MDS is a bone marrow failure disorder

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Caregiving: Living with MDS: Resources for Managing Each Day
Caregivers are an essential part of the health care team. They are most often family or close friends, but may also be professionals that assist with organizing and delivering care. There are many distinct roles for caregivers. Many involve everyday activities such as home management, shopping, and [..] Read More
Child Care
Caregivers are an essential part of the health care team. They are most often family or close friends, but may also be professionals that assist with organizing and delivering care. There are many distinct roles for caregivers. Many involve everyday activities such as home management, shopping, and [..] Read More
Diarrhea
You may experience either constipation or diarrhea because of your illness(s) or medications. There are several things you can do to prevent or treat changes in bowel function. Things you can do for Constipation Keep a log of symptoms that you are concerned about. These can be tracked in the M[..] Read More
Diet and Nutrition
A balanced diet, daily activity and exercise as tolerated, and participation in activities of enjoyment are important to maintain optimal health and well-being. A balanced diet can help combat fatigue and illness. Adequate intake of food and fluids also helps individuals tolerate treatment. Fluids a[..] Read More
Employment
Many patients or caregivers LIVING with MDS continue to work. Ask your health care provider how to plan for the time off you will need to make sure you are receiving your treatment in the safest and most effective way possible.  Understand that these recommendations may change unexpectedly due t[..] Read More
Fatigue and Anemia
Fatigue is defined as an unusual tiredness that interferes with normal activities and is not relieved by resting or a good night’s sleep. Fatigue may be more severe in patients with MDS who also have anemia. Insomnia (difficulty sleeping) is common in older adults and may contribute to fatigue. Ot[..] Read More
Fever and Infections
Fever may be a result of infections or may be a side effect of certain chemotherapy agents used to treat MDS. The Absolute Neutrophil Count (ANC) is used to determine your risk of infection.  Guidelines for activities while neutropenic are related to the risk of being exposed to people or things th[..] Read More
Finances and Insurance
Living with any illness and its treatment, including MDS, can place a financial burden on you and your family.  There are several resources that may be useful in seeking assistance with financial concerns you may have. The first step is to ask members of your health care team who you can talk to[..] Read More
Home Management
Living each day in health or faced with the challenge of illness requires organization and planning. When faced with illness or other unexpected events, it is even more important to organize your resources.    MDS Manager can help you organize your resources.  You can enter any member of your te[..] Read More
IPSS-R Score
To access the online IPSS-R calculators or download the IPSS-R mobile applications, please use the following link: https://www.mds-foundation.org/ipss-r-calculator/[..] Read More
Lack of Appetite
A balanced diet, daily activity and exercise as tolerated, and participation in activities of enjoyment are important to maintain optimal health and well-being. A balanced diet can help combat fatigue and illness. Adequate intake of food and fluids also helps individuals tolerate treatment. Fluids a[..] Read More
MDS Liaison: Resources available to you through the MDS Foundation
The diagnosis of MDS is often unexpected and filled with both immediate and long-term challenges.  Assisting patients and their caregivers to live with the highest quality of life possible despite the diagnosis of MDS is the primary mission of The Myelodysplastic Syndromes Foundation.  Cancer pati[..] Read More
Memory and concentration problems
Problems with attention, thinking warm memory are common in patients with cancer.  These may vary in severity and I’ll often make it hard to complete daily tasks.  If you’re experiencing any changes in attention, thinking or memory, be sure to discuss this with your health care team.  We want[..] Read More
Mobility
Out-of-home mobility is necessary for accessing commodities, making use of neighborhood facilities, and participation in meaningful social, cultural, and physical activities. Mobility also promotes healthy aging as it relates to the basic human need of physical movement.  You may have limited mobil[..] Read More
Molecular profile
Your MDS Profile provides the information needed to estimate your prognosis, including the risk of developing acute leukemia. Two of the most important criteria used to estimate prognosis are your Revised International Prognostic Scoring System (IPSS-R) and the molecular profile for your MDS. Th[..] Read More
