Struggling with oral mucositis during chemo. Please help!

Hi everyone!

I'm really struggling with oral mucositis and it sets off on day 5 post chemo for breast cancer. I'm having two more chemo sessions and then I'm done hopefully cause it's surgery and maintenance treatment afterwards.

Along the past 5 months of chemo I've always developed oral mouth ulcers and sore mouth to the point when eating and swallowing was almost impossible. I've used everything : from Corsodyl and Difflam which I can't tolerate anymore because they contain alcohol, to regular Calphosol mouthwash, Aloe Vera& hialuronic acid mouthwash and gel, Lidocaine gel and camomile tea gargling. Is there anything else that I could be using to make this easier for my last 2 chemo sessions? Can't have the ice pops during the sessions because I always end up with tonsillitis and that would certainly not help my throat.

Please if anyone has some ideas share with me, I'm sure so many chemo patients are struggling with this. I was even suggested to swab the painful mouth ulcers areas with Oramorph it's just that was my last solution, I know that morphine can cause addiction plus don't know how will I tolerate the taste... my whole mouth lining and mucosa is burning, drinking water gives some relief but not durable, not to mention eating....can't eat much unless it's completely bland and soft, purée.

  • I'm really sorry to read how much trouble this is causing Victoria. It sounds very difficult to live with.

    Hopefully some of our members who have experienced this will offer their tips and advice to you soon but in the meantime I hope these two pages on our website will help. Just click here and here to find out more.

    Our cancer nurses are also available to help on 0808 800 4040, Monday - Friday between 9a.m - 5p.m so do give them a call if you'd like to get their thoughts on this.

    I really hope you can find a solution and that the rest of your cancer treatment goes well.

    Kind regards,

    Steph, Cancer Chat Moderator

  • I've read all about it and done so much research, just wanted to hear from the people struggling with it...

    It's such a debilitating side effect of the chemo and I don't understand why doctors don't offer more support on this, no one told me about mucositis when I started chemo and to my shock it's been the most painful and horrific experience from all this process! I'm terrified of the next cycle, my mouth is still healing from the previous ulcers just to be bombarded again next week, how can I even prevent from this happening again? It seems that everything that I'm using gives me relief for some minutes but that's about it. 
     

    Would reducing the dosage of Docetaxel avoid hiting me so hard? Would the ulcers be less likely to reappear or maybe they wouldn't be so painful ? I'm really pushing my limits here, I just can't bear the pain anymore!

  • Unfortunately I can't answer these questions but if you get in touch with our cancer nurses on the number I gave you in my previous post they should be able to give you the answers you're seeking. If you're unable to ring them then you can make a post in their section of the forum just here.

    I'm sorry I can't be of more help but I really hope you can get some relief from the pain this is causing and all goes well with your next chemo cycle.

    Kind regards,

    Steph, Cancer Chat Moderator