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CLL Support Association
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BTK C481S-Mediated Resistance to Ibrutinib in Chronic Lymphocytic Leukemia

It gets kinda technical but this is some great research on ibrutinib resistance by Dr. Woyach.

ascopubs.org/doi/pdf/10.120... will give you access to the whole article

If you want just a very clear and helpful summary, Dr. Wiestner provides it here:


A few highlights:

For treatment naive patients even those with del. 17p, have a very low progression rate of 1.9%

There are blood markers that can predict relapse before it occurs.

Most Richter’s Transformation (RT) occurs early in the first 2 years, while CLL progression is rare in the first year, but increases over time.

Prognosis for RT remains poor, but for CLL progression after ibrutinib it is getting better.

Stay strong.

We are all in this together.




5 Replies

Interested about the aspect regarding the Ibrutinib metabolism as we get older. Good to have something to look forward to that improves with age I guess. Dosage is such a tricky subject.


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Dear Brian,

This is indeed very useful.

Many thanks



I didn't feel very optimistic after reading this, as patients who experienced relapse on Ibrutinib often had rapid progression and poor outcomes. I realise that this was a pre-treated group but progression was as high as 44% after 4 years for those age less than 65 years which is very worrying (but reassuringly low at 1.9% for those age 65+).

If only we could all get access to clinical-grade mutation monitoring and then a therapeutic intervention in the 9 months between mutation identification and clinical relapse. Not even sure who does this type of testing in UK or if it's part of the scientific aspect of the FLAIR study.

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I wrote to you about Ibrutinib not long after you started to gain advice as a treatment naive patient 13 Del. in need of treatment after six years of W & W and now with AIHA, white count over 250 and very low platelets and red blood.

Now in my early seventies, I find the article most hopeful as since starting on Ibrutinib, three and a half years ago, I have had no symptoms, save for the brittle finger nails that now seem to be more or less resolved. I went to hospital today as I now do every two months, always touching wood for good results, and have to report that as per my last three visits all my blood levels were well within the normal ranges. (Hb 159, WBC 8, Lymphocytes 3.8, Neutrophils 3.6 and platelets163.

Feeling twenty years younger I am for ever grateful for your guidance and hope that my results continue to stay good.



I am so happy for you and glad that you shared your good news.


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