{"_101pages":[{"data":{"bannerImageTitle":"What is Myelodysplastic Syndrome (MDS)?","bannerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2F101%20What%20is..._132bdc0b-1fa3-4134-a4c3-bf2d20dc3a45.jpg?alt=media","createdAt":{"_type":"Date","value":"Fri Sep 01 2023 15:49:43 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},"disease101":true,"htmlContent":"

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, but can affect younger patients as well.

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In MDS, the blood stem cells (immature cells) do not become healthy red blood cells, white blood cells, or platelets. These immature blood cells, called blasts, do not work the way they should and either die in the bone marrow or soon after they go into the blood. This leaves less room for healthy white blood cells, red blood cells, and platelets to develop in the bone marrow. When there are fewer healthy blood cells, infection, anemia, or easy bleeding may occur.

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What are the U.S. Statistics for MDS?

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Between 12,000 - 20,000 people are diagnosed with MDS in the U.S. every year with around 87,000 new cases worldwide. It is estimated that between 60,000 - 170,000 people are currently living with MDS in the United States. About 30% of all MDS patients progress into Acute Myeloid Leukemia (AML).

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For patients with Low Risk MDS (LR-MDS) who do not receive a bone marrow transplant, average survival is 6 years. Patients with High-Risk MDS (HR-MDS) have an average survival of around five months.

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Helpful MDS Glossary

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\n\t\t\t Term \n\t\t\t	\n\t\t\t Definition \n\t\t\t
\n\t\t\t Stem Cells \n\t\t\t	Cells in the bone marrow with the ability to transform into blood cells that enter the bloodstream once they've matured
\n\t\t\t Cytopenias \n\t\t\t	\n\t\t\t Low blood cell counts \n\t\t\t
\n\t\t\t Anemia \n\t\t\t	\n\t\t\t Low RED blood cell count \n\t\t\t
\n\t\t\t Neutropenia \n\t\t\t	\n\t\t\t Low WHITE blood cell count \n\t\t\t
\n\t\t\t Thrombocytopenia \n\t\t\t	\n\t\t\t Low PLATELET count \n\t\t\t
\n\t\t\t AML \n\t\t\t	\n\t\t\t Acute Myeloid Leukemia \n\t\t\t

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What are MDS Symptoms?

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Symptoms of MDS are related to low blood counts. Low counts of different blood cell types can result in different symptoms like tiredness, low energy, frequent infections, bruising, bleeding, etc.

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Why Do People Get Myelodysplastic Syndrome?

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The exact cause of myelodysplastic syndromes isn't known. Most people with MDS have no identifiable, specific cause for their disease (idiopathic). However, certain factors can increase the risk of developing the disease.

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What Are the Risk Factors for Developing MDS?

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Inherited Genetic Mutations: Some people may be more likely to develop MDS based on genes they inherit from one or both parents. Having a history of certain blood disorders, including aplastic anemia, or certain genetic syndromes, such as Down syndrome.
Cancer Treatment: Long-term use of radiation or chemotherapy drugs increases risk of MDS. This is diagnosed as Secondary MDS if triggered by cancer treatment.
Age: While anyone can develop MDS, 75% of patients diagnosed with MDS are over the age of 60, although it can affect young adults and children.
Gender: MDS is more common in men than women, although we aren’t sure why yet.
Lifestyle: Smoking is a linked risk factor, as well as exposure to heavy metals, such as lead or mercury.

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What are the Types of Myelodysplastic Syndromes?

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There are several types of myelodysplastic syndromes. The types are based on how the cells in the bone marrow look under a microscope. They include:

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Refractory cytopenia with unilineage dysplasia (RCUD): This type affects only one type of blood cell — red cells, white cells or platelets.
Refractory anemia with ring sideroblasts (RARS): This type involves low red blood cell counts, with or without low white blood cell or platelet counts.
Refractory cytopenia with multilineage dysplasia (RCMD): This type affects two or three types of blood cells — red cells, white cells and/or platelets.
Refractory anemia with excess blasts (RAEB): In this type, the bone marrow has too many immature white blood cells (blasts).
Myelodysplastic syndrome, unclassifiable (MDS-U): This type is diagnosed when the condition doesn't fit into any of the other categories.
Myelodysplastic syndrome associated with an isolated del(5q) chromosome abnormality: This type has a specific chromosome abnormality in the bone marrow cells.

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Join HealthTree Cure Hub and Become a Cure Contributor

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Accelerate the discovery of new treatment options by connecting your records to HealthTree Cure Hub, an innovative tool that powers life-saving research!

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If you are interested in participating in or finding a clinical trial, locating an MDS specialist, or staying informed about updates on MDS with a biweekly newsletter, you can create a free HealthTree Cure Hub account!

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CREATE YOUR FREE ACCOUNT

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If you've recently been diagnosed with MDS, we're sorry that you're in a club that none of us wanted to join. The good news is that you will meet the kindest people in the MDS community and the HealthTree Foundation for MDS is here for you!

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Here are five steps to reduce your anxiety and take meaningful action:

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1. Find an MDS Specialist

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If you do only one thing for your care, it will be to find and consult with an MDS specialist. According to several studies, having an MDS specialist on your team can add quality years to your life. You can always consult with a specialist periodically and get care closer to home, as your local oncologist and MDS specialist coordinate together to give you the best care. Do not leave your sole care in the hands of a local doctor. Your life is worth the effort.

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Find an MDS Specialist

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2. Get the Right Tests

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Before you start treatment, you should make sure your doctor performs the right tests. These include blood counts, bone marrow tests, immunohistochemistry, flow cytometry, cytogenetics, and fluorescent in situ hybridization (FISH). You can start now to become an educated and empowered patient who knows the right kind of tests, labs, and care you should be receiving.

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With the results of these tests, you will understand the type of MDS you have. Not all MDS is genetically the same. The genetic tests must be run before you get treatment, otherwise, there are no MDS cells to test. Treatment does differ between the types of MDS. You are fighting a war and you want to understand your enemy.

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What are the essential MDS tests?

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3. Join HealthTree Cure Hub to Learn What Others Have Done Before You

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HealthTree Cure Hub provides a suite of tools to help you stay ahead of your MDS.

