Myelodysplastic Syndromes (MDS) are a group of disorders in which the bone marrow does not produce enough healthy blood cells. Most people diagnosed with MDS are over the age of 65, but MDS can also occur in younger patients.

Bone marrow is the spongy tissue inside bones where blood cells are made. Blood cells include white blood cells that fight infection, red blood cells that carry oxygen and platelets that help with blood clotting.

Symptoms

Most early-stage cases of MDS do not cause signs or symptoms. Over time, symptoms may include:

  • Fatigue
  • Shortness of breath
  • Pinpoint-sized red spots just beneath the skin
  • Pallor (paleness) caused by a low red blood cell count (anemia)
  • Frequent infections caused by a low white blood cell count (leukopenia)
  • Unusual bruising or bleeding caused by a low blood platelet count (thrombocytopenia)

Diagnosis

If MDS is suspected, doctors will take a medical history and perform a physical examination. Blood tests will be conducted to determine the levels of red blood cells, white blood cells and platelets and to look for irregularities in their size, shape and appearance.

A bone marrow biopsy is typically performed during the diagnosis process. A small piece of bone, along with the marrow inside the bone, is removed and tested for abnormalities. Additionally, a small amount of liquid bone marrow is withdrawn using a thin needle and then examined.

Genetic testing (also called molecular testing) may also be conducted, examining for chromosome abnormalities and gene mutations occurring in MDS cells.

These tests can help identify the subtype of MDS and the risk of progression, which are factors in determining the best treatment approach.

People with MDS who are not exhibiting symptoms or whose blood counts are not very low often don’t receive treatment. Instead, their condition is monitored by their health care team through blood tests and physical exam, as well as a review of any symptoms that may be related to MDS. This monitoring is often referred to as “active surveillance.”

If treatment is recommended, you and your doctor will discuss the approach that is right for you, based on your individual circumstances. A combination of treatments may be used to bring blood counts back to healthy levels.

Medications

  • Growth-stimulating factors are medications that increase the number of blood cells the body makes. Epoetin alfa (Epogen, Procrit) and darbepoetin alfa (Aranesp) are erythropoiesis-stimulating agents, a type of growth-stimulating factor that reduces the need for blood transfusions by increasing red blood cells. Filgrastim (Neupogen, Zarxio) increases white blood cells in people with certain types of MDS, helping to prevent infections.

  • Immunomodulatory drugs are a type of immunotherapy used to treat certain types of cancer. The immunomodulatory drug lenalidomide (Revlimid) reduces the need for blood transfusions for people with MDS that is associated with the genetic abnormality del(5q).

  • Hypomethylating agents are types of chemotherapy that affect certain genes within cells. Azacitidine (Vidaza) and decitabine (Dacogen) are hypomethylating agents used for the treatment of MDS, most often for people whose MDS has a higher International Prognostic Scoring System (IPSS-R) score. IPSS-R is a tool that assesses the risk of the MDS progressing.

  • Conventional chemotherapy is the use of drugs to destroy cancer cells by stopping the ability of the cells to grow and divide. In July 2020, the U.S. Food and Drug Administration (FDA) approved Inqovi (the combination of decitabine and cedazuridine) for treatment of people with MDS. Other conventional chemotherapy drugs used to treat MDS are cytarabine (Cytosar-U), daunorubicin (Cerubidine) and idarubicin (Idamycin).

  • Erythroid maturation agents work by increasing the number and quality of red blood cells. In April 2020, the FDA approved luspatercept-aamt (Reblozyl) for the treatment of anemia in certain sub-groups of people with low- to intermediate risk MDS.

Blood Transfusions

Blood transfusions may be given to increase the levels of red blood cells or platelets. Transfusions may also be given if medications are being taken that have temporarily reduced the level of red blood cells or platelets.

A transfusion is typically a safe procedure. However, repeated transfusions of red blood cells can cause high iron levels in the body, which can damage the liver, heart or pancreas. Medications called chelating agents (taken in pill form) can help rid the body of excess iron through urine or stool.

All cancer treatments can cause side effects. It is important that you report any side effects you experience to your health care team so they can help you manage them. Report them right away—don’t wait for your next appointment. Doing so will improve your quality of life and allow you to stick with your treatment plan. It’s important to remember that not all people experience all side effects, and people may experience side effects not listed here.

Managing Digestive Tract Symptoms

Nausea and vomiting

  • Avoid food with strong odors, as well as overly sweet, greasy, fried or highly seasoned food.
  • Eat meals cold or at room temperature, which often makes food more easily tolerated.
  • Nibble on dry crackers or toast. These bland foods are easy on the stomach.
  • Have something in your stomach when you take medication to help ease nausea.

