had first chemo yesterday. did not realise that after cool cap, i would be sent home with soaking wet hair (with shampoo/conditioner in) to travel home in torrential rain. i would have brought a hat if i'd known. it was torrential rain outside when i left and i had no raingear, wearing sandals, got back sneezing. i thought i was supposed to avoid catching anything ...
anybody know what can be done to prevent oral mucositis? my handout (one of many given to me after i was being pushed out the door - i'd been there 8 hours so could have read & digested these in this time - says 'no specific treatment for oral mucositis once it has developed' - this implies that there could be a treatment to prevent it. and it seems everyone on my regime will get it. anybody know of anything?
oh and someone has posted something re finding girls in my area. hmm. it's an ovarian cancer forum. even if i were gay, would i really feel up to paying for some female 'company'? curious.
my gp is refusing to prescribe me laxatives, even though i've barely had a bowel movement since my operation on 30 july, and even though it's a side effect of the chemotherapy, saying i can buy them over the counter. that'd be about £300 for the duration. now i have cancer, i qualify for free prescriptions. and i also had already paid £120 for a pre-payment card, which they won't cancel till i receive the certificate for free prescriptions. anybody else have this problem?
sorry for all the questions.
candy
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I'm sorry to hear that you had such a difficult experience when you attended for chemotherapy yesterday.
There is information about preventing and easing oral mucositis on the NHS website at nhs.uk/conditions/mucositis/ and our forum members may be able to share their experiences and suggestions.
I haven't seen the post that you mentioned about finding girls in your area. If you're ever concerned about anything that's posted in the forum, please do let us know so that we can look into it.
I'm sorry to hear that you're experiencing constipation. Your team will be able to advise you about symptoms and side effects of treatment, so you can speak to them if you need help with managing your symptoms. I hope that you can get some help to manage and treat your constipation soon.
If there's anything that we can help with, or if you'd like to talk anything through, please get in touch with our Support Service on 0800 008 7054 or 07503 682 311 or at support@ovacome.org.uk.
Are you having carbo / taxol as your treatment? I didn’t get oral mucositis butI did follow the advice on the NHS website that Julie sent you the link for. I followed the advice for every chemo I’ve had and just once, for a few days only, I had some small blisters on the edge of my tongue, which soon disappeared.
Don’t envy you wearing sandals in the rain we had yesterday. Hope you managed to get warm once you got home.
Cryotherapy may or may not help, but probably can’t hurt. While you’re getting infused, you can ask for a cup of ice chips to keep in mouth. My mum is doing this as we just learned about it.
She had them quite badly when undergoing first line treatment of carbo-taxol, and the doctor prescribed something called magic mouthwash. The formula is compounded by the pharmacist and includes several ingredients to prevent infection and provide a bit of relief.
We also got ice socks and gloves for this course, as the doxil is giving her hand-foot syndrome, aka palmar-plantar erythrodysesthesia. Again no one mentioned these side effects until she had developed them, but after doing some research, it turns out the cold therapy during infusion can be a preventative in some people.
I hope sharing and passing on the information can help you and others avoid some of these nasty, painful side effects of treatment.
My hospital gave me a bottle of Corsodyl at the start of chemo back in March this year - I didn't use it, I can't, I have a bad reaction to it, it burns my mouth and causes me problems even when I'm not on chemo. Instead, I found a 'recipe' on an Australian cancer website for sore mouth, and I used it all through my chemo - helped a lot. I'm still doing it because I suffer with sore dry mouth anyway,regardless of chemo, and it does seem to ease it. It's just half a teaspoon of bicarbonate of soda, quarter teaspoon of salt (optional, for if you've got sores or lacerations) mixed in a mug of water. I usually pour boiling water on first, then top up with cold... I did gargle with it, but it should not be swallowed, obviously... I never had a single ulcer during chemotherapy, though my tongue did crack in the middle,but that happens to me normally at times.
The odd thing is, 2 years ago when they were badgering me to have chemo, they actually gave me two bottles of Benzydamine 0.15% mouthwash to use during chemo because I already suffer with dry mouth. I refused the chemo so never used it, but it seems they don't dish that out any more like they used to. Or maybe they do if you get really bad mouth ulcers or something during chemo, not sure.
