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March 9, 2020: More good news 2 weeks since stopping ibrutinib

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

I stopped taking ibrutinib on February 20, 2020, a few months short of my 8-year anniversary.

As I discussed in my last blog post, this was a difficult decision with conflicting advice.

Would my CLL remain quiescent or would my lymphocyte count shoot up? Would my ITP (immune thrombocytopenic purpura) raise its ugly head to snap at all my platelets and send their numbers crashing? Would my nodes begin to swell as the homing signals back to the nodes were no longer blocked?

Well, the answer to the last question was a no. My daily shower was reassuring that I wasn’t getting lumpy in my neck, armpits or groin. We will see if Dr. Kipps agrees with my self-assessment when I see him next week.

The lab results would have to wait until March 4th when my every 7-week IVIG infusion was scheduled. That was about 2 weeks since stopping, so it would be a fair time frame to catch any troubling signs to emerge.

The news was good. My hemoglobin was stable at 14.9, so no anemia. My neutrophils were a healthy 6.4. My absolute lymphocytes were staying low at 1.0, so no worries about the cancer taking off. And my platelets were actually high at 580,000, maybe due to my splenectomy which is associated and is known to lead to high platelet numbers. That number was particularly reassuring that my immune thrombocytopenic purpura was not reemerging and corrupting my immune system to attack my platelets. In fact, not surprisingly, I have been bruising less off the ibrutinib.

My monocytes were a little high and my red blood cells are a little larger than normal, suggesting some ongoing bone marrow stress, but the CBC (complete blood count) was good.

My blood chemistry was within normal range too with strong kidney and liver function, though my protein level is always low as I still don’t make antibodies (globulins) that make up a significant part of the total protein level.

My flu like illness is better, though I do have a lingering cough and sneezing that is annoying.

I have canceled all my travel for the rest of the month and scheduled a busy month of video calls and conferences.

Overall, this is all excellent news. Next blood draw is March 17, 2020.

Stay strong. We are all in this together.

Brian

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