Frequently Asked Questions
What is Myelodysplasia?
Myelodysplasia or Myelodysplastic Syndrome (MDS) is a group of disorders where the bone marrow does not work well and the bone marrow cells fail to make enough healthy blood cells. "Myeloid" stands for "blood cells" and dysplastic means "funny looking" or misshapen. About ten to fifteen thousand persons are diagnosed with MDS in the USA every year. MDS is a group of disorders where your bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells.
Your bone marrow is the spongy tissue inside some of your bones, such as your hip and thigh bones. It contains immature cells, called stem cells. The stem cells can develop into the red blood cells that carry oxygen through your body, the white blood cells that fight infections, and the platelets that help with blood clotting. If you have a myelodysplastic syndrome, the stem cells do not mature into healthy blood cells. This leaves less room for healthy cells, which can lead to infection, anemia, or easy bleeding.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 was 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 National Marrow Donor Program (NMDP) 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.