Well, friends, after a long phone conversation with Dr. Mascaranhas and further review of my bloodwork going back to October of 2012, he is quite certain that I have CMML (Chronic MyeloMonocytic Leukemia) rather than Primary Myelofibrosis. So what, you ask? That would explain why the medications I was taking weren’t thoroughly helpful. A lot of the symptoms and components of this disease are similar to PMF with the only curative option being a stem cell transplant.
However, there is an FDA approved medication (Decitabine) that has been effective in putting the disease into remission in many CMML patients. The downside is that it doesn’t cure anything and probably has to be taken monthly for as long as I live (5 days in a row every month at an “infusion clinic.”) The doctor said that, over time, it does take its toll on the body and so although he has patients who have been on it for a decade, many don’t make it half that long. He would recommend that I take steps toward the stem cell (bone marrow) transplant. He believes that I am in the higher percentile of good candidates for success –if I can find a younger male donor who matches 10 for 10 on my tissue type.
While we pray for divine healing I will be seeing my local doctor next Tuesday to explore beginning the decitabine to see how my body responds. I’m pretty sure the same office has an infusion center so I won’t have to go elsewhere for it.
I’m anxious to find out what my cell counts are as my energy level has waned and I can feel turmoil in the abdomen that reminds me of the season last summer before I got on medication. My appetite is good and I’m sleeping okay just tire easily.
On another subject, I am in (hopefully) the final stages of production –working with a publisher/editor/layout specialist- of REFLECTIONS (devotional book of hymns and commentaries from Jeremiah’s writings.} It will be a hardback book and we’ll be able to make it available online as well as offer bulk discounts for churches or individuals that want 15 or more. I’m hopeful that they’ll be “in print” within a few weeks.
Thanks for casting all these cares with me before the Lord who cares so much for us! (1 Peter 5)