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Join HealthTree Cure Hub

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Track Your Labs

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You’ll start getting an overwhelming number of labs run and you’ll want to start tracking your MDS markers. Keep everything in a single place, like your genetic reports, MDS markers, and other critical information so you can graph your disease. You’ll also be able to access an easy graph showing how each treatment affects your MDS that you can share for second opinions.

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Find Your MDS “Twin”

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In HealthTree Cure Hub, our Twin Machine technology lets you see what other patients like you have received for care, based on their type of MDS. Look ahead and find your twins who are years ahead of you in treatment. Who had the longest remissions? Take notes of their treatments and discuss them with your doctor.

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Discover Side Effect Solutions

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See real-world data of how people are living with their side effects and what they are doing to try and ease them. You can also share your experiences with other patients and vote on solutions that have been successful for you in combating your side effects. By sharing our experiences, we can help each other have a better quality of life.

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Contribute to Research Surveys and Studies Coming Soon

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Add as much information as you can or upload your electronic health records to HealthTree Cure Hub to help MDS researchers connect the dots through anonymized patient stories. There are also surveys and studies that you can participate in by MDS specialists from around the world. These simple, yet innovative surveys and studies will help MDS experts accelerate MDS research.

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Join HealthTree Cure Hub

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4. Start Learning through HealthTree University

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Chances are before being diagnosed with MDS, you had never heard of the disease before. It's overwhelming to receive that diagnosis and then be immediately thrown into making treatment decisions.

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It is in your self-interest to get educated as quickly as possible because empowered MDS patients live longer. Rather than consult Dr. Google, join HealthTree University. We’ve built a comprehensive curriculum in HealthTree University to make getting up-to-speed on MDS easy. Start with the MDS Basics classes and work your way up. The classes are taught by 12 MDS experts and today we have over 72 lectures in 9 courses (with more to come!). We want you to spend your precious clinic time asking your doctor questions about your care, not MDS basics.

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Learn from HealthTree University

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5. Join the HealthTree Community for MDS to Learn More and Make MDS Friends

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The HealthTree Community for Myelodysplastic Syndromes consists of the Podcast, Round Tables, Chapters and Events, and News programs. Here are some actions and steps you can take to get involved in this amazing Community:

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Listen to HealthTree Podcast for MDS episodes and hear 1:1 interviews with MDS experts
Watch HealthTree Round Tables for MDS and hear what's new in the world of MDS from MDS specialists across the globe
Join a HealthTree Community for MDS webinar that interests you and connect with others through events
Join our social media group called HealthTree Connect.
Join our newsletter to read weekly articles and get familiar with MDS terminology, it's a whole new language!

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And as always, reach out to us at support@healthtree.org if you need more help. We’re here for you!

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Best Wishes,

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Jenny Ahlstrom, Founder of the HealthTree Foundation

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MDS patients and their caregivers should meet with the financial counselor at the facility where they are being treated. Each hospital will have its own financial counselor within each specific clinic. The counselor will help determine coverage and estimate out of pocket costs. There may be restrictions on treatment options covered by Medicare and Medicaid. After you have met with the counselor, the resources below can help bridge financial gaps.

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Blood cancer advocate and financial planner Diahanna Valentine helped compile this list of helpful financial resources. To contact Diahanna for professional assistance, email her at myfinancialcoach@healthtree.org.

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PHARMACEUTICAL COMPANY PATIENT ASSISTANCE PROGRAMS

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Bristol Myers Squibb (1-800-861-0048) (Vidaza, Azacitidine, Luspatercept-aamt, Lenalidomide)
Genentech (1-888-941-3331) (Venetoclax)
Jazz Pharmaceuticals (1-833-533-5299) (Daunorubicin)
Pfizer (1-877-744-5675) (Cytarabine, Idamycin, Antithymocyte-aamt)

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MEDICATION ASSISTANCE TOOLS

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RxAssist - This is a comprehensive database of patient assistance programs. Enter your MDS medication to see patient assistance programs and discount programs.
Medication Assistance Tool - This is a search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs.

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ADDITIONAL FINANCIAL PATIENT ASSISTANCE PROGRAMS

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Be The Match - transplant-related financial assistance that covers donor search, housing and travel costs in addition to emergencies post-transplant
CancerCare - covers treatment related costs such as transportation, home care and child care for those in New York City or men in New Jersey or Connecticut
Grants for Single Mothers - directory of grants for single mothers to help with rent, utility bills, child care, education, medication, housing and medical bills
The Leukemia & Lymphoma Society’s Patient Financial Assistant Programs - Patient Aid Program- one time $100 stipend, Urgent Need Program- $500 grant for non-medical expenses
Family Reach Foundation Financial Treatment Program - financial education, financial coaching, emergency relief
American Kidney Fund - covers the cost of insurance premium payments and expenses not covered by insurance for those with kidney disease
Cancer Warrior - medical bill assistance

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GOVERNMENT ASSISTANCE

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Benefits.gov
Centers for Medicare & Medicaid Services
Eligibility.com (Medicare Resources)
Legal Services Corporation
Social Security Administration
Social Security Disability Resource Center
U.S. Department of Veterans Affairs
Fisher House Foundation
Veterans Airlift Command

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HOUSING DURING TREATMENT

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American Cancer Society's Hope Lodges
Healthcare Hospitality Network Inc
Hospitality Homes - Boston, Massachusetts area
Joe’s House
Ronald McDonald House Charities

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LEGAL ISSUES

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American Bar Association
Cancer and Careers
Disability Rights Legal Center
LawHelp.org
National Coalition for Cancer Survivorship
Triage Cancer

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PRESCRIPTION EXPENSES

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HealthWell Foundation
Leukemia and Lymphoma Society Copay Assistance Program
Needy Meds
Patient Advocate Foundation Co-Pay Relief
RxHope

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TRAVEL ASSISTANCE

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Air transportation:\n\t
- Angel Flight
- The Air Care Alliance
- Air Charity Network
- Corporate Angel Network
- Lifeline Pilots
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Ground transportation:\n\t
- American Cancer Society's Road to Recovery Program
- LLS Susan Lang Pay-It-Forward Patient Travel Assistance Program
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Both air and ground transportation:\n\t
- The National Children's Cancer Society Transportation Assistance Fund
- Mercy Medical Angels
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OTHER HELPFUL RESOURCES

