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Interviews with the Experts – MDS We Don’t Often Think About Specialists Speak about MDS Subtypes Having a Lower Profile

Recurrent and Secondary MDS

Is MDS that returns after treatment(s) have successfully controlled it considered recurrent MDS?

The idea of the recurrent MDS is exactly that. If a patient’s MDS has been treated into remission or even controlled and stabilized from an earlier state and then starts to progress with symptoms,
worsening blood counts, and worsening bone marrow studies, that is recurrent MDS. Recurrent MDS can happen after supportive approaches, after medical treatments, and even after an allogeneic stem cell transplant. So, I think of recurrent MDS to mean progression or re-emergence of MDS after a period of remission or managed stability.

Is the frequency of recurrent MDS known, and is a certain type of patient more likely to experience it?

To date, this has not been well studied, but what we do understand is that the large majority of  patients with MDS who have periods of disease stability or respond to treatments will eventually recur. Most supportive care or active medical treatments are more temporary treatments and are not permanent or curative.

Is it known why recurrent MDS happens?

The simple answer is that the MDS is a progressive bone marrow failure disorder, and over time, it tends to get worse for most patients. The medical therapies we have do work for many patients, but because they are not curative, their MDS will often become resistant to the treatment. We do know a lot more about MDS than we did just 10 years ago. We understand that there is a series of genetic events (mutations) that occur in the development of MDS and their accumulation can also be associated with the progression or recurrence of the disease. So even when a treatment works
for awhile, it is possible that the responding MDS will obtain additional genetic events that render it resistant to the very same treatment. There are certainly many groups working on understanding the development of mutations in hopes of finding better treatments.

Is anything done differently when it comes to treating a recurrent case of MDS?

MDS, like all blood and bone marrow cancers, can go into remission and then recur. Once bone marrow and blood cancers recur, we don’t think of them as being curable by medical treatments. So when patients have recurrent or progressive MDS, we often explore the possibility of whether
an allogeneic stem cell transplant might be something appropriate for them. Not all patients are good candidates for a stem cell transplant, but many are.

If stem cell transplantation is the only cure for MDS, does that mean recurrent MDS cannot occur in someone who undergone a transplant and no longer has MDS symptoms?

It needs to be stressed that an allogeneic stem cell transplant is not a guaranteed cure. Not all transplants are successful. So, in fact, many patients will have recurrent MDS following a stem cell transplant. Efforts continue to try to lower the chance of MDS returning after a stem cell transplant, but still somewhere between one third and one half of patients will eventually have their MDS return even after a potentially curative stem cell transplantation. So stem cell transplants aren’t the answer for all patients or all types of MDS.

What do patients who are post-treatment most need to know about recurrent MDS? Is there anything they can do to lessen the chances of this occurring?

We don’t have really good answers here. I strongly encourage all patients and families to play active roles in monitoring their condition and frequently be seen and evaluated by their medical team. Blood cell counts have to be monitored because changes in these are often the fi rst sign of a recurring
MDS. Also, they should take the necessary steps improve and maintain their overall health. This means plenty of rest, staying physically active, and working towards a balanced and healthy diet. What we’ve found through the years is that patients who are in good overall physical health tend
to better tolerate different treatments. It is also important to maintain a very active dialog with your physician and treatment team to help manage the disease and to build a solid understanding of what is going on with your body and bone marrow so you are ready to face any changes in your bone marrow that may occur post-treatment.

What is the difference between de novo MDS and secondary MDS?

De novo MDS refers to an MDS that has arisen without an obvious or specifi c cause. Secondary MDS tend to have two general categories: the first is MDS that seem to have arisen or grown out of another bone marrow failure disorder or bone marrow cancer. For example, there are aplastic anemia patients with very low blood counts, and at times, we see a population of MDS cells that can develop. This may also occur related to other bone marrow problems like having an underlying  myeloproliferative disorder with a background of MDS cells as well.

The second defi nition relates to the MDS being related to previous cancer therapies, including chemotherapy and radiation therapy. So the language we use to describe the secondary MDS types has evolved over time into the “therapy-related MDS” and “MDS arising from or associated with another primary bone marrow disorder.” People tend to hear a bit more about the therapy-related MDS.

By what degree is secondary MDS less frequently seen than de novo MDS?

Secondary MDS makes up a small fraction of all the cases of MDS – many studies looking at the frequency suggest 5-15% of the cases are therapy-related.

What are the known risk factors for developing de novo secondary MDS?

The risk factors for therapy-related MDS really relate to the previous therapies that patients have undergone. Certain chemotherapies have a high incidence that are often associated with therapy-related MDS, and of course, radiation exposure is also felt to be a risk factor for developing MDS.

B. Douglas Smith, MD

Position / Title: 
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University
Primary Disease Area of Focus: 
  • acute myeloid leukemia (AML)
  • myelodysplastic syndromes (MDS)
  • myeloproliferative neoplasms (MPN)

B. Douglas Smith is Professor of Oncology at Johns Hopkins University School of Medicine in Baltimore, Maryland, and is on the active staff of Johns Hopkins Hospital. He earned his medical degree at the Medical College of Pennsylvania in Philadelphia, after which he completed an internship, residency, and chief residency at Strong Memorial Hospital in Rochester, New York.  At the completion of his fellowship in Oncology at Johns Hopkins University, he joined the faculty in the Division of Hematologic Malignancies. 

Dr. Smith’s research focuses on taking new and promising laboratory insights and developing them into biology-based treatment approaches for patients with AML, CML, and MDS.  He has developed collaborations with several laboratory-based physician-scientists and has help to translate differentiation-based strategies, small molecule inhibitors of signal transduction pathways (including, FLT3 mutated AML, raf kinase, ras kinase, and bcr-abl),  and immunomodulatory approaches.  Many of these trials share the common theme on studying the impact of the treatment on the leukemic stem cell in hopes of limiting these cells’ roles in treatment failure.  

Dr. Smith serves on the NCCN Guideline panels for both AML and CML and as guest editor for numerous journals including Journal of Clincal Oncology, Leukemia, Clinical Cancer Research, Leukemia Research, and others. In addition, he is an active member of American Society of Hematology, the American Society of Clinical Oncology, and the American Association for Cancer Research.

Practice Location: 
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University
401 N. Broadway
Baltimore , MD 21231
Physician Status: 
  • accepting new patients
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