Myelodysplastic Syndromes

The following is collated information on myelodysplastic syndromes (MDS), one of the 15 health conditions covered by the VA for Camp Lejeune victims.  The information comes from various resources including the MDS Foundation, Cancer.gov, the Mayo Clinic, and etc.

What is MDS?

Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is often referred to as a “bone marrow failure disorder”. MDS is primarily a disease of the elderly (most patients are older than age 65), but MDS can affect younger patients as well.

Low blood cell counts, referred to as cytopenias, are a hallmark feature of MDS and are responsible for some of the symptoms that MDS patients experience — infection, anemia, spontaneous bleeding, or easy bruising. Anemia (low red blood cell counts), neutropenia (low white blood cell counts), and thrombocytopenia (low platelet counts) are the major types of blood cell cytopenias.

Failure of the bone marrow to produce mature healthy cells is a gradual process, and therefore MDS is not necessarily a terminal disease. Some patients do succumb to the direct effects of the disease: reduced blood cell and/or reduced platelet counts may be accompanied by the loss of the body’s ability to fight infections and control bleeding. In addition, for roughly 30% of the patients diagnosed with MDS, this type of bone marrow failure syndrome will progress to acute myeloid leukemia (AML).

Long term exposure to certain environmental or industrial chemicals, such as benzene, can also trigger MDS. While benzene use is now highly regulated, it is not clear which other chemicals may predispose individuals to MDS, although certain occupations have been labeled “at risk” for the development of MDS or AML (e.g., painters, coal miners, embalmers). There are no known food or agricultural products that cause MDS. While alcohol consumed on a daily basis may lower red blood cell and platelet counts, alcohol does not cause MDS.

Types (from Cancer.gov)

  • Refractory anemia: There are too few red blood cells in the blood and the patient has anemia. The number of white blood cells and platelets is normal.
  • Refractory anemia with ring sideroblasts: There are too few red blood cells in the blood and the patient has anemia. The red blood cells have too much iron inside the cell. The number of white blood cells and platelets is normal.
  • Refractory anemia with excess blasts: There are too few red blood cells in the blood and the patient has anemia. Five percent to 19% of the cells in the bone marrow are blasts. There also may be changes to the white blood cells and platelets. Refractory anemia with excess blasts may progress to acute myeloid leukemia (AML). See the PDQ Adult Acute Myeloid Leukemia Treatment summary for more information.
  • Refractory cytopenia with multilineage dysplasia: There are too few of at least two types of blood cells (red blood cells, platelets, or white blood cells). Less than 5% of the cells in the bone marrow are blasts and less than 1% of the cells in the blood are blasts. If red blood cells are affected, they may have extra iron. Refractory cytopenia may progress to acute myeloid leukemia (AML).
  • Refractory cytopenia with unilineage dysplasia: There are too few of one type of blood cell (red blood cells, platelets, or white blood cells). There are changes in 10% or more of two other types of blood cells. Less than 5% of the cells in the bone marrow are blasts and less than 1% of the cells in the blood are blasts.
  • Unclassifiable myelodysplastic syndrome: The numbers of blasts in the bone marrow and blood are normal, and the disease is not one of the other myelodysplastic syndromes.
  • Myelodysplastic syndrome associated with an isolated del(5q) chromosome abnormality: There are too few red blood cells in the blood and the patient has anemia. Less than 5% of the cells in the bone marrow and blood are blasts. There is a specific change in the chromosome.
  • Chronic myelomonocytic leukemia (CMML): See the PDQ summary on Myelodysplastic/ Myeloproliferative Neoplasms Treatment for more information.

Symptoms

  • Fatigue
  • Shortness of breath
  • Unusual paleness (pallor) due to anemia
  • Easy or unusual bruising or bleeding
  • Pinpoint-sized red spots just beneath your skin caused by bleeding (petechiae)
  • Frequent infections

Testing

  • Blood tests. Your doctor may recommend blood tests to count the number of blood cells in a sample of your blood (complete blood count) and examine your blood for unusual changes in the size, shape and appearance of various blood cells (peripheral blood smear).
  • Removing bone marrow for testing. During a bone marrow biopsy and aspiration, a doctor or nurse uses a thin needle to withdraw (aspirate) a small amount of liquid bone marrow, usually from a spot on the back of your hipbone. Then a small piece of bone and the enclosed marrow also is removed (biopsy). The samples are examined in a laboratory to look for abnormalities.

Treatment Options

  1. Blood transfusions – Blood transfusions can be used to replace red blood cells, white blood cells or platelets in people with myelodysplastic syndromes.
  2. Medications – Medications used to increase the number of healthy blood cells your body produces include:
    1. Medications that increase the number of blood cells your body makes.
    2. Medications that stimulate blood cells to mature, rather than remain immature.
    3. Medications that suppress your immune system.
    4. Medication for people with a certain genetic abnormality.
  3. Bone marrow stem cell transplant – During a bone marrow stem cell transplant, your defective blood cells are damaged using chemotherapy drugs. Then the abnormal bone marrow stem cells are replaced with healthy, donated cells (allogeneic transplant).

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2 thoughts on “Myelodysplastic Syndromes

  • July 25, 2015 at 8:54 pm
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    I developed ITP 10 years after being at LeJunne, could it be connected to my time there? How do I prove it? Thanks

    Reply
    • July 27, 2015 at 11:11 am
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      Hi John,
      I will ask the researchers at ATSDR if this is something that is showing up as well in the data from illnesses regarding Lejeune and get a more definitive answer to you soon. That said, I would not hesitate to go ahead and put in a claim just in case. According to the law and the VA: “If you were on active duty and served at Camp Lejeune for 30 days or more between August 1, 1953 and December 31, 1987; OR you were the spouse or dependent of the Veteran during that same period; AND you lived (or were in utero) on Camp Lejeune for 30 days or more between August 1, 1953 and December 31, 1987; THEN you may meet the criteria for VA’s Camp Lejeune Family Member Program.” What you’ll want to do is get on the updates list for USMC too at https://clnr.hqi.usmc.mil/clwater/ . Then you’ll want to go here to file a claim: https://www.clfamilymembers.fsc.va.gov/ . They will have the forms you need to apply. You’ll need to prove that you spent time on Lejeune for the required amount, and you’ll have to share your medical history, diagnosis, doctor’s remarks and basically show likelihood of connection. As I mentioned to another person who asked something similar recently, the VA is currently denying 95% of claims. They are using “subject matter experts” that are finding ways to deny rather than approve. That said, we’re working on clarifying their process and getting some transparency on it. Don’t let that stop you though. Go ahead and put in and see what they say and then go from there. I hope that helps – GS

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