Myelodysplastic syndrome (MDS) describes a group of cancers that make blood cells in your bone marrow unable to mature and become healthy blood cells.
MDS can cause big challenges to your physical and emotional well-being. MDS can make you feel out of breath and exhausted even after a good night’s sleep. It can also make you have frequent infections. Treatments, such as blood transfusions or chemotherapy, can be difficult and stressful on your body. MDS is also very hard to cure, and most people with low-risk MDS have to find ways to learn to live with a cancer that never really goes away.
The most disruptive symptom for people with low-risk MDS is usually a lack of energy and low stamina, says Cecilia Arana Yi, MD, a hematologist and oncologist at the Mayo Clinic in Phoenix, AZ. This fatigue, which can be overwhelming , is partly caused by anemia (low levels of red blood cells), but other things likely drive it, too, such as inflammation. For people with high-risk MDS, she says, the main concern is their ability to endure chemotherapy and bone marrow transplants. Extreme fatigue also plays a big role in their quality of everyday life, and it can even affect survival.
No matter how serious your MDS is, it can greatly affect your quality of life. MDS is different for everyone, so ways for improving your well-being are different, depending on the nature of your condition.
Better Treatment Response Means Better Quality of Life
The most important way to improve your quality of life with MDS is to find the treatment that works best for you, Arana Yi says. “If the patient is having their best response to their treatment, they will have a better quality of life,” she says.
Doctors will check your treatment response, in part, by looking at hemoglobin levels (how well your red blood cells can carry oxygen through your body) and something called transfusion dependence. Many people with low-risk, or chronic, MDS have to get blood transfusions every so often to replenish their healthy red blood cells. That can help improve anemia and the extreme fatigue it causes. But, often once people start getting transfusions, they can become dependent on them and the time between visits starts to get shorter. This means more frequent trips to the clinic – and increased treatment costs.
Research also shows that finding a treatment that reduces the need for frequent transfusions, as well as raising hemoglobin levels, directly improves quality of life, says Arana Yi. “When a patient has improvement in their hemoglobin, they have improved energy levels and functionality,” she says. Reducing transfusion dependence also reduces the financial burden of treatment, she says. This reduced stress on your time and resources gives you more freedom to do joyful activities, return to work, and have a social life.
If a certain treatment to improve your anemia doesn’t help ease your fatigue, there are likely other factors at play. These might include inflammation, impaired heart function, or the wearing down of your body’s physical condition. Talk with your doctor to figure out what your personal path to better well-being looks like.
Lifestyle Changes
While you’re working toward your most effective MDS treatment plan, you can also make lifestyle changes designed to improve your well-being. For example, you should quit smoking (including vaping) and lower your alcohol intake. You can also try to maintain a weight that allows you to feel healthy and able to do physical activities you enjoy.
Better physical health can also make your treatments both more effective and easier on your body. “For [patients] who have high-risk MDS, it’s certainly very important to maintain a healthy lifestyle,” Arana Yi says. “[This improves] efficacy of chemotherapy, and the side effects are much less for patients living a healthy lifestyle. And being fit is also a very important factor for transplant eligibility, [as well as] dealing with less transplant complications.”
Heart disease is one of the major conditions that can happen along with low-risk MDS, she says. So it’s important to address risk factors like high blood pressure and cholesterol to improve your quality of life.
It may also help to look at alternative methods if you think they’ll improve your mental well-being. Many people with MDS have reported that meditating, for example, helps with chronic exhaustion. Other activities might include yoga, tai chi, or other nontraditional approaches – just make sure to talk with your doctor to make sure it’s safe.
Find Your Community
MDS can seriously affect some people’s mental health. Others may find it easier to deal with the condition. “Symptom burdens can fluctuate according to how well [you’re] responding to treatment, how good [your] family support is, and financial burden,” Arana Yi says.
