I have CLL since 2010. Had chemo in 2013 -2014 FCR treatmentfor 6 months which I had posted some years ago. Had relapsed in 2020 so was given Imbuvica which has been working well for almost 5 years now. I am on vacation till early April and when I return my hematologist is intending to maybe change my med but maybe will wait because all my previous blood tests have been good enough to stay with the Imbuvica but I keep compaining during last doctor visits about swollen ankles and feet and 3 specialists tell me same thing to wear compression socks which I have problem to tolerate. Lately I had a fall didn't break anything but my arm was bleeding terribly and took over a week to stop. Had bandages and one day remove3d them so it could heel better, Last week some object pocked into my other arm and the bleeding was constant. Last few days I thaught it was dry enough not to worry about it and today blood ran on my white bedspread and then stopped. I tend to bleed easily more now than at the beginning when I started taking Imbuvica.
So please someone give me your thaughts about what I just posted.
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Kmegood
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All the targeted therapy Bruton's Tyrosine Kinase inhibitors (BTKis*), such as Imbruvica (ibrutinib) have an off target effect on a kinase present in platelets, which reduces clotting effectiveness. When our platelet count is already low, or we are also taking anti-coagulation drugs - 'blood thinners', that effect is exacerbated. That's why bruising and petechiae (small red or purple dots under our skin) are more common when we are on a BTKi.
There are other ways you can reduce swelling in your ankles and feet (edema) besides wearing compression stockings, e.g. by keeping your feet elevated when possible, going for short walks, reducing your salt intake, etc. my.clevelandclinic.org/heal...
*The FDA approved BTKis include Calquence/acalabrutinib, Imbruvica/ibrutinib, Brukinsa/zanubrutinib and Jaypirca/pirtobrutinib - I've provided both the marketing and scientific name.
Thanks for your reply. My platelets are at 96. I am in Quebec so my test results are done in montreal hospital. Plat level according to my Biochemistry range dais normal is 150-400
The iwCLL management guidelines recommend starting treatment when platelets drop below 100, with the latest 2018 issue allowing for a lower count if they are deemed stable. Platelet transfusions when we have CLL are recommended when the count drops below 20 and we have an infection, otherwise the threshold is 10. So your platelet count of 96 should be adequate, but at least now you are better informed to discuss this topic of understandable concern with your haematologist. (It's not uncommon to have low platelet counts during treatment, which can persist after treatment, but the risk of dangerous bleeds, particularly internal ones, needs to be assessed.)
I have HCL (hairy cell) but follow this group because there are similarities. My only symptom is an elevated WBC but my platelets are now at the lower end of normal. I added Vitamin K to my supplements because it's necessary for the production of other clotting factors. I hope it will help bolster my low platelets, since they are not the only clotting mechanism. It might be worth investigating and discussing with your medical team.
Hello,I can't give much advice on the meds but, for bleeding (on blood thinner & just started acalabrtinib) so I bled & bruised easy even before treatment. In u.s.a product called "bleedstop" has been so helpful. Not sure if that helps but I keep packets available in home & car. (Platelets were down to 83 1st time I ever used product) wife found it on amazon & at cvs.
Call ahead. Ask for a styptic pencil or styptic powder if they don't have the brand Bleed Stop, that's a common generic name in the US . Vets offices often carry styptic powder, if there's one near where you are staying.
I am seeing major pharmacy chain in the US offering Bleed Stop are CVS, walmart, RiteAid & Walgreens. It's also for sale on Amazon, if you have Prime/don't mind paying for shipping, you can get it sent to where you are staying if no local place has it. May be worth $5 shipping instead of driving each way to go get it, taking time from your vacation
When you say "ankle swelling", is it solid, or does the skin depress in a bit & leave an indentation for at least a few seconds before returning to normal?
the skin depress in a bit & leaves an indentation for at least a few seconds before returning to normal also I will check out the pharmacues nearby or Amazon
The bleeding/bruising tendency on BTK inhibitors as noted by AussieNeil can result in what you describe Kmegood. If you have not already done these things, I would suggest that you cover any open sore or skin area with an adhesive bandage to protect from further irritation from daily activities. Also, omit non-steroidal analgesics such as aspirin, ibuprofen, naproxen and similar drugs which also affect platelet function and can aggravate a bleeding tendency. Acetaminophen (Tylenol) is OK for pain, and will not affect platelets. And be cautious with ambulation if you have a problem with balance, because falls can be a real problem, especially with head trauma and bleeding within the skull (intracranial bleeding).
I am aware ot what not to take due to BTK inhibitors. After 5 years on Imbruvica I need to be more careful and will see my hematolgist and after the blood test will determine if any changes needed.
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