Jim Mones

First post: Jan 23, 2017 Latest post: May 4, 2017
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.

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.

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

1 = Transformation to leukemia – median 5.5 years

2 = Transformation to leukemia – median 15 months

High 3
= Transformation to leukemia – median 8 months.

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.

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

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. 

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. 

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