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RE: 3 chromosomes a problem???

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Hi Cam,

My husband was also diagnosed with 3 chromosomes. He has chromos - 1,

9 & 22 involved with a deletion (whatever that means) We were also

told it means a poorer prognosis and poorer response to treatment. I

know nothing of what this means nor did his hematologist give much

insight except to say its very rare. I appreciate hearing of someone

else who has the unfortunate results as such - but would love to hear

of anything you find or hear of. We are seeking a second opinion right

now. My husband went from not having or feeling any symptoms to 1

month later feeling very bad. He now feels faint after exercise and is

sleeping an awful lot. He begins Gleevec today - we will see with his

bloodwork in the next 2 weeks- how things are going.

Please let me know if you learn more.

Shalyn

> Hi everyone,

>

> When I was first diagnosed they told me I had the philidelpia

> chromosome as well as an

> abnormality on an additional chromosome--I think it was 3. I have

> read on some of the

> posts that if 3 chromosomes are affected the prognosis is poorer.

> What does this mean

> exactly? Will the gleevec not work as well for me? I would really

> appreciate hearing form

> anyone who knows about this kind of stuff.

>

> Thanks so much

>

> Cam

>

>

>

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

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When I was diagnosed, with cml, they also told me that I have an additional

chromosone involved as well( number 10 I think it was) and that I would be a

lot harder to treat. I am in CCR, showing no PH+ cells at this point.

Gleevec is working for me.

Hope this helps and gives you some home

>From: " cjwilliams16 " <coralee.williams@...>

>Reply-

>

>Subject: [ ] 3 chromosomes a problem???

>Date: Tue, 31 Oct 2006 21:42:01 -0000

>

>Hi everyone,

>

>When I was first diagnosed they told me I had the philidelpia chromosome as

>well as an

>abnormality on an additional chromosome--I think it was 3. I have read on

>some of the

>posts that if 3 chromosomes are affected the prognosis is poorer. What does

>this mean

>exactly? Will the gleevec not work as well for me? I would really

>appreciate hearing form

>anyone who knows about this kind of stuff.

>

>Thanks so much

>

>Cam

>

>

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The CML is produced by the #9 & #22 chromosome switching parts. I also have

#9 & #1 switching parts. I was diagnosed in June 2006 and within 3 weeks of

being on Gleevec, my counts were back in the normal range. They really

don't know how the 2nd mutation is going to affect me, so they just watch

for lack of response to the Gleevec. The doctor at Emory Cancer Center,

says as long as my counts are looking good, he will not change anything, but

just watches more closely. He will do extra tests when I have my next BMB

in January. There are several that have indicated they have an additional

mutation, but for some it hasn't yet made any difference.

I suggest that your husband get a copy of his blood test and keep a record

of how it's doing. There is a lot of good information on the internet on

how to read the blood test. There is a shot my doctor gives me when I'm

really feeling tired that helps.procrit(?) It's not cheap but does seem to

work.

Hope this gives you a little more comfort that his 2nd mutation is not out

of the ordinary.

Barb in Atlanta

Dx June 2006

_____

From: [mailto: ] On Behalf Of

shalyn@...

Sent: Tuesday, October 31, 2006 5:32 PM

Subject: Re: [ ] 3 chromosomes a problem???

Hi Cam,

My husband was also diagnosed with 3 chromosomes. He has chromos - 1,

9 & 22 involved with a deletion (whatever that means) We were also

told it means a poorer prognosis and poorer response to treatment. I

know nothing of what this means nor did his hematologist give much

insight except to say its very rare. I appreciate hearing of someone

else who has the unfortunate results as such - but would love to hear

of anything you find or hear of. We are seeking a second opinion right

now. My husband went from not having or feeling any symptoms to 1

month later feeling very bad. He now feels faint after exercise and is

sleeping an awful lot. He begins Gleevec today - we will see with his

bloodwork in the next 2 weeks- how things are going.

Please let me know if you learn more.

Shalyn

> Hi everyone,

>

> When I was first diagnosed they told me I had the philidelpia

> chromosome as well as an

> abnormality on an additional chromosome--I think it was 3. I have

> read on some of the

> posts that if 3 chromosomes are affected the prognosis is poorer.

> What does this mean

> exactly? Will the gleevec not work as well for me? I would really

> appreciate hearing form

> anyone who knows about this kind of stuff.

>

> Thanks so much

>

> Cam

>

>

>

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

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