Day 39 on Imbruvica. Four Rituxan infusions this past month didn’t move my numbers much. Oncologist says we will forego more infusions and rely on Imbruvica. I’m still fairly healthy with a white count around 55,000 but recently I’ve had two attacks of pain starting in my right shoulder blade that quickly became incredibly painful and radiated to my entire back. I’ve never felt anything like it. Also my right kidney area feels sore all the time. Can anyone shed any light on this? Wishing you all well.
New Imbruvica patient questions. : Day 39 on... - CLL Support
New Imbruvica patient questions.
I don’t think the studies show that adding Rituxumab to ibrutinib changes progression free survival that much, so I think stopping rituxumab and staying on just ibrutinib is fine.
Ibrutinib can cause some odd joint pain, but many other things can too so it’s hard to say if your shoulder pain is related to ibrutinib or not. I think this is something to report to your doctor who can make decisions as it plays out.
Sometimes joint pain goes away and you never know what caused it. If it gets worse, your doctor can modify your ibrutinib dose to experiment and see if the pain goes away. If the pain stops as you pause ibrutinib, that can indict ibrutinib as the culprit.
If I had to bet money, I would think it wasn’t the meds. But I wouldn’t bet a lot.
A couple of months into my Ibrutinib treatment I had sudden, terrible hip pain, which turned out to be bursitis, something I never had before. I treated with ice for several weeks and it resolved. It could have been caused by the drug, but maybe not. I withheld the drug for several days, but the inflammation had already set in, so it made no difference. I resumed the Ibrutinib and have not had the problem since, though I do have muscle pain which Is common with Ibrutinib. Unfortunately, there don’t seem to be any clear connections to these strange and sudden events which Ibrutinib can easily be a suspect as cause. Best to report it to your hematologist and see what they advise, especially with the kidney pain.
I had Rituxan with Venetoclax. Previously I had to stop Ibrutinib because of side effects. I never had trouble with Rituxan and it worked well. I have now been on Acalabrutinib for 2 years with no problems and great control of CLL including <1 in 10,000 uMRD.