I stopped taking Ibrutinib in February 2024. After five and a half years the side effects got the better of me. I've been followed up by my haematologist every three months and my bloods have remained good.
They recently tested to see if there was any impact on the "small amount" of TP53 that I have. I had a call from the haematologist yesterday to say that they couldn't find any TP53 at all, although it might still be there and just too small an amount to show up in the tests. (Someone who knows about these things may want to enlighten me about whether I've really understood this and what the implications are).
They're very happy for me to remain treatment free for as long as my blood tests stay as they are and I don't develop symptoms at which point I'll be back on a newer brutinib.
Beattie
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Beattiem-UK
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Great news Beattiem. Did you try a reduced dose of ibrutinib prior to stopping it? I'm now over 6 years on it and also had some difficult side effects when on the full dose but once my bloods got back to normalish levels I reduced the dose first to 280mg and then to 140mg. Reducing to 280mg only made a small improvement to side effects but the move to 140mg led to a dramatic improvement. Also good to hear that TP53 can be reversed with long-term treatment. 👍👍
Beattie I stopped last December after an episode of AFib and have also been on 3, now 4 monthly bloods with no issues 🤞. Was the vanishing TP53 checked with a blood test ? It would be nice if mine vanished as well.
Yes it was. It was a great surprise, to me at least, but the haematologist seemed quite pleased with it too. Though I don't really understand how I could have originally had "a small amount of TP53" - maybe someone else can enlighten me.
Good to hear that you're still doing well since December! Fingers crossed for us both.
Hi Beattie, I stopped ibrutinib in 2018 after two and a half years because of serious gastric side effects. I have been in clinical remission from then and ALC has begun to rise slowly over the last 18 months but still not looking at further treatment. After a short course of medication to sort out the side effects that's been fine as well. Good luck on your treatment free time ahead, God bless, Terry
That's a good long remission terryl! I hope your ALC rise remains slow. I'll be sure to follow your progress and hope not to hear anything at all for a long long time.
Congrats! I discontinued brutinibs 2.5 years ago as well and although trends are towards another treatment sooner than later it was a much appreciated break.
I developed afib and had to stop Ibrutinib almost 5 years ago. My hematologist said I could not ever take Ibrutinib again. Since my labs were good he followed me on no treatment and my labs are still good. I’m still on IVIG every 8 weeks.
If you haven't heard of TP53 you haven't got it, which is a very good thing! I'm sorry that you developed afib but very pleased that you've had good labs on no treatment for 5 years. Long may that continue.
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