9-month milestone on Ibrutinib

My son is running the Rock ‘n’ Roll San Diego Marathon to raise money for research for the Leukemia & Lymphoma Society on June 2, 2013. This event funds clinical trials for leukemia and lymphoma. Please read his story.

http://pages.teamintraining.org/az/rnr13/rharrisiij

I am personally grateful every day that I have had an opportunity to participate in a clinical trial, and I am grateful every day for the wonderful people who have funded all the clinical trials through their donations.

On another note, I just returned from the National Institutes of Health in Bethesda, Maryland last night about midnight. It was my 9-month milestone on Ibrutinib. I got the best blood work report I have had in a long while. My white blood count has gone down from 53,000 to about 35,000 in the last three months. (approximately 4,000 to 10,000 is normal). I am where I was shortly after I was diagnosed. Nothing would make me happier than to become “normalized.” Dr. Farooqui said for me NOT to expect that I will be within the normal range at my next appointment at the end of June. But as long as I am headed in the right direction, I am okay with that.

I am not anemic. My kidney function, LDH, and other organs appear normal. Hemoglobin and platelets are stable. Absolute lymphocytes are coming down. Nutriphils are normal now (They were not last time). Bone marrow does not show anything suspicious.

I am off Acyclovir, since I have not had infections. Hurrah!

My only issue is on-and-off cramping when I get in an odd position. My thumbs, my middle toes, my ankles, my shoulder blades… Strange places to be cramping. My electrolytes are not low and I am apparently drinking enough water. It happens at the oddest times. It only lasts a short while until I pull my muscle the opposite direction. Other participants have had the same side effect.

NIH doctors are keeping an eye on the unusual trisomy 13 that has cropped up in my genetics, since it has nothing to do with CLL/SLL, and may or may not develop into another blood disorder. It is not related to the trisomy 13 (Patau syndrome) in which some babies are born, involving physical and mental disorders. Trisomy 13 in adults usually doesn’t occur until people are in their 80s or 90s. I have always been told I am an “old soul,” so now I have proof. LOL.

Another strange thing is the presence of the protein CD34 on my baby platelets. Usually those are found on baby white blood cells. Doctors are researching this odd phenomena. There I go again… being an anomaly.

I am happy with the medical report. I am happy with my son and our dear friend Tyler running a marathon. And now I am off selecting the new tile for my house …