Kirby Stone's Personal Profile
Diagnosis (January 2004)
In mid-January 2004 the blood test was repeated and it revealed low blood counts: platelets = 86, WBC = 2.2, Hgb = 11.9. I felt fine but my doctor wanted me to see a hematologist/oncologist. On January 27, the hematologist performed a bone marrow biopsy (BMB) in his office during my first visit with him. He indicated he was testing me for leukemia and myelodysplasia. He never indicated how serious a disease myelodysplasia was. My wife and I knew leukemia was serious but had never heard of myelodysplasia. We even asked him to spell it for us before we left his office.
At home we quickly searched the Internet for myelodysplasia and were shocked when we read of the seriousness of MDS. We felt it was the doctor's responsibility to explain how serious this might be. The AA&MDS International Foundation and the MDS Foundation have been very helpful in providing information throughout my whole illness.
My wife Nancy has been a wonderful caregiver throughout my journey with MDS and we are always together for every doctor's visit, bone marrow biopsy, and other treatments. I will use the term "We" throughout this description of "our" fighting this disease since we are always together. I could not survive without her loving assistance.
On February 4, 2004 we returned to the hematologist's office where he reviewed the results of the BMB. He diagnosed my disease as MDS with the blasts at 6-7%. His suggested treatment was to have blood drawn every month to see what the progression was. He said that Thalidomide was the only drug available, but it had serious side effects and its effectiveness would eventually stop. We asked him to fill in the blanks on a form to rate the MDS; I had tri-lineage effects and blasts over 5%, putting me at RAEB-1. The prognosis for life expectancy was not good even at this initial diagnosis.
Our first impressions with the hematologist were not good; he in no way tried to explain the seriousness of the disease and, in our opinion, offered no "reasonable" treatment.
I was a retired research engineer and had also had a BS in Chemistry and an MS in Engineering. I had been involved in research since the early 1960's and was not willing to just sit by and watch the MDS get worse. Our research on the Internet had educated us as to the seriousness of the disease and that clinical trials might be available. Both the AA&MDS International Foundation and the MDS Foundation personnel were very helpful, providing names of doctors and institutions that might offer clinical trials for MDS.
Next: A Possible Trial