ok, I am reading my rear off…..

[Dawn]

and I seem to be more confused and caught a headache…. What I am curious about is do the MD’s start out with cheapest meds and then go for the big guns if results are not positive…. see with my dad, if he feels like “oh bother”… I and my mom are afraid he will tell the MD that he “isn’t doing a damn thing” for him and quit all treatment. One thing my dad hates is being kept in the dark, like he told the doctor and I quote “I’m not a mushroom”…. tell me what is protocol etc. Heck, I am just as frustrated with these MDs as he is….. thanks for letting me vent!

[Terri]

Dawn, Our Hemotologist does not keep us in the dark about anything, He pulls no punches. He answers all our questions honestly. One night Many many months ago Bob was running temp and I could not get it down it was Midnight and after. I called the Doc three times and three times he called back. Sounded like I kept waking him up but that is what is so great about him. He makes time for his patients.

[Suzanne]

Dawn, I have not had the experience of the Dr’s in my center of excellence doing what is cheap. The problem is that they do not know what will work. People react differently. My Dr’s have done what they think might work keeping in mind my wish to maintain quality of life. Until a few months ago there were no treatments approved for MDS. Now there is Vidaza and hopfully both revlimid and Zarnestra will be approved soon.But they don’t work for everybody and they probably don’t know why yet. The only place I saw a protocaol was when I had Induction chemo for AML. Even then it seems to be done slightly differently in different places. everything else I have done has been a drug trial. suzanne

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