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quick question

GettinThruIt profile image
4 Replies

hello everyone

Folks here are so much more knowledgeable than I am that I know if I went to try and find the answer to this question myself it wouldn’t be very satisfying. I’ve been on Imbruvica for 3 years and things are fine. What I’m wondering about is, what are the possibilities of what could occur if I stopped taking it ? I’m not going to, but it’s odd sometimes to feel so normal, but then kind of realize it’s all dependent on that pill. So it makes me wonder and thanks in advance if you can chime in.

Best

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GettinThruIt
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4 Replies
SofiaDeo profile image
SofiaDeo

If you stop taking it, the CLL lymphocytes start growing/multiplying again.

Skyshark profile image
Skyshark

At 6 years some people have stopped taking cBTKi's for a median of 2 years.

cllsociety.org/2023/11/is-i...

Some have stopped earlier than 6 years and had a good remission, others suffer a tumour flare and have to restart taking the cBTKi immediately.

ajmc.com/view/25-of-patient...

If ALC is within normal range, it would be advisable to get a MRD test.

No one knows how well or long a cBTKi works when restarted after a drug holiday. There is evidence that subsequent Venetoclax treatments are not as effective if cBTKi is taken until progression. From this report it would seem prudent to halt cBTKi before becoming refractory.

ash.confex.com/ash/2023/web...

An alterative (in the US) could be the BRAVE trial, this adds Venetoclax for 12 cycles and then if uMRD4 treatment halts. (Two people on HU have tried this (off trial) but were intolerant to Ven.)

medically.gene.com/content/...

(downloads the 2024 ASH poster)

The addition of Venetoclax to Ibrutinib eliminated BTK C481 mutations in 59% of patients on this phase II study. Testing for mutations at every blood test may be needed to catch the mutations early and not waiting for detectable progression.

ash.confex.com/ash/2023/web...

GettinThruIt profile image
GettinThruIt in reply toSkyshark

Thank you - that’s what I was looking for your expertise is appreciated

Phil4-13 profile image
Phil4-13

GettinThrult, it IS all dependent on that pill. These available treatments are blessings. I'm thankful.😊Sandra

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