Ibrutinib and mouth ulcers

[GD67]

Hi everyone. Seasons Greetings!

I’ve been on Ibrutinib for about a month. All going pretty well but I’ve got a very unpleasant sore mouth/mouth ulcers...has anyone else experienced this?

Georgina

[Jooby59]

I have had loads before and after being diagnosed with CLL - never managed to control them. Then someone on this site recommended Oil of Oregano and they have totally gone! Bought it from Amazon. Two drops on my toothbrush after using Aloe Vera toothpaste, swill it round and spit it out. Job done! Good luck.

[GD67 in reply to Jooby59]

Thankyou. Will look into the Oregano Oil. All the best.

[Hoffy in reply to GD67]

Worked amazing for me as well!!

[annmcgowan]

Hi I get them with ibrutinib but not so many now, 21months in. I find Gengigel mouth was as a preventative helps and Difflam when I have them.

Good luck

Ann

[GD67 in reply to annmcgowan]

Thanks Ann. I’ll look into that as well. Only been on Ibrutinib for a month...all good apart from this. Lymph nodes on my face and neck practically gone after the first two weeks! Start Venetoclax mid Jan.

All the best for the rest of your treatment. Georgjna X

[Hidden]

I regularly have sores on my tongue and on the inside of my mouth. I had them for a year or two before diagnosis. Sometimes they make speech difficult, for which my husband is no doubt grateful.

[GD67 in reply to Hidden]

😂 mine too! What do you do to make them better? X

[AussieNeil Administrator in reply to GD67]

See: healthunlocked.com/cllsuppo...

[GD67 in reply to AussieNeil]

Thanks...some useful info there.

[Hidden in reply to GD67]

First thing I do is avoid potato crisps. They seem to make things worse. I use a UK gel called Bongela. It stops them hurting and I wash my mouth out with salt and water after I have eaten

[GD67]

Hi again Jooby 59...do you recommend any particular Oregano Oil? There seem to be loads out there!

Georgjna X

[Jooby59 in reply to GD67]

The one I use is Organic Oil of Oregano 60ml made by Natural Factors but sadly it seems to be out of stock on Amazon. Too many people have realised how great it is!

[W00dfin]

My oncologist prescribed “magic mouthwash”. Works fast.

[GD67 in reply to W00dfin]

Thanks! I’ll ask my haematologist about it....

[Emcee1 in reply to W00dfin]

Magic mouthwash for me numbs the ulcer but has not helped in removing it. Does relieve the pain

[W00dfin in reply to Emcee1]

I am so sorry 😐 It has always worked for me. Be sure to use it several times daily.

[Mayor44]

Unfortunately one of the ingredients in ibrutinib, laurel sulphate has been linked to mouth ulcers... this is found in most toothpastes as well... not much one can do ...perhaps at least use a toothpaste without this to lessen the dose ....

[Gisygirl]

I have gotten blood filled mouth sores...but they last 24-48 hours only. Sometimes, they bleed during the night, and I find blood on my pillow.