Myelodysplastic Syndromes (MDS)

Myelodysplastic syndromes (MDS) are a group of heterogeneous disorders that are characterized by ineffective hematopoiesis in the bone marrow, resulting in cytopenias and dysplasias of major blood cell lines.¹

General Patient Education

Patients with MDS should be educated on general information about the disease, including²: 

• A group of malignancies known as MDS occur when immature blood cells in the bone marrow do not mature or become healthy blood cells.
• The main symptoms of MDS include fatigue and shortness of breath.
• Diagnoses of the various types of MDS are made on the basis of specific changes in the bone marrow and blood cells.
• Supportive care, chemotherapy, drug therapy, and stem cell transplant are the common treatments for MDS.
• The risk of MDS is influenced by age and prior chemotherapy or radiation therapy.
• The chances of recovery and available treatments are influenced by certain factors.

Read more about MDS diagnosis

Diet and Nutrition

Low white blood cell counts in MDS put patients at risk for infections, so they should abide by food safety precautions. Patients with MDS should thoroughly cook all meat, fish, and egg dishes and avoid unpeeled fruits and vegetables, unpasteurized juices, raw foods, and unpasteurized cheese, milk, and other dairy products.³

Read more about MDS diet and nutrition

Exercise 

Exercise is very important for patients with MDS. Exercise not only improves general health and quality of life, but it also strengthens muscles, increases heart and lung function, and lessens stress, anxiety, and depression.⁴

Patients with MDS should spend at least 30 minutes a day being active. Walking briskly for 10 minutes at a time is a simple and effective strategy to keep active. As patients become more fit, they can increase their everyday activities. For example, they can try to engage in moderate exercise for at least 60 minutes or strenuous exercise for 30 minutes each day.⁴

Sedentary behaviors, such as watching television, playing video games, and using the computer, should be reduced when possible.⁴

Read more about MDS therapies

Living With Myelodysplastic Syndromes

Everyone deals with illness and the various emotions they encounter in their own unique way. Talking things through with loved ones, close friends, a doctor, a therapist, or a nurse may prove to be beneficial for patients with MDS.⁵

Regular blood testing and check-ups are required for patients with MDS. Patients should inform their hematologist or the nurse in charge if they have any concerns or notice any new symptoms in between consultations.⁵ 

Read more about MDS testing

Multidisciplinary Efforts

Myelodysplastic syndromes are best managed by an interdisciplinary team of health care specialists, which includes a hematologist, oncologist, internist, infectious disease specialist, and geneticist, due to the disease’s varied presentation and complex management. The severity and type of cytogenetic abnormality will determine the prognosis. Karyotypes with a better prognosis include normal karyotype, deletion 20q, -Y, and deletion 5q. Poor prognosis karyotypes include chromosome 7 abnormalities, and complex cytogenetics.⁶ 

Read more about MDS care team

Resources for Caregivers and Families

The identification of patients’ informational, functional, and emotional needs, as well as how these vary over the course of the disease, are key difficulties in the management of patients with MDS. Patients and carers who find it difficult to get enough information or emotional support from doctors may find a benefit from the guidance and encouragement of other resources, such as foundations, support groups, and internet forums.⁷

Online patient forums may highlight new developments or personal journeys and issues important to patients with MDS. Social media is promoted by the US Food and Drug Administration (FDA) as a technique for understanding patients’ opinions on the impact of disease.⁷

Useful resources include:

• Leukemia & Lymphoma Society: Myelodysplastic Syndromes: This foundation provides current information on aspects of MDS, including diagnosis, treatment methods, and research findings. They also offer many options for community support, such as live chats, support groups, peer-to-peer support, and caregiver support.
• MDS Foundation: This MDS-specific foundation provides a wide range of information on MDS, including guides to understanding MDS, an MDS glossary, FAQs, newsletters, podcasts, and webinars. They also provide links to related organizations, patient message boards, support groups, and forums for both patients and caregivers.
• The Aplastic Anemia and MDS International Foundation (AAMDS): This foundation offers a range of information about MDS, from treatment to research and advice on care management. They have a specialist search tool for patients seeking specific experience with MDS. They also offer a patient toolkit, including patient information and disease management tools, which is downloadable or can be mailed free of charge. And they provide many options for support, such as support groups, networks, and community events.

References

1. What are myelodysplastic syndromes? American Cancer Society. Updated January 22, 2018. Accessed June 12, 2023.
2. Myelodysplastic syndromes treatment (PDQ®)–patient version. National Cancer Institute. Updated March 31, 2023. Accessed June 12, 2023.
3. Eating, diet, & nutrition for aplastic anemia & myelodysplastic syndromes. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Accessed June 12, 2023.
4. Exercise. The Aplastic Anemia and MDS International Foundation. Accessed June 12, 2023.
5. Myelodysplasia (MDS). Macmillan Cancer Support. Accessed June 12, 2023.
6. Dotson JL, Lebowicz Y. Myelodysplastic syndrome. In: StatPearls [Internet]. Treasure Island, FL: StatPearls Publishing; 2023. Updated July 18, 2022. Accessed June 12, 2023.
7. Frank PP, Lu MXE, Sasse EC. Educational and emotional needs of patients with myelodysplastic syndromes: an AI analysis of multi-country social media. Adv Ther. 2023;40(1):159-173. doi:10.1007/s12325-022-02277-0

Reviewed by Debjyoti Talukdar, MD, on 6/21/2023.

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Harshi Dhingra, MD

Harshi Dhingra is a licensed medical doctor with specialization in Pathology. She is currently employed as faculty in a medical school with a tertiary care hospital and research center in India. Dr. Dhingra has over a decade of experience in diagnostic, clinical, research, and teaching work, and has written several publications and citations in indexed peer reviewed journals. She holds medical degrees for MBBS and an MD in Pathology.