Diarrhea

  • Drink plenty of water. Ask your doctor about using drinks such as Gatorade, which provide electrolytes.
  • Over-the-counter medicines such as loperamide (Imodium A-D and others) and prescription drugs are available for diarrhea but should be used only if necessary and after having a discussion with a member of your health care team.
  • Choose fiber-dense foods such as whole grains, fruits and vegetables, all of which help form stools.
  • Avoid food high in refined sugar and those sweetened with sugar alcohols such as sorbitol and mannitol.

Loss of appetite

  • Eating small meals throughout the day is an easy way to take in more protein and calories, which will help maintain your weight. Try to include protein in every meal.
  • To keep from feeling full early, avoid liquids with meals or take only small sips (unless you need liquids to help swallow).
  • Keep high-calorie, high-protein snacks on hand such as hard-boiled eggs, peanut butter, cheese, granola bars, liquid nutritional supplements, nuts and canned tuna.
  • If you are struggling to maintain your appetite, talk to your health care team about whether appetite-building medication could be right for you.

Managing Fatigue

Fatigue (extreme tiredness not helped by sleep) is one of the most common side effects of many cancer treatments. If you are taking a medication, your doctor may lower the dose of the drug, as long as it does not make the treatment less effective.

If you are experiencing fatigue, talk to your doctor about whether taking a smaller dose is right for you.

There are a number of other tips for reducing fatigue:

  • Take several short naps or breaks during the day.
  • Take short walks or do some light exercise, if possible.
  • Try easier or shorter versions of the activities you enjoy.
  • Ask your family or friends to help you with tasks you find difficult or tiring.

Fatigue can be a symptom of other illnesses, such as anemia, diabetes, thyroid problems, heart disease, rheumatoid arthritis and depression. So be sure to ask your doctor if he or she thinks any of these conditions may be contributing to your fatigue.

Managing Flu-Like Symptoms

The fever and aches that may occur with treatment can be managed with a combination of rest and medication. Aetaminophen (such as Tylenol) is often a doctor’s first choice to treat these symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDs) can also help, but should be taken only if recommended by your doctor, as they can cause other side effects. NSAIDs include aspirin, ibuprofen (Motrin and others) and naproxen (Naprelan, Midol, Aleve and others). Report a fever to your doctor immediately, as it could be sign of infection and require emergency treatment.

Q: Is a bone marrow transplant a treatment option for MDS?

A: A bone marrow transplant is a procedure in which diseased bone marrow is replaced with healthy bone marrow. In the procedure, stem cells are harvested (collected) from the patient or from a donor and then stored. The patient is given high doses of chemotherapy to destroy as many unhealthy cells as possible. The stem cells are then “infused” (transplanted) into the body, where they travel to the bones and begin rebuilding bone marrow.

When a person with MDS receives their own stem cells, the procedure is called an “autologous” stem cell transplant. The procedure is known as an “allogeneic” stem cell transplant if the stem cells are from a donor (either a close relative, such as a brother or sister, or a donor from a registry).

While bone marrow transplant may be an option for some people with MDS, it is a complex procedure with significant risks. It is typically only considered as a treatment option for higher risk MDS and for patients in relatively good health.

Immunosuppressive therapy may be used to lower the risk of the bone marrow transplant being rejected by the body. This regimen consists of a combination of anti-thymocyte globulin (ATG) and cyclosporine.

Q: What other health care professionals should I incorporate into my care team?

A: Your medical oncologist is an essential member of your health care team, but there are other health care professionals who can help you manage your diagnosis and treatment:

  • Your primary care physician should be kept updated about your MDS treatment and any test results.

  • Your local pharmacist is a great source of knowledge about the medications you are taking. Have all of your prescriptions filled at the same pharmacy to avoid the possibility of harmful drug interactions.

  • Make sure your oncologist knows of any other medical conditions you have, or any pain you are experiencing, so that they can consult with your primary care physician or your specialist if needed.

  • Ask your oncologist to send a summary of your visits to your primary care physician and all doctors involved in your care.

Remember, there is no such thing as over-communication.

Q: What is a treatment summary and why is important?

A: Keeping your own records up-to-date in the form of a treatment summary can be helpful, as it allows you and your family members to have instant access to the specifics of your MDS diagnosis and treatment. A treatment summary should include:

  • Your name and date of birth
  • Date of diagnosis
  • Prescribed therapy/therapies, including dates started and stopped and dosages when appropriate
  • Dates and types of baseline and post-diagnosis testing and the results of these tests
  • Other medications and supplements you are taking
  • Blood transfusion dates and results
  • Names, affiliations and contact information of all members of your health care team

Ask the members of your health care team what they suggest be included. Take your personal record with you when you visit any doctor, not just your oncologist.

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This booklet is supported Taiho Oncology, Inc.

Last updated March 26, 2021

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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