Ibrutinib timing

[BSMI]

Hi everyone,

I’ve been successfully on Ibrutinib for 5.5 years, but when I saw my haematologist recently she told me that the average effective length of Ibrutinib treatment tends to be around 5 years; but not to worry, as a replacement treatment is available if ever needed.

So my questions are – 1) is the 5 year figure generally correct? 2) what replacement treatment would she likely be referring to?

Thanks.

[AussieNeil Administrator]

Average, or more correctly median time of effectiveness means 50% of patients are still finding ibrutinib an effective treatment. We have early ibrutinib trial participants now moving into their second decade of successful management of their CLL with ibrutinib. Offhand I don't have the stats, which differ for those whose first treatment was with ibrutinib and those who have had previous treatments. Treatment naive have longer control.

What comes next depends on where you live, as that determines what treatments are approved and what trials are available to you. Venetoclax is the usual second line therapy, with venetoclax plus rituximab approved as a fixed term treatment with the aim of achieving uMRD and a long remission.

Neil

[Sushibruno in reply to AussieNeil]

🙂🙃👍

[BSMI in reply to AussieNeil]

Thanks for that Neil. I'm feeling OK re: CLL, although I have other problems as well. And blood tests are good, so hopefully Ibrutinib will keep taking care of me for years yet.And fortunately in Australia Ibrutinib (& I think Venetoclax) costs are covered by the PBS.

Bruce

[W00dfin]

After 4 1/2 years of Ibrutinib I developed afib and had to stop the treatment. Fortunately my labs were all in normal range except for platelets. My hematologist said he would follow me closely on no treatment and monitor for any changes. Platelets came up to normal and everything stayed normal. So if your labs are looking good and lymph nodes are behaving themselves you may want to ask your doctor about your options.

Best wishes!

[BSMI in reply to W00dfin]

Thank you. Best of luck!

[DawnRedwood]

I've heard that too. I've been on Imbruvica for a little over 6 years and every visit I keep wondering if he'll say my blood work is bad and we'll have to change treatment. I wouldn't know what is best for me or work as well with so little side effects as Imbruvica did. Guess I'll wait and see as time passes.

[BSMI in reply to DawnRedwood]

Thank you, that's exactly where I'm up to as well. Just hoping Imbruvica keeps working, but happy to know there are alternatives for us if necessary. Stay well.

[Ibru]

My husband has been on ibrutinib for 8 1/2 years as first and only treatment. Some afib, but managable. Doing great.

[BSMI in reply to Ibru]

Thank you, that's great!

[DawnRedwood in reply to Ibru]

So glad to hear that!!! Maybe I can last a bit longer on Imbruvica! I'm someone who does not like change.

[michaeledward]

I don't know what the average is, I only know that I've been on Ibrutinib since 2014 and it still appears to be effective.

[BSMI in reply to michaeledward]

Wow, that's great! Might be a record. I hope it keeps working for years to come.

[AussieNeil Administrator in reply to BSMI]

It's not a record; there are early ibrutinib trial participants just into their second decade of control with this breakthrough treatment.

Neil

[DawnRedwood in reply to AussieNeil]

WOW!!!! Hadn't heard that, but it's very encouraging.

[Aerobobcat]

Hi BSMI, Just want to say I am now in my 9th year on Ibrutinib and it has worked well for me following on from conventional chemotherapy, FCR and BR. My only problem is erratic blood pressure and am now awaiting a decision regarding changing the treatment.I must admit to the many side affects that I have had suffered, but I do have other medical issues and the clinician’s are still unsure of what is responsible for my ongoing problems. I wish you well.