acalibruinub and cll

[scaler59]

I have been on acalibruinub for 18 months and ibruinub 24 months. my question is acute fatigue. It has gotten so bad I can hardly stand up. Is there anything that can be done?

[AussieNeil Partner Administrator]

Have you had other possible causes of your fatigue investigated before going down the path of what changes to make if it's CLL treatment related? It could be something like sleep apnoea for example.

If your fatigue is thought to be related to your CLL treatment, then your specialist might be prepared to consider dose reduction or perhaps even a treatment holiday, to see if your fatigue lifts. That could take a few months off medication before you see any change. Adding venetoclax to get your tumour burden low enough for a break from treatment may be an option to enable you to have that treatment holiday if your specialist doesn't consider your CLL to be well enough under control currently.

This CLL Society article covers the topic in more detail:

cllsociety.org/2018/09/cll-...

M D Anderson have investigated Ruxolitinib (Jakafi) in a clinical trial, which helped some, but it's very expensive. Also, don't overlook exercise. Even accomplishing a small amount may help:

patientpower.info/what-clin...

Neil

[Walkingtall62 in reply to AussieNeil]

Thanks for posting this. I am almost up to my two years of being on Acalabrutinib. My body in the past thrived on exercise. It is now so hard to chuck myself out there and I ache so much on return I have to lie down for a little while. GP said tests showed I was anaemic, consultant said test showed I wasn’t!! Within a two week period. I just try and live with fatigue, which hasn’t always been there, would say last six months at a guess. knowing I won’t get any worse (I think). Have consultant appointment in four weeks. I will discuss lowering the dosage. Would love to exercise more, but then the despondent brain kicks in. I don’t want to up anxiety medication is case this slows me down more. I am not alone 😄

[scaler59 in reply to AussieNeil]

Thank you for your reply

[whmk]

Are you now on acalabrutinib for the last 18 months? Have you been fatigued for all that time?

[scaler59 in reply to whmk]

Only for the last 6 mos.

[whmk in reply to scaler59]

I am now 3 weeks into Acalabrutinib and I am experiencing the same fatigue you describe with unclear causes.

[kitchengardener2]

I mentioned to my consultant that I had never felt ill at all. I was only diagnosed because of a raised lymph node. She keeps asking if I am tired, she couldn't understand why, particularly just before I started treatment, that I wasn't exhausted. I started Acalabrutinib last August and thankfully it's still doing well for me. My blood numbers appear good and I still feel very well. I walk probably 3/4 miles normally each day, when I am not gardening. At the moment I spend probably 6 hours a day working outside. My consultant did say that without treatment, I would have eventually become very tired. She doesn't want to speak to me now until August.

[scaler59 in reply to kitchengardener2]

Thanks for the info

[LeoPa]

How is your hemoglobin? Low hemoglobin can cause fatigue.

[scaler59 in reply to LeoPa]

I will check on that, thanks

[spanish36]

Hi I have completed 22 months taking Acalabrutinib. My markers are approaching the normal range.

The fatigue which plagued my days is all but gone. Fantastic life now compared to a year ago.

Im real sorry its not working for you. Is there something else amiss?

All the best finding a solution as I recall too well the nightmare of exhausting fatigue.

best regards

[scaler59 in reply to spanish36]

Thank You

[OaktownA in reply to spanish36]

Did you feel fatigued by A-brutinib, and now it has subsided? My husband has been on it for 14 months and still can't exercise like he used to; 30-45 mins a day is his max, which is better than it was when he began, or even 6 months ago. Hoping it will fade completely at some point....

[spanish36 in reply to OaktownA]

Hi

Unfortunately as I also have lung and heart concerns my level of exercise has been restricted for a few years.

However I can enjoy undertaking more activity since several months of taking Acalabrutinib were completed.

The most significant benefit is the remarkable reduction in my prior fatigue and exhaustion.

A year ago I spent every afternoon asleep in my recliner. Totally fatigued even though no obvious reason was visible....other than the impact of my CLL....

I do have a short rest in the afternoon but not a sleep. Plus my energy levels enable me to be much more active and wanting to get stuck into projects.

All the best.

