Once you start Ibrutinib you can’t stop? - CLL Support

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Once you start Ibrutinib you can’t stop?

krikri1989ho profile image
krikri1989ho

Hi guys! Been following this page for years and have been very helpful! Asking for my husband, can one stop taking ibrutinib after blood cell are normal or one has to take it forever?

Thank you!!😊

13 Replies

Hi currently I believe the thinking is you stay on it until it stops working or side effects are too much. However, that is the big question can we dip in and out. No one has the answer to that yet, In the U.K. we can only get it in trial or if FCR is not suitable. I have been on it 3 years now on the Flair trial. Once the 6 years on trial is up I will go onto the Static trial which is designed to answer these questions. Some participants will come of ibrutinib and some will remain on it and the impact will be studied.

I hope this helps with your question.

Ann

MrsTiffin profile image
MrsTiffin in reply to annmcgowan

Just to clarify, Ibrutinib is now available outside trial conditions in the UK. I started on it at the beginning of this year, although I don’t know for sure if it would have been prescribed if I hadn’t been on FCR some years ago.

annmcgowan profile image
annmcgowan in reply to MrsTiffin

Hi i think you are right I t is a second line treatment not first line yet as far as I know. This is a shame as other countries do have it as first line.Ann

We are all different and it's really a question you should discuss with your doctor. In my case, I've been on Ibrutinib for 3 years in a clinical trial. I've done very well and my numbers are now in the normal range. I'd like to stop the Ibrutinib but my doctor advises against it because he's concerned that the CLL can boomerang back and then be harder to treat. He's even been very cautious about me suspending it a couple times for medical procedures. Because of the side effects I've had (AFib, elevated BP, etc.) he's preparing to switch me over to Acalabrutinib which he thinks should be just as effective without the side effects. I'm interested in seeing what others have to say about this.

17Pisme profile image
17Pisme in reply to TimHB

I believe your Dr is making a great decision for you. Mine did boomerang with a vengeance and thankfully Venetoclax and Retuxin saved me.

lankisterguy profile image
lankisterguyVolunteer

Hi krikri1989ho,-

For most or all drugs we take to reduce our symptoms of CLL, it is customary to kill off as many CLL cells as possible before stopping the drug. If we stop treatment when there are many cells remaining, our CLL will probably come back very quickly.

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The test for measuring very low levels of CLL cells is called MRD (Minimal Residual Disease) and when the results are lower than the test can measure it is called MRD-U (Undetectable or UnMeasurable)

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Treatment with FCR in 6 months will often remove nearly all CLL cells in the blood, to MRD-U for some patients.

Treatment with Venetoclax + Ibrutinib will often remove nearly all CLLs cells in 12 to 18 months- to MRD-U for many patients.

Treatment with Ibrutinib alone may take up to 7 years to reduce the levels to MRD-U

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So if your question "can one stop taking ibrutinib after blood cell are normal or one has to take it forever?" and "normal" means MRD-U, I believe that many CLL Expert doctors would suggest pausing the Ibrutinib to see how long the remission will last.

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Len

Catnap7 profile image
Catnap7 in reply to lankisterguy

So Len... Do you know if people fall out of remission if they are MRD-U I am MRD-U and wonder about it.

Catnap7

lankisterguy profile image
lankisterguyVolunteer in reply to Catnap7

Hi Catnap7

Yes, I did. -

I reached MRD-U and went from 0 up to 100 CLL cells / 100,000 cells in 4 months, so we restarted Venetoclax before the ALC count began rising noticeably. So technically I did not progress, but I probably would have needed to start treatment anyway within one year. -

We are all so different and our CLL behaves differently, that our own experience with CLL and ALC rise is the only indicator that might predict our future rate of rise. (All of my past progressions to treatment have been very short, my first was 18 months and the last was less than 6 months).

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Len

Catnap7 profile image
Catnap7 in reply to lankisterguy

Thanks Len .. I’m just 5 mo out of 2 yr trial with I/V so I’ll keep checking my ALC…still on blood work every

3 months Again thanks !

Catnap7

lankisterguy profile image
lankisterguyVolunteer

Hi krikri1989ho,-

This posting may be useful for you: healthunlocked.com/cllsuppo...

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Len

I took Ibrutinib for 3 years until the side effect of afib took me off the drug. I have not been on any treatment since then - - now 27 months.

I've been on Ibrutinib going on 5 years. There are a few side effects but non I can't live with right now. Elevated blood pressure but controlled. I was scheduled for a trial at Sloan Kettering but after a lot of testing my CLL was still present in my bone marrow. I was not eligible. I see my team every 3 months and will be tested again but with covid and testing negative for antibodies I'll just remain on Ibrutinib and continue to live semi isolated. Happy to have a phone and the internet. Yes, miss the hugs and kisses but maybe I'll get a dog.🥰

lankisterguy profile image
lankisterguyVolunteer

Another link- this time to Patient Power video of Tom Kipps, MD, PhD, Professor of Medicine at UC San Diego, to engage in a deep dive discussion on this topic. They will cover the different MRD tests that are available, when a CLL patient should be tested, and how the results are informing treatment choice.-

patientpower.info/how-mrd-t...

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Len

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