Understanding Myelodysplastic Syndrome
- Elle Crofton, from Pennsylvania, was diagnosed at 25 with Myelodysplastic syndrome (MDS), a rare blood cancer causing low blood cell counts and severe fatigue. After treatment, which included a stem cell transplant, she is now 37, healthy, and sharing her story to raise awareness and discuss fertility preservation—as her decision to freeze her eggs before undergoing the transplant made it possible for her to have a child earlier this year.
- Myelodysplastic syndrome is a group of bone marrow disorders that affect blood cell production. It is considered a type of blood cancer. When your body does not produce enough white blood cells, red blood cells or platelets, you can experience symptoms such as increased infections, anemia and blood clotting disorders. Myelodysplastic syndrome can evolve into acute leukemia, the most aggressive type of blood cancer. This happens in about 1 in 3 cases.
- Treatment for myelodysplastic syndrome (MDS) varies since there are many different forms of this disease. When doctors are determining how to treat a patient, they will initially look at what type of blood cells are affected, how the complete blood count (CBC) looks, how genetics are involved, and the patient’s overall health.
- Some patients with MDS may only need to have their blood counts regularly monitored and may not need treatment initially. For more severe cases, like Crofton’s, treatment approaches may include blood transfusions, chemotherapy or targeted therapy, bone marrow transplant, or a combination of approaches.
MDS is a bone marrow disorder that causes the production of defective and insufficient blood cells, leading to low blood counts and symptoms such as frequent infections, fatigue, and shortness of breath.
Read MoreAt 36, she resumed her IVF journey, opting to use donor sperm. The process produced three embryos, but just one was viable—and her son, Harry, was born on January 29, 2026.
Her story comes amid National Infertility Awareness Week (NIAW). According to the Associated Society for Reproductive Medicine (ASRM), The World Health Organization estimates that approximately 1 in 6 people are affected by infertility across the globe.
Fertility struggles are a genuine concern among cancer patients, as certain cancer treatments can cause infertility. Fortunately, in many cases, efforts can be made before beginning treatment to help preserve fertility.
Patients planning to undergo cancer treatment should speak with their doctor about preserving fertility if they want the option of having children in the future. Freezing eggs, sperm, or embryos is commonly used, but there are other possible approaches as well.
Crofton tells TODAY, “Your doctors are there to make sure that you are healthy and surviving and alive … but you want to make sure that you, when you come out the other end, that you’ve set yourself up for the future that you want.”
Reflecting on her initial diagnosis in in May 2013, Crofton said she sought a second opinion at the University of Texas MD Anderson Cancer Center after her doctor in Pennsylvania suspected she had MDS.
“I’m just overworking myself. I need to calm down,” said Crofton, who worked at a pre-school at the time and went to the gym often, referring to her unusual fatigue.
“Some mornings, I would just not wake up to my alarm. I would come home from working out, take a shower and just fall asleep for three hours.”
When Crofton’s diagnosis was confirmed, she realized she “had about half of the amount of red blood cells that you’re supposed to live on.”
She then began taking a medication called Revlimid (generic name lenalidomide), which gave her time before needing a stem cell transplant.
Revlimid is part of a drug class known as immunomodulating drugs and seems to work best in MDS patients with a certain genetic abnormality, though it has had some success treating MDS patients without it as well, according to the American Cancer Society (ACS). Reblozyl is a type of red blood cell maturation agent and can help the body to create more healthy red blood cells.
Treating Anemia in MDS: Revlimid vs. Reblozyl
When the medication she was taking stopped working for her about a year and a half later, that’s when she understood she’d truly need a stem cell transplant, which she underwent in May 2015.
Expert Resources On Myelodysplastic Syndrome (MDS)
- What’s the Standard Treatment for MDS (Myelodysplastic Syndrome)?
- How A Blood Transfusion Can Help Treat The Symptoms of MDS
- How Does A Bone Marrow Transplant Treat MDS?
- Making Incredible Progress in Treating MDS: Bristol Myers Squibb SVP Noah Berkowitz on Improving Quality of Life
- Managing the Emotional Toll of Living With Myelodysplastic Syndrome (MDS)
It’s important to note that while stem cell transplants can be potentially curative, they are not an option for all patients.
How Does A Bone Marrow Transplant Treat MDS?
“The treatments that we have right now still are not curative except for stem cell transplants, and those are major undertakings, and not every individual is a great candidate for that,” Dr. Lewis Silverman, director of the resource center for MDS at Mt. Sinai’s Tisch Cancer Institute, previously told SurvivorNet.
“We do evaluate the patients for stem cell transplants and transplant those [eligible] patients.” Factors such as the patient’s age and overall health need to be considered when determining if a stem cell transplant should be done.”
Crofton is currently in good health and remains under monitoring to check for any recurrence of her condition or potential complications following the stem cell transplant.