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National Cancer Institute Support Services Database
Be The Match Financial Planning Worksheet
Stupid Cancer Insurance and Finance Webinar
LLS Survivorship Workbook (Adults)
LLS Survivorship Workbook (Children and Adolescents)
Cancer Support Community MDS Resources - includes helpline (888-793-9355)
COVID-19 Resources
Caregiver Support - for all cancers
JoyUSFoundation (free outdoor excursions for cancer patients in the Albany NY/Capital Region and Upstate NY)

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Life Expectancy with Myelodysplastic Syndromes (MDS)

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The life expectancy for someone with Myelodysplastic Syndrome (MDS) can vary greatly depending on a number of factors. On average, many patients live with MDS for several years. However, in some cases, the disease can progress rapidly and become life-threatening within a short period of time. It's important to note that these are averages and individual prognosis can vary.

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What Factors Affect Prognosis for Myelodysplastic Syndrome?

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Several key factors influence the prognosis for someone with MDS:

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Age: Older patients generally have a poorer prognosis than younger ones.
Type of MDS: There are several subtypes of MDS, some of which are more aggressive than others.
Blood counts: Low blood counts, particularly low red blood cell counts, can indicate a poorer prognosis.
Genetic changes: Certain genetic mutations can affect the prognosis of MDS.
Prior treatment with chemotherapy or radiation: Patients who have been treated with chemotherapy or radiation for other cancers have a higher risk of developing a more aggressive form of MDS.

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Understanding how these factors interact can help patients and their healthcare teams better anticipate the course of the disease.

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What are the Statistics on Life Expectancy for MDS?

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Survival statistics are useful tools for understanding the general prognosis of MDS. According to the American Cancer Society, median survival times for patients with MDS vary based on the subtype. For example, patients with low-risk MDS might have a median survival time of up to 5.5 years, while those with high-risk MDS may have a median survival time of less than a year. However, it’s essential to recognize that these are median values, meaning that half of the patients will live longer than the median time, while the other half may have a shorter survival time.

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While survival statistics cannot provide an exact prediction of individual outcomes or how long someone will live, they can offer some insight into the likelihood of treatment success. It's important to note that not everyone may be interested in digging into these statistics, and that's perfectly okay. It's a personal choice whether to explore this information or not, but many patients find it helpful in their decision-making.

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What Should I Consider When Looking at Statistics?

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Outdated Data: The numbers provided are based on patients diagnosed with MDS in the past. Recent advancements in treatment may result in better outcomes for individuals currently diagnosed with MDS.
Prognostic Scores: Offer a more detailed perspective on life expectancy by considering various factors like MDS type, specific blood test results, and certain chromosome changes in abnormal cells. However, other factors such as age, overall health, and treatment response can also impact the prognosis. Some statistics are based on prognostic scores.

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To read our comprehensive article on staging and classification of MDS, click here.

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Revised International Prognostic Scoring System (IPSS-R) Risk Groups

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This system was established before important MDS treatment advances in chemotherapy were available, but it is still relevant because the IPSS-R is based on cytogenetic abnormalities, age, blood tests like complete blood count, and the blasts percentage found in a bone marrow biopsy.

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According to the IPSS-R if you were diagnosed with very low risk the median overall survival is 8.8 years contrasting to very high risk which is 0.8 years. It is very important to consider that this estimate was calculated before many current clinical trials (with the main objective of prolonging life expectancy and quality of life) were started. Most of these trials are focused on high-risk and very-high-risk MDS patients.

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WHO Prognostic Scoring System (WPSS) Risk Groups

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WPSS can also be used to predict outcome, median survival and the chance that the MDS will transform into acute myeloid leukemia (AML) within 5 years. These statistics were published in 2007 based on patients diagnosed between 1982 and 2004.

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According to the WPSS the median overall survival for very low-risk MDS is 11.8 years with 3% risk of developing AML in 5 years. Compared to very-high-risk where the median survival is 9 months and has an 84% risk of developing AML in 5 years.

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It is important to know that a prognostic score does not guarantee that time will be exactly what is predicted. Many factors, including new drugs, clinical trials, and better understandings of risk can affect prognosis, so you should not be discouraged with high-risk or very-high-risk MDS diagnosis.

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The Role of Advancements in Treatment

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In summary, survival statistics provide valuable insight into the general prognosis of a specific cancer type, but they should be interpreted cautiously. Recent advancements in MDS treatment may yield better outcomes than older statistics suggest.

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Prognostic scoring systems, such as IPSS-R and WPSS, consider various factors like cytogenetics, age, and blood tests to predict survival and risk of progression to AML. However, it's crucial to remember that these scores do not guarantee individual outcomes, and ongoing clinical trials and advancements in medication aim to improve survival and delay AML transformation.

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It's important to stay hopeful and consult with healthcare professionals for the most accurate and up-to-date information on MDS prognosis and available treatments.

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Join HealthTree Cure Hub and Become a Cure Contributor

\n\n

Accelerate the discovery of new treatment options by connecting your records to HealthTree Cure Hub, an innovative tool that powers life-saving research!

\n\n

CREATE YOUR FREE ACCOUNT

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Remission

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In Myelodysplastic Syndromes (MDS), remission may be permanent or temporary. Below, we explain the different outcomes patients may experience post-treatment.

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Complete Remission (CR)

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In order to be considered in complete remission, patients must maintain the below benchmarks for a full four weeks. Complete remission is reported to begin at the completion of the four weeks of maintenance.

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Peripheral Blood:

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Hemoglobin greater than or equal to 11 g/dL non transfused without erythropoietic support
ANC greater than or equal to 1000/mm3 without myeloid growth factor support
Platelets greater than or equal to 100,000/mm3 without thrombopoietic support
0% blasts in blood

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Bone Marrow:

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Less than 5% myeloblasts with normal cell maturation in all cell lines

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Hematologic Improvement (HI)

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In order to be considered in HI, one of the following must be maintained for at least eight weeks without cytotoxic therapy. Like with CR, HI is reported at the end of the eight week maintenance period.

