I've been taking Calquence (Acalabrutinib) for CLL for 4 months now. So far few side effects apart from fatigue. I developed a kaleidoscope of bruises on my lower legs, accompanied by lumps, that have now faded, but with a few new ones reappearing. I now also have a rash, like measles on my lower arms, top of my legs and a little on my chest. It is slightly itchy.
The Haematologist says it is the drugs. Has anyone else experienced this from Calquence?
Yes, from my experience, this happens on Acalabrutinib.. More so on Ibrutinib and a lot less so on Zanabrutinib. Acalabrutinib also made me nauseated and I had to reduce to a half dose.
Thanks for your reply.
I did suffer from nausea the first few weeks of taking Acalabrutinib, but thankfully that ceased.
Yep! Me too! I don't really get many big bruises but do get Petechiae now and then. That's a pretty common side effect. I had a rash and then it disappeared. Thankfully never came back....at least so far.
Me too, both bruises and Petechiae. How are your platelets? Mine are slowly recovering. They were dipping below 100 before treatment and now are 118.
I haven't been given a platelet count but that is something that I needs to ask the haematologist when I next speak to her.
Fortunately, it hasn't been the weather for skirts or shorts so I've been able to hide the bruises on my legs. Few other side effects so I'm lucky as yet, but early days
yes. I have been on Acalabrutinib for more than two years and have had major bruising and rashes on lower legs, foot and arms several times. My consultant took me off Acal twice when swelling was bad, and back on half dose after a couple of weeks.
It seems this is quite common. I’m still in half dose and it seems to be keeping my bloods under control.
Haileybury
Good to hear that others have had similar experiences to mine - if 'good' is the right word!I hope tge half dose that you now take continues to help you.
yes I have same bruises and bumps and the fatigue but am in remission after taking Calquence for more than 6 months- the price of staying alive
That's great to hear. Yes, the lumps and bruises and rashes don't really matter that much, do they.
I’ve had the same side effects with Acalabrutinib. Seems like it is “normal”. As someone said, small price to pay for staying alive. Hope it doesn’t get any worse!🦋
Thanks for all your replies. It's helpful to be able to 'normalise' this side effect.This site is very informative and supportive
I agree. I’ve been able to get good information from this site. Sometimes better information than my doctors give me!😂Take care of yourself. Live in the present with gratitude. I try and practice that everyday.💜
Thanks so much Katie for your reply. I do try and remain optimistic and at the end of each day say my gratitude out loud. There is so much to be grateful for.
When I have a challenging day I always bring myself back to gratitude for my life, family, friends, and a beautiful sunny day. Being creative also helps me to feel one with God and the universe! 👩🦳
I’m also grateful that I finally paid off my grad school loan!!!😂😂😂
my husband has been on Ibrutinib for about 4 years now - blood looks good but over the last year and a half he’s developed terrible itchy rashes all over with the worst being on his lower legs. We are meeting with a specialist soon hoping for some answers as the itching just makes him crazy!
I have been on Acalabrutinib for almost 3 years. No problems for the first 2.5 years and in fact almost all my numbers were back to normal for the first time last December. Then, about 6 weeks ago, I started getting mosquito like bites on my arms, soon followed by up to quarter size rash on my legs - not painful but very itchy. Contacted cll specialist who basically said it could not be Acalabrutinib or cll itself because it was localized and not systemic. Sent me to my family physician who had no idea what it was - prescribed antihistamines and a hydrocortisone cream. Suspecting it was contact dermatitis, we switched laundry detergents and rewashed everything I came in contact with. Also started applying good quality moisturizer frequently.
Almost 4 weeks in, we thought we had things under control, until, unwittingly, I wore a brand new dress shirt to a party straight out of the bag. By the next day, the rash had spread to my chest and neck and multiplied on my arms and legs (especially on my lower arms and legs). At this point, nothing seemed to help the itching, even larger doses of antihistamines.
We are both logical people and, out of answers, we tried to figure out what had changed at the start of the year to bring on this major rash. This, what I would call extreme skin sensitivity, came out of the blue. The only thing that jumped out was that I started taking a high dose of iron supplements in December. My cll specialist thought my hemoglobin was slightly on the low side and that iron supplements might help. My family physician might have overdone it on the dosage. I stopped the supplements and within days my sores started to heal (I’m told that it may take weeks or even months to heal skin for an older person).
But I still wonder, given all the other anecdotal comments, whether Acalabrutinib alone or in combination with other drugs or supplements may increase skin sensitivity.
Still, given that Acal has provided a (hopefully lengthy) cll remission in my case, these itchy and uncomfortable side effects, at least for me are worth putting up with.
Hey Balcony
I'm about a Month and a half on Zanubrutinib, and I've had very few side effects. One of them is the bruising and rash things. The bruising is because we will bleed more easily when on any of the meds that end in brutonib. We bleed more easily and too much from small things, and of course that leads to the bruising. I have had only two incidences of the small reddish irregularly shaped rash type things; one on my left upper hand and the other on my right forearm. Both happened to occur after small wounds, with one on the hand from scratching an itch between fingers. The other was after an IVIG infusion. They both took a week or two to go away, but have not yet reoccurred. My fatigue hasn't been bad; actually, it was getting worse in the fourth and fifth years before I started Zanubrutinib. That fatigue and the horrible Night Sweats seemed to end right after I started the Zanubrutinib, but I still daily get a little more tired than I used to be. Then again, I'm now 76 and will be 77 in March.
Carl
O ya, i was a bruise pile. I called my self alligator skin. From Imbrovica and Acalabrutnib. Im off both now (seeing what happens). So far the alligator skin just keeps getting better. Still some bruising but to be expected. Nauseated from Aclabrutnib, big time. I could not take feeling like crap constantly, had to go even on reduced dose.23 years on this train ride.
I’ve been on Acalabruitnib for two years following a failed Venetclox treatment. Fatigue is still an issue, and I still bruise up easily, for the most part I have no idea what caused them. The red spots, and perpuria (sp?) come and go, but less frequently now. Best wishes for your treatment.
Bruising
Does every treatment have a price?
Jaypirca?
Constant skin rashes 
