Acalabrutnib & Fatigue

[Corgiluvr]

I am curious if anyone has experienced more fatigue with the Acalabrutnib treatment? I have been on Calquence since September. Three months into treatment, I experienced extreme fatigue that is not subsiding. Thank you in advance for your comments.

[Smith123456]

many of us have fatigue either from the drugs or from the disease.just the way it is.

[Corgiluvr in reply to Smith123456]

You are right. I have been telling my doctors that I was born tired! I will be stepping up my water intake and exercise.

[happyclappy]

Oh, great! Only been on Acalabrutinib 5 weeks and was hoping this fatigue would be coming to an end soon. My boss has suggested reducing my hours but, financially, I'd be better off going sick. But I don't want to go sick if there's no end in sight.And it's not just the fatigue. Achy joints and cramp! How long does that last?

Hang in there Corgi!

Pete

[BluMts in reply to happyclappy]

Are you comparing your symptoms to being on watch and wait, Ibrutinib or another treatment? Would like to know.

[happyclappy in reply to BluMts]

Damn fine question! Is it symptoms of CLL/cryoglobulinemia, side effects of the Acalabrutinib or am I just getting old? I'd like to think, at 58, it's not age!

[Corgiluvr in reply to happyclappy]

Hi Happyclappy. Iam so sorry about the issues with the cramps and joint pain. I'm hoping this won't last long for you. I'm working on shifting my mindset to feeling like a person with energy! Best to you.

[happyclappy in reply to Corgiluvr]

Thanks Corgi. There are plenty more people a lot worse off than me so I can grin a bear it! Something has to get you!

Keep well, keep safe.

Pete

[flyhigher]

I've also been on Acalabrutinib since Sept, but mostly on half-dose due to side effects (spontaneous bleeding). At the beginning I was given three blood transfusions over three weeks or so because of the levels of anaemia, and I reckon I have experienced a definite decrease in fatigue pre-diagnosis. Indeed, I've been measuring my walking ability (5 miles a day give or take) and I've increased my average speed by over 10% from a somewhat breathless (but I thought rather good) 3.2mph in Aug 2020 to a sturdy 3.6mph yesterday.

What is odd that my statins regularly caused cramp at night. They were stopped to sort out the Acalabrutinib side effects. Having restarted three months ago, I've had no cramps whatsoever.

I don't understand CLL - the symptons and the side-effects seem to vary so wildly! The diagnosis for me came as a bolt from the blue. I'm 75.

[onu1tadi2 in reply to flyhigher]

I have noticed several researchers say side effects of CLL meds not properly known or studied enough. I have had fatigue off and on meds. It comes and goes. I had cramps that stopped after 4 months off ibrut. Going onto acalabrutinib soon but possibly reduced dose. I only took 2 instead of 3 ibrut. Still in remission.

[Corgiluvr in reply to flyhigher]

Thank you for your reply flyhigher. So good to hear that your fatigue has decreased. And your cramps too! I am impressed with your dedication to exercising. I know the exercise helps - and regardless of how we feel, we need to push through it.

You are right about the symptoms and side effects - we are all different. Mine could be combo of the Common Variable Immune Deficiency (CVID) and SLL. I am 56 - and hope to soon feel my age (or younger):).

[MrMidnight]

Hi Corgi, I haven't taken Calquence but in February 2016 I was started on another second-generation Ibrutinib — Zanubrutinib / Brukinsa.

I had crippling fatigue for 10 months... I could barely get out the door on a bad day (of which they were many) and I had to be wheeled along hospital corridors in a wheelchair for my appointments.

By late 2016, I picked up a little and could walk about 600m once a day... That lasted until mid-2018, when my blood counts were finally normal and within a month I found I could could walk around 3.5kms, sometimes twice a day.

My conclusion with CLL and its treatment is that the path it takes is pretty unpredictable and you have to roll with it and not put undue expectations on yourself. I was apparently the only patient among 50 on Zanubrutinib who had severe fatigue — which made me feel like the class dunce — but there was nothing I could do about it.

[Corgiluvr in reply to MrMidnight]

Thank you for sharing you story and advice. I will join you in your "dunce" class as it seems that most don't feel the fatigue on Acalabrutnib! I hope your 2nd generation treatment is working well for you.

[MaxSmart in reply to MrMidnight]

Hello Mr. Midnight, thanks for sharing your story. I’m also on Zanubrutinib. It’s been a year of fatigue and achy joints. My blood counts are normal but the side effects are still there so add one more dunce into the class.

[Saddlemountain]

I am experiencing extreme fatigue after I take a caquence pill each day, in the morning. I usually drink a lot of water to flush out the cancer cells.

[Corgiluvr in reply to Saddlemountain]

Hi Saddlemountain. I was drinking so much water in the beginning - and need to increase my intake again. Thanks for the reminder. How are the results for you with Calquence?

[4Glory]

Hi Corgi! I had an excellent run with Calquence until I had to go off of it twice this year for minor procedures. I think it messed with my "balance". Between June 2020-2/2021 I was doing well on it -- had tons of energy and didn't gain weight. As of March this seems to have come to an end! But I also turned 50 and I know everything is downhill after that.... LOL.....But like someone else said, "it comes with the territory" -- I'll take a little fatigue and weight gain for the crushing of my cancer.

[onu1tadi2 in reply to 4Glory]

Am about to go on acalabrutinib after 5 month holiday from ibrut. During this break period developed fatigue recently. Will see tomorrow from blood tests what is up. Great variety of effects depending on individual.

[Corgiluvr in reply to 4Glory]

4Glory thank you for the response. You are still young! I started gaining weight within a few months on Calquence - but it was the fatigue that is difficult for me.

Several members had good advice about drinking more water and pushing yourself to exercise. I will be doing both.

It seems that the Calquence is working well for you - so happy to hear that!

[Vizilo]

I have been on Calquence for 10 weeks (after 7 years w&w). Also experiencing more fatigue like others. It sounds counterintuitive but some exercise seems to help. Make it as strenuous as you can. But if you’re not up to it, even a regular fresh air walk might help.

[Corgiluvr in reply to Vizilo]

Hi Vizilo. Thank you for your reply. You are probably right about the exercise... several members suggested this as well. I will step up the walking and drink more water. It's always good to be outdoors enjoying God's beauty. Wishing you the best with your treatment.

[BluMts]

Are you comparing your symptoms to being on watch and wait, Ibrutinib or another treatment?

[Corgiluvr in reply to BluMts]

I have only had one treatment - Calquence. I was diagnosed in the Summer of 2019 - not sure how long I had SLL. I am comparing my symptoms prior to the Calquence. I have always battled fatigue, but it seemed to accelerate with Calquence. It could be unrelated.

[strick]

I have been on Calquence for one week and am experiencing extreme fatigue 2 hours after taking the morning pill. I did not have fatigue prior to starting treatment. I was told it would be 2 weeks before things would start to improve. I am looking for stories from those that have experienced improvement in these side effects in a reasonable period of time.