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Hematologic Improvement - Erythropoietic (HI-E):

\n\n

Hemoglobin, untransfused, increase of greater than or equal to 1.5 g/dL
For RBC transfusions performed for hemoglobin less than or equal to 9.0 - Reduction in RBC transfusions needed for 8 weeks by greater than or equal to 4 units when compared to the number of transfusions needed during the 8 weeks prior to treatment

\n\n

Hematologic improvement – Platelets (HI-P):

\n\n

Pre-treatment platelet count of greater than or equal to 20 ×109, platelet absolute increase of greater than or equal to 30 ×109
Pre-treatment platelet count of less than 20 ×109, platelet absolute increase of greater than or equal to 20 ×109 and greater than or equal to 100% increase from levels pre-treatment

\n\n

Hematologic improvement – neutrophils (HI-N):

\n\n

Neutrophil count increase of greater than or equal to 100% from their pre-treatment level and an absolute increase of greater than or equal to 500/mm3

\n\n

No Response (NR)/Stable Disease (SD)

\n\n

They do not meet the criteria for Hematologic Improvement, but there is no evidence of progression to Acute Myeloid Leukemia

\n\n

Progression from Hematologic Improvement (Prog from HI)

\n\n

In order to be considered in Progression from HI, at least one of the following must be present and have no other explanation:

\n\n

Greater than 50% reduction from the patients maximum response levels in granulocytes or platelets
Reduction in hemoglobin by greater than or equal to 1.5 g/dL
Transfusion dependence

\n\n

Recurrence

\n\n

In MDS, recurrence is the result of at least one MDS cell surviving after treatment. These MDS cells then multiply and interfere with healthy blood formation. Most recurrences occur within the first two years following initial treatment.

\n\n

Relapse from Complete Remission (Rel from CR)

\n\n

Requires at least one of the following:

\n\n

Bone marrow blast percentage is back to pre-treatment levels
Decrease of greater than or equal to 50% from the patients maximum response levels in granulocytes or platelets
Return to transfusion dependence or hemoglobin level greater than or equal to 1.5 g/dL that is lower than prior to therapy

\n\n

Progression to AML

\n\n

Patients may be given an AML diagnosis if they have greater than or equal to 20% blasts in the bone marrow or blood. See our HealthTree for AML 101 pages if your MDS progresses to AML to begin learning how best to treat and fight your AML.

\n","metaDescription":"In Myelodysplastic Syndromes (MDS), remission may be permanent or temporary. Below, we explain the different outcomes patients may experience post-treatment.","metaTitle":"MDS Remission and Relapse","ogTitle":"MDS Remission and Relapse","seoKeywords":"MDS, Myelodysplastic Syndromes, blood cancer, low blood counts, low risk MDS, high risk MDS","slug":"mds-remission-and-relapse","status":"ACTIVE","tags":"MDS, Myelodysplastic Syndromes, blood cancer, low blood counts, low risk MDS, high risk MDS","title":"MDS Remission and Relapse","updatedAt":{"_type":"Date","value":"Wed Nov 02 2022 18:56:35 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/pages/CU8DRFdTqqy6bjN9Pg4l"},"snapshot":{"exists":true,"id":"CU8DRFdTqqy6bjN9Pg4l","ref":{"_type":"DocumentReference","path":"apps/community/pages/CU8DRFdTqqy6bjN9Pg4l"}}},{"data":{"bannerImageTitle":"What are the Signs and Symptoms of MDS?","bannerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2FSignsSymptoms.jpg?alt=media&token=dbd89975-aad5-4555-b362-551ce43da5ac&_gl=1*gogyw6*_ga*OTAwNjgyOTIwLjE2NjY0MzU0NDY.*_ga_CW55HF8NVT*MTY5ODg4MDg5NC4yOTYuMS4xNjk4ODgwOTU5LjYwLjAuMA","createdAt":{"_type":"Date","value":"Fri Sep 01 2023 15:49:43 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},"disease101":true,"htmlContent":"

What are the Signs and Symptoms of Myelodysplastic Syndrome?

Myelodysplastic syndromes (MDS) are a group of disorders caused by poorly formed blood cells or cells that do not work properly. The signs and symptoms of MDS are often subtle and many patients do not experience any symptoms in the early stages of the disease. However, as the disease progresses, symptoms may become more apparent. It's important to note that these symptoms can also be caused by conditions other than MDS, so it's crucial to seek medical advice for a proper diagnosis.

How to Recognize the Symptoms of MDS?

In the early stages of MDS, symptoms might be subtle or nonexistent. However, as the disease progresses, symptoms often become more apparent. The main symptoms to look out for are related to low blood counts, which can be detected during routine blood work even before physical symptoms appear. If you want to know what symptoms indicate relapse in MDS, you can click here.

What Symptoms May Indicate Low Blood Counts?

Each blood cell serves a different function in the body, for example, red blood cells carry nutrients and oxygen to the tissues, platelets play a crucial role in blood circulation and wound healing, white blood cells help protect the body from infections and harmful substances.

Low Red Blood Cell Count (Anemia)\n
- Symptoms: Fatigue, weakness, shortness of breath, pale skin, and chest pain.
- Why It Happens: Red blood cells are responsible for carrying oxygen throughout the body. Decreased red blood cells means less oxygen is delivered to tissues, causing these symptoms.
\n
Low White Blood Cell Count (Neutropenia or Leukopenia)\n
- Symptoms: Increased frequency of infections, fevers, and common infections such as skin, sinus, lung, and urinary infections.
- Why It Happens: White blood cells help the body fight off infections. A low count makes you more susceptible to illnesses.
\n
Low Platelet Count (Thrombocytopenia)\n
- Symptoms: Easy bruising, excessive bleeding (especially from the gums after dental work), frequent nosebleeds, and the appearance of pinpoint-sized red spots under the skin (petechiae).
- Why It Happens: Platelets are essential for blood clotting. A low platelet count increases the risk of bleeding and bruising.
\n

What are Other Common Symptoms of MDS?

Weight Loss: Unintentional loss of weight can occur as the disease progresses.
Bone Pain: Some patients experience pain in the bones due to abnormal blood cell production in the bone marrow.
Loss of Appetite: A reduced desire to eat, which may contribute to weight loss.
Fever: Unexplained fevers can be a sign of an underlying infection or the disease itself.

