CLL Support Association

Ibrutinib Dosing


There has been recent discussion of the proper dosing dosing of ibrutinib in CLL.

I have posted an important discussion of this topic on my blog:

A few key points.

The dose for CLL in almost all cases in 3 of 140 mg caps a day, for MCL it is 4.

With less than that, we may not be saturating the cysteine-481 site and that may encourage resistance. That is why it is usually a bad idea to start at a low dose and titrate up with drugs like ibrutinib.

There is a fuller discussion on my blog with references.

Stay strong


1 Reply

Thanks Brian, for sharing that information on the importance of being prescribed the correct dose of Ibrutinib and how the confusion arose.

I found the BMJ article you referenced from King's College London, regarding "What happens when patients know more than their doctors?" particularly relevant, given CLL, a chronic condition about a third as common as Type 1 diabetes, is also one where patients can do much to improve their quality of life through knowing how to manage their condition.

From the BMJ article:

"Conclusions: Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise."

And the broader findings "suggests a need for serious reflection on existing practices, power hierarchies and training paradigms within healthcare."

I'm sure avid readers of the educational content on CLL forums such as this site, can find themselves in this situation, particularly when they can't get to CLL specialist. So how should we respond when we are given contrary advice by a medical practitioner to that which we've heard is best practice from world CLL experts?



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