ASCO 2014: Dr. Byrd: Ibrutinib in the Real World of CLL (chronic Lymphocytic Leukemia)

In this short second half of my interview from the final minutes of ASCO 2014, Dr. Byrd, my clinical trial doctor at OSU, discusses some of the potential  pitfalls in receiving ibrutinib outside of a trial from a provider who perhaps has little or no experience with the drug.
That is one of the reasons I push so hard that we patients be well informed and engaged so we can be be sure we are getting the best possible care.
It is also a push to strongly consider a second opinion, especially when we are considering therapy  with a doctor where the bulk of the practice and research is devoted to the care of CLL patients.
Ibrutinib and some similar other targeted oral medications (kinase inhibitors) are quite safe and easy to use, but do have some unusual characteristic effects.  For example it is common to experience a rapid climb in the lymphocyte count at the start of therapy. You and your doctor need to appreciate that it is not dangerous or a sign of progression or even really an adverse event. It is just a redistribution of the lymphocytes from the nodes to the blood whether there are more vulnerable and more likely to die.
Again, please pardon the pops and hisses in my part of the audio during the interview.
I have several great videos on tap from Greece (ESH International Conference on New Concepts in B Cell Malignancies: From molecular pathogenesis to personalized treatment) but they are embargoed until after ASH.
And of course, I will be attending ASH 2014 next week with my one man video production team to bring the latest news, commentaries, and explanations.
I go as as doctor, a patient, a reporter and I hope as your advocate. It can get pretty crazy: a scheduling nightmare and long demanding days.
On a personal note, my labs remain stable even though I have been off cyclosporin for my auto-immune platelet issues (ITP) for almost two months. The one fly in the ointment is that my white count and absolute neutrophils are a bit high. That usually means an infections, but I feel well. Could be just stress and lack of sleep. It's happened before and returned to normal, never leaving a clues as to why it bumped it. With CLL, I have learned to accept that things just happen and I may never know why.
Here is Dr. Byrd.

Happy Thanksgiving.If you want a personal response, or just want to stay in touch, please email me at bkoffmanMD@gmail.com. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together.