Taste can take anywhere from 6 month to a year to return. I had my feeding tube removed awhile back and food no matter what is or beverages all taste the same....Disgusting.
Taste returning also depends on how quick saliva function returns. That too can take can 6 month to year but may never fully return to how it was prior to treatment.
You will need to swallow water with each mouthful of food in order to swallow it.
The back of my head is still bald from Radiation 2 months out of treatment. It will take many months for it to regrow.
I was overweight going into treatment, so I wasn't concerned with forcing myself to take the food. Within the hospital they were urging to maintain bodyweight and focus on calories, posing that refitting the mask is a problem that can risk treatment if your anatomy changes too much. They also cite losing the ability to swallow if you don't force yourself to eat.
My take ? Bullshit. My radiation oncologist was a lovely man with decades in his field, the radiation techs concurred -refitting the mask is a routine circumstance, and should not influence your decisions regarding food and nutrition.
Losing your swallow and having to be re-coached is an issue, but so also are pattern based food aversions, pain, vomitting blood, etc.
In the deeper doldrums, I would inject shakes via PEG, then vomit them up via mouth (with all the distress and discomfort as you can imagine).
I stopped taking anything, even water, by mouth for .. I'll say 2 months ... and I'm fine now. As a cautionary thing, maybe just practice swallowing. Anyway this is just MY experience unique to ME and shouldn't form the basis of your choices, just give context.
I got the peg tube ripped out as soon as I could swallow liquids again without the rancid taste dysgeusia (cant remember how to spell it, heh, that's great).
But anyway in terms of what you take, whether by mouth or by PEG, if you already have excess bodyweight, you should prioritise in this order: hydration, protein, nutrition, calories
(even if your feeding team at the hospital advise otherwise)
If youre not overweight, ignore all of it, you have to keep up those calories.
Anyway, protein is vital, because your body is under profound duress and needs the protein to heal itself day-by-day.
Just my two cents ?
@CaptainAustrali thanks for the reply! I was also overweight and the tube has kept my weight on. I could still stand to lose!
When were you first able to taste the drinks/shakes and have them be decent not rancid like during treatment?
The rancid taste distortion is uncommon, I think the majority of folks just get an absence of taste, or a mild 'yuckiness', but for me even drinking water was like being compelled to eat something rotten and poisonous, like roadkill or something.
It lasted through the treatment phase, and didn't start to fade until a couple of months after treatment had finished up. I'll say about 6 weeks I was able to start experimentally drinking little sips of water - and once I could take something by mouth without vomitting, I just forced myself and things started to get better faster from there.
My last treatment was Christmas Eve, and I think I had the PEG tube ripped out in March - which was scheduled a few weeks after I was already no longer using it and able to take nutrition/hydration/meds fully by mouth ..
So yeah, if I had to look in the crystal ball and guess for you - if your rancid-taste problem is the same as mine it probably indicates the more severe and unlucky end of mucositis, so I'd create an expectation looking a bit like this:
- 6 weeks out of treatment, the rancid taste will begin to fade
- from there you can start drinking and the more you do that, the better things improve
- always drink plenty of water to mitigate dry mouth, even though you find yourself peeing constantly
- a year out, spitting until you vomit will still be a major annoyance
- two years out, you'll still accumulate gross mucus from residual mucosa damage or whatever the cause, and the dry mouth makes it untenable, so even 2 years out you'll still finding yourself having to spit up mucus (solutions will depend on your etiquette I guess, but forgive me - me, I just hawk it out the car window)
- three years out, things are better, but still dry mouth and mucus are irritating - but its more an annoyance level than unbearable gross problem it was
- five years out ? hoping that it'll be an echo of what it was, and saliva/mucus/etc is all a lot better, but I'm braced that it may be a 'rest of life' problem' (the payoff being that luckily the rest of life is no longer confined to 6 months)
some of you have been asking how long before things get better. Well I am 5and 1/2 years post treatment and while things have settled there is some that will be life long.
Taste is still all over the place and really depends on degree of mucosis and also degree of oral thrush. Did they tell you this can become a problem because of the lack of saliva. I have to take a prophalatlic antibiotic to keep the thrush under control.
As mine was on the tongue with almost one side being removed and replaced with a flap from my forearm, my taste will never be the same. Big chunk of taste buds now missing. Also that part of my new tongue gets cold which is a really strange sensation.
I have what is called a woody neck as a result of radiotherapy scaring and that side of my face and neck have a different skin texture. Also because of the nerve damage where they did the neck disection, my ear is extremely sensative particularly when it is cold.
