I have been on Acalabrutinib for over 2 1/2 years, and my blood numbers are stable within normal range. I now have to go for blood draw and CT scans only every six months. I am nominally in remission, thanks to Acalabrutinib.
However, in the last few months, my pulse has increased significantly. For example, walking around the living room causes a jump in heart rate from ~80 to ~120. As a result, I took myself to a cardiologist, who has diagnosed me with "Atypical Atrial Flutter" and put me on blood thinners to reduce the risk of stroke.
After I see an electrophysiologist in early April, it is likely I will undergo a cardioversion to try to shock my heart back to normal rhythm.
My obvious question is: can the Acalabrutinib be responsible? The consent form I signed, which lists possible side effects, and there are many, makes no mention of heart-related issues.
I turn to this group to find out if there is anyone on Acalabrutinib, which has worked wonders in controlling my CLL, who has experienced significant cardiac symptoms.
Written by
Ramses
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What does the clinical trial PM say? There is very thin data on acalabrutinib at the moment and no monograph yet so very uncharted waters...
As my cardio/oncologist told me with regards to ibrutinib A.fib, old age sets the stage for this and it may or may not be treatment related...in my case it certain was Imbruvica (ibrutinib), since it reduced substantually a week after I went off it for bleed issues...
You might talk to the trial people and see if they will hold acalabrutinib for a bit, and monitor the effects on your heart...
I tried pulsing (forgive the pun) one of the trial nurses, who, in response to my query read me the list of known issues from the consent form. I also received permission from the oncologist to embark on the blood thinners, so he is aware of the new symptom. I did not probe or suggest holding the Acalabrutinib, partly because I am so happy with the way it is controlling my CLL and partly because I was not sure if that was appropriate for me to do.
You certainly raise a good point; before having a cardioversion, does it make sense when there are no reported cases of like Acalabrutinib effects to try the experiment of holding the drug and seeing what happens.
You need to discuss this with the trial doctor... don't hold it on your own volition and you should be monitored with a holter monitor, while this is happening...
That is how it was done on my Imbruvica (ibrutinib) adventure...
In this interview Dr Furman reports (at 1:36 to 1:54 into the interview) when talking about Acalabrutinib and Atrial Fibrillation, "it's going to be a little bit lower with Acalabrutinib than Ibrutinib." and Dr. Koffman's summarizes that Atrial Fibrillation is "rarely associated with Acalabrutinib treatment," i.e., not never. After seeing this, I wrote the trial doctor to ask if it was reasonable to at least pose the question: if " a little bit lower," or "rarely": could Acalabrutinib be responsible for my Atrial Flutter?
The bottom line is that I am going to stop the Acalabrutinib for about a week, get a blood test and then decide what to do next. Clearly, if the Acalabrutinib is responsible, doing a cardioversion to shock the heart back to normal rhythm is not a sustainable approach to my current heart problem.
Thank you for this post, Ramses. There is so little information on side effects for Acalabrutinib. I’ve been on it now for almost 5 months and I always feel a heaviness in my chest about an hour after taking it. The docs said that is very odd and don’t think it is drug related. They instructed me to see a cardiologist and take the test Cilcanada describes, with the holster monitor. Hearing about your experience, i will certainly do that. So glad to hear your CLL is in control!
If you are concerned about pausing, let me share my story. Been on Acalabruitinib 19 mos. About 6 mos ago took a 1 week break to try to determine if the Acalabrutinib was causing the relentless bone and muscle pain. A month later had to stop again, 2 weeks for surgery. Following surgery, my trial team and I decided to go on a reduced dose. I was worried sick of progressing. At my next visit my labs had continued to improve even thru the pauses and reduction. But that's just my experience (17p unmutated). I'm with Cllcanada. All the best.
The matter of 'age laying the stage for atrial fib':
Well, unrelated to CLL and medications, I've read over a number of years on chronic fatigue (many causes), how some supplements may help to tackle this, and success stories of certain supplements resolving Atrial fib with consequent nil surgery nor medical procedure.
Sorry, no references here - maybe this is a starting point for a little reading, but I don't consider any of the below controversial nor risking harm, if potentially a little costly on the pocket.
Supplements on my heart list: ubiquinol (if within budget as much as 100mg x3 daily), magnesium (an absorbable form like citrate/glycinate/etc, maybe 150mg x2 daily), astaxanthin (a very superior antioxidant, as much as 4mg x3 daily) - obviously run this by your doctor before doing it, even if the doctor does not know of benefits, let them guide you on the risks.
Some cause of chronic fatigue - with serious implications for regular normal heart activity and effectiveness - is seen to be downgraded mitochondrial effectiveness with consequently inefficient and lower energy production, or a shift resulting in lactic acid production.. All bad news with multiple consequences - our hearts need a great deal of energy, ideally delivered via optimal ATP production from glucose (or ketone bodies if in Ketosis - Google LCHF)
Boosting ubiquinol (more costly than related, but less reduced form, Co-Enzyme Q10, and far more likely effective), adding magnesium (commonly insufficient in diet), and astaxanthin as another very effective antioxidant helping the mitochondrial biochem environment become more nearly optimal .. These things may, over some period of weeks, improve mitochondrial energy production..
This, I read, and give witness, can sometimes resolve a cause of atrial fibrillation or heart flutter or racing heart beat.
What you may read is that Ubiquinol (found in every human cell) is oxidised in the course of our metabolic processes, through a series of increasingly oxidised states, and subsequently recycled, via a series of energetic reducing steps, for reuse in our bodies.. But this recycling is an energy requiring process, so when, especially as we age or take statins -- and maybe, ditto, some CLL medicines too -- our energy production via our mitochondria may be compromised, thus taking sufficient doses of ubiquinol as a supplement ( I list magnesium and astaxanthin too, ponder as you see fit) may push the biochem equilibria in our favour, thus it sometimes favourably influences our energy metabolism (energy production or ubiquinol recycling in this case) and this alone may help our hearts to do the right thing.. It may help see our heart muscle gets a sufficient supply of ATP (energy) and a minimum of lactic acid.
Summary: My reading guides me to consider that sometimes, Atrial fibrillation may be a nutritional/functional issue, where meds, statins amongst others, harm our biochemistry (ubiquinol recycling, etc.) and the right dose of the right supplement(s) may help resolve things..
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