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Myelodysplastic syndromes are a rare group of disorders in which your body no longer makes enough healthy blood cells. You might sometimes hear it called a “bone marrow failure disorder.”
Most people who get it are 65 or older, but it can happen to younger people, too. It is more common in men. The syndromes are a type of cancer.
Some cases are mild while others are more severe. It varies from person to person, depending on the type you have, among other things. In the early stages of MDS, you may not realize anything is even wrong. Eventually, you may start to feel very tired and short of breath.
Other than stem cell transplants, there is no proven cure for MDS. But there are a number of treatment options to control symptoms, prevent complications, help you to live longer, and improve the quality of your life.
What Does My Bone Marrow Do?
Your bones obviously support and frame your body, but they do more than you might realize. Inside them is a spongy material called bone marrow, which makes different types of blood cells. They are:
- Red blood cells, which carry oxygen in your blood
- White blood cells of different types, which are key elements of your immune system
- Platelets, which help your blood to clot
Your bone marrow should make the right number of these cells. And these cells should have the correct shape and function.
When you have myelodysplastic syndrome, your bone marrow isn’t working the way it should. It makes low numbers of blood cells or defective ones.
Who Is More Likely to Get MDS?
About 12,000 Americans get different types of myelodysplastic syndrome each year. The chances of getting it become higher as you age.
Some other things that raise your chance of getting MDS include:
Cancer therapy: You can get this syndrome 1 to 15 years after receiving certain forms of chemotherapy or radiation. You may hear your doctor or nurse call this “treatment-related MDS.”
You might be more likely to get MDS after treatment for acute lymphocytic leukemia in childhood, Hodgkin’s disease, or non-Hodgkin’s lymphoma.
Cancer drugs linked to MDS include:
- Chlorambucil (Leukeran)
- Doxorubicin (Adriamycin)
- Etoposide (Etopophos)
- Ifosfamide (Ifex)
- Mechlorethamine (Mustargen)
- Melphalan (Alkeran)
- Procarbazine (Matulane)
Tobacco:Smoking also raises your chance of getting MDS.
Benzene: This chemical with a sweet odor is widely used to make plastics, dyes, detergents, and other products. Too much contact with this chemical is linked to MDS.
Inherited conditions: Some conditions passed on from your parents increase your chances of having myelodysplastic syndrome. These include:
- Down syndrome. Also called trisomy 21, children with this are born with an extra chromosome that can hamper mental and physical growth.
- Fanconi anemia. In this condition, the bone marrow fails to make enough of all three types of blood cells.
- Bloom syndrome. People with this condition rarely are taller than 5 feet and easily get a skin rash from sunlight.
- Ataxia telangiectasia. This affects the nervous and immune systems. Children who have it have trouble walking and staying balanced.
- Shwachman-Diamond syndrome. This keeps your body from making enough white blood cells.
Blood diseases: People with various disease of the blood have a greater chance of getting MDS. They include:
- Paroxysmal nocturnal hemoglobinuria: This life-threatening disorder affects your red blood cells (which carry oxygen), white blood cells (which help fight infection), and platelets (which help your blood clot).
- Congenital neutropenia: People with this don’t have enough of a certain kind of white blood cell, so they easily get infections.
Often, myelodysplastic syndromes cause no symptoms early in the disease. But its effect on different types of blood cells can cause warning signs that include:
- Constant tiredness. This is a common symptom of anemia, caused when you don’t have enough red blood cells
- Unusual bleeding
- Bruises and tiny red marks under the skin
- Shortness of breath when you’re exercising or being active
Call your doctor if you have these symptoms and concerns about MDS.
To figure out whether you have one of the myelodysplastic syndromes, your doctor will ask you about your symptoms and history of other health problems. They might also:
- Do a physical exam to check for other possible reasons for your symptoms
- Take a sample of blood to count the different types of cells
- Get a sample of bone marrow for analysis. They or a technician will insert a special needle into your hip bone or breastbone to remove the sample.
- Order a genetic analysis of cells from the bone marrow
What’s My Type of MDS?
Several conditions are considered to be types of myelodysplastic syndrome.
Doctors consider a number of things when figuring out which kind of MDS a person has. These include:
How many types of blood cells are affected. In some types of myelodysplastic syndrome, only 1 kind of blood cell is abnormal or low in number, such as red blood cells. In other kinds of MDS, more than 1 type of blood cell is involved.
The number of “blasts" in the bone marrow and blood. Blasts are blood cells that didn’t mature fully and don’t work properly.
Whether the genetic material in the bone marrow is normal. In one type of MDS, the bone marrow is missing a portion of a chromosome.
Does MDS Get Worse?
The type of myelodysplastic syndrome you or a loved one has will determine the progress of the disease.
With some types, you’re more likely to develop acute myeloid leukemia. Also called AML, it’s when your bone marrow makes too much of a certain type of white blood cell. It can get worse quickly if it’s not treated.
With most types of MDS, the chance of leukemia is much lower.
Your doctor can talk to you about the specific type of myelodysplastic syndrome you have and how it’s likely to affect your health and life.
Other things that affect your case include:
- Whether or not the myelodysplastic syndrome developed after earlier cancer treatment
- How many blasts are found in your bone marrow
Your doctor will decide on a treatment for your myelodysplastic syndrome that depends on the type of MDS you have and how severe it is.
You and your doctor may just take a watchful waiting approach. Your doctor might just want to do regular check-ups if your symptoms are mild and your blood counts are holding up OK.
Other times, you might get what your doctor may call a “low-intensity treatment.” These may include:
- Chemotherapy drugs. These are also used for treating leukemia.
- Immunosuppressive therapy. This treatment tries to stop your immune system from attacking your marrow. That can eventually help you rebuild your blood count.
- Blood transfusions. These are common, safe, and might help some people with low blood counts.
- Iron chelation. You can get too much iron in your blood if you have a lot of transfusions. This therapy can reduce how much of that mineral you have.
- Growth factors. These man-made hormones “encourage” your bone marrow to make more blood cells.
Finally, you might need a “high-intensity treatment.”
- Stem cell transplant. This is the only treatment that can actually cure myelodysplastic syndrome. Your doctor will order a series of chemotherapy or radiation sessions to destroy cells in your bone marrow. You’ll then get stem cells from a donor. Stem cells can come from bone marrow or they can come from blood. These cells then start to make new blood cells in your body.
- Combo chemotherapy. This is when you may get several types of chemotherapy and is considered “high intensity.”