I have been on Imbruvica for 29 months and also Vylocyclovir an anti viral. I often get bruising on my hands upper chest and stomach but they go away and then come back a few weeks later . The past month I have large bruises on my left arm. You can see the photo. My blood counts are very stable except my platlets at very low at around 88000 - 91. Can anyone give me any explanation for this?
Kmegood
Unfortunately, there's a tyrosine kinase in platelets, so you get off target effects affecting your platelet function. Small leaks from capillaries can sometimes spread a fair way, causing extensive bruising. Later generation BTKi inhibitors such as acalabrutinib and zanubrutinib are better targeted, so you may see less bruising if you can switch. See the table in this head to head ibrutinib vs acalabrutinib trial
ascopubs.org/doi/abs/10.120...
Ask your specialist if they consider switching worth doing. A platelet count of 88,000 is normally adequate to prevent that degree of spontaneous bruising.
Neil
Neil, so sorry about my post below. Our posts must have crossed paths. I was only responding because I thought no one else had.
As a bit of a follow-up, there is a publication reporting that CLL patients can be divided into high or low sensitivity in terms of platelet function in response to BTKis, and that those with high sensitivity may also experience bruising issues even with BTKis other than ibrutinib.
Key points
- Two groups in the healthy population and in chronic lymphocytic leukemia patients were characterized by low or high sensitivity to ibrutinib in terms of platelet aggregation response to collagen in platelet-rich-plasma in vitro.
- The better profile of acalabrutinib being mainly observed in the ibrutinib low sensitive group, replacement therapy in patients may not systematically reduce the bleeding risk, particularly in patients taking anti-platelet drugs.
Differences and similarities in ibrutinib and acalabrutinib effects on platelet functions Haematologica, 2019 haematologica.org/article/v...
Thanks Gardening-Girl, for greatly expanding on this, dare I say it, colourful topic. Yes, I too have had some impressive bruising on acalabrutinib, back when my platelets dropped under 30.
It's a pity we don't have a head to head comparison of acalabrutinib and zanubrutinib. Meanwhile, how would one go about testing their platelet function sensitivity to BTKis?
Neil
Many commercial testing labs will test for platelet aggregation, but I doubt if there is any way outside of a research setting to get an aggregation test + a variety of BTKis, as was done in the Haematologica article.
Thank you for your information . I have my next hematologist appointment in October and will discuss this with the doctor . On my last appointment in July my doctor didn't panic about my platlets being 88,000
I will ask my hematologist if I should switch to another drug. Imbruvica has been doing well for me exceot for all the bruising.
Gariva, a known off-target effect of ibrutinib/Imbruvica is interference with platelet aggregation. Platelets have tyrosine kinases that are sensitive to the tyrosine kinase inhibitor ibrutinib. My arms and wrists look about like yours. I call it my 'body art'.
It is this off-target affect that leads to the recommendation to halt any Bruton Tyrosine Kinase inhibitor (BTKi) for a time before and after surgery.
If you search the HU CLL support site for posts on bruising, there are 78 public posts.
Thank you for your information
Are you continuing taking Imbruvica despite the bruising? I am asking because after almost six years of taking BTK inhibitors, Imbruvica first and Acalabrutinib for the last almost three years without any side effects at all, I have developed a very big hematoma on my right arm starting three month ago. I was treated for possible Lyme desease , then with topical steroid crème. The rash kept getting bigger. Finally my hematologist suggested a link to Acalabrutinib. He advised to stop taking it. After five days without it my rash is finally fading. My question, once it disappears can I go back to Acalabrutinib? My platelet count is 289.
I still take Imbruvica even with the bruising. In October when I see. my hematologist I will find out what to do bit I am sure I have to keep taking the Imbruvica plus the vylocyclovir so my blood stays stable. Fyi I am very active . Do alot of biking, walking and other sport activities.
zsuzsiB, Yes, I am continuing to take imbruvica in spite of the obnoxious bruising. As much as I don't like the ugly and sometimes painful bruises, they are nothing compared to my CLL symptoms. As long as the imbruvica is working for me I'll stick with it.
I'd never heard of acalabrutinib causing hematomas, and I am so sorry that you've been dealing with an itchy hematoma for so long. I found a paper discussing a case that sounds a bit like yours, although more severe. In this case it was caused by ibrutinib, not acalabrutinib. I bet you will be able to relate to the pictures in the paper. 😩
Imbruvica (Ibrutinib) induced subcutaneous hematoma: A case report
sciencedirect.com/science/a...
In terms of your question about whether it would be safe to go back on acalabrutinib, I don't know the answer to that question. Ironically in the paper that I have cited the authors suggest substituting acalabrutinib for ibrutinib.
Please check in and let us know what your doctor is suggesting. Maybe time for venetoclax-based therapy???
gardening-girl, thank you for your reply. Actually it was this article you sent the link to that prompted me to show it to my hematologists and suggest a possible connection to my rash/hematoma. One of them, in July , when the rash was much smaller said it is not a bruise and sent me to the dermatologist, who determined it was subcutaneous bleeding. And the marry go round started with trying various treatments. My second hematologist I consult in a big teaching center did not think either that it had to do directly with Acalubrtinib or CLL. ( According to the article, it is a rare side effect). Now both of them agree that suspending treatment for the time being is the right approach. I will see the local doctor on Monday and the other in October. He suggested flow cytometry of the peripheral blood to see if there is any residual CLL in the blood. He mentioned a new BTK inhibitor, LOXO, on the horizon with even less bleeding than Acalabrutinib. If all fails, Venetoclax. I will keep you posted
zsuzsib
Yes, please do keep me posted! And, best wishes which ever path is chosen.
