I've recently been diagnosed with CLL (March) and chose to start chemo taking Acalabrutinib. After the initial few weeks of nausea things seemed to settle down. My glands went down and my energy levels improved. However, things seemed to be deteriorating and I'm tired, nauseous and have headaches all the time. Not knowing that extreme tiredness was a side effect of the drug I asked my Doctor why I was tired all the time, he said I shouldn't be and suggested I have a blood test for low iron. This test was not done and the next time I saw the Doctor I asked him directly was my tiredness a side effect of the medicine and he said no. He then said it could be the cancer and he would arrange for diabetes and thyroid test. When I investigated it is clear that extreme tiredness is a side effect, what I can't understand is why my doctor would not acknowledge this. Please, can I ask has anyone else experienced similar issues with this drug and what was the advice from your doctor. Any ideas why my doctor is not acknowledging the side effects.
PS I will ask my doctor when I summon up the energy and courage
PSS Any thing I can do to combat the tiredness
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Tomaljoe69
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Acalabrutinib is not considered chemo but rather a more targeted therapy.
For many people, acalabrutinib improves their fatigue. It is possible though that acalabrutinib can cause fatigue primarily by causing anemia, low red blood cell counts.
It sounds like your doctor suspected anemia at first, but it’s unclear from your post if you have low hemoglobin or low red blood cells.
Your doctor appears to be exploring other possible causes. Fatigue is a listed side effect of acalabrutinib so I think you should ask your doctor to explain to you why he thinks there might be another cause. I take
acalabrutinib and it helped restore my hemoglobin. We are all different though. I hope your fatigue improves.
How long have you been on the drug? Your body might be going through a lot of changes if it is still recent. Perhaps if no other problem detected give it a couple months to see if your body adjusts?
My experience with Alcalabrutinib is, felt great for 2 months and then became very tired again. The consultant reduced the dosage in half and I have felt much better but far from perfect. I had the same experience with Ibrutinib previously….and I do sense the medics do not have an answer for fatigue and so their response comes over as though they do not believe you!
Acalabrutinib releases all the white cells into your blood. Mine went to almost 300k for a few months. These cells then start to die and release toxin as the die off. My doctor checked my uric acid levels routinely the first few months and put me on a short course of allopurinol (normally given for gout) to help lower my uric acid levels. My platelets also dropped some and we eventually dropped the acalabrutinib dose a bit and my white count came down more slowly. During the first few months I had blood work done weekly to keep tabs on everything. Hope you feel better
I could not tolerate Calquence because of completely disabling headaches. My oncologist at Stanford changed me to Brukinsa which I have now been on for 6 months without experiencing a single side effect and have stellar labs.
Sorry to hear you’re suffering from fatigue and hope your medics can point to the reason. However in the meantime can I direct you to the Leukemia care webinar on Thursday last. It was excellent as the speaker was from a fatigue clinic in Bath and she was meeting daily with people trying to live with it. Mainly those on Leukemia treatments, chemotherapy and now, long covid.
Worth a listen to.
Sorry I don’t know how to send a link but if you contact them they will point you in the right direction.
I'm sorry you are feeling poorly. Acalabrutinib is not chemotherapy. It is a targeted btk inhibitor. Everyone is different, but your doctor should be running blood tests to see what are other possible causes. I've been on it for 5 months and have no fatigue. I hope you feel better.
One thing my body has become aware of in the ten years since I have had CLL is the effects of a drug that I am taking and the pre and post comparison of how I feel when I have had to start a new drug. I am now on Venetoclax and doing well, but have a slightly low red blood count which I attribute to my significant tiredness.
However, I am a veteran of Ibrutinib and Acalabrutinib and I can attest to. the fact that they just didn’t work for me long term. Short term I was fine, but longer term I had a litany of issues develop the most significant of which was a serious arrhythmia that forced me off. I had to stop everything and go with just IVIG until I was hit with a serious anemia that almost killed me, which forced me onto Venetoclax.
I would pay attention to the document usually entitled dosing information which you can download from the web, as it will contain all of the significant side effects of these meds. Chances are, your doctor is not very well versed in them, I don’t feel mine have been as well versed as they should be, but become cognizant of what is happening in your body and use the dosing guide as just that, something to tell you what the types of side effects people had from these drugs during their trials and since.
Hi, Tomaljoe69. I’ve been on Acalabrutinib since November 2018 and I, too, had a little trouble adjusting. A lot of wooziness at first, but once I got past the first few months snd separated the doses, the side effects waned. Since then I have not felt any fatigue and, quite the opposite, have regained good energy levels. I may be wrong about this, but I thought Acalabrutinib was a very targeted drug specifically for patients who had already gone through some form of chemo. I went through a 6-month infusion treatment of Rituximab+Fluodarabine in 2011, for reference. I’m surprised you were started straight off on Acalabrutinib for recently diagnosed CLL, but that just may be my ignorance! Here’s hoping you feel better soon.
Hello Tomaljoe69, I too have joined the Acalabrutinib club, the headaches are awful, I have always had an afternoon nap, now its impossible, I am tired, but can't sleep, however, its only been a month, so as its only one tablet a day, I'll try and persevere. I am also on Aciclovir and a stomach tablet, I was on Allopurinol but they stopped that after one month. I have a picc line for blood tests, but they will remove it soon. Worst than the headache is the hair loss and not just when I brush my or comb my hair. Keeping the Dyson very busy. When I ask my oncology team they say well its so new, we don't know what all the side effects are. My numbers are all over the place, last week I had to have those tummy injections to bring up neutrophils. I wish all of you and your families all the best, and keep taking the tablets.
If you are tired then rest and sleep when you need to and are able to. In the meantime the doctor's test recommendations sound worth following up on. I was continually fatigued until my CLL improved due to the medication I was on. I am now on Acalabrutinib and have no fatigue.
Hi. I was on iBrutinib for 3 years and switched to Calquence since May. I experienced headaches joint pain and dry mouth. I have just discontinued it completely for 3-4 weeks to "see" if there is any difference. BTW I too experienced fatigue but I am not sure yet if it is related.
thank you for your replies, it’s 12 months since I posted and it’s took me this long to reply as I don’t feel comfortable coming on the site as it reminds me of my condition. I would rather just forget about it. My haematologist admitted that he lied to me about the fatigue and said he thought it was not in my best interest to dwell on the possible side effects. My energy levels are up but I’m tired a lot of the time and have lost a lot of strength and aerobic fitness. I have an hiatus hernia which results in acid reflux. I had to stop taking omezparole as it interacted with the acalabrutanib so now take famotadine which isn’t as effective. However I take kefir everyday and this helps, before using kefir I had 12 months of sloppy stools, kefir has sorted this out. Coincidentally I work with a microbiologist and he said that it is likely the cancer meds are damaging the bacteria with my intestines. Interesting to hear that low iron is also a side effect as that is being investigated as well. I do have trouble sleeping and my body aches sometimes but what can i do other than get on with it. Thanks again everyone and I hope all goes well for everyone
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