Understanding MDS (myelodysplastic syndrome)
- MDS is a type of cancer where blood-forming cells in the bone marrow become abnormal and have trouble creating new cells.
- To determine the best treatment approach, your doctor will need to determine what type of MDS you have as well as your prognostic score.
- The only curative option for this type of cancer is a bone marrow transplant, but since this is an intense treatment, not every patient can tolerate it.
- There are several other treatment options, like chemotherapies, that can lead to better quality of life.
“The type of symptoms would be reflected by which of the blood lines in most adversely affected,” Dr. Lewis Silverman, director of the resource center for MDS at Mt Sinai’s Tisch Cancer Institute, tells SurvivorNet. “Anemia is probably the most common presenting form of MDS patients.”Read More
- Lack of energy
- Exercise intolerance
“MDS is usually picked up for one of two reasons,” Dr. Silverman explains. “People have symptoms and seek medical attention or, there is a percentage of patients that just go in for a routine physical and are found to have low blood counts.”
There are several different types of MDS and they are categorized using different factors. There is an internationally-recognized scoring system that your doctor will use to determine your prognosis and to recommend the best treatment options.
Dr. Jun Choi, a hematologist-oncologist at NYU Langone’s Perlmutter Cancer Center, tells SurvivorNet that it’s also important to consider genetic sequencing when deciding on treatment.
“For MDS, genetic sequencing is becoming more and more important,” Dr. Choi says. “That is because it determines your prognosis and it determines what kind of treatment you’ll be getting. These days, genetic sequencing is usually sent in your bone marrow sample or in your blood sample, but if you are in a small community center, you [may want] to ask your doctor whether genetic sequencing is necessary and whether that can be done at a larger hospital.”
Dr. Choi explains that for MDS, there are many different genetic mutations that lead to different types of the disease. “When there is a particular mutation that is known to cause more aggressive MDS, then doctors can consider treating you in a little more aggressive way than when you don’t have that mutation,” he says.
For some people who have less aggressive, low-risk MDS — they may have no symptoms or a blood count that has not been affected significantly — they may be able to avoid treatment altogether for a time and simply get blood tests every few months to check if the disease is progressing.
However, when a patient does present with disease that requires treatment, there are several options. Deciding which treatment to go with depends on several factors.
The Standard of Care
Dr. Choi explains that the treatment approach for MDS depends on several factors:
- The type of MDS
- The prognostic score
- A person’s age & overall health
“The only curative option [for] MDS these days is a bone marrow transplant,” Dr. Choi explains. “Now, bone marrow transplant is one of the more intense therapies for MDS, so you really want to be able to tolerate this therapy. That is why this therapy is reserved mostly for younger patients and [those] who do not have other medical conditions.”
However, the majority of patients diagnosed with MDS are older, so a stem cell transplant may not be an option. While the disease may not be cured, it can be managed.
“One of the goals for patients with higher risk disease is to extend survival and manage symptoms,” Dr. Silverman explains. “One of the treatments that we utilize are drugs called hypomethylating agents (HMAs). These drugs convert disease from an acute type of disease … the drugs are able to convert disease into a more chronic type of disease, which patients can live with while they’re getting treatment.” Dr. Silverman added that patients are often able to go along with their daily lives, aside from the time spent getting treatments.
Drugs such as azacitidine (Vidaza) or decitabine (Dacogen) may be suggested for people whose MDS is considered lower risk. These drugs have the potential to improve blood counts, quality of life, and could help people live longer.
There are different approaches for people who have different types of the disease. For example, if a person has the del(5q) type of MDS, a drug called lenalidomide (Revlimid) may be used.
MDS may be treated with the following approaches:
- Disease modifying therapies, such as chemotherapy or targeted therapy
- Supportive care, which could include blood transfusions or blood-stimulating medicines
- Bone marrow transplants
- A combination of the above approaches
There is also the option to participate in clinical trials, which test out new drugs that are in the experimental phase and have not yet received FDA approval.
A Tailored Approach
The type of treatment a person is given, and how often they need to undergo that treatment, depends largely on their individual disease factors.
“The most common symptom of MDS is anemia or reduced red blood cells,” Dr. Choi explains. “And some patients require frequent blood transfusions to increase red blood cell level to a particular cutoff. That is because when your red blood cell is low, you can have symptoms such as fatigue, shortness of breath, and dizziness.
“Red blood cells are responsible for carrying oxygen around your body and when they’re low, you can have these symptoms … As the disease progresses, these requirements of transfusion amounts or frequency can increase.” Dr. Choi adds that at this point, another drug such as a chemotherapy may be added to try to reduce symptoms and how often transfusions are needed.
Monitoring for MDS
Some forms of MDS have no known cause, while other forms of the disease occur after treatment for another cancer. Dr. Choi pointed out that the disease occurs most often in people who are around the 60-70 age range. People who underwent certain chemotherapy treatments to treat a different type of cancer are more at risk for developing MDS later in life as well, though it’s important to keep in mind that only a small percentage of people who were treated with these drugs will go onto develop MDS.
Some of the drugs that can lead to MDS include:
- Mechlorethamine (nitrogen mustard)
A person’s risk will depend on several factors like dosage and what other treatments these drugs were combined with. People who have had stem cell transplants may also develop MDS because of the high doses of chemo they need to receive as part of the procedure. However, Dr. Silverman stresses that the risk of MDS should not deter anyone from seeking cancer treatment if they need it.
“If somebody has a cancer, worrying about getting an MDS down the road should be the least of their concerns — and the likelihood of developing MDS is small,” he adds.
Still, it can be helpful to be aware of symptoms. Dr. Choi explains that symptoms of MDS — like fatigue and dizziness — often have to do with blood cells not completing their regular jobs.
“The most common symptom [of MDS] is fatigue, and you can have weight loss. It also depends on what kind of blood cells are low,” Dr. Choi says.
“If you have low white blood cells, you are more susceptible to infection. And people with anemia, which is low red blood cells … can have significant shortness of breath and dizziness. That’s because red blood cells are responsible for carrying oxygen around your body. When you have low platelets, you can have easy bleeding and easy bruising because platelets are responsible for coagulation and stopping bleeding.”
Clinical Trials for MDS
For patients seeking new approaches to treating MDS, and those who have not responded to treatments, clinical trials may be an option.
“So many universities, such as our own institution — NYU Langone — offer many clinical trials to target particular cancers,” Dr. Choi explains. “In my specialty, we have many different trials to treat patients with difficultly, treat patients with leukemias and MDS — and we have options for those who have never [undergone] any treatments all the way to someone who has seen a number of treatments … These options are ideal for someone who wants to really look for a new drug that has yet to be proven, but seems to be pretty promising in the future.”