Hello, gardening girl, just wanted to let you know where I am at this point. I stopped Acalabrutinib on Sept 7. About five days later the hematoma started to fade and in about three weeks it was almost invisible. My hematologist suggested to restart the med at this point.
I restarted on Oct 1, after 23 days hiatus. and so far so good. I am hoping I will be able to continue. I appreciate your interest. I will let you know how it goes. zsuzsib
Thanks for the update. Glad to hear that you are doing well!
I forgot to mention that my bruises disappeared during covid. Its very strange not to see any bruises for a change but could be I stopped Imbruvica for 8 days.
I have been on the same medicine for 3 years and although my bruising is not as bad as that I only have to knock myself and I come out in brushing.I have been told it is side effect from the medicine.my be worth having a word with your consultant just to get reassurance from how you are experiencing the bruising.Sorry I Carnt be more help
Trafford
Thanks for the explanations. I'm 63 and have been on Imbruvica for 2.5 years. I'm doing great overall but my skin cuts and bruises easily although not as bad as in the photo. My skin seems to be similar to my almost 90 year old mother's 😕
I'm on NO medication and have the same bruising as you. Perhaps it is the CLL itself. Mine does move around...doesn't hurt but looks like I've been in a fight!
What's your platelet count? That level of bruising when you have bone marrow infiltration reducing platelet production, but not on a BTKi, is consistent with a count of around 25 to 50.
Neil
Platelet count: 198
But guess I should tell you that I am 91!!!! Old but charming?????
So I have between 88-91. My hematologist didn't make a big deal about it but now with these new bruises coming out in the past month I will speak about it at my next appointment in October
Kmegood,
Clotting is a very complex process, with an adequate platelet count just one of the relevant factors. It could be very important to identify why you bruise relatively easy with a nominally fairly safe platelet count before you reach the need for treatment. In the year before I began treatment, my platelets were down in the low 50s much of the time. I didn't notice any worsening bruising.
TXHOUSE , Great that you are 91 and contributing here. You are putting many "young-uns", relatively speaking, to shame, who find it too technically challenging to join online forums.
According to Harvard Health: health.harvard.edu/staying-... men can bruise more easily as they age, due to "a combination of less subcutaneous (fat) tissue and more fragile blood vessels".
Neil
I will discuss all this at my next appointment in October. Thank you
My platelet count is between 88 to 91
Looks just like my husband's arms. He's been on ibrutinib for 8.5 years. Bruises easily.
just out of curiosity...do you remember hitting those places or even a slight knock into something that could have caused them or are they spontaneous ? I remember sliding my hand between chair cushions looking for something and got bruised across the top of my hand!! And sometimes it reminds me of where I might have hit something, even lightly, to cause a bruise. Although I have a funny feeling based on appearance, size, and location that they are more spontaneous...I'm truly sorry. I had two black eyes for weeks (and a primary care doctor who thought my husband was beating me!!) from my grandsons head hitting my face once and the second time swinging him and putting him down only to fall and hit my face on the concrete and brick fireplace hearth! They didn't even bruise til the next day !! I would send pics to doctor for further confirmation and information
Kerry
First if all I have been bruising for long time and they appear in different places and then disappear a few weeks later and appear in various places mostly on arms , hands and sometimes on my stomach. Before being on Imbruvica I wouod get a bruise with a slight bang but never having so many bruises coming out of nowhere.
Oh yes, when i was on Imbruvica, I would get bruises without bumping into anything. They just appeared and lasted 3 weeks. Now I am on Venclaxta and no more bruises!
Since his CLL diagnosis (2013) my husband has dealt with purpura. It became much worse after he started on Ibrutinib. Prolific. Horrible. So many shades of purple, huge and unsightly. He was prone to bleeding. His platelet count was very low yet his hematologist/oncologist wasn’t particularly concerned and did not offer any solutions. Neither did his dermatologist. It really bugged my husband. We tried all the over the counter creams to no avail. Just reaching into his back pocket to get his wallet made the entire back of his hand deep purple. It was like the wind would blow across his forearms and he’d bloom. All the way up to his elbows he was covered …a human banana. So, we researched and in an effort to try and boost/strengthen platelets we went the diet route…decided to integrated more pumpkin, papaya, pomegranate, persimmon and sweet potato …our 5 P’s to Punch Out Purpura (would have been 6 if my husband were not allergic to pineapple). We saw noticeable improvement within the first 3 months. We also noticed that whenever we slacked on the diet supplementing, the purpura would act up…signaling us to focus again to bring it back to bay. After 4 years, the Ibrutinib still makes him sensitive to bruising even though his platelet count recently reached the low end of the normal range (woot!). He clots better these days… although bandaids are still very much a staple at our house. Now, he’s more the culprit, bruising when he bumps something hard while working with his hands or when he wrestles with the dog and takes a loving paw swipe (sigh!). We just keep at it… inventing new dishes with pumpkin and sweet potato, papaya drops in his smoothies when they are not in season and throwing pomegranate seeds on salads (he’s not big on persimmons but they’re kinda hard to find ‘round here anyway).
88, CLL, Imbruvica since 4 years. CBC normal at present. Platelets 180. Hands and arm bruise due to all factors. I wear day and night white dermatology gloves (12 pair $ 20. Washable for weeks) and cotton arm protectors ($ 15 pair, washable for month' ), plus elbow protectors (pair $ 15 ). Over the white dermatology gloves I wear large medical gloves for housework and outside. Go with the flow !
Bruising
Bruising
Bruised and swollen arm from Calquence.
Platelets and bruises 
