Understanding Myelodysplastic Syndrome
- John York, known for his role as Malcolm “Mac” Scorpio on “General Hospital,” has opened up about being diagnosed with two blood and bone marrow disorders—myelodysplastic syndromes (MDS) and multiple smoldering myeloma.
- Following his diagnoses, he’s taking an approximate three to four month “hiatus” but insists he’ll get back to work soon. He’s currently looking for a donor to get a blood stem cell transplant.
- 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, SurvivorNet experts explain.
- Multiple smoldering myeloma is when people have “low levels of myeloma cells or m-protein,” as per the Memorial Sloan Kettering Cancer Center. It’s a precancerous condition that can develop into myeloma.
The 64-year-old soap opera star, who has acted on “General Hospital” since 1991, opened up about being diagnosed with two blood and bone marrow disorders—myelodysplastic syndromes (MDS) and multiple smoldering myeloma.

MDS, according to the National Cancer Institute is, is a “group of cancers in which immature blood cells in the bone marrow do not mature or become healthy blood cells.”
Multiple smoldering myeloma is when people have “low levels of myeloma cells or m-protein,” as per the Memorial Sloan Kettering Cancer Center. It’s a precancerous condition that can develop into myeloma.
York explained, “Over the past many months, I’ve had three bone marrow biopsies. Many chemo treatments. I have another one coming up in a couple of weeks. And I’m closing in on a blood stem cell transplant.”
Hey gang, here’s the update, Check out @bethematch if you want to support https://t.co/AxA8xTbDcq pic.twitter.com/ZBinOwIrpd
— John J York (@JohnJYork) September 13, 2023
“I’ve been working with some wonderful people at Be The Match to find a potential donor on their registry,” the Illinois native continued.
“If it’s possible and you would consider being a donor, joining their registry, for not just me but thousands and thousands of other people who are in need of a donor, go to bethematch.org/matchformac.”
York expressed how grateful he’s been for all the support he’s received throughout his life, adding, “This isn’t goodbye, it’s just so long.”
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He noted that his “break” will last approximately three to four months. However, he insists he’ll return soon and will keep everyone updated along the way.
“Thanks a lot. Check out Be the Match. Do whatever you can,” he concluded. “And thanks for your patience, thanks for your time, thanks for your prayers. I’ll keep you updated. Talk to you soon.”
York, who resides in Tennessee and is married to his wife Vickie Manners, whom he shares a daughter with, has also acted in “Clueless,” “21 Jump Street,” “Murder, She Wrote,” and “Wizards of Waverley Place.”
What is Myelodysplastic Syndrome (MDS)?
White blood cells, red blood cells, and platelets develop from specialized stem cells in your bone marrow, the spongy tissue inside some of your bones, such as your hip and thighbone.
Because these specialized stem cells are the blueprint for your blood cells over your entire lifespan, any error that occurs either through normal aging or due to certain stressors (such as prior chemotherapy or radiation) can lead to abnormal development and/or function of the stem cells. Accumulation of these errors can cause cancer.
Acute leukemia is the most aggressive type of blood cancer, but there are several other blood cancers that can develop into an acute leukemia. The most common cancer that can evolve into acute myelogenous leukemia (AML) is called myelodysplastic syndrome (MDS).
Dr. Jun Choi, a Hematologist/Oncologist at NYU Langone’s Perlmutter Cancer Center, Explains MDS
Dr. Jun Choi, a hematologist/oncologist at NYU Langone’s Perlmutter Cancer Center, previously spoke with SurvivorNet about MDS, saying, “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.”
RELATED: How Does A Bone Marrow Transplant Treat MDS?
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, SurvivorNet experts explain.
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, told SurvivorNet in an earlier interview. “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 explains. “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.
Treating MDS: What Options Does John York Have?
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.
Dr. Eytan Stein, Chief of the Leukemia Service at Memorial Sloan Kettering Cancer Center, Explains How Doctors Determine When/How To Treat MDS
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.
RELATED: ‘I Want to Thrive’: Breast Cancer and MDS Survivor Rob Roberts Gives Post-Treatment Update
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.
The Treatment Approach
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.”
RELATED: Stem Cell Transplants – Understanding the Risks
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.
For patients seeking new approaches to treating MDS, and those who have not responded to treatments, clinical trials may be an option.
RELATED: Check out SurvivorNet’s Clinical Trial Finder
“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.”
Contributing: SurvivorNet Staff
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