In early 2016 I was referred to a hematologist as my white blood count and platelet counts were low. They had been running low for over a year but not critical. As a precaution, my Rheumatologist thought I should see a hematologist.
The hematologist ordered a bone marrow biopsy and originally when I met with her for the results she said I had Refractory Cytopenia with Multilineage Dysplasia (RCMD). This is a condition where 2 types of blood cells are low along with molecular abnormalities and the amount of immature cells in the bone marrow. My risk level was Low with only 1% per year transition to leukemia. She would monitor my blood 3 times per year as a precaution. The cause of RCMD is unknown and usually diagnosed in men over the age of 60. Symptoms of RCMD are bruising, bleeding and fatigue. The only symptom I was experiencing was fatigue. She said there is a cure for RCMD and would refer my case to OHSU for consideration.
OHSU contacted me about 3 weeks later to arrange a consultation. On September 28th I met with a doctor at OHSU and was advised additional information from my bone marrow biopsy had come in and my condition was of greater concern and rather than RCMD I was diagnosed with Myelodysplasia Syndrome (MDS) a marrow failure syndrome and consistent with RCMD where 2 cell lines are affected. According to the International Pragmatic Scoring System (IPPS) used to determine MDS risk, I was a level 2. According to the scoring system, out of 100 people tested, the median risk levels break down to this:
Low 0 = Transformation to leukemia – median 8 years
Intermediate 1 = Transformation to leukemia – median 5.5 years
Intermediate 2 = Transformation to leukemia – median 15 months
High 3 = Transformation to leukemia – median 8 months.
These are median numbers so it could be sooner or longer than the time listed before transforming to leukemia. With no treatment I asked what my prognosis would be. Based on the median numbers I would transform to leukemia in 14-15 months. Once leukemia developed life expectancy would be weeks. This is if I did nothing.
The doctor recommended 2 actions - an Allogeneic Stem Cell Transplant and intervention treatment. A donor match would be needed for transplant and while searching for a donor, intervention treatment should be started and continued until a donor match was found. Intervention treatment would slow or stop MDS progression and is not a cure. Treatment would continue until a donor was found. With my nationality mix the doctor said a donor may be difficult to find. Multiple blood samples were taken for type testing and the donor search began.
I was referred back to my hematologist for the intervention treatment and began treatment at the end of October. Treatment is chemotherapy infusions every day for 1 week then a 3 week break. This 4 week treatment regime would continue until a donor match was found.
In December I was contacted by OHSU to advise a they had a donor and scheduled an appointment to review the donor and transplant timing. On December 28th I was advised they actually had 4 donors and out of the 4, 1 was an exact match! Out of 14 HLA’s we matched 12 of 12. The donor’s blood type is O positive, a universal blood type so with HLA’s 13 and 14 universal we matched 14 of 14 HLA’s! To find a match in such a short period of time and match 14 of 14 HLA’s was an answer to many prayers and something that only God could do.
3 rounds of treatment were completed with no side effects, another prayer answered! Pre-transplant tests and examinations are scheduled and when completed and all is cleared I will begin the transplant process. A central line will be inserted to make it easier to get medications into my bloodstream and to withdraw blood for tests. The central line will also be used for the conditioning chemotherapy regime. The conditioning chemotherapy eliminates residual disease, and makes space for the new marrow from the donor. After the conditioning chemotherapy that will take 4-6 days, I will receive the new cells from the donor. This day is called “Day Zero”. Once the cells have been infused we will wait for the new cells to grow, which takes around 14 days. I will be hospitalized approximately 4 weeks.
When I am discharged from OHSU I will need 24/7 caregiver assistance. I will return to OHSU for follow-up out-patient treatment and care multiple times per week. The first 90 days are critical as my new immune system continues to build. My blood type will change from B positive to the blood type of my donor, O positive, which is the same blood type of my father.