When to Seek Medical Care?

If you or a loved one are experiencing any of the above symptoms, it's crucial to seek medical attention. While these symptoms can be caused by conditions other than MDS, they still warrant a visit to a healthcare provider for further evaluation. Early diagnosis and treatment can help manage the symptoms of MDS and improve quality of life.

What are Treatments for MDS?

The treatment for MDS varies depending on the type and stage of the disease, as well as the patient's overall health. Treatment may include:

Supportive Care: To manage symptoms such as anemia or infections.
Drug Therapy: Medications to stimulate blood cell production or to modify the immune system.
Stem Cell Transplantation: In some cases, this may be a curative option.

Myelodysplastic syndromes are complex disorders with symptoms that may not always be obvious. However, by understanding the signs and symptoms, patients can seek timely medical care, which can lead to better outcomes. Always consult with a healthcare provider if you suspect you might have MDS or if you have been diagnosed and need more information on managing the condition.

Want to Learn More About Myelodysplastic Syndromes?

Expanding knowledge for all patients and discovering the best time to start treatment is possible thanks to research. You can actively participate by staying informed with the latest MDS news, recruiting trials, surveys, and more!

subscribe to newsletter

","metaDescription":"Learn about the signs and symptoms of Myelodysplastic Syndrome (MDS), including fatigue, frequent infections, and easy bruising. ","metaTitle":"What are the Signs and Symptoms of MDS?","migrated":true,"migratedSource":"ai-create-diseases","ogTitle":"What are the signs and symptoms of Myelodysplastic Syndrome?","seoKeywords":"Signs of Myelodysplastic Syndrome,Symptoms of Myelodysplastic Syndrome,Myelodysplastic syndromes,MDS,poorly formed blood cells,MDS symptoms,Fatigue and weakness,Frequent infections,Easy bruising or bleeding,Pale skin,Shortness of breath,Pinpoint-sized red spots under skin,petechiae,Seek Care For Myelodysplastic Syndrome,Early diagnosis of MDS,Treatment options for MDS,MDS drug therapy,stem cell transplantation for MDS","slug":"what-are-the-signs-and-symptoms-of-myelodysplastic-syndrome","status":"ACTIVE","tags":"Signs of Myelodysplastic Syndrome,Symptoms of Myelodysplastic Syndrome,Myelodysplastic syndromes,MDS,poorly formed blood cells,MDS symptoms,Fatigue and weakness,Frequent infections,Easy bruising or bleeding,Pale skin,Shortness of breath,Pinpoint-sized red spots under skin,petechiae,Seek Care For Myelodysplastic Syndrome,Early diagnosis of MDS,Treatment options for MDS,MDS drug therapy,stem cell transplantation for MDS","title":"What are the Signs and Symptoms of Myelodysplastic Syndrome?","updatedAt":{"_type":"Date","value":"Tue May 06 2025 21:08:56 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/pages/LCuk8Z6Mv92wTDOooKCU"},"snapshot":{"exists":true,"id":"LCuk8Z6Mv92wTDOooKCU","ref":{"_type":"DocumentReference","path":"apps/community/pages/LCuk8Z6Mv92wTDOooKCU"}}}],"appImage":[],"coaches":[],"contentDiseaseName":"MDS","donateLink":"https://give.healthtree.org/give/628617/#!/donation/checkout?c_src=website_donate_button","featuredStories":[{"data":{"bio":"I've been a multiple myeloma warrior for 10 years. 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Coping with a blood cancer diagnosis can be a profound emotional journey, encompassing a range of feelings from fear and anxiety to hopelessness. To support you in managing these emotions, an increasingly recognized therapeutic approach is Eye Movement Desensitization and Reprocessing (EMDR).

Originally developed for treating trauma, EMDR has shown promise in helping individuals confront a variety of stressful life experiences, including chronic illness management. This therapy technique may help you recover more quickly from traumatic emotions associated with living with blood cancer.

What is EMDR?

EMDR is a psychotherapy technique designed to alleviate the distress associated with traumatic memories. Developed by Francine Shapiro in the late 1980s, it's based on the premise that the mind can heal from psychological trauma much as the body recovers from physical trauma. When you cut your hand, for instance, your body works to close the wound. If a foreign object or repeated injury irritates the wound, it festers and causes pain. Once the block is removed, healing resumes.

EMDR therapy demonstrates that a similar sequence of events occurs with mental processes. The brain's information processing system naturally moves toward mental health unless it's blocked by the impact of a disturbing event.

How Does EMDR Work?

EMDR therapy involves focusing simultaneously on (1) associations of difficult images, thoughts, emotions, and bodily sensations and (2) bilateral stimulation, such as tapping your knees alternately with your hands. This dual attention stimulates the brain's information processing system, enabling it to process the difficult event.

Steps to Perform EMDR at Home

EMDR can be performed under the guidance of a trained therapist or adapted to use at home. EMDR steps include:

Set up a comfortable space: Find a quiet, comfortable space where you can relax without interruption.
Identify a distressing memory or emotion: Think about a memory that is troubling you. This can be related or unrelated to your blood cancer diagnosis.
Start bilateral stimulation: You can do this by tapping your knees alternately with your hands or tapping each shoulder with the alternate hand. You can also choose to do the eye movement version of EMDR. Feel free to follow along with the self-guided video below, or hold your fingers about 18 inches in front of your face and move them slowly from side to side, following with your eyes only.
Focus on the distressing memory: As you engage in bilateral stimulation, allow your mind to focus on the distressing memory or emotion. Notice what thoughts, feelings, or bodily sensations arise.
Anchor in the present: After a few moments of focusing on the distressing memory while engaging in bilateral stimulation, bring your attention back to the present moment. Focus on your breathing or a physical object in your surroundings.
Reflect: Think about the experience. Did your feelings or thoughts about the memory change? Do you feel less distressed?

The duration of EMDR therapy varies depending on the individual's needs. Some may experience relief in just a few sessions, while others may require a longer period.