I still struggle to eat some does and often skip lunch because it is all too hard. Soups are my main go to and evrything else is smothered in gravy or white sauce. Chewing can be a problem as it makes my nose run and eyes leak. Apparently this is normal.
There are a few side effects that some experience that others don't and it really depends on where the cancer was, what surgery was done and the follow up treatment.
Some days are harder to get through even this far out but it is one step at a time, one day at a time.
Everyone will find their own way to deal with lasting issues and with support from family, friends and this forum you will make it.
As to the weight issue, I lost sixty kilos all up and have kept most of it off. I was morbidly obese before the cancer so this was my silver lining. Weight loss was due to tube feeding after op didn't agree with me so didn't get much that first week. then only eating very soft foods and soup for a couple of months. During treatment I was unable to take anything by mouth for about three weeks and just as they talked about putting a peg in, I was finally able to get some shakes and ensure down.
This is a lifelong journey and being a Thursday's child I have far to go.
Best wishes to all
I have to agree as to the advantages of a feed tube.
I chose not to have one (ok, I refused to have one installed) and I can tell you that right around week six my caloric intake fell under 900 calories a day.
For almost a week. I dropped 12 lbs and got severely dehydrated.
WAAY a painful to go.
I would take foolish pride in my being obstinate had I not kept a log of the times whatever scant food I managed to get past my throat was libricated by tears.
I soon discovered that a milk shake 6oz of milk and three scoops strawberry ice cream (320-350 calories) was doable 4 times a day with a side of two eggs.
I'm now one week past my last Radiation...started playing with solids on the 7th week, damn the tears, but it still a battle to eat.
As a postscript-Mucositis did not seem to become a real issue. Losing my ability to taste (my favorite cream cheese tastes like lard!) Really killed my appetite.
I'm almost 2 years post radiotherapy and I am almost back to my normal weight. Near the end of treatment, I stopped eating and talking (I carried a little notebook around with me). I lost so much weight that I was underweight at 40kgs - a feed tube would've been an advantage. I drank those protein drinks - they were so think that I mixed 1/2 with water but it was very hard due to a burnt tounge and loads of ulcers. I think my saliva is coming back and I can taste things OK but I have a hole in my palate that hasn't closed over so I have to wear an obdurator (getting used to it now) to be able to eat, drink and make understandable speech. Mucositis wasn't too much of an issue for me luckily.
Thank you for all of your responses! I think what I am learning is how different we all are. I also didn’t have traditional rad - I had Proton therapy which is less side effects but my Mucositis was still grade 4. I have no true pain per se even three weeks out. My biggest issue is the mucus production and lack of taste. I have been someone who only eats what they enjoy her whole life so reintroducing food that tastes awful has been impossible. I guess I will need to be more patient and accepting of my feeding tube because it is just going to take time. An unknown amount of time because there seems to be no normal when it comes to this wretched disease and treatment we all had!
my father was diagnosed with a tonsil cancer staged at T3N2B(I googled it’s stage 4)two days ago. We were told we need to do CT scans and bring results to an every fortnight’s Tuesday meeting in the hospital for the prognosis. Unfortunately we miss out next Tuesday’s meeting because we can’t get all the results ready by that day,which means we will have to wait for the following one on 11 June. I’m really anxious about the over two weeks waiting time. Because the tumor looks quite bad and seems to be very aggressive(it took 6 weeks to grow to over 4cm big). And I was also told that after the meeting on 11 June,we might need to wait again before they start the treatment. We’re living in Wollongong,I’m now considering to go to Sydney to see another specialist to see if my father can get treatment earlier since he is at a quite late stage. My question is for my father’s case,normally how long it takes from diagnosis to treatment? Will things get worse if we have to wait for another month or two to start treatment? I feel very scared and helpless now...Any answers would be much appreciate!
Hi Sheryn, Sorry to hear about your Father.
I was diagnosed mid october last year after an ultrasound then fine needle aspiration biopsy fowolled by a CT scan. I expected a medical swat team to rush me off to hospital to begin treatment post haste. It didn't happen like that though. I also had to have Pet Scan as well before treatment began as well as a 3 day stay in hospital after tonsil biopsy.
I was refered to a dentist for check up and extractions in January of this year and after further consultations I did not begin my treatment until Janaury 29 of this year. So basically it was 3 months after diagnoses that my treatment began.
Researchers estimate that for every 1 week of delay in referral, the stage of presentation will progress by 0.045 of ‘a stage’.
From what I have read online from others with the same oropharyngeal cancer it takes about 2 to 3 months of consultations and tests before treatment begins.
I wish you and your Father the best of luck.
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