[freedom99]

Hi Birgitta-A;
You picked up on the defensive doctor. yes, at the first visit we had our moments, especially when I asked for a 2nd opinion. It's also been interesting to learn from my pharmacist that when the patient asks too many questions and gets to close to the nasty side effects of certain treatments the doctor may back off because of liability issues.
Can this be true?
I do realize that 5-6 months or cycles for Vidaza is the norm for assesing the effect of this treatment. At the same time the BMB clearly showed no movement at all and neither did the blood cells. The next part of this equation is that the basic goal of these treatments is to become transfusion independant not to bring a cure to MDS. When asked if these treatments would prolong my wifes life, one doctor said no and the other said by one year from the prediction less than a year because without transfusions the patients is less at risk from the bad effects of transfusions.
Then comes the next quesion, if there is less than a year to live why not make my wife comfortable with transfusions and not subject her to treatments that do have nasty side effects and considering less than a year would have little benefit. There is no cure for MDS. If it was leukemia then there is a tested procedure to bring a bone marrow transplant that will work because the bone marrow is not chronically dysfunctional like in MDS.
30 years ago a child with leukemia had a 90% chance of dying, today the same child has a 90% chance of surviving. I find that so awesome and spurs us all onward to not be afraid or timid to demand more.
Thankyou so much for your reply and your input because it has prompted me to think more about this. Otherwise I may just give up and get my golf clubs and lose myself on the golf course.
My wife might live five years and that too I have to consider in all of this.
You do list some trials that may not be specifically for MDS in Ontario Canada but I will look them up. I need to be informed for my time with my doctor.