Day 5 Zanubrutinib

[FreoSue]

Am a little concerned with one of the side effects increased bleeding. I have chronic venous insufficiency in my left leg and despite wearing my compression stocking it looks worse today, more bleeding? Not sure who to see about this or what to do?

[Newdawn Administrator]

Hi Sue,

You need to be ringing your haematology team and reporting this side effect. I’m also on Zanubrutinib and can empathise with this issue (my stomach and chest have extensive petechiae) but with an existing problem, I’d advise you ask to speak to someone at your hospital. I’m given a number for an urgent concerns, hope you have one too.

Best wishes,

Newdawn

[FreoSue in reply to Newdawn]

Thanks Newdawn was not given any hospital or urgent numbers to call - I can only inform my specialist at his office tomorrow

[Newdawn Administrator in reply to FreoSue]

I think that’s a wise precaution Sue. Hopefully it may just be an exaggerated response in your case given your existing weakness in the vessels.

Newdawn

[FreoSue in reply to Newdawn]

I was advised to not make any changes and keep taking my medication, making me feel like I was overreacting.

[Newdawn Administrator in reply to FreoSue]

Not very helpful of them Sue but it’s still important to report these side effects and never feel that you’re over-reacting by doing so. You only need to read the possible side effects of Zanubrutinib to know why that’s important.

Newdawn

[bayside64]

I developed a hematoma after my second dose of Zanubrutinib. They discontinued it. Eventually, I was given Venetoclax.

[texigal]

I underwent a trial of Zanubrutinib after venetoclax quit working. Within one month I had bright red petechiae all over, multiple bruises and easy prolonged bleeding from minor injury. My oncologist stopped it and asked me to try acalabrutinib because even though it’s also a second generation he has found some patients can take it without the bleeding side effect of Zanu. So I am on Acalabrutinib half dose for about four months now and no problems! I have the petechiae but they are so faint they look like freckles. So you may want to ask your onc. about taking another brutinib. Adverse effects of adding subcuticular bleeding/bruising on the high back pressure ankle area will accelerate tissue damage and down stream ulceration and/or cellulitis. I hope you will be a self advocate in discussion with your doctor about your rightful concerns.

[FreoSue in reply to texigal]

Thankyou for your response - the photo taken day 5 was the worst my ankle has looked, perhaps an initial reaction? I’ve now been on it 3 months with no other side effects and my numbers started falling last month.

[texigal in reply to FreoSue]

Excellent! So happy to hear that! Best wishes on your journey.