Hi John,
Welcome to the group. With a 486,000 WBC you're the new King of the
high WBC (any other listers out there with a higher WBC?). I was
dx'ed with a 332,000 WBC and my Spleen was enormous. Did you also
have an enlarged Spleen? Do you know what your blast percentage
was? Be aware that with such a high WBC count you'll likely be in a
slightly higher risk group so it's a good idea to have more frequent
WBC and PCRs.
Were you treated with Hydrea first before starting Gleevec? If so,
how long and at what dose? Just curious as it took me about 3 or 4
weeks with escalating Hydrea doses (finally up to 10 pills a day - 5
grams) for my WBC to get below 50,000 before my Onc would start me on
Gleevec.
Let's keep in touch, I'm also local to you here in San Diego. There
is also another Murrieta CML'er who doesn't post very often. I also
recently met Rob and Kelly who live in Solana Beach. So we are lucky
to have a lot of CML'ers in our local area.
Regards,
Mark
--- In [email protected], "slagathor65" <[EMAIL PROTECTED]> wrote:
>
> Hi all,
>
> I joined the CML message group about a week ago and I have been
> reading ever since. I've learned a great deal in a very short
time.
> Thank you. I've been able to share information with my wife and
> kids, which has helped them cope with this.
>
> I was dx with Chronic phase CML on my 39th b-day, and I'm about 3
> months into treatment. My road to dx was not an easy one, so I
> think it is worth telling.
>
> By profession, I am a software engineer and I usually work long and
> sometimes weird hours for a very large technology company. An
> excellent excuse for someone who likes to avoid doctors. I've
always
> been blessed with perfect vision. So, when a small fuzzy dark spot
> appeared in the center of my left eye field of vision, I was
> concerned enough to make an appointment with an optomitrist. It
took
> a few days to get into see the optomitrist, and by the time I got
in
> to see her I had another curious spot in my right eye as well. She
> looked at the hemorages that were at the cause of my vision
problems
> and pronounced that I indeed suffered from diabetes.
>
> Diabetic retinopathy was her official diagnosis to which I replied,
> Huh? Are you sure? Aside from my affinity for all things digital,
I
> consume and enjoy multitudes of sugar in all of its glorious
> forms...curiously,with no ill affects as would be expected of an
> undiagnosed, untreated diabetic. To make a long stroy a little
> shorter, it turns out that it would take about 10 years of diabetes
> to cause the amount of retina damage I suffered in a matter of 3
> weeks or so.
>
> I am happy to report that my vision is slowly returning to normal
> after near blindness in both eyes. Dispite a 23" monitor and a
very
> large font, everything is quite blurry, so please excuse my typos.
>
> I get the results of my BMB on Thursday, so I'm hoping for an early
> Christmas present. My blood counts are normal now. My WBC as of
> yesterday is 5.3 from 486 on Sept 15th. I've already made it
through
> the bone pain and serious cramping. I feel good about my prospects
> and I think I am a very lucky guy.
>
> I got my mediacl records last week and I noticed that my doctor did
> not order a PCR with this BMB. I'm a little concerned that my Dr.
> may not be up on the latest CML info. Has anyone else had to
second
> guess your doctor? And, what did you do about it?
>
> I hope to hear from you.
>
> Thanks,
>
> John
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