Ibrutinib treatment concerns: At my April 2... - CLL Support

CLL Support

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Ibrutinib treatment concerns


At my April 28 appointment with Dr. John Byrd he expressed a concern that Ibrutinib or Ibru/Imbru in the hands of some treating general oncologists is not well understood and is leading to a need to have patients begin treatment with a specialist who has worked with Kinase inhibitors and has seen the white counts of patients rise without fear that the drug is not working. Initially the rise of white cell counts freaked out the early investigators and patients were stopped from receiving these drugs until it became clear that these drugs work in ways not seen before with other agents. They disengage the cancer cells from their breeding grounds in the lymphnodes and bone marrow where they become drifters of less danger in the blood stream. The activation of what remains of our immune function is then able to kill off the cancer in the blood and the cell counts go down over time.

John is concerned that patients may not be getting the educated care from many oncologists that a consultation with a CLL specialist could provide. If you are in the position of being able to get Ibru/Imbru please ask your Doc enough questions to assess his/her competence to administer and properly monitor your progress. Eventually Oncologists will be savvy and I know my friend and our community advocate Brian Koffman is working on this problem and doing a yeoman's job on our behalf but in the interim, an initial visit to your closest CLL specialist before and in concert with your treating oncologist might be a wise move.

It has taken me much longer than even Dr. Byrd had figured for me to get my white count (ALC) down to numerically normal levels and it still is not perfect. It took 31 months to see normal numbers on the CBC (Complete Blood Count test). I felt almost immediately "released" from the grip and dance of the CLL Bear when first put on Ibrutinib and that at the time my white count was rapidly climbing.

Hope this helps,


5 Replies
CllcanadaTop Poster CURE Hero

I'm seeing a number of patients on Facebook etc. prescribed Imbruvica (ibrutinib) and clearly either they or their doctors are not properly informed...

The ban on grapefruit etc. and the diarrhea side effect seems to be getting through, but not much else from what I can gather...

Patients relying on FB to learn how many pills to take, when to take them, with food, without food, what if I miss a dose... etc etc. isn't good healthcare in my view.

The escalating blood absolute lymphocyte count (ALC) seen after starting the drug and reported in clinical trials, is poorly understood by patients and perhaps practitioners.

Please, pass on this publication if anyone comes across patients confused

about Imbruvica (ibrutinib). It is the FDA drug label.


P.S. Read about a patient today who is on Gazyva and will follow with Imbruvica (ibrutinib) ... gee ... based on what protocol?

Thanks Chris,

Good idea & will do.


Another example of why cll patients need to be seen by specialist especially when treatment is necessary.

P.S. Read about a patient today who is on Gazyva and will follow with Imbruvica (ibrutinib) ... gee ... based on what protocol?

Where is this information? I would love to read about it.



CllcanadaTop Poster CURE Hero

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