One thing's for sure - if you already have dry mouth problems pre chemo, Corsodyl is about the worst thing you can use... unless you like the sensation of a flamethrower inside your mouth...😭
Thanks, everyone. Second day after chemo, already lost my sense of taste and mouth feels awful. I will try everything you suggest. Really interested in the magic mouthwash - was that someone in the UK?
I can't believe they gave you Corsodyl, Miriam. Now it's listed as something you should definitely avoid with chemo.
Ok so I have the PICC line – we’ve called her Pixie, the cancer is Copernicus. Do they ever take this sharp metal anchor out? It keeps catching all the time.
Typical NHS. I got the PICC on Wednesday, and then was given a slip to hand in at GP surgery for the waterproof sleeve, asking the doctor to prescribe one which would get sent to the chemist although Thursday I was at & en route to hospital for 10 hours. Sister took slip to doctors. Called up on Friday and now it’s on order at pharmacy but will not arrive till Wednesday as Monday is Bank Holiday. I need it as can’t shower without it – am told to use cling film. They’re confusing me with someone who’s domesticated enough to cook food and cover it for the fridge. They want me to do everything online but can’t send an email to the GP surgery. They usually give chemo patients thermometers but now can’t source them so we have to buy our own. Why not just send someone to the shop to get some?? This is my DIY cancer care. Bring Your Own: blanket, painkillers. Buy Your Own: digital thermometer.
I mean, I have scalpels at home from my days in production - perhaps I should have saved the NHS some money and had a go at the op myself! But apparently the PICC is easier for the nurses because you can disconnect/reconnect yourself when you go to the loo but I didn't realise I'd still have the drip/IV stand, I thought it would disconnect at the PICC.
They tell you nothing. On the wet hair day, I could have got home and dried my hair with a hair-dryer and only learnt by chance this would be bad.
Good lord,they usually give patients thermometers? My hospital doesn't, never even mentioned thermometer at all, but I already had one anyway, fortunately, because back at the end of March, you couldn't get one for love or money, they were in very short supply,even on Amazon.
You're right, they don't tell you much about the twiddly bits, like not using a hair drier (I did use one) and I had to ask whether I could go in the sun or not - one nurse said yes so long as you keep the infused arm out of sunlight, but the senior chemo nurse said no, absolutely not... If I hadn't asked, I wouldn't have known...
I suggest you don't shower till you get the sleeve - I had to stop showering after the third chemo session anyway. A lot of my skin sort of fell off in the shower and was very, very sore,but okay if I didn't put water on it,so I just washed the essential bits for as long as possible, though once it got so hot, I just had to shower. Which meant more peeling and burning sensations... and no,I wasn't using a harsh shower gel, I had switched to an innocuous non soap based wash instead. Anyway, my point is, its not essential to shower every day...
Your skin started to come off? That doesn't sound good. Were you also on Paclitaxel/Carboplatin? Yes. Last night I gave up on the shower and my sister washed my hair over the basin.
I just feel like without everyone here, we're learning stuff piecemeal that the doctors and nurses should already know about. I suppose it's different because of Covid too but would be great to have a socially distanced area for cancer patients to consult each other. Guys has got the space.
No, just on carboplatin alone - chemo nurse said my skin must be extra sensitive because she'd not heard of that happening before. Which I suppose is possible... anyway, not had chemo now for just over 6 weeks and skin's much better, no peeling now.
Magic mouthwash person was me in the US. I looked it up online and there are formulations that can be compounded, which match what she was given. It includes lidocaine and a coating agent, among 1-2 other things. Hopefully your care team might have a look and suggest something similar. It wasn’t magical, but swishing it around it did help the pain and discomfort and she didn’t lose sense of taste. Mucosal lining is back to full normal. Best of luck finding some relief soon.
When I had the cold cap I wondered about it still being wet when finishing the session. I went prepared with a thin shower cap- the sort you get in hotels. I put on the shower cap after taking off the excess with a towel then put the hat on over the thin shower cap. The thin shower cap stops the hat becoming soggy. I also took a small towel to get the excess stuff off my hair. All this in a separate bag all ready for the chemo treatment.
Ok - thanks, everybody. Went to A&E, story later, but a nurse there who'd had cancer ++ chemo recommended a mouthwash called Sarakan that you get from Holland & Barratt. Might go that way as it's probable I won't get anything from my team.
A friend from US sent me a care package including a digital thermometer.
Otherwise most everything that can go wrong has gone wrong so far.
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