EMDR Benefits

EMDR therapy may offer several benefits for people with blood cancer, including:

Improved immune function: Chronic stress can weaken the immune system. EMDR therapy helps reduce stress, which in turn can support your immune system.
Reduced stress and anxiety: By processing traumatic memories, EMDR can help lower stress and anxiety levels.
Improved coping strategies: EMDR can enhance coping mechanisms, enabling patients to better manage their emotional responses to the cancer.
Enhanced quality of life: Lower stress levels can significantly improve overall quality of life, allowing patients to enjoy more activities and maintain stronger relationships.

Conclusion

For people with blood cancer, navigating the emotional impact of the diagnosis is as important as managing the physical aspects. EMDR presents a promising therapeutic approach to address the psychological toll, offering support in emotional healing and resilience. As with any therapy technique, it is recommended to consult with a licensed mental health therapist to ensure it's an appropriate strategy for your specific situation.

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People diagnosed with cancer can often face mental health issues such as depression, anxiety, and emotional distress. This article explains how antidepressants can help reduce the mental health burden in cancer care. It also covers how these treatments interact with cancer therapies and the importance of addressing mental health alongside physical treatment.

Mental Health Challenges Are Common During Cancer

According to the NIH, up to 40% of people with cancer experience emotional distress. Around 25–30% are diagnosed with psychiatric conditions like depression, anxiety, or difficulty adjusting to the new lifestyle. Depression and anxiety are not just side effects of cancer; they can worsen quality of life or delay seeking treatment.

That’s why integrating mental health care into cancer treatment is essential. However, research shows that mental health is often underdiagnosed and undertreated in cancer patients.

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Antidepressants May Improve Psychological and Physical Symptoms

Several studies confirm that antidepressants can effectively manage moderate to severe depression in people with cancer. Selective serotonin reuptake inhibitors (SSRIs) and SNRIs, or serotonin-norepinephrine reuptake inhibitors, are among the most used antidepressants due to their effectiveness and low side effects.

Beyond treating depression, antidepressants can help with symptoms that often come with cancer and its treatment:

Fatigue: Medications like bupropion (Wellbutrin) have stimulating effects and may improve energy and concentration.
Nerve pain: medications like duloxetine (Cymbalta) can relieve nerve pain from chemotherapy.
Sleep issues and appetite loss: Mirtazapine (Remeron, Organon) may improve sleep, reduce nausea, and boost appetite.
Hot flashes: SSRIs and SNRIs have shown success in managing hot flashes, particularly for people on hormonal therapies.

These added benefits make antidepressants a useful option for people experiencing multiple symptoms related to cancer.

Avoiding Drug Interactions for Better Outcomes

People with cancer often take many medications. Some antidepressants can interact with chemotherapy or hormone treatments. For example, if an antidepressant interacts with the metabolism of a chemotherapy treatment, the effect could range from neither working to an unexpected side effect.

This is why doctors must evaluate each person’s full treatment plan when prescribing antidepressants. If a medication you are taking interacts with a new one, keep in mind there are always options, not only for medication for mental health, but also for cancer care.

SSRIs Might Offer Protective Effects Against Certain Cancers

Some large studies suggest SSRIs could reduce the risk of developing certain cancers. For example:

A 39% lower risk of oral cancer in people who used SSRIs
Reduced rates of liver cancer with fluoxetine (Prozac) and sertraline (Zoloft) use.

These findings are still being researched, but they highlight the need to look at the broader effects of these treatments.

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Are Guidelines For Mental Health In Cancer Used?

While there are mental health guidelines for cancer care, these are not consistently used. Some doctors may not recognize when emotional symptoms go beyond expected distress, and some hospitals lack dedicated mental health services. This gap in care means many patients who could benefit from antidepressants or therapy never receive them. Training providers to identify mental health issues and creating better connections between oncology and mental health services could improve outcomes.

A Holistic Approach to Cancer Treatment

Combining antidepressant treatment with counseling or therapy offers the best results. Collaborative care, where psychological and medical support are integrated, can reduce symptoms and improve daily activities.

When using antidepressants, especially with anti-cancer treatment, it’s also important to:

Start at low doses to reduce side effects
Choose medications based on the symptoms (energy loss, insomnia, anxiety)
Monitor closely for drug interactions
Reevaluate regularly to adjust treatment

Remember that it may take 2–4 weeks to notice improvement and 4–6 weeks for the full effect. Always consult with your healthcare team about possible interactions with your current treatment, and if you notice discomfort or anything out of the ordinary, seek advice before discontinuing treatment on your own.

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Final Thoughts

Mental health care is a crucial but often overlooked part of cancer treatment. Antidepressants can relieve psychological symptoms and support overall well-being. When used carefully and with proper guidance, they can also help manage physical symptoms like pain, fatigue, and hot flashes. Ensuring these therapies are part of a personalized, integrated care plan can make a meaningful difference in patients’ quality of life.

Stay tuned for more articles at the HealthTree News site!

See Mental Health Resources

Sources:

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A new scientific study published in Nature Journals offers insight into how leukemia cells grow, specifically pointing to taurine, an amino acid found naturally in the body and some foods, as a possible contributor. In this article, you’ll learn what taurine is, how it affects leukemia cells, and why understanding its role in the bone marrow may be important for future therapies.

What is Taurine’s Role In Leukemia?

Taurine is a non-essential amino acid, meaning the body can produce it on its own. It’s also present in meat, fish, eggs, and some energy drinks and protein supplements. Taurine supports functions in the heart, brain, muscles, and bone marrow.

Researchers from the Wilmot Cancer Institute at the University of Rochester found that taurine may play a much more specific role in leukemia and blood cancers. Their study shows that leukemia cells cannot produce taurine on their own. Instead, they absorb it from the bone marrow microenvironment.

Researchers used genetic tools to block the taurine transporter in mouse models and human leukemia cell samples. This stopped the leukemia cells from growing. This discovery highlights a new way to target cancer cells without affecting healthy cells. This can help develop new therapies that stop taurine from reaching these cancer cells, which could help slow disease progression.

Taurine May Interact With Other Blood Cancer Types

This research focused on different subtypes of myeloid cancers, including:

Acute myeloid leukemia (AML)
Chronic myeloid leukemia (CML)
Myelodysplastic syndromes (MDS)

All of these start in blood-forming stem cells in the bone marrow. The study found that the taurine transporter is essential across these types, meaning this mechanism may be relevant for new the development of new therapies.