Mouth Sores/Mucositis
Sores or swelling in the tissue in the mouth (mucositis) can occur because of cancer treatment, other illnesses, certain medications, or poor dental health.  Patients with MDS we will undergone bone marrow transplantation may experience graft-versus-host disease in the mouth that may be painful. [..] Read More
Nausea and Vomiting
Nausea is a symptom that is often described as an unpleasant feeling associated with flushing, tachycardia, and the urge to vomit.  Vomiting is a physical phenomenon that involves contraction of the abdomen, chest wall muscles, and movement of the diaphragm followed by expulsion of the stomach cont[..] Read More
Pain
Many patients and survivors experience pain during and after cancer treatment. It may help to know that cancer pain can be treated successfully for most patients. But it is important to focus on managing pain during all phases of cancer treatment and into survivorship. Things you can do: Kee[..] Read More
Sexuality and Intimacy
Sexuality is an important part of your overall well-being and should be discussed with your healthcare provider. Do not be concerned about bringing up the topic of sexuality to your healthcare provider. There may be some safety precautions necessary if your blood counts are low to prevent infection [..] Read More
Shortness of breath
The feeling that you are not able to get a good breath or are not getting enough oxygen can be alarming and uncomfortable. Shortness of breath, or dyspnea, may be a result of several underlying problems.  In patients with MDS, anemia may predispose you to feeling short of breath with activity.  De[..] Read More
Skin changes including rash
The most common skin changes for patients with MDS are rashes or injection site reactions.  A rash is a change of the skin which affects its color, appearance, or texture. A rash may be localized in one part of the body, or affect all of the skin. Rash is generally caused by a skin irritation that [..] Read More
Sleep and Insomnia
Wellness begins with a good night’s rest, which can be challenging when diagnosed with MDS. It may be reassuring to know that you are not alone in having a difficult time sleeping. One-third to one-half of cancer patients experience changes in their sleep patterns. Difficulty sleeping has been lin[..] Read More
Spirituality
Spirituality is an important aspect of living with cancer, including MDS. There is a growing body of evidence indicating that spiritual practices are associated with better health and wellbeing. Spirituality is a broad concept that is defined in several diverse ways.  In general, it includes a s[..] Read More
Taking care of your bowels: Constipation or Diarrhea
You may experience either constipation or diarrhea because of your illness(s) or medications. There are several things you can do to prevent or treat changes in bowel function. Things you can do for Constipation Keep a log of symptoms that you are concerned about. These can be tracked in the M[..] Read More
The Emotion of Living with MDS: Depression, Anxiety, Uncertainty and Sadness
Anxiety is a common reaction to learning that one has MDS. Anxiety can range from a mild and vague feeling that something may be wrong, to an overwhelming feeling that interferes with a person’s ability to function. All people experience periods of anxiety in their lives Uncertainty about the diag[..] Read More
The Emotion of Living with MDS: Depression, Anxiety, Uncertainty and Sadness
Depression is a common consequence of living with cancer, including MDS. Adjusting to the diagnosis of MDS affects each person differently. While some people can continue to live, a full and rewarding life, others may find the stress of coping with MDS more challenging. These challenges are real and[..] Read More
Thrombocytopenia
Thrombocytopenia is a decrease in the number of platelets in the blood. Platelets help stop bleeding by clumping and forming plugs in blood vessel holes (clotting). Platelets also help maintain normal blood vessel health in the body. When a patient develops thrombocytopenia, the risk of bleeding or [..] Read More
Transportation Resources
Cancer Care http://www.cancercare.org/publications/303-transportation_resources Here are other organizations that provide transportation resources for individuals affected by cancer. Air Charity Network 8776217177, aircharitynetwork.org Air Charity Network serves all 50 states and provides[..] Read More
Urinary symptoms
The most common urinary symptoms in older adults are incontinence, difficulty urinating or pain with urination.  These symptoms may indicate an underlying problem such as infection, or prostate enlargement.  In some cases, these are normal changes of aging. Things you can do: Keep a log of s[..] Read More
Review answers to commonly asked questions or get answers to your questions from an MDS expert