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
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.