Cheers

Ross

[Cllsller]

My hem/onc switched me from Ibrutinib to Acalabrutinib because of side effects. Unfortunately I have developed severe headaches. Other than that I feel fine. Has anyone else dealt with this and is it just something I have to live with?

[AussieNeil Partner Administrator in reply to Cllsller]

Severe headaches is a fairly common occurrence when starting acalabrutinib/Calquence, but they nearly always disappear after a few weeks. They usually respond well to caffeine, sometimes with the addition of Tylenol/Panadol/APAP (paracetamol/acetaminophen). You can even buy a combination paracetamol/acetaminophen pill including caffeine.

The incidence other side effects with this treatment drug also reduces over time, with the exception of the risk of developing high blood pressure.

Neil

[Elle_V]

Hi there,

Did you start with Ibrutinib then go to Acalabrutinib or the other way around? I have fatigue on Ibrutinib. My hematologist is going to be switching me to Acalabrutinib hoping to see an improvement in my fatigue.

[MS01]

Acalabrutinib. Ibrutinib.

[narl]

I had terrible fatigue when I was on Ibrutinib so I went down to two pills after A few months,then went down to one. after a year I stopped it all together because it caused a fib. My neighbors started about the same time I did on it he's still on it he takes a lower dosage too but he doesn't like it either he said he might as well just go ahead and give up if he's going to be asleep all the time. I personally feel like these drugs should be weight adjusted, I don't think they should be giving everybody the same dosage, and they've not really never addressed that issue in anything I've seen, I think there's a lot of people who could take half the dosage and still do well, but drug companies want to sell drugs.

[labgypsy in reply to narl]

I agree with your weight/dosage idea. Why does my scrawny 120 pounds need as much med as a 240 pound man? Great thought, narl.

[AussieNeil Partner Administrator in reply to labgypsy]

Labgypsy and narl ,

With respect to ibrutinib dosing and weight, there have been number of dose reduction clinical trials, but frustratingly, none reported patient weight, so we are still none the wiser other than for anecdotal sharing. Years back, the manufacturer of ibrutinib was rightly criticised for introducing a single 420mg capsule with plans to eliminate the 140mg capsule or keeping pricing the same, irrespective of dose. They then wisely reversed their decision.

Neil

[PaulaS Volunteer in reply to labgypsy]

Hi narl and labgypsy

I agree with you , re the question of adjusting drug doses for different body weights. Some doctors reckon it's OK to give 2.5 mg Ibrutinib daily, for every 1 kg of patient's body weight. On that basis, a 56 kg person would need 140 mg - not the 420 mg that's usually given. (That was Ibrutinib, it may be different with Acalabrutinib).

I don't know if these doctors based their decision on any research or just their own experience, but for such powerful drugs like Ibrutinib and Acalabrutinib, it does seem sensible to adjust doses according to body weight.

When I only weighed about 54 kg, I was started on 420 mg of Ibrutinib. I had a LOT of nasty side effects. Some of these disappeared with time, without changing the dose, but some continued. When I reduced to 140 mg Ibrutinib daily, the remaining side effects went away. The low dose of Ibrutinib continues to control my CLL very well, several years later.

I hope you both work out what's best for you.

Paula

[moty3012]

My experience is that the dose given to us is too big if your blood test is close to normal and steady.Try to reduce dose.

140-210mg ibr should be enough to sustain your numbers.

[Walkingtall62]

Hi, I would like to comment further on fatigue. I am a strong believer that all medications of the same drug are not the same. The manufacturers will not give precise quantities of the fillers as this is ‘their secret’. This secret affects many lives, many thinking they are still sick. I recently took citalopram from another supplier from normal (which I have had before, and don’t like it - it was the only manufacturer available in all the pharmacists I phoned!). The aching and fatigue was phenomenal, my stress levels were way up, the first three weeks felt like I was starting the drug all over again. Six weeks later I could cope no longer. Got a new prescription, found a manufacturer I like and within a week, the anxiety stabilised AND the chronic aching and fatigue disappeared. I have kept the last two weeks of these pills and would love to have them analysed, and also the ones I like for comparison. Does anyone in the UK know where I can get this done in the UK. At the moment I am happy with my thyroxine and seem to be able to obtain the same manufacturer each time. My poor pharmacist!! Any advice would be gratefully appreciated. Thanks a million