Hi all,
After a week on Calquence, my hubs is in excruciating pain - from the hips down. Can barely walk, can't sleep, etc. The pharmacist thinks this is a side effect from the Calquence. He's been taking hydrocodone left over from a procedure and I'm applying BioFreeze, which sort of takes the edge off.
Anyone else experience debilitating pain? If so, what did you do about it? I'm considering taking him to the ER as it's Sunday and don't know how else to get him comfortable.
Thoughts?
Thanks!
I have a much longer answer but short term call the oncologist now. Btkis are known to cause this pain. They will likely prescribe short dose of steroids. Don’t accept opioids. Just for a few days. Then he should meet with doc asap to decide on next steps. Avoid ER if at all possible. You will likely be there for hours and could be exposed to covid.
Hubby is in a trial with acalabrutinib and venetoclax. He had extreme pain in one hip and muscle pain/tightening in the same leg to the extent that he was willing to use a wheelchair to move around but only for the essential things. He tried hot baths and ointments with some relief. After a minor surgery, he continued to take the hydrocodone for the hip pain and ended up with significant kidney/bladder issues. I don't recommend this path for relief, as we ended up in the ER and have more doctor appointments in the future. Our PT suggested that a muscle relaxant might help. The clinical trial nurse approved Skelexin prescription. It has helped in that he can now move around, go up and down stairs, and isn't stuck in his recliner. The pain is not gone, but is manageable.
I am glad the clinical trial nurse found something that helps. They might want to wait and see if the pain gets better in a few weeks.
He has my complete sympathy. That pain is brutal.
I see more and more posts about side effects from Acalabrutininb. It seems to follow similar path to Imbruvica. As we prescribe Acalabrutininb to more people the side effects are becoming obvious. Just like with all the other medications we are still in discovery stage and the big pharma does not really know as they originally tested on the small pool. After being on Imbruvica and had to discontinue after joint pain and rushes I started Acalabrutininb. It worked much better with minimal joint pain and some rushes gradually getting worse. This week my rashes went of control. It feels that my body gradually build intolerance to BTK inhibitors. I guess the I will have to talk to oncologist what next.
I was on Ibrutinib for 3 years with excruciating morning bone and joint pain among other nasty side effects. I recently switched to Acalabrutinib/Calquence to alleviate these side effects and after 6 weeks I feel like there have been no side effects at all - with the possible exception of diarrhea (but that might be unrelated). But the last couple of days I've been achy from the hips down and walking with a limp and struggling to get out of a chair, like a man twice my age. Wondering if this is just exertion or the Calquence. Following this thread for clues. Thanks all.
I have sll/mzl and am on zanubrutinib. I experienced excruciating pain in the hip and lower back especially with movement. After 3 days tried extra strength Tylenol and found this to help the pain. Lidocaine patches also helped a little.
CLL and Calquence 
after 3 years + of Calquence getting bad side effects 
Bruised and swollen arm from Calquence.
Calquence and decreased hemoglobin
