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CLL Support Association
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Ibrutinib mouth Soars

Ibrutinib does cause mouth soars. I had tons of them and they were quite painful. I showed them to my oncologist and he gave me a script for lidocaine 2% mouth rinse. It does taste horrible but mix it with Benedryl and it helps tremendously. He also told me to eat soft foods when I have soars. Mine would come and go so keep your chin up fellow warrior.

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May I suggest you check out the link "Ibrutinib and mouth sores anyone?" in the Related Posts section at the top right of this page? My response suggests an effective alternative to medications. Good luck.

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i dealt with horrible mouth sores after starting on Ibrutinib. The drug triggers virus activation and many mouth sores are viruses. after extensive testing and virus cultures they discovered my virus was cocksackie. and the best cure was a series of gamma globulin infusions. problem went away and didn't come back, now 4+ years running.

tell your oncologist to contact dr. john byrd at ohio state, the principle investigator on ibrutinib. he has the most experience with this side effect.

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Hi larry

my wife was diagnosed with cll an year ago. her lymphosites count is slowly rising.

just wondering at what stage did you doctor start ibrutinib?

and did it cure it or you have to take it everyday?

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I started ibrutinib due to bulky nodes in my throat which were blocking my esophagus. I had already had traditional chemo--PCR and BR--which failed to shrink the nodes. I have 11q deletion. I have been on ibrutinib for 4+ years and am in PR. No idea if I will need to continue indefinitely. Hoping that new clinical studies combining ibrutinib and ventoclax will prove a "cure."

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thanks for sharing

our doc. mentioned ventoclax makes CLL disappears for a while but it comes back.

however 2 gen is on trial now.

my wife has 13q deletion

did you try any natural therapy?

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not now. years ago i tried green tea lozenges and other natural elements, but my hemoc said to stop them when i started chemo. some of the natural stuff is counter indicated when having treatment. fine during watch and wait, though.

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I used Oregano oil and it worked well. A drop on my tooth brush then rinse it off before brushing since it is very strong.

Be well,

Hoffy

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