What You Need to Know About MDS and Anemia

If you have anemia with MDS, some of the symptoms that you may experience include:

• fatigue
• weakness
• shortness of breath
• dizziness or lightheadedness
• headache
• pale skin
• cold hands and feet
• chest pain
• a heartbeat that’s irregular or too fast (arrhythmia)

In MDS, many of the blood cells made in the bone marrow are irregular (dysplastic). These irregular blood cells don’t function properly and often die much earlier than healthy blood cells.

MDS is also associated with high levels of immature blood cells called blasts. Although a small number of blasts can be found in healthy people, they can make up 5 to 19 percent of cells in the bone marrow of individuals with MDS.

In MDS, irregular and immature cells crowd out healthy blood cells, lowering their numbers. When this impacts RBCs, anemia can result. According to the American Cancer Society, anemia is the most common finding in MDS.

The development of MDS happens due to genetic or chromosomal changes in stem cells that usually go on to become blood cells. These changes can be either inherited or acquired during your lifetime.

The genetic or chromosomal changes in MDS stop the stem cells in the bone marrow from developing as they should. A 2022 study explains how one of the more common gene mutations in MDS can lead to severe forms of anemia.

Many people with MDS will have anemia at the time of diagnosis or develop it at some point.

If you’ve been diagnosed with MDS and begin having symptoms of anemia, contact a doctor to discuss them. The doctor will order blood tests to check your RBC count.

Other things that a doctor may want to test for include levels of:

• hemoglobin, a protein that carries oxygen in your RBCs
• reticulocytes, immature cells that eventually become RBCs
• erythropoietin, a hormone that stimulates RBC production

Depending on your test results, the doctor will recommend treatments to help alleviate anemia symptoms and improve RBC count. They’ll also go over the benefits, drawbacks, and side effects of each and listen to any questions or concerns you may have.

Follow your treatment plan carefully. Many people become resistant to some of the drugs that are prescribed for anemia in MDS.

Let the doctor know if your medications don’t seem to work to manage your symptoms. They can evaluate your condition and recommend alternative treatment options that may be effective.

Anemia due to MDS is treated with supportive care. Supportive care doesn’t treat the cancer directly but helps ease symptoms and improve blood counts.

Some of the possible treatments for MDS and anemia include:

• Erythropoiesis-stimulating agents. Receiving an injection of factors that promote the production of RBCs can help stimulate your bone marrow to make more. Examples include epoetin alpha (Epogen, Procrit) and darbepoetin alfa (Aranesp).
• Blood transfusions. During a blood transfusion, you’ll receive healthy blood from a donor with a matching blood type. However, frequent blood transfusions can cause iron levels to rise, which can impact organ function. Iron chelation therapy may be used in these cases and involves drugs that bind to excess iron and allow your body to properly remove it.
• Lenalidomide (REVLIMID). Lenalidomide is an immunomodulator that helps your body target irregular bone marrow cells and produce healthy ones. Some MDS patients have a deletion in the long arm of chromosome 5, which is associated with acute myeloid leukemia (AML). Lower-risk MDS patients with this deletion have responded well to treatment with lenalidomide.
• Luspatercept (Reblozyl). Luspatercept is an injectable biologic medication approved for use for MDS anemia if the above treatments aren’t effective. This drug works by stimulating RBCs to mature.
• Hypomethylating agents. DNA methylation is when small chemical groups (methyls) attach to a DNA molecule. These groups don’t change the structure of the DNA but instead affect its activity. Hypomethylating agents aim to reprogram or adjust DNA gene expression to stop cancer cell growth and spread.
  • IV decitabine (Dacogen) or azacitidine (Vidaza) are considered lower-intensity chemotherapy drugs and are FDA approved to treat MDS. They are often referred to as DAC and AZA. Through different processes, both can result in the reactivation of tumor-suppressor genes that can help stop cancer cell growth.
  • An oral combination of decitabine and cedazuridine (C-DEC) is also FDA-approved to treat MDS.
  • Azacitidine (Onureg) and venetoclax (Venclexta) were recently granted breakthrough therapy status by the FDA in treating intermediate-to-high-risk MDS. This means the clinical trials are prioritized. Currently, this regimen is not used outside trials.
• Allogeneic stem cell transplantation (allo-SCT). This is the only curative treatment for MDS and is usually only used in younger people with MDS since it has a higher rate of complications. Allo-SCT involves a patient receiving a high dose of chemotherapy and then an infusion of blood-forming stem cells from a donor. A potentially serious complication of this is graft vs. host disease.

For some patients, the use of medications can help them achieve transfusion independence, meaning they no longer have to receive regular blood transfusions.

It’s important to treat anemia in MDS. When left unmanaged, anemia can cause cardiovascular complications, like heart failure. This is because low levels of RBCs mean the heart has to work harder to supply your body with oxygen.

But treating anemia in MDS can be challenging. A 2021 review notes that while many people initially respond to erythropoiesis-stimulating agents, many will become resistant to this treatment and need blood transfusions.

Blood transfusions can help to treat anemia but can also lead to iron buildup in the body. This can necessitate further treatment with iron chelation therapy as well as higher healthcare costs and a lower quality of life.

RBC levels are also one of the factors used to predict the outlook for MDS. The most commonly used prognostic system for MDS is the Revised International Prognostic Scoring System (IPSS-R), which looks at:

• the levels of RBCs, WBCs, and platelets in the blood
• the percentage of blasts in the bone marrow
• whether any chromosome changes are present, and if so, which types

Once all factors are scored, a risk group is assigned. These groups assess the risk of progression to acute myeloid leukemia (AML), as well as overall survival time. Risk groups can help your doctor decide what initial therapy to use.

The table below shows the median survival time for each of the IPSS-R risk groups, according to the American Cancer Society.

It’s important to note that these numbers represent patients diagnosed years ago who often didn’t have access to chemotherapy. Additionally, every individual is different, and disease progression can’t always be easily predicted.

Anemia is a common finding in MDS. It happens when irregular and immature blood cells crowd out healthy RBCs, lowering their numbers. Symptoms of anemia can include fatigue, weakness, and shortness of breath.

Anemia due to MDS is treated with treatments like erythropoiesis-stimulating agents and blood transfusions. These help to ease anemia symptoms and increase levels of healthy RBCs in the body.

Serious complications can happen when anemia isn’t treated. Make an appointment with your doctor if you have MDS and notice anemia symptoms or if your current treatment plan isn’t effectively managing your anemia.