Taurine Supplements May Not Be Safe for Everyone

Taurine is widely available in supplements and energy drinks, and some cancer patients use it to manage side effects of therapy. However, based on this new data, Dr. Jane Liesveld, a leukemia expert and study co-author, cautions that high-dose taurine could actually be feeding cancer cell growth in the bone marrow.

If you are considering or already using taurine supplements, you can talk more about this with your healthcare team to determine if you are benefiting from taurine supplementation or if you could use an alternative. While taurine has been explored for benefits in other cancers, such as stomach cancer, its effects in leukemia appear to differ and may require more careful evaluation.

What’s Next

Dr. Jeevisha Bajaj, lead investigator of this study, emphasized the need to study taurine levels in people with leukemia to better understand its role. The team’s current data supports developing treatments that block taurine uptake in cancer cells. This research could help shape safer and more effective therapies by cutting off a key nutrient that leukemia cells depend on.

Learning more about the role of supplements in their specific cancer type can help patients make informed decisions about their health, and further improving their outcomes. You can learn more about research news and treatment advances in our HealthTree News site.

Sources:

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Recently, a study presented at the 66th ASH conference shed light on the unique challenges patients living with myelodysplastic syndrome (MDS) might face. These can impact every aspect of life, from health and well-being to financial stability.

We had the opportunity to interview Dr. Somedeb Ball, the lead investigator and presenter of this study, and he discussed important insights of his research in a comprehensive way.

In this article, we’ll cover the study highlights, which evaluate potential predictors of quality of life and financial toxicity in MDS, with particular reference to patients’ sex and race.

The findings can be divided by the factors studied:

MDS Characteristics and Treatment: Patients with higher-risk MDS reported lower quality-of-life scores than those with lower-risk disease. Intensive treatments, such as chemotherapy or stem cell transplantation, were associated with higher levels of physical and emotional distress.
Sex Disparities: Women were at a disadvantage as they reported significantly worse quality of life compared to men, with higher levels of fatigue, anxiety, and depression. Women were also more likely to face barriers in accessing advanced treatments, contributing to feelings of inequality and distress.
Race and Ethnic Disparities: Black, Hispanic, and Asian patients experienced greater financial toxicity, including higher out-of-pocket costs for care. They also had lower access to specialized care and clinical trials, potentially affecting their outcomes and survival rates.
Financial Toxicity: Across all groups, this was a significant concern, with 58% of patients reporting moderate to severe financial strain. High treatment costs and missed workdays due to illness contributed to economic challenges for patients and their families.

What Does This Mean for Patients?

Studies like this are necessary for health professionals to consider social disparities to provide better care and support for their MDS patients. For patients, this qualitative study can contribute to self-advocacy, as it reminds us that every person is different and faces unique challenges.

Here are some action steps that can help balance social disparities:

1. Discuss Your Concerns with Your Healthcare Team

Talk openly about your symptoms, treatment side effects, and emotional well-being. Your healthcare team can adjust your care plan to better suit your needs.
Ask about resources for managing financial toxicity, such as assistance programs or social workers who specialize in cancer care. You can also find more helpful resources here.

2. Advocate for Yourself

Request information on clinical trials, which often provide access to cutting-edge treatments and can reduce financial burdens.
Share your concerns about disparities with your care team to ensure you receive equitable and personalized care.

3. Seek Support

Join patient advocacy groups or online communities to connect with others facing similar challenges. You can join HealthTree’s community here.
Lean on support networks, including family, friends, and professional counselors, to help navigate emotional and financial stressors.

4. Raise Awareness of Disparities

Share your story to shed light on the challenges faced by MDS patients, especially those in underserved populations.
Participate in awareness campaigns and advocacy efforts to promote equal access to care and resources.

Moving Forward

If you or a loved one is living with MDS, remember that you are not alone. Working closely with your healthcare team, seeking support, and raising awareness can help ensure better care for all. Together, we can address disparities and create a brighter future for MDS patients everywhere.

To keep learning more, you can read these articles, where we share updates from the latest medical conferences in a comprehensive, patient-focused language:

Sources:

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Mental Health Challenges Are Common During Cancer

That’s why integrating mental health care into cancer treatment is essential. However, research shows that mental health is often underdiagnosed and undertreated in cancer patients.

!AD!

Antidepressants May Improve Psychological and Physical Symptoms

Beyond treating depression, antidepressants can help with symptoms that often come with cancer and its treatment:

Fatigue: Medications like bupropion (Wellbutrin) have stimulating effects and may improve energy and concentration.
Nerve pain: medications like duloxetine (Cymbalta) can relieve nerve pain from chemotherapy.
Sleep issues and appetite loss: Mirtazapine (Remeron, Organon) may improve sleep, reduce nausea, and boost appetite.
Hot flashes: SSRIs and SNRIs have shown success in managing hot flashes, particularly for people on hormonal therapies.

These added benefits make antidepressants a useful option for people experiencing multiple symptoms related to cancer.

Avoiding Drug Interactions for Better Outcomes

SSRIs Might Offer Protective Effects Against Certain Cancers

Some large studies suggest SSRIs could reduce the risk of developing certain cancers. For example:

A 39% lower risk of oral cancer in people who used SSRIs
Reduced rates of liver cancer with fluoxetine (Prozac) and sertraline (Zoloft) use.

These findings are still being researched, but they highlight the need to look at the broader effects of these treatments.

!AD!

Are Guidelines For Mental Health In Cancer Used?

A Holistic Approach to Cancer Treatment

When using antidepressants, especially with anti-cancer treatment, it’s also important to:

Start at low doses to reduce side effects
Choose medications based on the symptoms (energy loss, insomnia, anxiety)
Monitor closely for drug interactions
Reevaluate regularly to adjust treatment

!AD!

Final Thoughts

Stay tuned for more articles at the HealthTree News site!

See Mental Health Resources

Sources:

What is Taurine’s Role In Leukemia?

