Living With MDS

 

We met with Dr. Solomon at the Blood and Bone Marrow Transplant Center. After reviewing all of G’s medical records he told us that G’s prognosis is very good. Since G’s IPSS (International Prognosis Scoring System) score is zero, Dr. Solomon estimates that left untreated G’s MDS (myelodysplastic syndrome or bone marrow failure) could progress to AML (acute myelogenous leukemia) in 5-6 years. This is an increase from G’s oncologist’s estimate of 3.5 years.

We discussed a bone marrow transplant and the risks. We learned that on average siblings are a 25% donor match, and children are a 1/2 match. If G’s brother isn’t a match then they would look for a donor match in the national bone marrow donor data base. He told us that as long as G has no chromosomal changes and no blasts there will be no progression to AML. At present G has neither of these.

The physician also explained the reality of the risks involved in a bone marrow transplant. There is a fifteen to twenty percent risk of death in the first year of a transplant from infection or graft vs. host disease (GVDD) where the new bone marrow attacks the host’s organs because it does not recognize the host. A bone marrow recipient must endure long periods of isolation before and after the transplant and remain on immunosuppressant drugs for a period of six months post transplant in an effort to protect the immune system against illness and/or infection.

Dr. Solomon did not recommend a transplant at this time as he feels the risks outweigh the benefits. He said, “I could possibly kill you in a year or you could live six plus years, probably more while being treated with the monthly cycles of Vidaza. You’ll probably die of some other disease before the MDS progresses to AML.”

He also told us that G’s MDS could possibly go into remission. With a recommendation for a bone marrow biopsy every 3-6 months to ensure there are no chromosomal changes or development of blasts and three books about MDS and bone marrow transplants, we were sent on our way with peace of mind that G’s MDS is no emergency.

G has completed his first cycle of Vidaza (chemotherapy). G had to be watched closely, and subsequently we had to report to the oncologist’s office twice a week for blood draws for G’s counts to be monitored. The month of October saw his RBCs (red blood cells) dropping to levels which required two more blood transfusions and several Neupogen injections to increase his WBCs (white blood cells). The last two weeks of October were recovery weeks with G’s counts rising. His hemoglobin rose from a low of 6.8 to 11.1, slowly creeping toward a normal level. 

G has begun his second cycle of chemo. By now we know all the names and personalities of the nurses at the oncologist’s office and the hospital infusion center, all dedicated and caring individuals. We are to expect that G’s counts will dip again from the chemo, but during the recovery weeks his counts should rise to even higher levels than last month. Our greatest hope is that the treatment will bring the MDS into remission.