Support for treatment with Ibutinib - CLL Support

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Support for treatment with Ibutinib

Tapps profile image

Diagnosis in 2012, treatment with GAZYVA in 2015.

Now starting Ibutinib. July 2020

IgVh Unmutated 17p negative

Mouth sores already!

13 Replies
cllady01 profile image
cllady01Volunteer

Welcome, Tapps.

If you will read the posts in the following link, you will find quite a few who have had mouth sores/ulcers and as many or more suggestions for help with them.

I have not had the experience, so can only say I hope you get relief and that it will be a short term problem.

healthunlocked.com/cllsuppo...

Tapps profile image
Tapps in reply to cllady01

Thank you my friend

Tapps profile image
Tapps in reply to cllady01

Thank you 😊

I had a few mouth sores early on with ibrutinib and still get one every now and then, but not very often. You might try biotin mouthwash or some other non alcohol based, moisturizing mouthwash.

Most ibrutinib side effects improve over time, so don't get discouraged. Its been a good drug for me with the biggest negative being about a 15 to 20 point elevation in blood pressure I have to take a med for now, not a bad trade off for getting my labs in normal range.

Tapps profile image
Tapps in reply to cajunjeff

Thank you friend

Hi. Been on IB for a year now I had mouth sores early on and I treated the area with oil of oregano, it doesn't taste to good but was very effective. I haven't had too many side effects a few aches and pains, that quickly cleared up quickly it is just your body adapting to the drug. Best wishes.

Tapps profile image
Tapps in reply to Jacksc06

Thank you friend 😊

Jacksc06 profile image
Jacksc06 in reply to Tapps

You are most welcome.

Tapps profile image
Tapps in reply to Jacksc06

Thank you friend 😊

lankisterguy profile image
lankisterguyVolunteer

Hi Tapps,

-

I see you joined us today,

welcome to the club that none of us wanted to join.

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cllady01 provided a link to the search feature for "Mouth Ulcers"

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And your title on your 2nd posting saying "Mouth Sores" healthunlocked.com/cllsuppo...

has triggered this list in the box on that page labeled Related Posts

*Ibrutinib and mouth sores anyone?

healthunlocked.com/cllsuppo...

*Mouth Sores and Neuropathy

healthunlocked.com/cllsuppo...

*Mouth sores on Imbruvica

healthunlocked.com/cllsuppo...

*Mouth Sores

healthunlocked.com/cllsuppo...

*Treatments for mouth sores on Imbruvica healthunlocked.com/cllsuppo...

The blue links above are live, so you can just click them to read each posting and the replies.

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Len

I was always vulnerable to mouth sores and ulcers and they certainly became more frequent after starting Ibrutinib. Now, after a year, they are much less frequent.

I am on Acalabrutinib and have suffered none of the predictable side effects such as headaches and diarhorea but I have had the mouth ulcers which come and go within a few days but cause no other problems. They've needed no treatment. The other side effect is widespread bruising. My platelet level is down to 41 but previously was 43 and I never suffered from bruising or bleeding. I can't believe a drop of 2 is enough to cause the bruising so it must be the Acalabrutinib.

Tapps profile image
Tapps in reply to SERVrider

Good to hear from you, Ibutinib has been around a bit, Acalabrutinib is much newer, if ibutinib doesn’t work, it’s great to know there is another drug around. Be well friend

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