Acalabrutinib

[Haggar]

I’m taking Acalabrutinib with an antibiotic . I can’t understand that if I was to have infusion and a tablet I would only be on it for 7 months. But the same med in tablet form I am in it for life. Confused

[lankisterguy Volunteer]

Hi Haggar,

You might think of it like the tortoise and the hare. In the case of the combinations, it is like the rabbit sprinting and then a rest, but the BTKs are slow and steady like the turtle.

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Some patients and doctors get excellent results from the combinations like obinutuzumab / Gazyva plus venetoclax / Venclexta for one or two years and then a pause in treatment for several years. The first 2 months of this procedure are intense with lots of testing, visits to the infusion clinic etc. Some patients have conditions like kidney or liver issues that make this challenging or troublesome.

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Other patients and doctors decide on the lower rate, steady approach, of acala / Calquence that keeps their CLL under control and avoids the intense activity.

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I've tried both, but my CLL comes back much faster than other patients, so I have been on daily pills for the last 12 years.

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Len

[Haggar in reply to lankisterguy]

Thanks you have put it in a way that I understand. Thank you for that.

Shona

[Skyshark]

Acalabrutinib is continuous with or without the Obinutuzumab infusion.

The Obinutuzumab IV is given as 8 doses (9 days IV) during the first 6 cycles of Acalabrutinib. At the end of those 6 cycles Acalabrutinib continues.

It is a source of frustration to UK NHS doctors that A+O has not been approved by NICE for use by NHS in England. If they could use it, they would.

[Haggar in reply to Skyshark]

I am on Acalabrutinib for as long as it works .

[stevesmith1964 in reply to Skyshark]

I agree about NICE. I was diagnosed stage 4 with 100% marrow infiltration and went straight to a blood transfusion. If I had been under the NHS is would have had FCR which my consultant said won't work for me.... I went straight O+Ibrutinib 6 cycles and the just Ibrutinib now on twice daily Alcalibrutinib. I was in remission with 240days and now monitored with monthly bloods and 6 monthly uMRD flow.... as you can tell I was fortunate as I had private medical insurance.... I was diagnosed in second lockdown..... I didn't think I would be here with my insurance. My current treatment cost had exceed £500k.