In July 2014 I was diagnosed with a disease identified as Myelodysplasic Syndrome (MDS), sometimes referred to as pre-leukemia. Essentially, it is a condition that occurs in the bone marrow, that adversely affects the production of healthy blood cells. The original concern for me was low platelets. Otherwise, I felt healthy and energetic. Following numerous tests, including a bone marrow biopsy, MDS was diagnosed. However, at that time, doctors felt my condition was LOW RISK, and merely recommended that I have periodic blood tests (CBC's).
Blood levels remained amazingly stable until December 2016, at which time, there was found to be a precipitous decrease in Platelets which necessitated more testing and a second bone marrow biopsy. Unfortunately, the results of those tests revealed that my condition had advanced to HIGH RISK. Significantly, I was told that applying an international scoring system that I had a median life expectancy of 1.2-2.0 years (WOW... pretty sobering). There were only three treatment paths to choose from: (1) Do nothing, and gradually descend in poor health to ultimate death; (2). Chemo, but the only two chemo drugs approved for treatment of this disease DO NOT provide CURE, but with good response, can improve health for a period of time and extend life expectancy for months; (3) Stem Cell Transplant (SCT), usually in conjunction with chemo, is the ONLY KNOWN CURE for this disease. However, SCT also comes with a substantial risk of death. Approximately 20% of SCT recipients die during hospitalization or shortly thereafter; and an addition 30% die within 5 years of the SCT. The usual culprit causing early death post transplant is Graft Versus Host Disease (GVHD), which is the immune system of the donor attacking the organs of the recipient.
Not surprisingly, I chose to pursue the SCT option, and potential cure. But I learned that several hurdles must be cleared before doctors would find that I was a suitable SCT candidate. Those hurdles included: general health of recipient (which in my case is excellent); age of the recipient (doctors said my health status she was much younger than my chronological age); and locating a so-called PERFECT MATCH DONOR.
Chemo was also recommended as part of my treatment plan. Starting in March, I completed 4 cycles of chemo (Vidaza), which consisted of 3 injections per day for 7 days, followed by 21 days off... then repeat. Following a couple of uncomfortable months of Chemo, my blood levels have responded quite favorably. So much so, that I have returned to the gym on a regular basis (over the last month) and have played several rounds of golf... my strength and energy has returned.
I originally consulted with doctors at Moffitt Cancer Center in Tampa. The facility and doctors were wonderful, but after learning of logistical requirements of SCT, I changed my facility to Emory University Hospital - Winship Cancer Institute, in Atlanta, to be closer to my daughter Andrea who lives nearby. Fortunately, we have found a suitable and agreeable donor, so we are aiming at hospitalization at Emory for SCT on July 21, 2017. On July 6th & 7th I will be doing vital organ testing to ensure that I am healthy enough for the SCT procedure.
The required logistics for SCT are rigorous.... including at least 30 days of hospitalization (higher intensity chemotherapy, followed by the actual SCT, follwed by isolation protocols); then after discharge from hospital, I must remain in near proximity of the SCT facility for at least an additional 60 days with 24/7 care and monitoring.
I, or my daughter, Andrea will provide periodic updates on this site of my medical status and prognosis.
Thoughts and prayers are appreciated.
Any mailings can be sent to: JD Ledbetter c/o Andrea Ledbetter, 37 Standish Ave NW, Atlanta GA 30309.