Zanubrutinib 1st Side Effect: Took my shower... - CLL Support

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Zanubrutinib 1st Side Effect

CoachVera55 profile image
10 Replies

Took my shower last night & noticed a 2x2 inch large hematoma on the outer aspect of my right thigh & a quarter size bruise near my knee on that same leg. Plus some red pigmentation under both breast that is hereditary but I haven’t seen them before on me. I notified pharmacy & they will give me a call back. I hit up my PMD for a lab slip that I will do tomorrow if not today. But luckily this CLL Support Group warned/notified me of this plus all the webinars & drug information out there. I am not worried about having to stop treatment because being forewarned is to be prepared 🤷🏽‍♀️ I think some even said that its a sign that the med is working as expected. That its a little worst before all good. Thanks again everyone, your input is very valuable during this journey👏🏾👏🏾👏🏾

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CoachVera55 profile image
CoachVera55
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10 Replies
gardening-girl profile image
gardening-girl

CoachVera55, I don't know that the bruising is a sign that zanubrutinib is working, but it is definitely a known side effect. I call my bruises from ibrutinib my body art. I get them from the slightest bump into a piece of furniture, a door or wall, etc. I usually don't even remember when and where I bumped into something.

Remember also that it is expected that your peripheral blood lymphocyte count will go up as CLL cells are released from your lymph nodes. THAT will be a sign that the zanubrutinib is working!

CoachVera55 profile image
CoachVera55 in reply togardening-girl

So I fought to get the bloodwork day 9; Hgb 10.8-10, WBC 76-108, Plts 74-118. Chemistry is better too. I am glad I am not too low & very hopefully that this will work🙌🏾 I have plenty of leafy greens & will continue. Thanks Gardening-Girl🥰

GRMat158 profile image
GRMat158

Like gardening-girl I don't know if it is a sign of it working, but quite soon after starting on zanubrutinib I had this appear just above my knee. It persisted for several months, but didn't cause me any problems. My consultant monitored it, but was not worried by it.

There was no particular cause - didn't bump anything - although I am still a recipient of much "body art" 😂 whenever I do bump into things.

bruise
bayside64 profile image
bayside64 in reply toGRMat158

I developed a hematoma from Zanubrutinib on the second dose. My specialist stopped it right away. The same thing happened to me on Acalabrutinib.

CoachVera55 profile image
CoachVera55 in reply tobayside64

I didn’t think bruising was considered so serious. I started noticing more bruising when my platelets dropped to 70-90 before Zanubrutinib. Plts are up to 118, I will raise the Hgb that dropped 10.8-10 with green leafy veggies over dosing lol. I want to see my WBC/Lymph drop all the way down. 80’s before treatment & now 108’s. My side effects so far are mild & pray it doesn’t get worst🙏🏾

Bruising before Zanubrutinib
CoachVera55 profile image
CoachVera55 in reply toGRMat158

I was not overly alarmed with the hematoma but I was anxious to see how it translated to my bloodwork numbers. So with the elevated WBC/Lymph that means its working, right? I can raise my Hgb with leafy green vegetables but I could not raise my platelets for nothing. I want to see the WBC/Lymph drop 🙏🏾 I have cold symptoms now tho🤦🏽‍♀️

skipro profile image
skipro

I have been getting large bruises with no obvious injury for many of them, and a few hematomas since before FCR after FCR and now on V + O.

My platelets have hovered around 100 for nearly a decade and are now around 80 since taking V + O

I had a knee scope just before starting V + O and as an orthopedic surgeon, have rarely seen any bruising after this type of surgery.

However, my whole leg was black and blue for a month.

Not sure if it's just part of the disease or some other thing going on but it's been happening regardless of whether I'm on treatment or not.

CoachVera55 profile image
CoachVera55 in reply toskipro

I think that things will be forever altered once you have any treatment & may come back to your healthy baseline only years later without further treatment. But what I am learning & I am only learning it now because I was happy on my island DeNile, is that we treat when active & W&W when quiet. We do this dance forever🤦🏽‍♀️. Oh BTW I lost nearly 4 units of blood after my 2nd Total Knee Replacement & the surgeon said it was the bloodiest knee he has ever seen in 25yrs. Mind you that was 2012 & my WBCs was the only out of wack number🤷🏽‍♀️ So perhaps its both the disease & the treatment, it is a blood cancer. I had to demand a blood transfusion @Hgb of 8.

Kiwidi profile image
Kiwidi

I have been on W&W for 5 years and regularly have such bruises especially on my lower arms and hands. I just consider it a part of having CLL and don’t worry about them.

CoachVera55 profile image
CoachVera55

I have had smaller less discolored ones in the past too but the size & dark frank bleeding look caught my attention. And sure enough my Hgb dropped 10.8-10, Platelets rose 76-118 & WBC sky high from 80’s -108. I hope I’ll be able to handle these ‘off target’ symptoms.

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