Information on chronic lymphocytic leukemia

[William1955]

Starting treatment next week with a infusion of obinutuzumab for 4 hours twice a week then off 28 days will do 6 cycles and start taking acalabrutinib twice a day for the rest of my life

Wanting to see if anyone is doing this are has so I will know what to expect will it do any good or put it in to remission any help would be appreciated and how long will it last if it works

[gardening-girl]

William, is this part of a clinical trial? I'm not sure from what you have written whether you start acalabrutinib only after the 6 cycles of obinutuzumab. When do you start taking the acalabrutinib?

Wishing you well!

[William1955 in reply to gardening-girl]

No it is not and I will be taking the acalabrutinib starting treatment I was trying to find it if anyone else has done and what the outcome was

[SofiaDeo in reply to William1955]

I doubt you will find many who have already taken this combo since it is the early phase of clinical trials. I am not seeing any completed ones. There is no way to know the percentages of patients who have a lasting remission, it's being studied:

clinicaltrials.gov/ct2/resu...

[thompsonellen]

I was diagnosed in Dec 2015 and participated in a clinical trial with obinutuzumab, venetoclax, and ibrutinib. They switched me to acalabrutinib. I am 17p deleted, unmutated and have other high risk indicators, i.e. I am a worst case scenario. I got about 5 years before I started to relapse (I am at very early stages of that phase, only know because of frequent blood work). Ibrutinib and acalabrutinib are one type of BTK inhibitors and you can get resistant to them, which I did. My guess is you will do very well. If you are lucky, you will enjoy many years of feeling great and there will be something else we aren't even talking about in 5 years that you'll switch to need be. The first infusion isn't fun for many (I was miserably cold for maybe an hour, but the staff was amazing), but the rest of it is easy. Good luck.

[William1955]

Thank you fir that information

[SERVrider]

William,

They will probably dose you up with a bezodiazepene and something else first, then infuse the obinutuzumab very, very slowly watching you like a hawk the while in case of an adverse reaction. The second day's infusion will be quicker and with fewer possible side-effects.

[larrymarion]

Great info from thompsonellen, and let me add from my own experience. I was on ibrutinib for 5.5 years. Lousy side effects but the drug did its job on my 11q/unmutated/complex karyotype CLL. Rather than stay on ibrutinib forever, my doc switched me to venetoclax and 16 months later i was uMRD. In other words, the CLL wasn't visible in my blood. Of course it will come back, but by then (no one knows when, BTW), there will be other drugs. You shouldn't expect to be on acalabrutinib forever. As thompsonellen noted, you may grow resistant--that happens for a small fraction of patients. Or you may find a doc that can switch you to venetoclax. Or one of the new drugs currently in clinical trials may be available. One amazing cousin of acalabrutinib, currently in clinical trials, is called Pirtobrutinib and it may be even more effective. be optimistic!

[DelrayDave in reply to larrymarion]

I also have been switched from ibrutinib (6 plus years) to venetoclax monotherapy. Trisomy 12 unmutated. We also hope to get to uMRD after a year or so. Thank you for sharing. Gives me hope.

David

[13SA21]

Hello I will also start my A / O treatment next week:

2 times a day Acalabrutinib 100mg, for 28 days without stopping until intolerance or ineffectiveness then from the second cycle of 28 days they will add the infusions of Obinutuzumab : infusion day 1, 8, 15, for the 6 other cycles of O intravenous only J1.

Michele

Woman / France

3 years of chronic lymphocytic leukemia

First treatment

Ganglionic form

TP53 +

[Blackdog2206 in reply to 13SA21]

I'm on this clinical trial it is going very well for me!!!!