When do you start feeling better with A-brutinib?

[OaktownA]

My husband started Acalabrutinib in mid-April, and his numbers have definitely improved (and swollen nodes/spleen no longer bothering). However, he's still quite fatigued. While he was still in W&W, he would regularly run 5-6 miles a day; now, he struggles to get in a mile once a week, and is low energy most days (but still working full time). His oncologist told him once the A-brutinib really kicks in, he should really feel better and be able to carry on as usual...what are other people's experiences with fatigue and being able to exercise regularly?

[johnl]

I was a runner, but for about a year before I started treatment I couldn't run. I got into a ibrutinib/venetoclax trial. After 3 mos on ibrutinib solo I still couldn't run. Then they added the venetoclax, and after about 3 wks I was able to run again. I think I would of got to the place on ibrutinib solo, it just would have taken longer.

john

[country76]

I am taking Alacabrutinib and do have some fatigue. I have to get my walk AM's. Some days I am Ok. I also find I have to eat well and make sure I am drinking the fluids.

I have noticed recently that I do not have bruising anymore. I was on Ibrutinib and was usually covered with bruises especially on my forearms. I took Ibrutinib for 14 months. Then I switched to Alacabrutinib and most of my side effects were gone except I did have some bruising however not as much.

Now a year later on Alacabrutinib, I have noticed no bruises. So I am hoping my energy returns over time. It is mainly in the afternoons I need a nap sometimes.

[Zia2 in reply to country76]

I switched to Acala from Ibrutinib as well and have good days and not so good and sleep longer at night and nap too when possible. I’m still dealing with other side effects but have you figured out WHY “some days” you are ok? I can’t make sense of it.

[country76 in reply to Zia2]

Days that I am very sodium careful make a difference and care of food choices, making sure what I put in my mouth is high quality. Also drinking 2-3 liters of water. Recently I went back to taking B12 and that has made a difference.

A couple of times I forgot my pill and felt really good like a weight was lifted. It is hard to explain. I didn't even realize it. Recently I have noticed hardly any bruising.

Sometimes I sleep later and take a nap. I am retired so I don't have to go to work. I would imagine that would make a difference. Somedays my legs feel tired when I take my walk. I force myself to walk those days.

To tell you the truth compared to Ibrutinib this is a walk in the park. I am very happy and looking forward to the day we can all get off these drugs.

I had my labs today and my numbers are great!! They are all in the normal range.

[Zia2 in reply to country76]

Thanks for your response and congratulations!

[DoriZett]

Fatigue was one of the reasons I had to start treatment. I am in an Acalabrutinib clinical trial. The fatigue has improved somewhat. It was gradual and I am now 4+ years into the trial. Fatigue is still an issue for me and has changed my life. It is not known why some CLLers have more fatigue than others. All my numbers look great and my nodes are 96% in remission so the drug is doing good work. Wishing you and your husband all the best.

[81ue]

I still have fatigue after imbruvica and venetoclax. I'm exercising, and using coffee (morning, then afternoon) and I still feel like my day is over by 3pm. I'm not sure about how that helps energy for me, and not willing to stop either to find out.

[Stuff427]

I suffered from fatigue when I started Acalabrutinub a year ago. I found that my fatigue closely matched my red blood cell count. A year ago it was at 10, I was always tired now it's 14.7 and my energy has improved greatly not perfect but better.

[Biker7]

My husband was also fit before starting Acalabrutinib and had a lot of intense fatigue initially. It was debilitating physical exhaustion, not simple tiredness!

It was probably compounded because he had been having increased bouts of fatigue beforehand due to relapse.

He started keeping very simple records of his energy levels and exercise at the end of each day. It was soon apparent that he had to modify the amount of exercise, or pay the price the next day. Sometimes he woke fatigued for no apparent reason. But he kept exercising as much as his body would allow.

The first few months were the hardest, but then the fatigue episodes began decreasing. He started to have more energy and his spirit lifted with increasing exercise and just going outside.

At 10 weeks he had his last bout of severe fatigue!

Fatigue continues to strike occasionally but with decreasing intensity, frequency and length. These bouts are often due to too much exercise through his natural impatience to get back to normal.

After almost 9 months on life-saving Acalabrutinib, he’s doing well. We’re both far more relaxed. He still sometimes feels tired, but that can be attributed mostly due to age and insomnia.

So, there is light at the end of the dark tunnel of fatigue from Acalabrutinib! And on another encouraging note, a specialist told us that fitness prior to treatment has been shown to have a strong positive impact on treatment outcomes. All the best!

[OaktownA in reply to Biker7]

This is all very encouraging. My husband had a lot of fatigue leading up to starting treatment, and now routinely naps for several hours on the weekends…when before he was running multiple miles a day. So glad to hear that your specialist thinks pre-treatment fitness levels are a good indicator of good outcome, too. Best to you both!