Update.

[Jacksc06]

Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that it can be taken in tandem with ibrutinib. Also said that I have heard about ventoclac which she said had been mentioned in their discussions. There will be a meeting tomorrow to discuss my case and the way forward. Very disheartened as I have been feeling quite well after my blood transfusion. Love and strength to all.

[CycleWonder]

Jacksc06 - I’m glad you are feeling better even if your CLL is stubbornly hanging on. Let us know what they medical team is recommending as your next treatment.

[Jacksc06 in reply to CycleWonder]

Thanks, I will continue to update.

[cajunjeff]

Jack, ibrutinib is a first generation btk inhibitor drug. Acalabrutinib is a second generation btk drug. Acalabrutinib is basically a newer version of ibrutinib. It is thought to be just as effective as ibrutinib, with less risk of side effects. I do not believe these drugs would ever be taken in tandem, if you by that you mean taken at the same time. It would more likely be one or the other.

Either of the two would very likely be effective in treating your cll, if you have never had a btk drug before. Good luck to you.

[Jacksc06 in reply to cajunjeff]

Thanks Jeff I have been on ibrutinib since 2019.

[cajunjeff in reply to Jacksc06]

Oh, I see. Jack, if you have stopped responding to ibrutinib, acalabrutinib probably would not work either, at least as I understand things.

Venetoclax would usually be the next up drug for cll. There is a new btk drug called pirtobrutinib, which works differently than covalent binding btk drugs like ibrutinib and acalabrutnib. Pirtobrutinib has shown promise in people who stopped responding to ibrutinib or acalabrutinib.

I dont know if you would have access to pirtobrutinib outside of a clinical trial. Its good to know, though, that if you end up taking venetoclax, you may have pirto in your back pocket if venetoclax ever stops working.

[Jacksc06 in reply to cajunjeff]

Thanks again Jeff

[Sushibruno]

Thinking about you. 🙏🏼

[Jacksc06 in reply to Sushibruno]

Thanks Sushi.

[PaulaS Volunteer]

Sorry to hear this, Jacks. Hang on in there...

Thinking of you,

Paula

[Jacksc06 in reply to PaulaS]

Thank you Paula.

[Keepkicking]

Jack, I did 4 cycles of rituximab in May and my ship didn't start turning until about day 30. I had a breakdown just after my fourth infusion because I was so disheartened (and exhausted.) But about a week later, the results were much different-- just as my hemo had predicted. I'm hopimg your team is just jumping the gun a bit, and your results will show shortly.

[Jacksc06 in reply to Keepkicking]

Thank you. Hoping against hope..

[terryI_uk]

Sorry you're still having a struggle to get things better, let's hope whichever treatment they give you does the trick, God bless, Terry

[Jacksc06 in reply to terryI_uk]

Thanks Terry.

[StBon]

You might ask about zanibrutinib/Brukensa which is newer than the ones you mentioned and I have had great success and very few of the side effects ibrutinib gave me. Best with whatever you and they decide to do.

[Jacksc06 in reply to StBon]

Thank you. I will see what is said regarding venetoclax and/or zanibrutinib when the hospital call. May I enquire how long you have been taking zanibrutinib?.

[StBon]

Almost 2 years. It has been extremely effective and I am now on a reduced dose and holding. The only side effective is serious bruising that is unsightly so bothers others, but otherwise no problem. It is very expensive but my insurance (Medicare Advantage) covers it after the deductible.

[Jacksc06 in reply to StBon]

Thanks. I think it's available on the NHS here in the UK.

[Elizabetha]

Sorry to hear about this Jack. Hopefully you continue to be well supported by your medical team and they will be able to suggest an alternative treatment. Venetoclax is a game changer so that could be a good alternative . Fingers crossed that whatever they and you decide will be effective and with minimal side effects. Good luck!

[Jacksc06 in reply to Elizabetha]

Thank you Elizabetha.

[Walkingtall62]

Jack, thanks so much for updating us. Fingers crossed for your next stage. Take that feeling of feeling so much better after your blood transfusion and hang on to it tightly. There might be a turn around yet. Take care

[Jacksc06 in reply to Walkingtall62]

Thank you. Trying to keep the negativity at bay

[Name-1]

Dear Jack, I am with You.🍀❤️

[Jacksc06 in reply to Name-1]

Thank you Olga.

[CLLCalifornia-USA]

Jack, you’re amazing. Continue to stay strong and positive. I have you in my prayers 🙏Sally

[Jacksc06 in reply to CLLCalifornia-USA]

Thank you Sally.

[G1llHa1n]

Here's to whatever is going to provide you with your next lift onwards and upwards. Keep taking this 'thing' by the scruff of the neck and running it out of town. We will continue to do whatever we can to support you onwards.

[Jacksc06 in reply to G1llHa1n]

Thank you.

[MsChief]

Hi Jackson - Have you ever taken Treanda? I took that (2infusions) prior to one infusion of Rituxan which caused neutropenia and 3 weeks in hospital. MsChief

[Jacksc06 in reply to MsChief]

Hi. No I had very had Bendamustine and Rituximab 6 years ago and the 4 infusions of Rituximab this month.

[Ghounds]

That's disappointing especially as you were feeling better. Fingers crossed that you may be a "late responder" like keepkicking, if not that you can decide on another treatment. Please keep posting if you need support, we care about you and are always here 🤗

[Jacksc06 in reply to Ghounds]

Thanks, appreciated.

[spi3]

My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with treatments of A&O&V. He finished obinutuzumab. SEP 2022: Currently after 11 months February 2023, treatment my hubby's revealed negative MRD. In April he will have a BMB to see if this too is negative!

[Jacksc06 in reply to spi3]

Sounds positive.

[spi3 in reply to Jacksc06]

It is! I call his Acalabrutinib and Venetoclax his Warrior Angels 😇 ❤️ wishing you the best

[Jacksc06 in reply to spi3]

Long may it continue. Best wishes

[Smakwater]

Jack,

It is my understanding that you have only been treated with Retuxan/Retuximab, and more than once. It is common to build up resistance with Retuxan, Bendamustine, and or Obinutuzumab when used as mono therapy. Therefore if you have only received Retuxan, it is quite possible that you could experience success with a BTK drug like Ibrutinib/Acalabrutinib/Zanubrutinib/Pirtobrutinib, or a BCL-2 inhibitor like Venetoclax.

JM

[Jacksc06 in reply to Smakwater]

Thanks. I had 4 cycles of Bendamustine and Rituximab in 2017, and recently had 4 cycles of Rituximab. I have been on Ibrutinib since 2019. So will be discussing with my haematologist what options there are going forward.

[Smakwater in reply to Jacksc06]

Yes, I see now that cajunjeff mentioned the Ibrutinib and the BTK aspect.

Thinking well for you going forward Jack!

[Jacksc06 in reply to Smakwater]

Many thanks.