IMBRUVICA TREATMENT: I'm interested in any... - CLL Support

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IMBRUVICA TREATMENT

ozarkharper profile image
8 Replies

I'm interested in any feedback or input regarding imbruvica. It's been suggested by my oncologist hematologist .

Thank you everyone.

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ozarkharper
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8 Replies
PlanetaryKim profile image
PlanetaryKim

It's been a really good drug for me. I've been on it one year - and currently at a very low dose of just 140 mg (a single pill). It is working fine at controlling my CLL, which was seriously out of control and making me very ill before I started. I am not aware of any side effects, but that may be due to my low dose.

kim

annmcgowan profile image
annmcgowan

Hi I am on Ibrutinib on the Flair trial. I drew the Ibrutinib and rituximab arm and completed the 6 months of rituximab in May this year.

I am doing well my bloods are almost all back in the normal range.

I have had minor side effects pitichea, bruising,finger nail problems and tinnitus.

The tinnitus is mild and I can ignor it the nail problems I am told are temporary.

So all in all mild, temporary and manageable.

Good luck

Ann

It has been a great drug for me. It worked immediately in reducing lymph nodes and getting my numbers back to normal. I have loads of energy and haven’t had negative side effects. I’ve been taking it since January 2017. I know it’s different for everyone but for me it has been a life changer. Good luck, Sally

Yuck profile image
Yuck

Open book on line or order hard copy: at site search out the CLL booklet.

nccn.org/patients/guideline...

Lisa-1959 profile image
Lisa-1959

Everyone reacts differently to the med so just wanted to share my experience with Imbruvica. I have been on it 29 days, and overall I "feel" good, but there have been some unpleasant side effects. I initially dealt with tummy distress, but that has resolved, and the mouth sores/gum tenderness is doing much better, but the worst has been the migrating joint swelling and pain. I have no history of arthritis or anything that would cause this, so it is definitely related to the Imbruvica. My oncologist put me on a 12 day regimen of prednisone which helped tremendously, but as soon as I finished it, the swelling and pain came back but it is now isolated in my left knee. I may go back on the prednisone, but in reading posts on this site, this side effect often seems to disappear as treatment continues. I am certainly praying so...I am grateful for the med and what it is supposed to do in the treatment of my CLL, but I admit it...I'm a wimp and I don't like this pain! :-(

Seok profile image
Seok

Hi ozarkharper

I’ve documented my journey with IB, feel free to take a look and message me if you need clarification.

MSUdawgMom profile image
MSUdawgMom

I’m 60 y/o, diagnosed in 2013, 17p deletion. After rapid progression, I began Treanda/Rituxin, with little results. In June, 2014, I began a clinical trial with Imbruvica/Ublituximab & have continued the Imbruvica since then. It has been a life-saver for me (literally). Few, bearable side effects. In the beginning, I had the migrating joint pain, which lasted about 4 weeks. The only other side effects I’ve had (& these still occur randomly) are muscle cramps & mouth ulcers. I have been on 420mg from the beginning & take the 3 capsules at bedtime. (Never had any GI issues). It began working immediately (just know that, in the beginning, your counts will rise before they start to decline because it is flushing the cells out of the lymph nodes into the bloodstream). It’s a wonderful drug & I hope it works as well for you. Sending prayers!

81ue profile image
81ue

I'm on 560 mg tablet almost a year now, doing well. I can't tell what side effects are cancer or imbruvica re bruising and petechia , but I do believe the drug causes dry mouth especially at night and think it causes some occasional foot or calf cramping at night .

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