What is Myelodysplasia?
Myelodysplasia or Myelodysplastic Syndromes (MDS)
are a group of diseases that originate in an early blood-forming
cell in the marrow. In patients with this disorder, the marrow
produces too few red blood cells, white blood cells and often
platelets. In the myelodysplastic syndromes, the maturing blood
cells often die in the marrow before they reach full maturity and
enter the blood, accounting for the low blood cell concentrations.
There may also be an accumulation of very immature marrow cells,
called leukemic blast cells. It is not cancer, although about 20-30%
of cases may progress to leukemia.
What were Dan's symptoms?
Bone marrow is a spongy tissue found inside bones.
Bone marrow contains blood stem cells (different than the stem cells
that are in the news). Blood stem cells produce the blood for your
body - red cells, white cells and platelets. In my case of the
disease, my bone marrow stem cells are not making enough red blood
cells and white blood cells. Since red blood cells carry oxygen to
all parts of your body, I ran out of energy with just the slightest
bit of exertion. I had to receive frequent red blood cell transfusions in
order to maintain a "normal" life style. My low white blood cell
count was also very low. White blood cells fight off infection, so I
very susceptible to illness and infection. Because of this, I had to
stay away from crowds of people and avoid anyone with any illness or
persons that have been in contact with sick people.
Is there a cure for MDS?
There is only one possible cure, a bone marrow
transplant. Without a bone marrow transplant, survival is relatively
short. My doctors told me that the mean life expectancy for my
type of MDS is about two and half years. The "mean" is the middle
experience. I might have been able to live 10 years or more or may not lived
even a year without my transplant.
What is a bone marrow transplant?
Bone marrow transplant is really a blood stem cell
replacement in the bone marrow. A donor with stem cells compatible
with mine must be found. Then, the donor's stem cells are
"harvested" and placed in my body in a process like a blood
transfusion. With a lot of luck, the new stem cells find a home in
my bone marrow and begin producing good white blood cells, red blood
cells and platelets. But, first, my current stem cells must be destroyed by
chemotherapy. A downside of the chemotherapy is that all fast
growing cells are killed off including my hair (I will lose all my
hair) and the inside lining of my mouth to my stomach. Because the
immune system is destroyed, there are many potential complications
during recovery. Many of the complications can be life threatening.
The mortality rate at six months after stem cell replacement is
about 35%. In other words, only 65 out of 100 transplant patients
are alive after six months. And the harvesting of the stem cells
from the donor is not a cake walk either. The donor must take
conditioning drugs for about five days prior to the harvest which
will increase production of stem cells and "push" the stem cells
into the blood stream. During the harvest, blood is drawn from one
arm into a machine that removes the stem cells. The remaining blood
is then pumped back into the donor in their other arm. The donor
will most likely feel some effects of the harvesting for about 2-3
weeks. These donors are very special people!
What is considered a bone marrow match?
The match has nothing to do with blood type. At least five
different proteins, called Human Leukocyte Antigens (HLA), on the
surface of white blood cells are matched to donors. Each protein is
on a small section of chromosome (the genetic code everyone carries
in the cells of their body) called an allele (pronounced uh-leel).
The locations or loci of the alleles on the chromosome are referred
to as HLA-A, HLA-B, HLA-C, HLA-DR and HLA-DQ. If the patient and
donor have the same two alleles at each location, the donor is
considered a perfect match ("10 out of 10"). Chances that someone other than a
sibling are a perfect match are about 1 in 100,000. In my case, none
of my siblings are a match. Mayo clinic is using the
Be The Match.org to find a donor for me. There are over 5 million
wonderful people that have agreed to be potential donors for people
in need of bone marrow transplants. In fact, Deb and I have three
friends that already signed up to be national donors since learning
of my condition. Each potential donor is tested for about 6 of the
alleles before being added to the donor base. To test for all 10 is
just too expensive. So, when searching for a donor, they will
hopefully find potential donors that match 6 out of 10 and then have
them tested for the remaining 4 attributes, two at a time. Once a
donor has had 8 or 10 attributes typed, the information is added to
the database. Therefore, if very very lucky, they may find a donor
with a perfect 10 match already listed in the database, or maybe 8
out of 10. But in most cases, just 6 out of 10. In all cases of less
than 10 of 10 in the database, further testing must be performed to
see if they are a perfect match. And in all cases, even if a perfect
match is found in the database, the transplant center will insist on
testing the blood again. Since the possibility of anyone of my friends being
a match for me is so slim, my doctors did not recommend any of my
friends be tested to be a personal match. Once a perfect match is
found, the donor must have a complete physical to see if they can
withstand the rigors of the stem cell harvesting. Then a date is set
to begin the conditioning for a harvest and the actual harvest is
performed. Then the stem cells are sent to Mayo for my transplant.
How long is bone marrow transplant recovery?
I was told I would be in the hospital for at least
eight days. But, I ended up in the hospital for about three weeks. Everything after that
is based on personal progress. I was told that after being released
from the hospital, I would need to in our apartment near Mayo
for at least 30 days up to 3 months. During that time, I visited the
hospital once or twice per day until 30 days after transplant.
After that, I was able to return home, but there are many
complications that could land me back in the hospital at any time.
There may be long term chronic problems after the transplant. If
everything goes very well, I may be considered "cured" one year
after the transplant.