Brukinsa for CLL: Anyone have experience with... - CLL Support

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Brukinsa for CLL

Gretsch6120 profile image
13 Replies

Anyone have experience with taking Brukinsa for Cll. I had and a fib reaction to imbruvica. My doctor got an off label exception for brukinsa. It has the lowest instance of a fib.

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Gretsch6120 profile image
Gretsch6120
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13 Replies
MrMidnight profile image
MrMidnight

I took Brukinsa from February 2016 to October 2020 on a clinical trial. The haematologist thought it was a good choice because I had a heart attack two days into my obinituzumab infusions in 2015 and had to take blood thinners after five stents were placed.I believe Brukinsa messes less with platelets and is generally better for anyone with cardiac issues than say Ibrutinib.

Gretsch6120 profile image
Gretsch6120 in reply toMrMidnight

Thanks. That’s great to know I start it in a few days and didn’t know what to expect.

Gretsch6120 profile image
Gretsch6120 in reply toGretsch6120

Are you still on. Look thinners while taking Brukinsa?

MrMidnight profile image
MrMidnight in reply toGretsch6120

Brukinsa stopped working for me after 5 years. But I was on blood thinners all that time (and still am now on Venetoclax)..

xv750 profile image
xv750 in reply toMrMidnight

Great to know. 2 heart attacks. not on blood thinner

MaxSmart profile image
MaxSmart

I’ve been on Brukinsa for a year after not being able to tolerate Ibrutinib or Acalabrutinib.

Gretsch6120 profile image
Gretsch6120 in reply toMaxSmart

Tks

Gretsch6120 profile image
Gretsch6120 in reply toMaxSmart

Are you on a blood thinner as well?

MaxSmart profile image
MaxSmart in reply toGretsch6120

no

StBon profile image
StBon

Have been on Brukinsa/zanubrutinib for 5 weeks after switch form imbrubiva/imbrutinib which left me with many side effects even on a low dose. The Brukinsa already is a better choice for me as side effects have seriously minimized and recent labs show continuing good progress. Takigng the hemo/onco doctors advice so far has worked well for me - hope it does for your too

Gretsch6120 profile image
Gretsch6120 in reply toStBon

Thank you for that wish you continued health.

Gretsch6120 profile image
Gretsch6120 in reply toGretsch6120

Also wondering if you are on a blood thinner as well. I know Bruinska can cause hemorrahing .

Gretsch6120 profile image
Gretsch6120

Thank you for the information

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