I have been on ibrutinib 140 mg for B cell lymphoma for 18 months my wbc count down from 60k to 14k and doing fine but in spite being on the smallest dose I am getting easy bruise and tendency to bleed , my hematologist while impressed about my improvement , I was discussing if we switch to acalabrutinib , I want to see if any with cll been Tx by acalabrutinib which I understand don’t inhibit the clotting system which ibrutinib do that, your answers are greatly appreciated.
Acalabrutinib vs Ibrutinib : I have been on... - CLL Support
I am in a clinical trial with Acalabrutinib, approaching my two year mark. The side effects I’ve had have been bruising, petechia, nausea, headaches, mouth sores, some joint pain, mild diarrhea, nails breaking/shattering, and in terms of bleeding risk, have had to stop treatment seven days prior to certain surgical or dental procedures just to be on the safe side. I have not experienced a fib which is one of the main concerns with Ibruitnib. I’m not sure what the head to head comparisons show between Ibruitnib and Acalabrutinib (if enough studies comparing the two have been done). The side effects seem similar but but the hope in trials is that they might be less extreme with Acalabrutinib. My understanding is both work along the same pathways to destroy the cancer cells, with a few aspects of Acalabrutinib adjusted, in hopes of avoiding some of the more severe side effects of Ibruitnib. Of course everyone is different, so each individual response is unique. None of the side effects I have experienced with Acalabrutinib are so severe that I would stop taking it. I started with SLL and progressed to see CLL so I’ve had a lot of node involvement. My nodes are now over 90% reduced from when I started the trial two years ago. My labs are almost normal. They are calling it partial remission at this point. I gather that unless your side effects are very severe with Ibruitnib, like a fib that cannot be controlled with medication, docs tend to want to keep you on Ibruitnib.
I’d be happy to answer any other specific questions you might have if you want to reach out. Best of luck with your treatment.
What do u mean ....a fib
Atrial Fibrillation (Afib)
Some treatments like Imbruvica (ibrutinib) can cause this is about 10% of patients...
Atrial fibrillation of the heart. It is a potential side effect of Ibruitnib and the clinical trial hope with Acalabrutinib is that side effect could be avoided. Many times doctors keep patients who are doing well, on Ibruitnib, and try to treat the a-fib with medication. Fortunately, I have not experienced a-fib on Acalabrutinib.
I have a ventricular arrhythmia, have been on IB for a month and my arrhythmia is driving me crazy, getting a monitor soon, wish the issue of patients with ventricular arrhythmia were addressed somewhere. I had an ablation for it 2 yrs ago, but it has really kicked up since I have been on IB. I don't know what afib feels like, but am quite familiar with my arrhythmia.
A.fib is like a car misfiring... then a very fast idle (pulse), then another misfire, fast idle.... and so on...
When you have atrial fibrillation, you might notice a skipped heartbeat, and then feel a thud or thump, followed by your heart racing for an extended amount of time. Or you might feel heart palpitations or fluttering or jumping of your heart.
Mmm, that sounds the same as my ventricular one then, my heart goes from 35 to 120, except now on IB this month, my pulse is in the 60's dropping down to 50-49, I can feel this, if I put my finger monitor on I can see my heart rate dropping. It also feels like my heart is beating all over, the pvc's feel like in my chest, throat, stomach. Since my normal good heart rate is in the 90's to 102 I feel like this low in the 60's heart rate is a problem. Its pretty consistent at that rate, but not normal for me, and why I feel tired, I felt the same tiredness before ablation 2 yrs ago. I hope the IB is not making my vent arrhythmia kick up again, I would not want to go through another ablation again ever. My brother has A-fib and he never notices it, he only knew because he had a minor stroke at work one day, he just got a pacemaker recently.
What I find most interesting is your success on 140mg. Each time I suggest a reduced doseage to my oncologist I'm told... 420 mg is working... not enough data to support lower doses
Due to my racing heart and tingling tongue my Ibrutinib got lowered to 140 mg. Started Aug 31 and at my last appointment end of Nov my Lymphocytes count went from 187 to 37. Hemoglobin 10 to 13 1/2. Best I've felt in the last couple years. My Mayo doc said that 140 mg is working great for me and is finding many of his patients are doing great on a low dose. He also starts his patients at 240mg, said lower the dose less chance of side effects. So works for me, good luck to u and Merry Christmas snd Happy New Year.
I had to go off ibrutinib after 6 weeks due to a debilitating rash and severe muscle weakness. I am now on acalabrutinib and after over 2 months I have no side effects worth mentioning.
Same experience here. Rash from neck to ankles covered whole body! After 2 weeks on Ibrutinib even though was on just 140mg. Now on acalabrutinib for a month and so far minimal side effects. How are you doing now??
Now it has been just over a year on Acalabrutinib and still doing well. My blood tests are the best they have been in a long time and I feel good with lymph nodes reduced to normal according to CT scan. I am dealing with some diarrhea but other medications may contribute to the problem.
Great to hear from you.
My platelets are up (1770 after 5 weeks. This is the highest they have been in over a year. Studies show it should not decrease platelets.
I would suggest just monitor your own platelets. It could be calquence does not lower platelets but the CLL itself could keep them low in some people.
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