Taurine May Interact With Other Blood Cancer Types

This research focused on different subtypes of myeloid cancers, including:

Acute myeloid leukemia (AML)
Chronic myeloid leukemia (CML)
Myelodysplastic syndromes (MDS)

Taurine Supplements May Not Be Safe for Everyone

What’s Next

Sources:

We had the opportunity to interview Dr. Somedeb Ball, the lead investigator and presenter of this study, and he discussed important insights of his research in a comprehensive way.

In this article, we’ll cover the study highlights, which evaluate potential predictors of quality of life and financial toxicity in MDS, with particular reference to patients’ sex and race.

The findings can be divided by the factors studied:

MDS Characteristics and Treatment: Patients with higher-risk MDS reported lower quality-of-life scores than those with lower-risk disease. Intensive treatments, such as chemotherapy or stem cell transplantation, were associated with higher levels of physical and emotional distress.
Sex Disparities: Women were at a disadvantage as they reported significantly worse quality of life compared to men, with higher levels of fatigue, anxiety, and depression. Women were also more likely to face barriers in accessing advanced treatments, contributing to feelings of inequality and distress.
Race and Ethnic Disparities: Black, Hispanic, and Asian patients experienced greater financial toxicity, including higher out-of-pocket costs for care. They also had lower access to specialized care and clinical trials, potentially affecting their outcomes and survival rates.
Financial Toxicity: Across all groups, this was a significant concern, with 58% of patients reporting moderate to severe financial strain. High treatment costs and missed workdays due to illness contributed to economic challenges for patients and their families.

What Does This Mean for Patients?

Here are some action steps that can help balance social disparities:

1. Discuss Your Concerns with Your Healthcare Team

Talk openly about your symptoms, treatment side effects, and emotional well-being. Your healthcare team can adjust your care plan to better suit your needs.
Ask about resources for managing financial toxicity, such as assistance programs or social workers who specialize in cancer care. You can also find more helpful resources here.

2. Advocate for Yourself

Request information on clinical trials, which often provide access to cutting-edge treatments and can reduce financial burdens.
Share your concerns about disparities with your care team to ensure you receive equitable and personalized care.

3. Seek Support

Join patient advocacy groups or online communities to connect with others facing similar challenges. You can join HealthTree’s community here.
Lean on support networks, including family, friends, and professional counselors, to help navigate emotional and financial stressors.

4. Raise Awareness of Disparities

Share your story to shed light on the challenges faced by MDS patients, especially those in underserved populations.
Participate in awareness campaigns and advocacy efforts to promote equal access to care and resources.

Moving Forward

To keep learning more, you can read these articles, where we share updates from the latest medical conferences in a comprehensive, patient-focused language:

Sources:

What are the U.S. Statistics for MDS?

Helpful MDS Glossary

What are MDS Symptoms?

Why Do People Get Myelodysplastic Syndrome?

What Are the Risk Factors for Developing MDS?

What are the Types of Myelodysplastic Syndromes?

Join HealthTree Cure Hub and Become a Cure Contributor ​​

1. Find an MDS Specialist

2. Get the Right Tests

3. Join HealthTree Cure Hub to Learn What Others Have Done Before You

Track Your Labs

Find Your MDS “Twin”

Discover Side Effect Solutions

Contribute to Research *Surveys and Studies Coming Soon*

4. Start Learning through HealthTree University

5. Join the HealthTree Community for MDS to Learn More and Make MDS Friends

PHARMACEUTICAL COMPANY PATIENT ASSISTANCE PROGRAMS

MEDICATION ASSISTANCE TOOLS

ADDITIONAL FINANCIAL PATIENT ASSISTANCE PROGRAMS

GOVERNMENT ASSISTANCE

HOUSING DURING TREATMENT

LEGAL ISSUES

PRESCRIPTION EXPENSES

TRAVEL ASSISTANCE

OTHER HELPFUL RESOURCES

Life Expectancy with Myelodysplastic Syndromes (MDS)

What Factors Affect Prognosis for Myelodysplastic Syndrome?

What are the Statistics on Life Expectancy for MDS?

What Should I Consider When Looking at Statistics?

Revised International Prognostic Scoring System (IPSS-R) Risk Groups

WHO Prognostic Scoring System (WPSS) Risk Groups

The Role of Advancements in Treatment

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Remission

Complete Remission (CR)

Peripheral Blood:

Bone Marrow:

Hematologic Improvement (HI)

Hematologic Improvement - Erythropoietic (HI-E):

Hematologic improvement – Platelets (HI-P):

Hematologic improvement – neutrophils (HI-N):

No Response (NR)/Stable Disease (SD)

Progression from Hematologic Improvement (Prog from HI)

Recurrence

Relapse from Complete Remission (Rel from CR)

Progression to AML

What are the Signs and Symptoms of Myelodysplastic Syndrome?

How to Recognize the Symptoms of MDS?

What Symptoms May Indicate Low Blood Counts?

What are Other Common Symptoms of MDS?

When to Seek Medical Care?

What are Treatments for MDS?

Want to Learn More About Myelodysplastic Syndromes?

What is EMDR?

How Does EMDR Work?

Steps to Perform EMDR at Home

EMDR Benefits

Conclusion

Mental Health Challenges Are Common During Cancer

Antidepressants May Improve Psychological and Physical Symptoms

Avoiding Drug Interactions for Better Outcomes

SSRIs Might Offer Protective Effects Against Certain Cancers

Are Guidelines For Mental Health In Cancer Used?

A Holistic Approach to Cancer Treatment

Final Thoughts

What is Taurine’s Role In Leukemia?

Taurine May Interact With Other Blood Cancer Types

Taurine Supplements May Not Be Safe for Everyone

What’s Next

What Does This Mean for Patients?

1. Discuss Your Concerns with Your Healthcare Team

2. Advocate for Yourself

3. Seek Support

4. Raise Awareness of Disparities

Moving Forward

Mental Health Challenges Are Common During Cancer

Antidepressants May Improve Psychological and Physical Symptoms

Avoiding Drug Interactions for Better Outcomes

SSRIs Might Offer Protective Effects Against Certain Cancers

Are Guidelines For Mental Health In Cancer Used?

Join HealthTree Cure Hub and Become a Cure Contributor

Contribute to Research Surveys and Studies Coming Soon

Join HealthTree Cure Hub and Become a Cure Contributor