What is myelodysplastic syndrome (MDS)?
MDS is a group of diseases that affect the blood and bone marrow. Bone marrow is the soft, spongy tissue inside bones. In MDS, the blood-forming cells (stem cells) in the marrow slow down, or even stop, making the 3 types of blood cells:
- Red blood cells – Carry oxygen throughout the body
- White blood cells – Help fight infections
- Platelets – Help the blood clot and stop bleeding
Most people with MDS will have anemia (low number of red blood cells) and may need blood transfusions. Some people also have low numbers of white blood cells and platelets.
There are many different types of MDS. Doctors look at cells in the blood and bone marrow to find out what type of MDS someone has. Some are mild and easily treated. Others are severe and life-threatening. Even mild MDS can become severe over time. Sometimes MDS can develop into a fast-growing, severe blood cancer called acute myeloid leukemia (AML).
How does blood or marrow transplant (BMT) work for MDS?
BMT, also known as a bone marrow transplant or blood stem cell transplant, can treat patients who have MDS, including older patients. It replaces the unhealthy blood-forming cells (stem cells) with healthy ones. For some people, transplant can cure MDS. For others, it may delay relapse (the MDS coming back).
Allogeneic transplant is the most common type of transplant for MDS. This uses healthy blood-forming cells donated by someone else to replace the unhealthy ones. These healthy cells can come from a family member, unrelated donor or umbilical cord blood. First, you get chemotherapy (chemo), with or without radiation, to kill the unhealthy cells. Then, the healthy, donated cells are given to you through an intravenous (IV) catheter. The new cells travel to the inside of your bones and begin to make healthy blood cells.
The entire process, from the start of chemo or radiation, until hospital discharge, can last weeks to months. This is followed by many months of recovery near the transplant center and at home. The transplant team will closely watch you to prevent and treat any side effects or complications.
When should I see a transplant doctor?
You should see a transplant doctor early after diagnosis of MDS if:
- The MDS has a high risk of coming back (relapse)
- The MDS was caused by another treatment, such as chemo for another cancer
- You have very low numbers of blood cells despite treatment
- You need frequent blood transfusions
Your first appointment with a transplant doctor
At your first appointment, the transplant doctor will:
- Review your medical history
- Talk with you about your treatment options
- Discuss the risks and benefits of transplant
- Recommend the best time for you to get a transplant and prepare for treatment
- Start a donor search even if you don’t need a transplant right away. This can help you get a transplant faster if it’s needed later
Learn about your risk for relapse
Doctors do cytogenetic and molecular testing to see how likely it is that the MDS will come back (relapse). This means they look at the chromosomes and genes in the leukemia cells. Chromosomes and genes carry instructions that tell your body how to make everything it needs to work properly. Certain changes in the MDS chromosomes and genes predict a lower risk of relapse. Others predict a higher risk. To do this testing, doctors study your blood and your bone marrow.
Ask your doctor for a copy of your test results and to explain what they mean. If your disease has a high risk of relapse and you’re healthy enough for transplant, it’s important to see a transplant doctor right away.
Questions to ask your doctor
Ask questions so you understand your treatment options and can make decisions that are best for you. Questions you may want to ask your doctor include:
- What are my chances of a cure or long-term remission if I get a transplant? If I don’t get a transplant?
- Does the type of MDS I have make a difference on how well transplant might work for me?
- Does my current health or age affect how well transplant might work for me?
- What do my cytogenetic and molecular markers mean for my treatment?
- What are the possible side effects of transplant? How can they be reduced?
- How might my quality of life change over time, with or without transplant?
Most recent medical review completed March 2017.