Horrible Mouth Sores

[Kim1958]

Hi ladies I am on a clinical trial having chemo (Caelyx) and immunotherapy (Avelumab). I have developed many large canker sores in my mouth that are really painful. It is hard to eat or drink. Has anyone experienced this, and if so, what did you take to relieve the pain? Thanks Kim xx

[lorraine71-Australia]

Hi Kim, I was on Caelyx for 6 month and had bad mouth sores .my oncologist suggested to boil water and put into a jug and when it cools add 2 tablespoons of Bi-Carb, you need to rinse your mouth continually while on caelyx to keep it at bay.

I also mixed up some salty water and kept rinsing my mouth through the day, on the days I did not use Bi-Carb you need to keep it up. I know you can buy over the counter mouth wash here in Australia called Biotene I also used this..... all the best remember continually rinse that is why Bi-Carb and Salt are helpful they are natural anti- bacteria .

Best wishes Lorraine xx

[Kim1958 in reply to lorraine71-Australia]

Thanks so much Lorraine. I have been rinsing with salt and water. I will see if I can find a suitable mouth wash and try the Bi-Carb as well. Kim xx

[Marypacific]

Kim, I am on the same clinical trial in the US. I also got horrible mouth sores after my third dose of Caelyx ( we call it Doxil here). I was prescribed a mouthwash called "magic mouthwash", with lidocaine, benedryl and Maalox. It was mildly helpful. I could barely sip water and ate very little, very soft foods. I mostly lay still in bed and took pain meds. I found moving my tongue the slightest bit hurt the most. The sores actually went away within a week, so it heals pretty quick. My Caelyx has been reduced by 25% ever since and I stopped getting the mouth sores. How are you doing on the trial? I have been on it for four months and my tumors (in my chest) have reduced by fifty percent.

[Kim1958 in reply to Marypacific]

Thanks for all the info. I will see if I can get some sort of prescription mouth wash from the oncologist. That is wonderful that you have had such success on the trial! I am having a scan on June 20th to see if the tumours are shrinking. Fingers crossed!!! Kim xx

[Hidden in reply to Kim1958]

Best of luck with the scan, I would suggest difflam mouthwash or spray it deadens the mouth and helps heal the ulcers

[Kim1958 in reply to Hidden]

Thanks so much for the suggestions. I like the idea of the spray. I will post about my scan when I get the result. Kim xx

[Hidden]

I'm on caelyx at the moment. I was given Difflam mouthwash just in case. But I haven't had to use it because of the salt and particularly bicarb regime....

I think with caelyx you need to assume you'll get all the side effects and act to prevent them rather than waiting till you've got them. See my fairly recent replies for a list of tips.

Hope you crack it soon and get good results from the trial.xx

[Kim1958 in reply to Hidden]

Thanks so much for your response. I am going to try the bi-carb regime and talk to the oncologist about a prescription mouth wash. Kim xx

[85live4ever]

Hi Kim, I am on Caelyx & Carbo as well as itching every where I also have a mouth full of uclers. I was given difflam & at first it worked well but with uclers going all the way down my tongue it's not working so well. I have been using stews been eating very little. Iglu has been helpful also bonjela has been slightly better. Salty water is ok you just got 2 keep trying anything that helps you. Good luck lets hope we can all be ulcer free soon take care Cindyxx

[Kim1958]

I'm sorry to hear that Cindy! You are having a rough time!!! I have a rash everywhere and ended up with a nasty blister between two of my fingers. I've been using Udder Cream with some success. It hurts to eat for me as well. I don't want to loose weight so may get a meal/nutrient replacement liquid to drink. I'm using salty water and I'm going to try the bi-carb regime and talk to the oncologist about a prescription mouth wash. Hope you are ulcer free soon! Kim xx

[85live4ever in reply to Kim1958]

Hi Kim, what us ladies have to put up with is very challenging but we do it & do it as well as we can.

I hope you are able to sort this rash out & keep your weight on.

Itching, mouth ulcers, blisters up my nose & in the lid of my eye as well as buzzing & pain in my ears. I have already lost a tooth & have bleeding gums.

What's next on Caelyx? We do all this so we can have more time on this earth. We all want the same thing to kill this cancer & live our lives the way we want to live them.

Let me know how you do on bi-carb regime. I am taking so much at the moment but if things get worse I will be given that a go as well. Take care Cindyxx

[Hairlessbeauty]

Hi,

I had the same problem on caelyx. I've tried everything. Bonjela was giving me the biggest relief while eating.

To get rid of ulcers I used to use Kalanchoe pinata extract. It was miracle!

Take care, I know how painful they are and how hard is to get rid of them

Good luck 🤞

Zaneta xx

[Kim1958 in reply to Hairlessbeauty]

Hi Zaneta Thanks for the advice. What is Bonjela? Is Kalanchoe piñata extract something you can get at a store? I will look into both of them. Take care Kim xx

[Hairlessbeauty in reply to Kim1958]

Hi Kim,

You can get bonjela in pharmacy at the counter, it's sticky, strong antiseptic gel which you put on the ulcer. It seals the ulcer and its much easier to eat and drink.

The extract... I'm not sure can you get it in a Ireland. I got it in Poland.

Good luck 🤞

Zaneta

[Kim1958 in reply to Hairlessbeauty]

Thanks Zaneta! I will look for it. I will have to check with my pharmacy about the extract. I am in Vancouver, Canada. Kim xx

[Natalies26]

Hi Kim, I am also on the trial on caelyx and Avelumub, I started just before Christmas and would be interested to hear how you progress on it. I haven't had mouth ulcers but the advice from the other ladies sounds good. I developed a really painful rash which thankfully has now gone and have had my last caelyx so am now on Avelumub alone. I get the results of my last scan this Tuesday but up to now have shown a small improvement fingers crossed. Hope you get good news from your scan Sheila x

[Kim1958 in reply to Natalies26]

Hi Sheila I have a rash as well, and when the skin between my fingers peels, there are nasty blisters underneath. I have a scan on June 20th. Can you let me know about the results from your scan? Thanks Kim xx

[lesleysage]

Hi Kim, just catching up with posts! My oncologist prescribed a thick liquid mix of local anesthetic + steroid used to help patients receiving treatment for mouth cancer. Can't recall the name (4years ago since dose dense carb-taxol + Avastin which was the cause for me) which I dabbed on with a cotton bud after gargling with dispersible aspirin (don't swallow the aspirin) after brushing my teeth after eating each 'meal'. Sounds tedious but it helped a lot.

Lesley

[Kim1958]

Thanks Leslie. I am finding that the mouth rinses that I have been prescribed are working for me. I will keep your treatment in mind to mention to the oncologist when I see him next week. Kim xx

[lesleysage in reply to Kim1958]

Morning Kim,

Very pleased you've found something which is giving you relief. Enjoy today.

Lesley

[Kim1958]

Thanks Leslie. You have a great day!

And I will say Good night (LOL I am in Canada and it is midnight June 13th here)

Kim xx