Calquence swelling and blood in urine

[c8385m]

After 18 days on imbruvica my wife was hospitalized due to side effects. 30 days later put on Calquence. Now, after 24 days she has random blood visible in urine , severe neck pain and severe leg , ankle and foot swelling. We see doctor tomorrow. But, has anyone experienced any of these issues? Anything you know of that helps? Thanks. I’m just the caregiver but I live it everyday with her.

[cajunjeff]

Joint pain and some hematuria (blood in urine) are not uncommon side effects with acalabrutinib (calquence) or any other btk inhibitor. Both should be reported to your doctor.

If the hematuria is microscopic (not visible red in urine), it might be nothing. That's the doctor's call whether to look for other hematuria causes. I had some hematuria with ibrutinib which did not concern my doctors.

The joint pain, if caused by acalabrutinib, might be something you hope passes. Many of he side effects with acalabrutinib appear early on and later resolve. There are a small % of people who juts cant tolerate it. Her doctor might even consider reducing her dose for a while.

Her is an article on a recent study addressing some side effects of calquence. If these symptoms are calquence related, there appears to be a good chance she can work through them. I hope she does, its a good drug for me so far.

oncnursingnews.com/view/aca...

[c8385m in reply to cajunjeff]

Thank you so much. This has been a 10 year journey. She was in a trial for a year then was put on revlimid for 7 years. No issues and numbers were normal. Doctor took her off revlimid over a year ago because she was getting upper respiratory infections, and nothing but problems since. I think doctor had to take her off since revlimid is not approved for cLL. So far it seems Calquence is the lesser of the evils as far as side effects. At least she has not been hospitalized again because of it yet. After 3 weeks on it no improvement in numbers. We’ll see what tomorrow brings. Again thank you all for the information on this forum.

[sllincolorado in reply to c8385m]

My recollection is that the numbers get worse the first month or so on Calquence/acalabrutinib and then they go in the right directions. My doc told me that before I started btk inhibitors that it would look worse so I was prepared.

[AussieNeil Administrator in reply to c8385m]

CLL clinical trials of Revlimid (lenalidomide) hoped for promising outcomes, as unlike other treatment drugs at the time there was an indication that Revlimid could assist in the recovery of the immune system. Unfortunately the side effect/adverse event profile (including ironically infections) was not as good as other treatments under trial, so it never achieved FDA approval for CLL.

No improvement after three weeks on Calquence is quite normal. As sllincolorado noted, the lymphocyte count actually worsens in about two thirds of CLL patients and it can take several months before the lymphocyte count drops below the baseline count at the start of therapy. Experience with ibrutinib, the first BTK drug even found that some patients had very slow reductions in their lymphocyte counts after a year, but still did well. It sometimes takes a while for BTK drugs to convince CLL cells to leave the nodes, spleen and bone marrow for the blood stream, where they eventually die.

Neil

[Pageboy]

Try and be patient with Acalabrutinib. As others have said problems tend to be at the beginning and - for most- taper off. It doesn’t have the ‘wow’ factor of Venetoclax in terms of numbers but in six months or so you might look back and think ‘wow’ I feel pretty good and my blood counts are amazing from where I started. Hope it works in time for your wife.

[Caliban29]

Hi c8385m

I have been taking Imbruvica for 10 month now. During this period I had legs pain,, blood in my urine, pain everywhere, etc so these side effects are common but what is different is the intensity and the complications of those side effects. I am lucky enough to have less than severed side effects but everybody is different . I hope your wife feels better.