starting acalabrutinib while waiting for pirtobrutinib to be FDA approved

[KLWC]

Venetoclax stopped working after 3 years and my husband has been on idealisib for several months. It isn’t working. His labs yesterday were terrible. Platelets the lowest they have ever been at 36. White blood count continues to double and it at 113 and hemoglobin is 8.8. A few weeks ago they ran a resistance test for BTK1 inhibitors since before venetoclax he was on imnritinim for 3 years. He isn’t resistant so that was good news. They are starting him on acalabrutinib and rituxin . He is exceptionally weak. And fairly discouraged. Has anyone been down this path?

[CaptRon1976]

Good luck and best wishes on Acalabrutinib try. Hope it buys lots of time. Most specialists will not use Pirtobrutinib off label or any treatment off label. Doctors not employed by large centers might. Let's hope Acal and rituximab work well and long.

[KLWC in reply to CaptRon1976]

Thanks for your reply. Not sure what you mean about the off label? He is being treated at Emory in Atlanta.

[CaptRon1976 in reply to KLWC]

Using available medicines that are approved for a diagnosis that is different than yours but not yet for your diagnosis which is not yet FDA approved for is commonly done in medicine and legal and ethical. However, large centers like Emory prefer to wait for completion of clinical trial and FDA approval before prescribing as a caution.

[spi3]

My husband was terribly sick when first diagnosed with CLL this Feb 2023 and started acalabrutinib and he bounced back fast - it was a miracle (his skin also turned normal from grey) I call his acalabrutinib his 'Angel" pills.

[KLWC in reply to spi3]

So good to hear and glad he is doing well!

[KelseyNoelle]

Good morning. I'm sorry to learn the Venetoclax stopped working. I've never had a med not work at this time, however I did take acalbrutinib alone and it worked wonderfully. Within 7 days my nodes were back to normal. My numbers began to improve immediately. I was on a fast slope the wrong way. I hope this is your same process. Since he isn't resistant, that's great news too. Possibly in a year or so the Pro will be approved by the FDA and that'll be an option too. Best wishes and prayers for you and your husband on this journey.

[KLWC]

Thank you for your reply, I appreciate it. So glad all is well with you.