Some things I've learned since January 15, 2008

August 5, 2008 Some of the things I’ve learned and unlearned since January 15, 2008: (Subtitled: Why I needed a retreat/vacation from myself as well as from further information.) (Alternate subtitle: Crazymaking!) For one hematologist I am one of three patients in his entire career and practice who has presented with the anomalies (especially of the platelets) particular to this progression of diseases. A search of the literature is required because there is no experience of fibrosis of the marrow (which everyone agrees I have) developing into chronic leukemia (which now almost everyone agrees I have). I had a 10%-15% of developing acute leukemia from excessive platelets and fibrosis. I have acute leukemia. I have chronic leukemia. Chronic leukemia develops into acute leukemia. There is only a 3% chance of chronic leukemia developing into acute leukemia. There are yet other diseases of the marrow which may develop if I do not have a bone marrow transplant now. I have lymphoma. At this early juncture the leukemia and lymphoma are “the same thing”. There is no lymphoma anywhere except in my marrow. I have lymphoma cells circulating through my lymph system now. I need transplantation now due to my age (60). Transplant centers routinely transplant people 65-70 with success. The diseases and progresses can be monitored and may not exhibit full blown symptoms for as long as a “few years”. At this time the risk of dying from bone marrow transplant is greater than the risk of dying from advancing diseases. I will do well with a transplant. Bone marrow transplant is my only option. Now. Disagreement: When is the optimum time for a bone marrow transplant? Under what criteria? How bad does “disease progress” have to get? How bad do I have to feel? Do the criteria involve only the objective evidence? I have advancing fibrosis. I have evolving fibrosis. The primary disease that can be treated only by transplant is the fibrosis. It is due to the fibrosis that leukemia/lymphoma cells are appearing and that the white cells are evidencing disease as well as the platelets and the hemoglobin, i.e., the leukemia/lymphoma are functionally symptoms of the primary disease: fibrosis. If I receive a successful bone marrow transplant, it will cure all the diseases of my marrow in one sweep. There are other treatment options to address the leukemia and lymphoma. The one drug which might have helped me with the platelets and fibrosis was developed a few years ago by a physician at Mayo Clinic in Jacksonville. When personally consulted by phone about using that drug to treat my marrow, the physician said that he did not recommend my being treated with this drug, that he did not think it would help me in any way at this time. The fibrosis has scoured my bone marrow. I am a candidate for a donor transplant because the genetic structure of my marrow is diseased. I have no marrow cells of any kind that are consistently capable of producing healthy marrow and healthy blood cells.