[DanL]

Meri,

Very sorry about the diagnosis. There are a lot of questions to ask the doctor, and Bailie hit on a couple of them. To answer a couple of questions that you had, the m/e of 2.4 is your myeloid to erythroid ratio, or in plain english, white blood cell to red blood cell numbers. Normal range is somewhere between 2:1 and 4:1. Offhand, I cannot tell if the 62.8 and 25.4 are the % of your blood that is basically white blood cells coming out of the marrow versus red blood cells, or if the 25.4 is a representation of your hematocrit level. If it is the latter, that would be a pretty low number as normal is around 40. That would go a long way toward explaining why you are tired.

I will try to answer your questions, but I am a patient and not a doctor. MDS as a disease basically indicates a problem with your bone marrow's ability to produce both healthy and adequate numbers of blood cells Looking at the information you provided, I think that the 5.6% number represents the percentage of blasts, or immature white blood cells that are present in your marrow, thus giving you the RAEB 1 diagnosis. I believe the normal range is less than 4%, although some doctors use an even lower number. The classification for MDS requires that you have abnormally shaped or dysplastic cells in at least one of the three blood lines - platelets, red blood cells, or white blood cells. It also requires that they rule out other potential problems, like vitamin deficiencies and other diseases that mimic MDS. One of the results from the bone marrow biopsy that tends to confirm MDS or some other blood issues is the presence of cytogenetic abnormalities, such as the addition or deletion of all or part of one or more of your chromosomes.

Questions to ask the doctor? Here are a few that I asked, but it probably does not cover the full range.

I would want to know specifically what led them to the MDS diagnosis and if there is a possibility of it being anything else.

What is the treatment plan both short-term and long-term?
What are the side effects of any treatment plan?
What are the costs and benefits of each action? Watching and waiting is a very common approach in MDS as it can move slowly or quickly.
How will any treatment affect my quality of life? There are some treatments that tend to be fairly mild, and others that can really take your energy away.
There is currently not a cure for MDS other than a bone marrow transplant, which has a lot of risk and represents a potential cure.
If they are sure it is MDS, are you eligible for bone marrow transplant? If so, when would they normally move forward to doing a transplant? Again, what are the costs and benefits of doing this?
What should you do to be best prepared for the future? - exercise, weight gain, weight loss, diet, etc.
What symptoms do you need to be worried about?
Do you need to take extra precautions with anything? If you have low platelets, you may want to stop your boxing or full contact karate lessons. If you have low white counts, you might want to avoid crowds a little more. If you have low red blood counts, when should you get checked early to see if you need a transfusion, etc.

The biggest thing to keep in mind is that if you try to take it all in at once, it can be overwhelming. You are not alone. This disease is complex and has a different course in almost every individual. My personal example is that I went in for a routine checkup and found out that I only had 26k platelets and a slightly low red blood count. Once i met with the hematologist, I was told that I had MDS. That was in 2010. My disease did not change until November of 2013, and in February 2014 I had a transplant done. There have been a lot of changes in transplants in the last several years that have improved results over what you see on the internet, so I would not spend too much time focusing on outcomes that are printed and studied, as they all represent old datasets with old technologies, medications, and practices. And most importantly, they do not take into account your specific situation.

I know this is a long response. Hopefully it gets you started off in the right direction.

Dan