[PaulS]

Hi Bossy -

Try not to get too gloomy - I have a bad habit of worrying and focusing on the negative (to the extent my doctor makes fun of me for it) but its really not helpful. You have a lot of reasons to be hopeful and I'm sure you and your husband will be happy for many years to come. Of course you deserve to be happy. Sometimes a life threatening disease helps focus you on how blessed you really are.

You've mentioned low platelets - but also other low blood counts - how low is the hemoglobin and WBC? If he feels good and the counts are low, watch and wait (or watch and worry) may be OK - but I'm concerned about the blasts and the lack of a definitive diagnosis. The doctor in Vancouver didn't seem like he had expertise in blood cancers in general or MDS in particular - unless a I'm missing something. The local hematologist may be a good place to start, especially if you feel comfortable with him and he has access to other specialists if he doesn't have an answer for something. If you can figure it out a consult with an MDS expert could be very helpful.

All that said, I'm not sure how good the BMB results are - finding a good pathologist to interpret the results can be very important - its a difficult skill. I've had dry taps and they seem able to identify dysplasic cells, although less reliable at counting blasts. Also important is doing cytogenetic studies - if they haven't done that you should find out why. Don't know if you looked at the link to the video presentation I sent, but there is a lot of information in it - a good place to start.

Seems to me you need to try and get a more definitive diagnosis - perhaps you can have the BMB samples sent to Toronto or another MDS center of excellence. I Don't know if its possible, but the Hutchison Center in Seattle is as good as it gets, if you can get a consult there. If the pathologist was local you may want to find a way to get another BMB and/or analyses by a pathologist more experienced with MDS.

They used to call MDS smoldering leukemia or pre-leukemia - but that isn't really how its looked at now - its a somewhat rare and very variable disease. It doesn't always lead to leukemia - but its good to treat it if there is a high risk that it will. All the best,
paul