Acalabrutinib not working any more

[19930B]

Hello everyone, I pray you all are doing great. I have been taking Acalabrutinib for 2 years suddenly felt a lump in my neck, had a scan and they found lumps in my armpit, chest and groin. Will be changing my treatment to Venetoclax and rituxmab.

I am a bit worried about the side effects and the success rate. Have anyone had similar experience or have the same treatment? Any word of encouragement will do. Hopefully one day there will be a cure. Praying for you all.

[Alex830]

Acalabrutinib stopped working for me after 9 months. Changed to Venetoclax and Rituximab. Doing well now, had a bit of a rough start but it all worked out. I actually feel better on Venetoclax than acalabrutinib, have to add I never ramped up to 400 mg Venetoclax but 200 mg seems to do the trick.

[Sraoulw in reply to Alex830]

Standard of care in USA is venetoclax plus something other than ritiximab

Can’t remember the name but I think it starts wit an O

[Alex830 in reply to Sraoulw]

Because this was my 2nd treatment, standard procedure is Venetoclax and Rituximab, first time naive treatment is Venetoclax and obinutuzimab.

[Skyshark in reply to Alex830]

When approval of V+O for everyone without del(17p)/TP53mut and without CDF funding comes up for comments we have a chance to change this by asking for approval of V+O with 2 years of Venetoclax for Relapsed/Refractory, suggest with CDF funding. This 'GID' used to have a 2025 date on it but it's now back to TBC [1].

nice.org.uk/guidance/indeve...

The 1st line CLL13/GIVe trial has demonstrated that 12 cycles V+O are far superior to 12 cycles V+R. I can't see a R/R trial in the near future.

nejm.org/doi/suppl/10.1056/...

[1] Maybe NICE have figured out that everyone has been offered Acalabrutinib or V+O as first line since the 2022 BHS guidelines were published and maybe since Acalabrutinib was approved in 2021. NHS Doctors appear to have circumvented the restrictions of NICE approvals by not testing IgHV. The criteria are del(17p)/TP53mut and suitability for FCR, no requirement to know IgHV status even though by BHS 2022 guidelines it determines suitability for FCR. Without knowledge of mCLL or uCLL, everyone choosing Acalabrutinib is unsuitable for FCR and everyone choosing V+O is suitable for FCR and needs CDF funding.

[Alex830 in reply to Skyshark]

I actually changed from Rituximab to acalabrutinib because of all the side effects I had. Did take some calls from my doctor to get it approved. Unfortunately obinutuzimab gave the same side effects but I am the exception on the rule, most people do fine after the first infusion.

[19930B in reply to Alex830]

Thank you Alex830 for taking out time to reply. Your words really encouraged me. I appreciate you. I am not as scared as I was when I sent the post. I hope 200mg will do it for me. Cannot thank you enough.

[Zigster49]

I am so sorry to hear your distressing news. If you can absorb it quickly and then look ahead. When I came out of remission, I had the option of just Zanubrutinib with minimal side effects, or combining Acalabrutinib with Ventoclax. I think Ventoclax is worth what side effects I’ve had as I just found out my detectable cancer cells have decreased dramatically in 5 months! Keep hope alive!

[19930B in reply to Zigster49]

I love this …... “ If you can absorb it quickly and then look ahead.” You really raised my hope. As long as the treatments work I am good. I had breast cancer 5 years ago and had Chemo so I can handle any side effect as long the treatment works. Thank you so much, I am grateful. Wishing you all the best.

[Shepherd777]

Venetoclax put me into 3 years and 7 months remission after 11 months and on a reduced rate of 200 mg and sometimes 100mg. The difference and change was very noticeable in blood work within 4 weeks.

[Nicebaps]

Hi and good morning.

I was on V (mono) but for 4 years with very few side effects other than being neutropenic for most of the time. Even that didn't wasn't an issue. From my experience, if you do start Venetoclax and it should be on ramp up. Make sure you drink plenty of fluids. If you can, at least 3 litres a day. This will reduce the risk of TLS.

I hope it works for you and wish you the best.

Colin

[19930B in reply to Nicebaps]

I will really drink as much water as I can to fight the side effects. 400mg for two years is a long time without any side effects is JACKPOT. You will continue to win, we will. Thanks for taking out time to encourage me, I do appreciate.

[OWLS26]

Hi, I’ve been on Venetoclax 400 mg for almost 2 years without any side effects

[19930B in reply to OWLS26]

Wow, that’s amazing, you have taken out the fear. Thank you so much.

[thompsonellen2]

Years ago, was on ibrutinib and they changed me to acalabrutinib and I relapsed instantly. Failed out of a 3rd clinical trial and they put my on acalabrutinib as a bridge drug and it didn't do anything. Now on venetoclax and pirtobrutinib for just under 2 weeks and doing great. I am also lumpy and all my lymph nodes were gone by day 8, and they were huge. Good luck on V.

[rex9343]

Hi 19930B,

I was on Acalabrutinib for 2 1/2 years before it stopped working for me about 8 months ago. I was switched to the V + O treatment. So far, that is working well for me. Best wishes to you.

Jay

[19930B in reply to rex9343]

Thank you so much Rex, your words are encouraging. I appreciate you.