[PaulS]

Bailie is correct in pointing out the importance of getting a Bone Marrow Biopsy (BMB) - In the poster's case (Mike) we don't know when his previous BMB was and what the results are - for his sake and for those following this line I thought it might be helpful to clarify.

The BMB will provide the information necessary to derive a diagnosis and formulate a treatment plan. You can't do those things just from blood tests. Blood tests can identify a problem - but can't necessarily tell you what the problem is - or how to best treat it. Once you have a diagnosis, blood tests can help tell you if things are getting worse, staying stable, or responding to treatment - but you still need periodic BMB's to make sure there are no changes in the marrow that won't show up just from a blood test.

There are different types of MDS - with any MDS there is a risk it transforms to acute myeloid leukemia (AML) - which can be lethal. With MDS, your bone marrow is not making sufficient healthy blood cells - they are oddly shaped (dysplastic) and don't function well. One or multiple blood lines can be impacted (red, white and/or platelets). If one or multiple blood lines get very low, that in itself can be very bad - anemia can lead to heart problem, low WBC's can lead to infections, and low platelets can lead to bleeding.

There can also be cytogenetic abnormalities associated with MDS - some of these predict a poor outcome - others may predict a better response to certain drug treatments.

A best case scenario might be only one blood line is slightly low with normal cytogenetics. In such an instance, the doctor will likely watch and see what happens. A fortunate patient can live many years this way. This is how I started. My diagnosis was Refractory Anemia (low RBC) with multi-lineal dysplasia - all of my blood lines were badly shaped but only one was low. I was considered lower risk. Had only one blood line been dysplastic I would have been even lower risk. As my hemoglobin went down, I began to have more fatigue - and eventually they tried EPO, which helps the body make more RBC's. In my case it didn't work. Over time my platelets started dropping too - and we decided to try Vidaza - during this period I had BMB's starting every six months, then every three as my counts dropped. I had no blasts and normal cytogenetics - still good. Finally I started needing transfusions - I didn't respond to Vidaza and my platelets were still dropping - at that point we started talking more about transplant - as I had become a professional patient - given my age and active life style- going for transfusions every couple of weeks was not a good option. Finally, my BMB showed 8% blasts - up from zero (although they were probably less) and a troublesome cytogenetic abnormality - marrow had changed for the worse and I was declining - definitely time for transplant.

This all took about three years. If I had responded to EPO and/or Vidaza I may still not have had a transplant- had my numbers not dropped, I might have been OK for many years without any treatment - If I were in my late 60' or 70's and not especially active, maybe just getting occasional transfusions or a clinical trial would have been a reasonable choice.

If my initial biopsy had shown excess blasts, or if I had developed MDS due to previous cancer treatments - I would have been at much higher risk of developing AML and would likely have moved to transplant sooner or right away. MDS has many faces - thats why its a syndrome - all MDS is characterized by misshapen blood cells due to a bone marrow disorder - from there it can take many different forms and call for different treatments.

Its important to understand what kind of MDS one has, and what the risk of transforming to AML is - and then to develop a treatment plan. In low risk MDS, a transplant is not necessarily the best option - in high risk it may be - depending on other considerations such as age and other health issues.

In Mike's case - he needs to now (1) what the trend in his blood counts are; (2) what the BMBs have shown and what they show now - and what the trend is - are there increasing blasts - what %? Cytogenetic abnormalities? What kind? (3) is the EPO treatment working? (4) Where do you go from here - transfusion? Vidaza? Clinical trial? Transplant?

Mike, there is a lot of information to understand and digest - and you should be able to trust your hematologist/oncologist - with either knowing what is best to do - or referring to or consulting with someone who does. But there is not necessarily a "right" answer - everyone's MDS is different - as are individual's circumstances, tolerance for risk and pain.

Hope this helps -again, best wishes, Mike.
Paul