ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of MDS and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.
Every treatment for cancer can cause side effects or changes to your body and how you feel. For many reasons, people do not experience the same side effects even when they are given the same treatment for the same disease. This can make it hard to predict how you will feel during treatment.
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As you prepare to start treatment for MDS, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment palliative and supportive care. It is an important part of your treatment plan, regardless of your age or the stage of disease.
Common physical side effects from each treatment option for MDS are described in the Types of Treatment section. Learn more about side effects of MDS and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the subtype and classification of MDS, the length and dose of treatment, and your general health.
Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.
You may find it helpful to keep track of your side effects so it is easier to talk about any changes with your health care team. Learn more about why tracking side effects is helpful.
Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.
You can have emotional and social effects as well as physical effects after a diagnosis of MDS. This may include dealing with difficult emotions, such as sadness, anxiety, fear, or anger, or managing stress. Sometimes, patients have problems expressing how they feel to their loved ones, or people do not know what to say in response.
Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.
Treatment for MDS can be expensive. It may be a source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost of medical care stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.
Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities, people with fewer financial resources, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, adults older than 65, and people who live in rural areas or other underserved communities.
If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people.
Before starting treatment, talk with your doctor about possible side effects. Ask:
Which side effects are most likely?
When are they are likely to happen?
What can we do to prevent or relieve them?
When and who should I call about side effects?
Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, and social effects of MDS.
Family members and friends often play an important role in taking care of a person with MDS. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves.
Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:
Providing support and encouragement
Talking with the health care team
Helping manage symptoms and side effects
Coordinating medical appointments
Providing a ride to and from appointments
Assisting with meals
Helping with household chores
Handling insurance and billing issues
A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.
Looking for More on How to Track Side Effects?
Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:
Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.
ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, constipation, diarrhea, rash, and immunotherapy side effects that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.
The next section in this guide is Follow-up Care. It explains the importance of check-ups after treatment is finished. Use the menu to choose a different section to read in this guide.