CLL Support Association

iwCLL 2013: Dr. Byrd Discusses If and When to Stop and the Long Term Use of Ibrutinib


In the third part of my interview from Koln Germany, Dr. Byrd discusses stopping therapy and long term therapy with ibrutinib.

There are important implications on how we might end up dosing this and other medications like it. On a lighter note, it seems like brittle finger nails and thinker, darker and wavier hair are possible late side effects. It is all posted on my blog:

Stay strong


2 Replies

Thanks Brian, can't wait for the darker hair :)

Mikey 11qdel Unmutated Resonate2 study


Hi Brian

We exchanged six months ago via email when, after being told that I needed treatment after eight years of watch and wait with no symptoms, I asked your opinion on Ibrutinib. I started in early September on the drug WBC of 250 Hg 7.2 and platelets of 8.1 my WBC initially went up to 450 but soon dropped back and now is 50 with Hg up to 15 and platelets also 15. No side effects at all, spleen normal and no lymph nodes.(Deletion 13q and treatment naive) Brittle nails, yes, thinning hair yes, a blessing as I always had too much and very waivy, now straighter but was and still is dark at 68, the odd grey strand. A recent visit to trials unit tabled new lists of reported side effects but reading through them they could apply without taking the drug as my trial is only for over 65's. It must be confusing for the trial sponsors as we are asked each time, that's once a fortnight, how we are feeling and report anything healthwise, all I can say is that a cold over Christmas cleared up in a week without antibiotics, previously that would have taken a month with antibiotics!! So touch wood, so far, an incredible drug. I am told that we will continue on drug ad infinitum even after a complete remission but shortly new trials of Ibrutinib will test what happens when taken off it.


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