Length of remission after Ibrutinib discontinuation

[MikeOr]

From your experience, how long a CLL remission might last after the treatment with Ibrutinib has been stopped due to side effects ?

[Jm954 Administrator]

That is a million dollar question.

It will depend on the biology of that particular CLL patient's disease, how long they have been on Ibrutinib, depth of response and other factors that we know nothing about at the moment.

Patients who have been on Ibrutinib for a short time and not achieved a good remission yet, perhaps less than a year, can sometimes experience 'flare' when the CLL comes raging back, lymph nodes swell dramatically and they feel unwell.

Stopping Ibrutinib for intolerance due to side effects is a very different situation to stopping Ibrutinib due to resistance and relapsing. Patients who are intolerant can be retreated with Ibrutinib or another, more tolerable, BTKi and will be expected to respond which would not happen if the Ibrutinib is stopped because of relapse.

Jackie

[Panz]

I was on Imbruvica for 6 months, developed two types of pneumonia in both lungs at the same time and was pulled. It has been 2 1/2 years and I am being put on Acalabrutinib shortly. It was a super nice break. They watched me closely and I receive IVIG each month as usual.

All the very best!

Panz 🎄🎄🎄

[Seok]

Hi MikeOr

I switched to acalabrutinib after stopping Ibrutinib for 8 months due to knee pain, high BP and reflux.

Seok

[cll2013]

I had to stop Ibrutinib (due to a major afib event) on March 25, 2019. Other treatment not needed until September 2021. This is just my experience. Certainly the interval months were not without CLL issues, but none that screamed t-r-e-a-t-m-e-n-t time.

[W00dfin]

I developed afib and the Ibrutinib was stopped two years ago. Fortunately all my blood labs had been in normal range except for platelets which soon went normal after stopping Ibrutinib. This status has continued thankfully. A couple of scans have been done and they were negative for any sign of recurrence. My hematologist tells me that it is unusual to stay remission for this long without treatment being needed. Best wishes!

[Dancedunce]

I stopped Ibrutinib after 22 months of Obinutuzumab and Ibrutinib. I had reached uMRD in bone marrow but still had a few small lymph node detected in CT. I had many side effects plus heart arrhythmias so I dropped out of the trial in Janurary. Still in remission as of this Dec, so about 10 months later.

[DaveCll]

Hi MikeAfter 30 months on Ibrutinib I went into remission for three years. Now I am back on it but a very low dose.