CLL Support Association
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Initiation and Discontinuation of Ibrutinib in Chromic Lymphocytic Leukemia (CLL)


I found this discussion from OncLive that I just shared on blog: between Drs. Bryd, Furman and Kipps full of nuggets and controversy.

Not often we get to hear these in such a lively three exchange.

Please let me know what you think.

Stay strong


7 Replies

Thanks for the heads up Brian

Great videos with balanced discussions. Onc Live is a great channel to watch and listen to what the experts are developing, debating and discussing,

Outside of trials Ibrutinib is not able to be accessed by NHS for 17p patients in the UK and there is not a submission in with the regulators yet due to immature data. . Ibrutinib for relapsed refractory CLL was only approved by the English CDF this month it is currently being appraised by NICE for NHS use for this group, . It will be long term patients being treated in trials trials that will provide the data.

What role does Cost play in strategy development?

Your prompt lead me to this video published 8 days ago on Onc Live of a further discussion between the same distinguished panel.:

Selecting First-Line Treatment for Chronic Lymphocytic Leukemia

I have posted this below; a good panel discussion of current treatment approaches and easy to follow A discussion I found reassuring knowing that front line use of novel therapies or novel therapy combos will not come available to treat the fitter younger group outside of trial for quite some time and FCR and BR are the NHS available options for UK patients in this group..

The panel debate the pros and cons of FCR treatment for specific younger fitter populations where remissions are strong after a six month treatment regimen like FCR and a suggestion patients in this group may not wish to remain on a continual daily treatment as is the case with BTK inhibotors ?

(would be interesting to read our community members thoughts on this)

Treatment toxicity and potential complications of FCR and BR are also touched on and that strategies are used to mitigate these.

How all six treatment cycles are not always completed. Bendumustine rituximab with a less toxic more tolerable profile is discussed versus FCR How the German study comparing the two is changing their thoughts on this.


Here's the panel discussion video that Brian posted for us debating the pros and cons of initiating use of novel therapies and when should treatment stop. What is the strategy for now and the the future? Still very early days. There is divided opinion.

Examining Issues Surrounding Initiation and Discontinuation of Ibrutinib

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Thanks of the other video. Good stuff.


I have just watched this video clip for the second time, and found it very helpful. It was good first time round, but was too much info for my little brain to fully take on board. However, for someone looking at first-line treatments (like me), it is VERY relevant. Thanks for posting, Nick and Brian.

But it's also very complicated. No easy answers. Many different things to consider, and even the experts have different opinions... In this video, they don't say much about the very new agents coming on the scene. I guess there's another discussion I'd like to see, because although FCR and BR (and Chlorambucil) are the only definite options for UK folk at the moment, there are a lot of trials with the new agents, that we might get onto.


Both really interesting discussions, thanks for posting. The idea that maybe we might not have to be permanently on the new non chemo drugs has huge implications for the treatment costs. Maybe it might be a case of stop starting when or if the disease returns.


I have been on ibrutinib for almost as long as it has been available; 3-1/2 years now. I am also one of the few people who was treatment naive when I started on it. I am declared CR and my last bone marrow biopsy and aspiration done last September found no CLL cells present but some morphological hints there may be some still around somewhere. I have the contra indication that my immunoglobulins hover borderline low, indicating there may some B-cell suppression going on.

And I have not intention of taking this stuff the rest of my life. Whenever idelasalib and some of the other alternatives are better established and available should I need a Plan B I plan to stop taking it and see what happens.

PS - having personally had it for a front line treatment I feel that is the way it should be used.


Brian & HAIRBEAR, Thanks so much for the posts. Much appreciated. Steve


Having been on ibrutinib for 5 months now my blood results speak for themselves. My WBC before treatment was around 460-480 Hb 90 Platelets 120. They are now WBC 46 Hb 129 Platelets 280. Being11q del and treatment naive I think this is the way to go


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