Venetoclax and mouth sores: I have great news... - CLL Support

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Venetoclax and mouth sores

Eliotf profile image
4 Replies

I have great news. Beginning of July I had a Bone Marrow Biopsy and it came

back with NO CLL/SLL

I had failed FCR and went on to Venetoclax & Obinutuzumab. Obinutuzumab

finished in Feb 2018. I got Dermatomyositis (skin & Muscle) autoimmune

disorder shortly after I started Ibrutinib and when it showed up I was

taken off. My skin issues did not heal until I started on IVIG. As I weaned

myself off the steroids my mouth started getting sores. My dermatologist

are blaming the Obinutuzumab. These mouth sores are from another autoimmune

disorder called Oral Lichen Planus. It is obvious due to the striations on

the inside of the cheeks. So my question is: have any of you had Oral

Lichen Planus? OR could the Oral Lichen Planus be due to the way out of

balance B cells which are almost non-existent. Of course I read that with

thrombocytopenia people can get mouth sores also and due to me still taking

Venetoclax I have thrombocytopenia which seem normal for Venetoclax. I look

forward to hearing from you

Eliot Finkelstein

Dx with CLL May 2013

Failed FCR 2016

Stopped Ibrutinib Dec 2016 till 2/28/17 due to:

Amyopatic Dermatomyositis started Jan 2017 dx Aug 2017

Venetoclax & Obinutuzumab -Started Aug 2017

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Eliotf
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MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Eliot - Fantastic news about your BMB results, but I'm sorry about the mouth sores. I hope that your doctors find the right balance of meds to get them to resolve!

PlanetaryKim profile image
PlanetaryKim

Congrats on the BMB results! Good luck with the problem of mouth sores. You have probably been given advice to rinse mouth with a saline solution (1/2 tsp salt in 1 cup warm water) or a baking soda solution. Not curative but soothing. -kim

Eliotf profile image
Eliotf in reply to PlanetaryKim

Kim,

Salt, any kind of spice, temperature heat all hurt way too much. So no potato chips, etc. I have been doing swish and spit with oral steroids 2-3 times a day. I want to stop that too.

in reply to Eliotf

husband had successful first therapy with Gazyva 2years ago with no side effects at all. He had one dose BR this June with remission but horrible damage to counts. I am never heard of anyone having that kind of an issue taking obumu ie Gazyva

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