Regardless, every person can benefit from finding support from others. It might come from friends or family members, a spiritual group, an online forum, or a counselor. Find someone you can talk with openly about your feelings, which might include anxiety, despair, anger, or frustration. Chronic illness can also change your role in your family or group of friends. It can be hard to adapt to these changes, but it’s important to find ways to feel connected to your circle of loved ones. Finding the right support can help you address your mental and emotional health, and to accept your diagnosis and move forward. It can also help you feel more empowered and motivated to try new things as you adjust to a new normal.
Support for Logistical Needs
You may feel overwhelmed by the added pressures on your daily life, which may now include organizing medical records, medications, appointments, finances, and taking part in clinical trials. You may also be traveling to and from appointments far more often than you’re used to. This can be especially hard when you don’t feel well. “Traveling from their homes to the cancer center, especially if they need to drive 2 or 3 hours regularly, certainly puts a toll on patients in general,” Arana Yi says. “They might not [have the] stamina to continue the routine for many months or even years.” This is why it’s critical for doctors to keep up a steady stream of support for people with MDS and their families, she says. Eventually, she says, the goal is to reach a level of functioning that’s as close to what you had before your diagnosis as possible.
There are also a number of nonprofits that work alongside academic centers to provide a better quality of life for people with MDS, Arana Yi says. These include some financial support groups as well as groups that offer services like transportation (for example, to and from clinical trials). Other members of your support team might also include patient navigators, social workers, and psychologists with specialization in cancer counseling, she says.
You may also ask your doctor if there are any easier options for how you get your treatment. For example, clinical trials have shown that the way doctors give drugs to treat MDS has a big impact on patients’ quality of life, Arana Yi says. For example, rather than usual treatment plans that often involve up to a week straight of meds each month, she says, some trials have allowed people to take one treatment orally every 3-4 weeks. “The patients like it and are very enthusiastic to participate in treatments that are very easy to administer,” she says.
Get Organized
As you go forward, try to find creative solutions for organizing your life and recording your thoughts and needs. This can take time, but it’s worth it to make your daily life run more smoothly. “Take things one step at a time in your regular activities of daily living,” Arana Yi says.
It’s also a good idea to keep a diary of your symptoms, she says. This can help you pay closer attention to your body and your well-being, and it can also signal your care team when there’s something they might be able to help you with.
Living Well With MDS
Doctors are putting a lot more emphasis on improving quality of life for MDS patients, Arana Yi says. For many years, health care providers have neglected quality of life as the end goal for patients with MDS and other blood cancers. “Right now, we are changing the paradigm,” she says. This includes better use of patient-reported outcomes, where someone specifically describes the impact of their treatment on their well-being, in addition to clinical concerns, such as hemoglobin levels, that have long been used as a proxy for quality of life.
“We understand that patient well-being is a priority,” Arana Yi says. “Not only how long the patient is going to live, but how well they are going to live.”
Show Sources
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SOURCES:
American Cancer Society: “Living as a Myelodysplastic Syndrome Survivor.”
Blood Cancer UK. “Myelodysplastic Syndromes (MDS) Treatment and Side Effects.”
Cancer Medicine: “Fatigue, Symptom Burden, and Health‐Related Quality of Life in Patients with Myelodysplastic Syndrome, Aplastic Anemia, and Paroxysmal Nocturnal Hemoglobinuria.”
Cecilia Arana Yi, MD, hematologist/oncologist, Mayo Clinic, Phoenix, AZ.
Cleveland Clinic: “Myelodysplastic Syndrome (Myelodysplasia).”
Clinical Journal of Oncology Nursing: “The Importance of Quality of Life for Patients Living with Myelodysplastic Syndromes.”
Critical Reviews in Oncology/Hematology: “Chronic Fatigue in Myelodysplastic Syndromes: Looking Beyond Anemia.”
Journal of Supportive Oncology: “The Impact of Myelodysplastic Syndromes on Quality of Life: Lessons Learned from 70 Voices.”
Mayo Clinic: “Myelodysplastic Syndromes.”
National Cancer Institute: “Myelodysplastic Syndromes Treatment (PDQ) – Patient Version.”
