I have been following this group for over 2 years w/wait. I have learned alot from members. Thank you. I started treatment about 10 days ago - Calqence. Because I have a genetic defect in my liver CYP2C9 - Pharmacist checked to make sure my liver could handle Calquence and all was good. So they started me on 100 mg - one X a day. Other than unmutated all other markers are good. After 9 days, I am bruising all over… some bruises that actually bubbled up and are slightly raised, no other noticeable side effects. Because of the bruising they took blood tests yesterday, and my platelets dropped from 125 to 79. WBC from 90 to 100. My liver and kidney levels are slightly higher. Dr seems more concerned with my kidney/liver than with the bruising, however she seems perplexed as to why I am having so much bruising as she doesn’t feel my platelets are dangerously low. She asked me to stop Calq. and come in next week to redraw blood. I actually am impressed with Calq. as in one week my lymph nodes are gone, no more night sweats and I am feeling much better. Hoping I can continue on Calq. My question is, has anyone had a similar experience. I eat very clean , I am very healthy- no other health issues, exercise, other than my current conditions discussed here, I feel great. Any advice on what else could be causing blistering bruises and what can be done to support kidney/liver during treatment.
Starting on Calquence: I have been following... - CLL Support
Starting on Calquence
How experienced is your specialist with patients on the BTKi (Bruton's Tyrosine Kinase inhibitor) Calquence/acalabrutinib? The reason I ask, is that BTKi drugs like Calquence are known to have an off target effect on platelets, due to the kinase in them. This is why the standard recommendation to stop them prior to surgery. It's not normally a problem otherwise, bleeding risk wise, but there is a tendency to have petechiae (small red spots) and bruising while on BTKi treatment.
After 10 days, the Calquence will have barely begun to work at cleaning the CLL out of your bone marrow. There can be an initial drop in blood counts (other than lymphocytes, which can rise for several weeks), before the bone marrow recovery improves blood counts. (My platelet count dropped to a low of 29 before recovering).
Without seeing a photo of the blistering, it's hard to know what you are experiencing. Perhaps you could attach a photo?
Neil
Thanks Neil, I have always enjoyed reading your posts. I do know that bruising is a common side effect due to lower platelets. I was more concerned about the 3 large bruises I had that looked more like blisters. As of today they have settled down and flattened out into a regular dark bruise, therefore I have no photo. Just wondering if others had these raised bruises and what causes that.
And I am also concerned about how to support my liver while on Calq. or any other BTKi drug. Especially with my CYP2C9 gene, which means my liver metabolizes drugs more slowly. I have never met anyone with this liver defect, so wondering if anyone else has this gene and how to support the liver while on the drug.
The appearance of a bruise (ecchymosis) depends on how deep in the skin the bleed is, how much and how quickly blood escapes, how old it is, etc. See my.clevelandclinic.org/heal... You shouldn't be experiencing extensive bruising with a platelet count of 79, but there are many factors involved in the clotting process, one or more which could be contributing to what you are experiencing. You should follow this up with your doctor to determine your risk of internal bleeding. See this reference for symptoms of internal bleeding; medicalnewstoday.com/articl...
With respect to liver health, our livers are self cleaning and self repairing, provided we look after them. Liver cleanses and detoxes are largely a waste of money. See healthline.com/health/liver... Having a pharmacist involved is what I'd recommend, but I expect they would need to know more particulars of how your CYP2C9 gene differs, because that gene is fundamental to determining how well your liver metabolises drugs, etc. SofiaDeo would be much better able to comment about this than me.
Neil
thanks.
Am on Calquence and do have bruises but am also on blood thinners for heart so may add to problem but seems to work ann on remission after 1 year
I started calquence about 2 years ago. I too experienced some crazy bruising for the first couple of months but then it subsided. I still bruise easily but nothing like those first couple of months. I have been very happy on the drug with only headaches to deal with. I control these with coffee.