Hi Peter,
Welcome to the list that no one wants to be on :)
Since a few people have written about how they came to be dx'ed, I
thought I would also tell my story too.
My symptoms started about six months or so before I was diagnosed. I
stopped exercising due to a lack of energy (I thought it was work
fatigue). I also started to get a pain in my big toe that I now
believe was gout related to high counts. After a few more months I
started to get constant headaches and mild flu like symptoms.
My job was very hectic and stressful in that I was trying to manage
30 engineers on a program that was chronically behind schedule due to
lack of resources (we needed about twice the staff). I was working
at least 60 hrs a week and most weekends. My company provides advil
in the lunchroom so to keep going I started taking advil first thing
in the morning along with coffee, which I would repeat about 3 times
during the day. Eventually I developed a constant bronchitis type
cough that wouldn't go away. Followed by nightsweats.
I went to the Dr's and was told that I had a mild fever of 101
degrees and given antibiotics which did nothing. After a month or so
I went back and told them that I really didn't feel well at all and
the antibiotics did nothing. They prescribed a different family of
antibiotics which again did nothing.
At this point I had been showing symptoms for at least 6 months and
was really not feeling well at all. The nightsweats became constant
and I went from changing a t-shirt that I slept with from once to
three times a night and finally resorted to sleeping on towels.
Eventually the sweats started to happen during the daytime.
Around this time I noticed that I had a huge "growth" in my chest
that at times slightly interfered with my breathing and was squeezing
my stomach enough to cause acid reflux even when standing. I had
thought that the "fullness" in my chest that I had been feeling was
due to gaining a bit of weight since I had stopped exercising. Once
I realized how big the "growth" in my chest was I really started to
get worried. I could push on it from the front and feel it in the
back against my spine. Horizontally it was from my left ribcage all
the way to my liver on the right side and down to my belly button.
So I finally went to my doctor a third time and told him firmly and
very worriedly that something was seriously wrong. Once he felt my
Spleen his demeanor finally changed and he became very serious and
said, "I'm not going to speculate until we've run more tests". I'm
not sure what worried me more, his initial cavalier attitude that led
to being misdiagnosed for so long or the sober response I got once he
realized that something was seriously amiss. He finally ordered a
battery of tests including a simple CBC along with CAT scans (which
weren't needed once the CBC came back).
The CBC was done at 5pm and around 9pm I got a call from the hospital
telling me that the CBC came back and I probably had leukemia as this
is the only thing that could cause a WBC of 332,000. I saw the
Oncologist the next morning and was told that I probably had CML and
not to be overly worried because, "if you have to get Leukemia, CML
is the one to get... it's a good disease". At which point I
said, "If it's so good, do you want it?". All in all though, I was
really relieved because I had a fear that the "growth" in my chest
was due to a solid tumor which by this time was enormous.
I was put on Hydrea immediately and my Onc wanted to see my WBC get
below 50,000 before starting Gleevec. I had a bit of a scare in that
I didn't respond to Hydrea initially which is one symptom of
Accelerated Phase. Eventually the Hydrea dosage was upped to 10
pills (5 grams) a day and my WBC eventually started to drop.
After reading up on CML, I pushed my Onc to start me on the high dose
Gleevec regimen (800mg). My counts cratered though and I had a lot
of edema which I think contributed to a huge gout attack involving
most of the joints in my left foot. I've been on 400mg ever since
and I'm doing well. My 6 month PCR was .005% (down from .15 at dx).
My last Fish was roughly 3 months post dx and was 15%. At this point
in time I'm pretty sure I'm in CCR but I won't know until my next
Fish in February.
I was also diagnosed with a rare triple translocation t(9;22;19)
which was an initial source of concern. It seems to have resulted in
a run-of-the-mill P210 oncogene though.
Regards,
Mark
dx 4/29/04 100% ph+
Gleevec started 5/15/04
.0051 PCR 12/04
--- In [email protected], "Peter Muraki" <[EMAIL PROTECTED]> wrote:
>
> Hi everyone,
>
> I am fairly new to the site and would like to introduce myself. I
> am a 48 year old male and I was diagnosed with CML on September 25,
> 2004. At the time of dx my wbc was at 425k. My rbc, hematocrit
and
> hemoglobin didn't register due to my high wbc.
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