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Good Morning all...

well its been approx 5 months without any CML treatment, I must admit it feels

good, I seem to feel so much better

when I am without any treatment.  I am still transfusion dependent, I receive

HGB at least once week and platelets

at least once week sometime twice a week.  I just talked with Zavie and he

laughs pretty hard when I told him I was

down to Zero again this past week.  Needed platelets Mon and Thurs to get me up

a bit.  All Zero platelets mean

is that they could not get any up into the tube to count.  I still navigate

pretty well even with low blood counts.  I

think if I have close to normal count I would explode.  As I have had all of the

new drugs for CML, I am not sure

what the next step is going to be.  As I said I feel pretty good, not sure why

my CML seems to react different to

the standard type, As one doctor said its in my genes, so I went out and bought

 new pants which I am now trying LOL

SkipD dxed 33 years ago.... 

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Skip, do you know how to tell a boy chromosome from a girl chromosome?  pull

down their genes!!!

there is always Ariad out there in case you need it.  It's working for me right

now, but I never lose sight of the fact that so did Sprycel, for 1 1/2 years! 

How nice not to take drugs, a nice vacation.  Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Skip Duffie <skipd_2002@...>

Subject: [ ] update

Date: Sunday, April 25, 2010, 10:59 AM

 

Good Morning all...

well its been approx 5 months without any CML treatment, I must admit it feels

good, I seem to feel so much better

when I am without any treatment.  I am still transfusion dependent, I receive

HGB at least once week and platelets

at least once week sometime twice a week.  I just talked with Zavie and he

laughs pretty hard when I told him I was

down to Zero again this past week.  Needed platelets Mon and Thurs to get me up

a bit.  All Zero platelets mean

is that they could not get any up into the tube to count.  I still navigate

pretty well even with low blood counts.  I

think if I have close to normal count I would explode.  As I have had all of

the new drugs for CML, I am not sure

what the next step is going to be.  As I said I feel pretty good, not sure why

my CML seems to react different to

the standard type, As one doctor said its in my genes, so I went out and bought

 new pants which I am now trying LOL

SkipD dxed 33 years ago.... 

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Hello,

Slip, can you tell me why you stopped Gleevec please?

>

> Good Morning all...

> well its been approx 5 months without any CML treatment, I must admit it feels

good, I seem to feel so much better

> when I am without any treatment.  I am still transfusion dependent, I receive

HGB at least once week and platelets

> at least once week sometime twice a week.  I just talked with Zavie and he

laughs pretty hard when I told him I was

> down to Zero again this past week.  Needed platelets Mon and Thurs to get me

up a bit.  All Zero platelets mean

> is that they could not get any up into the tube to count.  I still navigate

pretty well even with low blood counts.  I

> think if I have close to normal count I would explode.  As I have had all of

the new drugs for CML, I am not sure

> what the next step is going to be.  As I said I feel pretty good, not sure why

my CML seems to react different to

> the standard type, As one doctor said its in my genes, so I went out and

bought  new pants which I am now trying LOL

>

> SkipD dxed 33 years ago.... 

>

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