OK, so I have completed treatment for cancer of the tonsil, abutting the jaw and soft palate. 35 radiation treatments over 7 weeks, with adjuvant chemotherapy (3x high doses of Cisplatin).
Lost my sense of taste early on - in fact, worse, developed dysgeusia (taste distortion) the bad kind where everything in your mouth tastes rancid.
I thought I'd describe my side effects and progress now that I'm almost 3 months out of treatment (PET scan is 21 March, fingers crossed). If you've had similar cancer & treatment, I was wondering if you could share your experience ?
First Two Weeks After Treatment
An utter living hell. Pain daily (and nightly), can't keep food down, even PEG feeds. Vomitting is violent and awful, and often bloody. Swollen legs, tummy cramps, horrible constipation to the point where it feels like you're trying to poo a newborn baby (and when you're done, blood splashes into the toilet - sorry). Horrible mucositis .. so pain within the mouth & throat, and worse, a thick ropey saliva that you have to spit out constantly. External burns to the neck are painful and require dressing with intrasite gel.
One month after treatment
The constipation, water retention and external burns all clear up in the 3-4 week mark, but the mucositis is still bad. Have to constantly cough up phlegm, and can't eat or drink (because of the foul taste and feeling that the ropey phlegm is accompanying the food down your throat). Still occasional vomitting but not as bad.
2 months out of treatment
The mucous starts to back off, but is replaced by dry mouth - waking several times at night with an arid dry mouth. Gross mucous is still there, but it's less intense - so I can get the PEG tube yanked out (because I can now tolerate liquid by mouth, even if I can't eat .. so I start drinking the formula I'd normally push down the PEG). Begin to detect some returning taste, but it's maybe 40% of what it was pre-cancer.
Third month of treatment
I have to be grateful that everything has gotten progressively better, but I find myself wondering if I'll hit a ceiling.
For example, the mucous is much improved, but it's still there, as is the internal pain in the back of the throat, and the occasional coughing up blood. In terms of the severity, I'd say it's about 20% of what it was at it's worst, but the burning question for me is: please tell me this is not as good as it gets - will this mucous problem go away entirely ?
The dry mouth is quite bad, but manageable. Trying acupuncture as there are some international studies supporting efficacy with dry mouth. Just need to always carry water around and keep a bottle by the bedside .. the way it interrupts my sleep is demoralising, but I can live with it.
My sense of taste has improved a bit - it's maybe 50% of my pre-cancer levels .. basically I can taste a shadow of what food was pre-cancer, and the same question that applies to mucous also applies to taste: will it recover completely ?
When I try to eat now, I can swallow solid food, but I can't eat for pleasure, because, although I can kinda taste the food a bit, as I chew it (necessarily mixing in water so I can swallow) it feels like its being tainted by the mucous, making swallowing the food a bit .. gaggy. With willpower, I've eaten chicken wings, some apple, yoghurt .. but it's unpleasant at this stage.
Also, weirdly, I seem to have lost my ability to vomit. I'd never have thought that was a bad thing .. but I kind of miss it when I'm gagging and coughing, and something starts to come up .. but I can't get it all the way up (perhaps due to no lubrication), it just kind of lodges in the throat and I have to swallow it back down. Have you experienced this ?
Just curious to hear the experiences of someone in a similar boat .... thank you.
My husband is only on week five of finishing chemo and radiation but is following everything you have gone through so far. He has done himself some damage as
he had just started to be able to eat solids again and went too hard and hurt his throat vomiting and felt like he had something stuck down his oesophagus. He has been in bed most of the day with hot and cold shivers . I was wondering if this was side effect of coming off morphine etc as he was feeling like he didn't need it as he is just on pain patches at present.
Sounds Like things are moving on and as we discussed before we had very similar treatment, in my experience the mucous went away but then left a dry mouth. I'm sorry but I didn't document things as you have so the timing evades me some what. I couldn't take anything remotely acidic for a long time (I think at least 12 months). I remember eating a mango ,and looking so forward to at but it burnt my mouth. I lived on weetbix with honey for ages. I was a Asian food lover but chilli was out of the question for years as was a glass of wine. The good news is it did come back I enjoy a good green curry now and a glass of red. It took 8 years ( sorry ) for my tastes to return to pre treatment, and it took some months for me to develope a palate that allowed me to enjoy food again. I had and still do have acupuncture ( I get a top up every two years or so), this was a great success for me after my first try I was able to eat a pice of toast ( small pleasures ). They put needles in my index fingers and my ears over two consecutive days and "spit" came back. It's definitely not pre treatment but much better than it was. I hope this gives some hope , hang in there it got better for me but hard yards for sure over a long time.
That doesn't sound like fun @CaptainAustrali, I do hope it improves over time. I did a bit of scouting for you and found this publication that has some information that may be of assistance. Have you mentioned it to your treatment team?
I do hope your scan on the 21st goes well, please do let us know how you get on
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