Hi Jaime,

I have had CML since 7/2003.

Your early response to get the WBC down to the "9s" is good news!

Some other comments:

Dr Ostrow - sorry to hear he seems cranky - we are all human.  But 
more importantly that maybe his problem - dont make it yours.  Ask 
questions till you are blue in the face.  First outcome of this is 
that you will become informed and the second is you will size up 
your Doctor.  Most oncologists are very bright and caring people.  
Most oncologists are not CML experts.  You need to have an expert in 
your corner.  It does not need to be an every day expert but 
somebody who will help you answer questions that your every day 
oncologist cant.  So if possbile search around.  Even call Novartis 
to see if they have Drs in your area who are paritcipating in 
studies/trials.

Also - have you been baselined through a bone marrow biospy?  This 
is important - I have to belive the answer is yes.  Get the results -
 should include FISH.  From there you know your baseline.  Response 
is measured in (from what I know) 3 levels.  WBC,  Cellular and 
Molecular.   WBC readings monitor the first level.  A cellular 
response, some where between 20 and 200 cells are inspected for 
the "philadelphia Chromosone" and then PCR is done at the lowest 
level of monitoring to fins moecular fingerpirnts of the bcr/abl 
translocation.   So there are 3 levels of response to shoot for.  
But, even when you (I hope you do) reach the point of being 
undectable in a PCR test - remember that the bad cells can still be 
lurking and if you bounce up and down a bit in the PCR results over 
time - dont get too upset - just stay informed!

So 2 disclaimers:
a) I am no expert and I am working off my own limited understanding 
and perspective!

b) I am a poor speller!

Be good, 

Chris


--- In [email protected], [EMAIL PROTECTED] wrote:
>
> Hello To everyone,
>         I hope all had a wonderful  Thanksgiving! 
> The day after thanksgiving I had gone to my scheduled appointment 
with Dr  
> Ostrow, whom lately seems rather crabby. I didnt ask him any 
questions as I just 
>  wanted to get out of there. He was supposed to call me later in 
the eveing 
> to  confirm my sisters HLA blood type results to see if she would 
be a possible 
>  future donor for a BMT. When i first started going to Dr Ostrow 
my WBC were 
> in  the 19,000's and over the past few months have gone down into 
the 9,000's 
> which  is good correct? My RBC is normal. Does this mean Im in 
remission? If 
> so how  will I know if I'll stay in range?And why would my doctor 
want to raise 
> the  Gleevec from 400 mg to 6-800 mg? Will my Dr eventually take 
me off the  
> Gleevec to see if my WBC stay where they need to be? 
> Also being on Gleevec, will this keep me out of the Accelerated 
and Blast  
> phase? Now that my WBC is in the 9,000's would it make any sence 
to concider a  
> BMT?Before my last appointment to sho the 9,000's range my Dr as 
well as a  
> second opinion Dr stated a BMT is better to do when young rather 
than later in  
> life, though also said there would be no rush at this time to do a 
BMT that a  
> BMT would be something I needed to do more research on and that 
they wouldnt  
> push me into something I wasnt comfortable with. Also even though 
I was 
> recently  dx with cml. My WBC was in the 26,000's range in 96 or 
97, though when I 
> went to  Dr Ostrow in August this year it was in the 19,000's, 1. 
Would I have 
> had the  CML all this time? 2. How could my WBC drop since 96 or 
97 not being 
> on any  medication? Sorry for all the questions, Im just rather 
confused.
>  
> Jamie from NY
> Dx August 2005
> Gleevec 400 mg
>









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