after 3 years + of Calquence getting bad side effects

[Chillo]

My husband had been taking Calquence for 3 + years and has been working well. The labs are normal. But the Dr did not want him to stop. But a few months he is getting a lot unpleasant side effect. Like itching skin. Arthritis and a lot pain on the hands.

any comments are really appreciated.

[LeoPa]

Is he on an anti-inflammatory diet? If not it would be advisable to embark on one.

[Chillo in reply to LeoPa]

Leo, not he is not in any special diet. Thanks for your comment I will look into it.

[AntonMB]

I’m now into my 3rd year of calquence.

Into my second year I started having side effects (mine were more like regular chemotherapy symptoms; nausea etc) whhich I thought were from the Calquence but my consultant was not sure.

I saw my gp who took extra blood tests to rule out other issues and tweaked my other medication. When things didn’t improve after a few weeks, I asked my consultant to try a reduced dose of Calquence, which she agreed to on the condition that I could return to the recommended dose if it didn’t result in any improvement. I started the reduced dose in September 2023. My side effects have since reduced and my bloods remain stable, so my consultant is happy for me to stay on the reduced dose.

[Chillo in reply to AntonMB]

Anton, thanks for share. My husband has an appointment with oncologist on the 25th. We are going to ask for reduce dose or give a holiday from Calquence. We trust in God that guía us to a right dirección. Thanks again.

[flipperj]

I developed worsening side effects after being on Acalabrutinib for a year. My CLL specialist indicated that the late onset side effects can be difficult to manage. I made the switch to Zanubrutinib, and while far from perfect, it has been superior to Acalabrutinib for me.

[Chillo]

flipperj. Thanks for sharing. God bless you.

[Vizilo]

I developed a bad skin rash on my hands and knees at the beginning of this year, almost 3 years on Calquence. My blood numbers are almost normal too. After my cll specialist indicated that he did not think it was the cll or the Calquence, my family physician prescribed an antihistamine and a topical steroid cream for the itching. When I put on a new shirt a couple of weeks later without washing it, the rash got worse and spread over my torso as well. Nothing seemed to help it.

After six weeks of this, I tried to think back to whether anything new happened at the beginning of the year to make my skin so sensitive. The only thing I thought of was starting an iron supplement to nudge up my borderline low hemoglobin. I stopped the supplement and within several weeks my skin started to improve. My legs seem longest to clear but I am down to a daily over-the-counter antihistamine and daily moisturizer.

Do I think it is the cll or the Calquence? Probably. But at this point, after finally having normal blood numbers after almost 10 years, I’ll stick with the medication for now .

[Chillo in reply to Vizilo]

Thank you. 🙏

[Trackwarrior]

I'm off Calquence. Last summer I got crypto genic pneumonia. I was on massive steroids for months. Then came afib and was put on blood thinners and had to have a heart ablation. While on blood thinners got a bruise in my foot that would not stop bleeding inside. My foot blew up and blew out. was in the hospital for a month. 2 months since I'm still trying to get the wound to close. I'll never take Calquence again