acalabrutinib

[200185]

I have taken acalabrutinib almost a year and labs and lymph nodes are close to normal. Has anyone taken acalabrutinib longer with good results?

[AussieNeil Administrator]

Acalabrutinib is a second generation BTK inhibitor, following the extraordinary success of ibrutinib. There's an encouraging percentage of people from the early ibrutinib trials still maintaining control of their CLL after 10 years of ibrutinib monotherapy. Even better results are being reported with acalabrutinib, because less people quit as the side effects are more tolerable, but early trial participants are I think in their 5th or 6th year by now.

With the notable exception of the development of high blood pressure, controllable by medication, the incidence of side effects reduces over the years.

Only 10% of those on an early ibrutinib trial reached uMRD after 4 years, so it's likely with acalabrutinib that you'll stay on it indefinitely. Some members are able to take a drug holiday, more so if they can use venetoclax to get to uMRD.

If acalabrutinib stops working for you, it's important to stay on it as you transition to your next treatment, because sometimes tumour flare can occur. Going back on treatment reverses that, but it can frighteningly look like Richter's Transformation. There are non-covalent BTKi drugs in trial and it's possible to switch to one of these if you develop resistance to acalabrutinib. Venetoclax is one possibility among others.

I hope you get some confirming responses from members who have enjoyed long time acalabrutinib treatment success.

Neil

[uihwki]

Started acalabrutinib in 2018 and doing great. All labs are in the normal range except IgG which hovers around 300. As a result I get IVIG infusion every 3 months or more often if I'm having any kind of infections. No side effect from the acal.

[DoriZett]

I was on Acalabrutinib just shy of 5 years. Worked well for me but contraindicated with Prilosec (treats acid reflux). Dr. tried lesser acid reducers but I ended up with bleeding ulcers so no more Acalabrutinib! I am put back into Watch & Wait, I’m on Prilosec and ulcers have healed. Now we see how long to CLL/SLL relapse and maybe try Zanubrutinib next which can be taken with Prilosec. So sad I had to stop Acalabrutinib- it controlled my CLL/SLL well, with manageable side effects. Best to you with this amazing drug!

[GlasshalfFL04 in reply to DoriZett]

I just got notified by Astrazeneca that Acalabrutinib is going to be available in a tablet form which will allow it to be taken with antacids, and the like. Here's the press release:

astrazeneca.com/media-centr...

[spanish36]

Hi 200185

I began taking Acalabrutinib in August 2020. Two years coming up next month. August 2022...

My numbers began falling within six months after beginning treatment. Side effects were a bit rough during my first two months but not too uncomfortable.

After six months I suffered zero side effects.

My extreme fatigue, night sweats, etc which were severe before commencing treatment have all but disappeared. Life is normal and my numbers are not far from normal range.

Acalabrutinib has proved a wonder treatment for me. Fantastic.

Cheers

Spanish 36

[kitchengardener2]

I am the same as you, started Acalabrutinib last August, my new best friend, long may the good results continue. Stay safe xx

[200185 in reply to kitchengardener2]

Thanks for all the input. Good to see great results after years of taking acalabrutinib. Wishing all well!!!

[Agiledog]

Good news ahead for you, I’ll bet. I am 11q, unmutated and still got 68 months before having to move on to the next treatment. No noticeable SE’s, never missed a day of work or ever felt sick. Tiny increase in nodes and spleen was the relapse signal. Meanwhile V+R arrived along with pirtobrutinib, a new noncovalent BTKi. No telling what science will deliver for you after an expected good long ride. Very best wishes.Bud

[country76]

I started Alacabrutinib in 2021. I was taking Ibrutinib and had to switch due to side effects.

I have been doing very well on Alacabrutinib.

I would like to take Venetoclax to get to uMRD, however, my health plan won't cover 2 drugs.

[200185 in reply to country76]

Appreciate your replies about acalabrutinib and how well it’s working for you. Thank God for the cll researchers. They are our lifeline for sure!!