Hi Peter,

Welcome to the group that none of us wanted to join.  Your diagnosis 
story isn't really that strange except that your WBC is one of the 
higher ones.  Most are in the 200-300 range.

I think the majority of us were diagnosed "by accident" and as a 
result surprised our doctors.  Here's my story.

I had been having night sweats so I went to my GP.  His answer 
was "some people are sweatier than others".  I was relieved to know 
that it wasn't anything that would require any testing because I'm 
not fond of being poked or prodded.  I knew it couldn't be menopause 
because I was only in my late 20's.  Well months passed and 
eventually years and it just got worse.

By this point I was sleeping with a bath towel and soaking through 
it every night.  All my friends were older and some were going 
through menopause and said that even then, they didn't sweat THAT 
much.  I thought something had to be wrong because it got to the 
point where the bath towel was so wet that it wouldn't dry for the 
next night and I had to go out and buy a whole new set of bath 
towels and more sheets for the bed because I couldn't keep up with 
the laundry everyday.  I kid you not, the towels were so wet, I 
could actually wring them out in the morning.

I got on the trusty internet and looked up night sweats and found 
leukemia everywhere.  That made me panic so I found a new GP and 
made an apointment.  By this time I had also moved to a new province 
since the last time I had mentioned the night sweats to a doctor(I'm 
Canadian).  I saw this new doctor and mentioned how bad I was 
sweating and that I had seen leukemia on the internet.  He checked 
me over and reassured me that it couldn't be leukemia because I 
would have an enlarged spleen, swollen lymph nodes, extremem fatigue 
etc.... I had no other symptoms.  Well I was tired, but who isn't 
right?  Other than that, I was carrying on a normal, busy life... 
finishing up my University degree that I had posponed earlier in 
life, volunteering for a number of organizations and doing what 
everyone else does in the prime of their life.

Nevertheless, he said I'll send you for a CBC because they're a good 
idea to have once in a while anyway.  Well I sat on the requisition 
for months because he had reassured me enough to think that there 
was no hurry.  Finally I did go (on a Monday) and got a call two 
days later (on the Wednesday) telling me to come in and discuss my 
blood results.  He told me how shocked he was to see my WBC at 85 
and my platelets in the millions and that he had talked to a 
hematologist who was fairly sure I had CML.  I had an apointment the 
next morning (Thursday) with the hematologist where I had a BMB and 
started Hydrea.  I was never hospitalized.

Before I started Gleevec, my hematologist sent me to another 
hematologist who he felt would be better suited to treat me because 
he had more experience in CML.  This new doctor suggested that I 
have a BMT because of my age (I was 31 at this point) but I insisted 
on trying Gleevec first.  I had done a month of research on the net 
and was confident that I was making the right choice although I 
don't think he appreciated that I had a mind of my own.  The funny 
thing was that Gleevec had just been approved in Canada a few months 
earlier so had I gone for my blood test when I first got the 
requisition, who knows what treatment I might have endded up with.

So to make a long story short.  I started 400mg of Gleevec and 
reached CCR after 5 months.  After 9 months I was PCR negative.  

After a year with this doctor who kept telling me that no matter how 
well I did with Gleevec, I'd still eventually need a transplant, I 
went back to the first hematologist I had seen in the beginning who 
I got along better with and I've been with him ever since.  

It's now been 3 years and I continue to do well.

Take care,
Tracey
dx Jan 2002
400mg Gleevec Feb 2002
CCR July 2002
PCR neg Nov 2002











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