is just a bad memory.  It will be for you also.

[CaptainAustrali]

Oh yeah, side-note:  once you can start eating again, for me it was sweet stuff like cream that I could taste.  Make sure to get your thyroid function checked, as if your metabolism is impaired you can very easily pile on the weight you've dropped, but in an unhealthy way - rapid weight gain of sloppy body-fat.  Even under-eating, with thyroid impairment you gain weight.  Just a cautionary thing.

[CaptainAustrali]

Buddy (and other readers) if's not just America, but the health system overall, I think, that doesn't really recognise rancid taste dysguisia.

It's some kind of combination of physical/chemical elements, I think caused by the chemo - the radiation damage no doubt plays a part, but if I had to choose a culprit it would be chemo.  If you suffer it, you may have to combat pressure from the medical staff to eat by mouth.

With rancid-taste style of dysguesia, it's not like mind-over-matter and force yourself to eat even though you can't taste it.  It's like being forced to eat poison.  Bubbling, feces laced poison.  I took the approach of educating the dieticians and other staff, and they did their own reading subsequently, so it was all-in-all a positive thing.  But your mileage might vary, and you may feel bullied into trying to eat.  Which will have you vomitting up blood.

I think that the rationale behind refusing PEG installation may also be "mind over matter" .. if a patient is FORCED to eat, they will eat.  But with the rancid taste dysgeusia, you really can't.  They say there's a certain portion of hospital admissions (malnutrition, dehydration, collapse) for head & neck cancer persons who do NOT get a PEG installed, and it's my personal theory that if you interviewed some of these people, you'd probably find them describing that 'food tastes like poison'.

I think it's an un- / under-recognised condition, and if you have it, you just have to push through it.

I'm not suggesting everyone should get a PEG whacked in before head & neck cancer treatment, it may be a fraction of a percent of people who get this form of dygeusia.  I think it needs to be studied and better understood.  BUT .. if you do get it ... the PEG will save your life, you'll possibly have to get nasally intubated or an emergency PEG surgery, once they figure out that you can't won't eat and they can't keep you on intravenous fluids forever.

[Stace11]

I am so shocked reading this and don’t know how on Earth you’re coping with people who don’t understand what you’re going through. We (I say we, actually it’s my husband who is going through this, not me) see a specialist team every single week (speech therapist, specialist head and neck cancer nurse and nutritionist. They go through every single symptom, pain relief medication, mouthwash and check the mouth and neck.... they have supported us and prepared us and let us know what to expect week to week- as Well as increasing all meds before we’ve asked them to as and when they feel they are “upping the game”. I honestly can’t imagine how scary this must feel without that understanding and reassurance.
It upsets me to think that you’re not getting adequate support during what is such a frightening time. I’m really glad the information on here is helping. Please do look at my previous post where I’ve listed the meds that my husband is on as you may just find something that could help. One good tip is a small pocket sized spray bottle that you can fill will water and spray in your mouth, cheeks, under tongue to moisten and act as fake salaiva. My husband uses This a LOT. Another good idea is to mix the meds together so it’s ONE Painful gulp instead of 3 or four. And if it’s too thick and glucky add some water. Just small ideas ... anything that may give you some temporary relief. I’m sure you’re trying everything and have figured what will and won’t work for you - but someone may just read this and find it might help. I hope. Keep fighting on you brave people 🙏🏻🙏🏻💕💕