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Understanding MDS
Dr. Jun Choi, a hematologist/oncologist at NYU Langone’s Perlmutter Cancer Center, explains MDS to Survivornet, “When there is a dysfunction in the bone marrow, there is a production of defective blood cells, and there is also a deep decrease in the production of blood cells. So the consequence of that is low blood cells in your bloodstream
“MDS affects all types of blood cells and ultimately it is a considered a bone marrow failure disorder.”
MDS is a variety of bone marrow disorders that look similar: under a microscope, the bone marrow cells look like cancer, and genetically may have alterations that are known to cause MDS. Symptoms of MDS include frequent infections, fatigue or shortness of breath (anemia), or easy bleeding/bruising. These symptoms are the result of the bone marrow not being able to produce enough healthy, functional blood cells.
Because some patients with MDS will have their cancer evolve into AML, it is important for your doctor to monitor risk. There are several ways to do do this, but doctors will look at:
- A patient’s blood counts
- The amount of cancer in the bone marrow
- The presence of certain genetic abnormalities on the cancer cells
“For the workup of MDS, you start with a regular blood check and you confirm that someone has low blood cells,” Dr. Choi explains. “And then when the suspicion for MDS is high, the ultimate gold standard diagnostic test is a bone marrow biopsy. And that is because the bone marrow is where all the blood cells are made. And we want to confirm that there is abnormal cells in the bone marrow.”
A bone marrow biopsy can confirm MDS. It can also provide other details on your cancer.
“The biopsy has to be reviewed by the pathologist to see if there is what’s called dysplasia in the blood cells. Dysplasia is abnormal-looking young blood cells that we also want to send the bone marrow sample to assess for any genetic changes,” Dr. Choi says.
“And whether there is any abnormal changes in your chromosome, in the blood cells inside the bone marrow. And based on those, we can categorize the MDS into different categories, different types, and ultimately they can also help us guide the treatments and the prognosis as well.”
How is MDS Categorized?
Determining treatment will depend on several factors, as your doctor will assess blood counts, bone marrow, the number of immature cells in marrow, and how cells mature.
“You can think of MDS as a spectrum of diseases,” Dr. Lewis Silverman, director of the resource center for MDS at Mt. Sinai’s Tisch Cancer Institute, tells SurvivorNet. “On the one hand, there are patients who, when they present, are categorized as having very low-risk disease, and then it ranges up through middle categories to very high-risk disease. MDS patients can be categorized anywhere along that spectrum of disease.”
For low risk MDS, no treatment may be necessary, but many patients will need medications or blood transfusions to help improve their blood counts. (A blood transfusion is a procedure in which donated blood or blood components are given to you through an intravenous line.)
For high risk MDS, more aggressive therapy is needed most commonly this will be a “hypomethylating agent” (HMA). These medications work by disrupting unregulated cancer cell growth. A stem cell transplant can also be considered, which is potentially curative. Hematopoietic stem-cell transplantation (HSCT) is a medical procedure that consists of infusing healthy stem cells (from a matched related or unrelated donor) after a short course of chemotherapy or radiotherapy, or both.
While stem cell transplants can be potentially curative, they are not an option for all patients.
“The treatments that we have right now still are not curative except for stem cell transplants, and those are major undertakings, and not every individual is a great candidate for that,” Dr. Silverman says. “We do evaluate the patients for stem cell transplants and transplant those [eligible] patients.” Factors such as the patient’s age and overall health need to be considered when determining if a stem cell transplant should be done.
How Is MDS Treated?
MDS is treated based on symptoms and the risk for it to evolve into AML. Doctors gather information about circulating blood counts, bone marrow findings, and the presence of genetic mutations to determine risk.
For lower-risk MDS:
- Many people may only need to monitor blood counts every few months without needing specific treatment.
- Some people may be started on medications to stimulate RBC or platelet production.
- Some people may need a blood transfusion every few months.
- Specific types of MDS may benefit from lenalidomide (Revlimid), luspatercept (Reblozyl), or immunosuppressing medications.
For higher-risk MDS:
- Treatment usually starts with a class of drugs known as hypomethylating agents (HMAs). HMAs include intravenous or oral forms of azacitidine (Vidayza, Onureg) or decitabine (Dacogen, Inqovi).
- Other treatments are possible depending on the presence of certain mutations or if the disease is more aggressive.
- Some patients may require more frequent transfusions, from every few weeks to even several times a week.
- Some patients may be eligible for a bone marrow transplant.
- Many patients should consider enrolling in a clinical trial if available.
Because the diagnosis, prognosis, and treatment plans offered depend on appropriate testing, it is important to talk to your doctor about whether molecular testing on your bone marrow biopsy has been conducted. This may also provide opportunities for clinical trials in the future. Additionally, we recommend asking your doctor if referring for a bone marrow transplant is right for you. Although MDS generally affects older adults, there is no “age limit” for doctors to consider a potentially curative transplant, as long as you are otherwise healthy.
Making Treatment Decisions for Myelodysplastic Syndrome (MDS)
IVF’s Role In Family Planning For Cancer Patients
Fertility struggles are a genuine concern among cancer patients, as certain cancer treatments can cause infertility. Fortunately, in many cases, efforts can be made before beginning treatment to help preserve fertility.
