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If anyone can help - hormone treatment

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User
Posted 18 Mar 2025 at 15:20

Hi everyone 

A small issue in the grand scheme of everything but one that is getting me down. Just finished my brachytherapy and radiotherapy but have real issues with either oral thrush or dry mouth/ white tongue. I’ve been treated with anti fungal meds which did nothing and am now trying to basically hydrate the mouth as much as possible. Seen some improvement and at one point was all clear but now back with a vengeance 😔 this started about 2 months after starting hormone therapy  and now coming up to 6 months. GP keeps giving me nystan and/ or flucanazole with no effect. I’m trying brushing more often, non alcohol mouth washes, hydrating, ice cubes,natural yoghurt, cider vinegar all to no end. Also given up dairy and wine 😢. I’m on zoladex, abiraterone and 5mg prednisone.  Has anybody had similar experiences and has anyone found any solutions. Thanks for any help and love to everyone out there going through this.

 

Thanks

Stuart

Edited by member 18 Mar 2025 at 16:17  | Reason: Updated info

User
Posted 18 Mar 2025 at 18:18

Not something I've come across, although it is a known rare risk.

You need to talk with your oncologist. It could be the prednisone, which suppresses the immune system. However, you mustn't stop taking it without a different drug plan - it's essential with the other drugs you're currently on.

User
Posted 18 Mar 2025 at 20:16

Hi Stuart

I had this last year and it really gets you down. My tongue and throat was roar. First I was on Nystatin, which did absolutely nothing, followed by Fluconazole, which again did nothing initially. On my third week of Fluconazole I was also given Betamethasone soluble tablets to gargle for 5 minutes, 3 times a day. Well, it worked and started to heal. Trying to hold liquid in your mouth, without swallowing for 5 minutes is an art in itself! Speak to your GP or Oncologist and see what they say.

Best wishes,

Seb

User
Posted 18 Mar 2025 at 21:19
Hey Stuart,

Touch wood and fingers crossed, it's not come back and I hope it stays that way. It completely messes with your tastebuds, not to mention tongue sensitivity, so it was great to eventually get my tongue back! Also, I was warned off Corsodyl as it made matters worse. Prednisone is known to trigger it in combination with treatment in some people, but as Andy said, it's a key part of your medication.

Best,

Seb

User
Posted 20 Mar 2025 at 20:34

Well. Betamethasone is apparently out as it’s not ulcerated said the GP. Back on yet another dose of flucanazole 🤷‍♂️ I’ll try the oncologist next week. Thanks for all the help though ☺️

User
Posted 20 Mar 2025 at 21:01
Stuart

I'm sorry to hear that. Definitely speak to your oncologist to see if he could maybe prescribe it for you or he might have another solution That's really frustrating. I had some intermittent bleeding on my tongue initially, which had stopped prior to being given the Betamethasone.

I would really express how it's getting you down on top of what you're already dealing with and wouldn't it be worth trying?! One thing I have learnt since my diagnosis last year is that you have to be pushy.

I'm sorry I can't offer any further advice because I know how uncomfortable it is. I hope the rest of your treatment is still going well!

Best

Seb

User
Posted 23 Apr 2025 at 22:08

hope you getting better now , i still learning about this things thanks in advance guys

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User
Posted 18 Mar 2025 at 18:18

Not something I've come across, although it is a known rare risk.

You need to talk with your oncologist. It could be the prednisone, which suppresses the immune system. However, you mustn't stop taking it without a different drug plan - it's essential with the other drugs you're currently on.

User
Posted 18 Mar 2025 at 19:41

Thanks Andy, I have spoke to the oncologist and the natural yoghurt was suggested but I’m back there next week.

 

thanks again

 

stuart 

User
Posted 18 Mar 2025 at 20:16

Hi Stuart

I had this last year and it really gets you down. My tongue and throat was roar. First I was on Nystatin, which did absolutely nothing, followed by Fluconazole, which again did nothing initially. On my third week of Fluconazole I was also given Betamethasone soluble tablets to gargle for 5 minutes, 3 times a day. Well, it worked and started to heal. Trying to hold liquid in your mouth, without swallowing for 5 minutes is an art in itself! Speak to your GP or Oncologist and see what they say.

Best wishes,

Seb

User
Posted 18 Mar 2025 at 20:32

Hi Seb,

Thanks so much. It’s only a small thing in the grand scale but as you say really is getting me down. During radiotherapy I was more concerned about this than the radiotherapy side effects which was silly. Will try and get an appointment with the GP and give this a try. 5 minutes sounds challenging but genuinely relieved someone has a remedy that isn’t sucking sweets. Can I ask if this was permanent or temporary?

Can’t thank you enough and fingers crossed

 

Stuart

Edited by member 18 Mar 2025 at 20:36  | Reason: Missed question

User
Posted 18 Mar 2025 at 21:19
Hey Stuart,

Touch wood and fingers crossed, it's not come back and I hope it stays that way. It completely messes with your tastebuds, not to mention tongue sensitivity, so it was great to eventually get my tongue back! Also, I was warned off Corsodyl as it made matters worse. Prednisone is known to trigger it in combination with treatment in some people, but as Andy said, it's a key part of your medication.

Best,

Seb

User
Posted 18 Mar 2025 at 21:38
Once again thank you so much and thanks again.

Stuart

User
Posted 20 Mar 2025 at 20:34

Well. Betamethasone is apparently out as it’s not ulcerated said the GP. Back on yet another dose of flucanazole 🤷‍♂️ I’ll try the oncologist next week. Thanks for all the help though ☺️

User
Posted 20 Mar 2025 at 21:01
Stuart

I'm sorry to hear that. Definitely speak to your oncologist to see if he could maybe prescribe it for you or he might have another solution That's really frustrating. I had some intermittent bleeding on my tongue initially, which had stopped prior to being given the Betamethasone.

I would really express how it's getting you down on top of what you're already dealing with and wouldn't it be worth trying?! One thing I have learnt since my diagnosis last year is that you have to be pushy.

I'm sorry I can't offer any further advice because I know how uncomfortable it is. I hope the rest of your treatment is still going well!

Best

Seb

User
Posted 20 Mar 2025 at 21:15
Thanks Seb,

Will do next week. Really appreciate the advice. So far so good 😊

Thanks so much and hope your treatment continues to go well.

Thanks Stuart🙂

User
Posted 23 Apr 2025 at 22:08

hope you getting better now , i still learning about this things thanks in advance guys

User
Posted 23 Apr 2025 at 22:49

Hi original.
A lot better than before. Still not sure what it is but it’s not oral thrush. Tongue scraper, sucking on frozen pineapple and keeping the mouth lubricated with water and mints seems to have got it under control finally so feeling a lot brighter.
Take care
Stu

 
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