Awful mouth sores, lip blister from Imbruvica - CLL Support

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Awful mouth sores, lip blister from Imbruvica

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Some nice people here yesterday suggested I try selenium and organic oil of oregano (on toothpaste while brushing) for my painful tongue sores and lip blister. I bought both and hope they work asap. Also hoping the Meloxicam I started taking on Friday kicks in soon. This pain is awful. Rinsing with baking soda and hot water helps, but I work full time and only do that at home.

I have an appointment with my oncologist tomorrow and of course, with discuss all this with him.

I'm going on a cruise in six weeks and really want these physical issues to be gone by then.

I was diagnosed with CLL in 2011 but didn't need anything more than two check-ups a year until my WBC and other markers caused my oncologist to put me on Imbruvica on Dec. 19. Since then, my markers have improved and lymph nodes and spleen have decreased in size and my doc is optimistic. But Imbruvica is causing major pain.

I prefer natural remedies instead of all these damn pills but whatever alleviates the pain, I will do.

Also, the nurse who calls me bi-monthly and works with Imbruvica knew nothing about the mouth sores/lip blister side effect. Are you kidding me? I Googled "Imbruvica and mouth sores" and got back many results.

I hope, as my late grandmother said, "This too shall pass," is true in this case.

Thanks for listening and my best to others in my situation...I know there are many.

16 Replies
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Hi Matt have you tried difflam mouth wash,pastels or spray. They work well for me. Bonjella complete and iglo are also good.

Enjoy the cruise.

Ann

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in reply to annmcgowan

Will ask my oncologist about it tomorrow. Thanks!

Cllcanada
CllcanadaTop Poster CURE Hero

Have you consulted a doctor about this?

Not uncommon on Imbruvica (ibrutinib) as your immune system is under attack to have Herpes Simplex reactivation and or fungal infections like Candida aka thrush...

Some patients have reported relief from a product called Magic Mouthwash... only available in the U.S. , I believe.

mayoclinic.org/tests-proced...

Get it checked, don't want it lingering... bon voyage!

~chris 🇨🇦

MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Cllcanada

This is what I have seen, in the past, for “Magic Mouthwash”. I don’t know whether pharmacists outside of the US would be allowed to mix it.

What are the three ingredients in magic mouthwash?

Magic Mouthwash

1 Part viscous lidocaine 2%

1 Part Maalox.

1 Part diphenhydramine 12.5 mg per 5 ml elixir.

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in reply to MsLockYourPosts

My oncologist today prescribed Magic Mouthwash. Thanks!

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in reply to Cllcanada

Asking my oncologist about it during my checkup tomorrow. Thanks!

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in reply to Cllcanada

Thanks. Will ask my oncologist about that tomorrow. Also trying organic oil of oregano on toothpaste while brushing, as someone here suggested yesterday. In the meantime tonight I bought Orajel mouthwash for sores.

johnl
johnl
in reply to Cllcanada

They offered me Magic Mouthwash at M D Anderson. The cost at their Compounding Pharmacy was $148 a bottle. I passed, not covered by insurance.

john

I too suffered from mouth sores and infections when on full dosage of Imbruvica (420mg). It is the worse and my oncologist gave me a break from Imbruvica for a couple of weeks and lowered my dosage to 280 mg and have not had any problems since.

Toothpastes containing laurel sulphate have been linked to mouth ulcers and blisters on the lips... try changing to one without this. I no longer have these blisters....

My daughter had horrendous mouth sores during treatment for primary mediastinal B cell lymphoma. She used 6 drops of the highest potency CBD oil (no THC content) under her tongue as needed, and it was a godsend for the pain. It didn't have any impact on healing the mouth sores, but made it possible to swallow. Good luck!

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in reply to yazbe

yazbe: Thanks! Several people have recommended I try CBD oil and I will. My biggest issue now is one sore on the back of my tongue. Plus it’s a little hard to swallow. Do you know the dosage and brand your daughter uses?

yazbe
yazbe
in reply to Hidden

Not sure ~ I'll ask her & let you know.

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in reply to yazbe

Great, thanks!

The first time i got the mouth sores they hurt like a son of a gun. Did the thing with mouth wash, salt water, etc. the second time i got them i also was coming down with a cold and cough. I started taking Ricola throat drops. The sugar free ones. I would take 2, one after the other. Every 4 hours. I couldn't believe they actually help the pain of the mouth sores. The next time i got them i took the throat drops again. And sure enough they really helped and i got a lot of relief. I don't know what is in them that would help. But believe it or not they really did. So now i keep a supply handy. You might want to give it a try. I use the Lemon Mint ones. And just suck on them.

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in reply to papatom

That’s surprising that cough drops help with mouth sores. I have those exact ones from recently having pneumonia but haven’t been using them often. I will resume now. Thanks.

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