Hi Jamie,

I am new but I thought that I would give answering some of your questions a 
try. 

If I am wrong on any count please let me know guys!


Lowering your WBC count from 19000 to 9000 is good because the move is in the 
right 
direction (eg. Down). Depending on the lab your tests are run through, 9000 may 
be 
within the normal range (Which is why I thought that my mother-in-law's results 
must 
need 000 added to their tails). This means you are probably in hematological 
remission 
(WBC is normal). But there are other, finer grades of remission. These include 
a negative 
result when  visualy screening your WBC for Ph and a negative PCR (very 
sensitive). Even 
whilst in remission you should continue to monitor your WBC count reguarly to 
make sure 
it isn't rising. 

You will need to ask your doctor why he wants to raise your Gleevec. My 
assumption is 
that he hopes to push you furthur from hematoligical remission right to PCR 
negative 
status and that he feels increasing the gleevec will do this. Our hematologist 
says that my 
mother-in-law will have to stay on gleevec indefinately, however I think some 
people who 
are PCR negative are stopping gleevec to see if they remain in remission.

Our hematologist said Gleevec will probably delay, if not prevent the 
transition into the 
accelerated/blast stages of the disease. I think it is probably too soon to 
know how 
effective gleevec will be in the long term and whether you will ever be taken 
off it.

Our hematologist also said that a BMT is the only known cure for CML. This is a 
risky 
proceedure but has the potential to completely get rid of the disease. The 
younger and 
healthier you are when you undertake the BMT the better your chances of 
surviving and of 
being cured. Waiting untill you have to other choice than a BMT would mean that 
you were 
less healthy and so the proceedure would have greater risks. So whether or not 
to have a 
BMT and at what stage to have it would have to be decided on a case by case 
basis.

My aunt (who I only met once) had CML for 11 years before she died aged 73. The 
doctor 
never even mentioned to possibility of a BMT because he thought she was too old.

It is possible that you have had CML all this time. Another option is that you 
had an 
infection in 96/97 that caused your WBC count to rise. That your WBC count 
wasn't looked 
into baack then implies that they thought it was due to an immune response 
rather than 
leukemia.

Hope this answers some of your questions.

Megan



--- 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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