Even without a diagnosis, many couples, at one point or another, experience infertility. The Centers for Disease Control and Prevention (CDC) says within the U.S., “about one in five” married women between the ages of 15 to 49 with no prior births are unable to get pregnant after trying for a year. Additionally, “one in four” of women in this group struggle to get pregnant or carry the pregnancy to term.
WATCH: How does chemotherapy affect fertility?
Infertility can be a side effect of cancer treatment due to how it impacts the body. Various cancer treatments, including chemotherapy and radiation, can affect both men’s and women’s fertility. Before undergoing cancer treatment, patients should speak to their doctors about fertility preservation if they wish to have a family in the future.
Patients should also recognize that infertility is a problem that affects so many people hoping to be parents, and nothing to be ashamed of.
The American Psychological Association said in its Monitor on Psychology Magazine, “A diagnosis of infertility — the inability to get pregnant after a year or more of trying — can lead to depression, anxiety, and other psychological problems, trigger feelings of shame and failure to live up to traditional gender expectations and strain relationships.”
Among men, infertility can “cut into a man’s feelings of masculinity” and “can lead to issues of shame and embarrassment,” psychologist William D. Petok told the outlet.
Cancer’s Impact on Male Fertility
Cancer treatments like chemotherapy can damage sperm in men, and hormone therapy can decrease sperm production, according to the National Cancer Institute. Radiation treatment can also lead to lower sperm count and testosterone levels, impacting fertility.
Possible side effects of cancer treatment should be discussed with your doctor before starting treatment. Men may have the option to store their sperm in a sperm bank before treatment to preserve their fertility.
RELATED: Don’t Be Ashamed – The VA Has Treatment To Help Deal With Incontinence After Prostate Cancer Surgery
This sperm can then be used later as part of in vitro fertilization (IVF).
WATCH: Dr. Terri Woodard explains fertility preservation options patients have when going through cancer treatment.
Cancer Treatment’s Impact on Fertility in Women
Just as cancer treatment can impact men’s fertility, women may also be affected. Some types of chemotherapy can destroy eggs in your ovaries. This can make it impossible or difficult to get pregnant later. Whether or not chemotherapy makes you infertile depends on the type of drug and your age since your egg supply decreases with age.
“The risk is greater the older you are,” reproductive endocrinologist Dr. Jaime Knopman told SurvivorNet. “If you’re 39 and you get chemo that’s toxic to the ovaries, it’s most likely to make you menopausal. But, if you’re 29, your ovaries may recover because they have a higher baseline supply,” Dr. Knopman continued.
Radiation to the pelvis can also destroy eggs. It can damage the uterus, too.
Surgery to your ovaries or uterus can hurt fertility as well.
Meanwhile, endocrine or hormone therapy may block or suppress essential fertility hormones and may prevent a woman from getting pregnant. This infertility may be temporary or permanent, depending on the type and length of treatment.
If you are having a treatment that includes infertility as a possible side effect, your doctor won’t be able to tell you for sure whether you will be impacted. That’s why you should discuss your options for fertility preservation before starting treatment.
Research shows that women who have fertility preserved before breast cancer treatment are more than twice as likely to give birth after treatment than those who don’t take fertility-preserving measures.
Most women who preserve their fertility before cancer treatment do so by freezing their eggs or embryos.
After you finish your cancer treatment, a doctor who specializes in reproductive medicine can implant one or more embryos in your uterus or the uterus of a surrogate with the hope that it will result in pregnancy.
If you freeze eggs only before treatment, a fertility specialist can use sperm and your eggs to create embryos in vitro and transfer them to your uterus or a surrogate later on.
When freezing eggs or embryos is not an option, doctors may try these approaches:
- Ovarian tissue freezing is an experimental approach for girls who haven’t yet reached puberty and don’t have mature eggs or for women who must begin treatment right away and don’t have time to harvest eggs.
- Ovarian suppression prevents the eggs from maturing so they cannot be damaged during treatment.
- Ovarian transposition, for women getting radiation to the pelvis, moves the ovaries out of the line of treatment.
In addition to preserving eggs or embryos, research has shown that women with early-stage hormone-receptor (HR) positive breast cancer were able to safely pause endocrine therapy (ET) to try to get pregnant, and they did not have worse short-term recurrence rates than people who did not stop endocrine treatment.
Questions To Ask Your Doctor
If you’re wondering how your cancer treatment may affect your fertility and what options are available to you, the National Cancer Institute recommends asking your doctor these questions:
- Could my treatment lead to infertility?
- Are there other recommended cancer treatments that might not cause fertility problems?
- Which fertility preservation options would you advise for me?
- What fertility preservation options are available at this hospital? At a fertility clinic?
- Would you recommend a fertility specialist (such as a reproductive endocrinologist) I could talk with to learn more?
- What are the chances that my fertility will return after treatment?
Contributing: SurvivorNet Staff
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