CLL Support Easy Bleeding

[Kmegood]

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.

[AussieNeil Partner Administrator]

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.

Neil

[Kmegood in reply to AussieNeil]

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

[AussieNeil Partner Administrator in reply to Kmegood]

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.)

Neil

[Kmegood in reply to AussieNeil]

Thank you fir this info. My next appointment with hematologist is April 15

[AshGS in reply to AussieNeil]

Dear Neil,

Would imbruvica lead to a positive occult blood?

Thanks!

[AussieNeil Partner Administrator in reply to AshGS]

Yes, it should be possible to have a positive occult blood test result due to bleeding with any of the 'brutinibs', including Imbruvica.

Neil

[AshGS in reply to AussieNeil]

Thank you Neil; your prompt response is highly appreciated!

[Kmegood in reply to AussieNeil]

Thank you. I will have a blood test April. 15 and discuss about my imbruvica after being on it for 5 years to either continue taking it or change to something else. Will see the blood results. Right now I feel good . I am active besides the ups and downs.

[LeoPa]

How is your heart and kidney health? Any blood pressure or diabetes problems? These can cause poor circulation and swelling in legs.

[Kmegood in reply to LeoPa]

my heart and kydneys very good. NO DIABETES

[LeoPa in reply to Kmegood]

pennmedicine.org/for-patien...

can it be this?

[Kmegood in reply to LeoPa]

Thank you for this information

[Jespere]

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.

[Kmegood in reply to Jespere]

Thank you for your information

[Sunrisejoy]

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.

SJ~

[Kmegood in reply to Sunrisejoy]

thank you for your reply. I will check out this product called bleed stop. I'm USA at the moment so I could go into a pharmacy and ask for it.

[Sunrisejoy in reply to Kmegood]

You are welcome!

[SofiaDeo in reply to Kmegood]

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?

[Kmegood in reply to SofiaDeo]

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

[SofiaDeo in reply to Kmegood]

OK, when you get home, make a doctor appointment and mention "you think you are starting to have pedal edema, a pharmacist in your support group said to mention this." If one of those specialists you saw was a cardiologist, that is the office to call first. Second would be if you were seeing someone for kidney problems, last would be your GP.

Simple swollen legs may not be a big deal, I once fell asleep in the sun, got a horrible sunburn, & my legs were swollen for mmm 2 weeks before I got an Rx for a diuretic to get rid of the excess fluid. I did not have these indentations when I pressed. Legs swollen that go away when using compression stockings generally don't have these indentations. The "indentation takes a few seconds to go away" generally means *something* is causing it to pool, and it needs investigation. It maybe nothing, it may be the beginning of "something."

However, it's possible it's the drug causing the edema. Just make sure you are getting checked periodically to monitor cardiac, kidney, & liver function. A problem there can also cause a pedal (also called pitting) edema.

[Kmegood in reply to SofiaDeo]

Thanks for your information. I see a urologist twice a year and have tests and my kydney function is very good and no liver problem. Had CT scan last year. I had my legs and feet looked at many times by specialists in last 15 years. I have always had swollen legs even before taking Imbuvica and the advice I get is to wear compression socks which I find it hard to tolerate. In any case I will see my hematologist April 15 and discuss again about all of this.

[Bluesinthenight]

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).

[Kmegood in reply to Bluesinthenight]

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.