Windermere

[Windemere]

I had FCR in 2012 was in remission until 2018. Then started ibrutinib and still on it, how long is it likely to keep me in remission.

[GMa27]

You take it till it stops working. Average time is difficult to say. Everyone is different. Most are on it 5-8 years. Some of the original people from trial are still on it after 11 years. But they didn't have chemo before. I had FCR 5 years ago. Still in remission. I am 13q mutated.

What are ur markers?

😎

[Skyshark]

RESONATE trial of Ibrutinib for 2nd line therapy ended at 6 years. RESONATE-2 for untreated has results up to 8 years.

ncbi.nlm.nih.gov/pmc/articl...

The median progression free survival (PFS) was 44.1 months, you are well ahead of that.

The data collection finished at 6 years with about 30% PFS. That's about where you are now, you are in the PFS cohort, ahead of the curve (or line).

The trend is nearly linear and the intercept at 0% PFS is 8.5 years. Your concern as to how long you can continue is probably well founded. I hope you are in a "long tail" where some seem to carry on indefinitely but as the trial has ended there's no way to know.

Genetic markers, no TP53 mutation or 17p deletion, tend to indicate better PFS.

Most people that have AEs have them early on, there is little reason to expect that you will have to stop taking it after this length of time.

If it stops working and CLL progresses then VenR or maybe reversible non-covalent Pirtobrutinib if approved in your location, is your next therapy. VenO is in trials or may be approved in your location for 2nd/3rd line, if comes to it you could join this trial (I like VenO). As new drugs become available the treatment arms grow longer. The RESONATE report says that people taking Venetoclax after Ibrutinib do well.

[Nickos66]

Greetings fellow Lake Districter! I’ve just had a meeting with my Consultant about a road map for the next 5-10 years if my Ibrutinib starts failing and Ventoclax is the next step! I’ve also been put on the database at Newcastle for future CAR-T treatment should it be required.

[Windemere in reply to Nickos66]

Thankyou for your reply How long have you been on ibrutinib now.

[Nickos66 in reply to Windemere]

About 4 years into it now,started on full dosage and gradually dropped down to minimum dosage after some bad side effects,the minimum dosage has my bloods in normal parameters for last 3 years.

[LynnB1947]

In 2014, my doctor at MDA suggested rituxan & revlimid for 1st line, non-chemo, treatment. After 3 months, I was switched to a brand new FDA approved drug - ibrutinib. It did work very well, & I took it for 9 years. My new doctor at UTSW-Dallas agreed with me that I need a drug holiday, and I've been off of ibrutinib for 4 months & my doctor says I'm in clinical remission, & he thinks I may go 3 years before I need to resume treatment with one of the newer BTK inhibitors or other treatment. My diagnosis is SLL, unmutated, 11q & 13 q.

Wishing you the best ...

Lynn