New member!

[Guest guest]

R. Romero:

You are not alone in this fight. At 27. Hopefully you will find

that you tolerate treatments well because of your age.

Gleevec takes some getting used to, so try to give

yourself some down time for the first month or so.

You will find that things will even out after that.

Post any questions you may have!

Sent from my iPhone

On Oct 30, 2009, at 5:04 PM, " ryanromero49er " <ryan.romero@...

> wrote:

> I feel much better! Thanks for your response!

>

>

> >

> > Welcome. My wbc was 94,000 when I started. There are some on thie

> site way

> > way higher then that.

> >

> > Good luck to you and ask any questions you like

> >

> > Sharon T

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On Behalf

> Of

> > ryanromero49er

> > Sent: Friday, October 30, 2009 1:36 PM

> >

> > Subject: [ ] New member!

> >

> >

> >

> >

> >

> > Hi everyone!

> >

> > I was diagnosed with CML on 10/22. I start Gleevec tonight. They

> had me on

> > hydroxyurea which didn't have any effect on my WBC. I'm curious if

> everyone

> > else had a WBC of 78000. I'm only 27 and have no other health

> problems

> > except for a bad back....

> >

> > I'm glad to see I'm not alone going through this!

> >

> > Thanks Zavie for sending Bev the link!

> >

> > R.Romero

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome to the group no one wanted to join!

It takes you by surprise at any age. I was 58 when I was diagnosed 2/10/03.

FYI my wbc was 77,000 at diagnosis. The others are right, some in this group

had counts in the 200K, 300K and more ranges. The lucky thing is that they

have caught it and there are things to do for it in most cases. This one

whale of a health problem but things are looking really good for most

people. Hang in there, fight the beast like mad and take care of yourself.

Troxel

On Fri, Oct 30, 2009 at 1:36 PM, ryanromero49er

<ryan.romero@...>wrote:

>

>

> Hi everyone!

>

> I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

> else had a WBC of 78000. I'm only 27 and have no other health problems

> except for a bad back....

>

> I'm glad to see I'm not alone going through this!

>

> Thanks Zavie for sending Bev the link!

>

> R.Romero

>

>

>

[Guest guest]

Thanks ! I'm a fighter... always have been! Does anyone know if I should

expect to lose my hair with Gleevec?

>

> Welcome to the group no one wanted to join!

>

> It takes you by surprise at any age. I was 58 when I was diagnosed 2/10/03.

> FYI my wbc was 77,000 at diagnosis. The others are right, some in this group

> had counts in the 200K, 300K and more ranges. The lucky thing is that they

> have caught it and there are things to do for it in most cases. This one

> whale of a health problem but things are looking really good for most

> people. Hang in there, fight the beast like mad and take care of yourself.

>

> Troxel

>

> On Fri, Oct 30, 2009 at 1:36 PM, ryanromero49er

> <ryan.romero@...>wrote:

>

> >

> >

> > Hi everyone!

> >

> > I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> > hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

> > else had a WBC of 78000. I'm only 27 and have no other health problems

> > except for a bad back....

> >

> > I'm glad to see I'm not alone going through this!

> >

> > Thanks Zavie for sending Bev the link!

> >

> > R.Romero

> >

> >

> >

>

>

>

[Guest guest]

Welcome to the Reluctant Members Club...I was a bit higher at diagnosis.

Good luck with the Gleevec! There is an amazing amount of wisdom and experience

on this board.

Beth

[ ] New member!

 

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone else

had a WBC of 78000. I'm only 27 and have no other health problems except for a

bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

My hair did get a bit thinner (fortunately I started out with a lot of hair!),

but I don't know of anyone who has lost all their hair.

The biggest challenge at least visually is the " frog " eyes...folks often

accumulate fluid underneath their eyes and on their eyelids...I know I did. I

couldn't wear make-up because my lids were so swollen and forget

mascara--couldn't even see my lashes..lol, what a visual, huh?

Ask any questions you might have because someone here will have a great answer

or input.

Beth

Re: [ ] New member!

 

Thanks ! I'm a fighter... always have been! Does anyone know if I should

expect to lose my hair with Gleevec?

>

> Welcome to the group no one wanted to join!

>

> It takes you by surprise at any age. I was 58 when I was diagnosed 2/10/03.

> FYI my wbc was 77,000 at diagnosis. The others are right, some in this group

> had counts in the 200K, 300K and more ranges. The lucky thing is that they

> have caught it and there are things to do for it in most cases. This one

> whale of a health problem but things are looking really good for most

> people. Hang in there, fight the beast like mad and take care of yourself.

>

> Troxel

>

> On Fri, Oct 30, 2009 at 1:36 PM, ryanromero49er

> <ryan.romero@...>wrote:

>

> >

> >

> > Hi everyone!

> >

> > I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> > hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

> > else had a WBC of 78000. I'm only 27 and have no other health problems

> > except for a bad back....

> >

> > I'm glad to see I'm not alone going through this!

> >

> > Thanks Zavie for sending Bev the link!

> >

> > R.Romero

> >

> >

> >

>

>

>

[Guest guest]

Hi everyone,Second attempt to send an e-mail. I am new to this group too. I was

diagnosed in Aug. 2008 with a WBC of 200. I've been on 400 mgs Gleevec since

except for last 2 months---My dose was reduced to 300 mgs because the Gleevec

test indicated that I had plenty of excess Gleevec in my system. I have it

checked in November.

I haven't lost any hair, but my hair has changed texture and gotten curlier. I

have lost my lashes or they are hidden in the swollen eyelids -- mascara doesn't

work for me anymore either! 

Gleevec does take some time to adjust to, but I've found that it does improve

over time.

" Welcome to the group no one wants to join " LOL - thanks for the good laugh. I

do feel grateful to have others to talk with!

My best you R. Romero!

Kim

From: anita <awristen1@...>

Subject: Re: [ ] New member!

Date: Friday, October 30, 2009, 4:29 PM

 

Hello and welcome.

I take Sprycel but was Dx'd in April 2007 in the blast phase wasn't believed i

would make 6 mths. I am proud to say made full remission July of this year.

Good thing you are a fighter. I am too. Never give up.

Life is good and it gets better. My hair has been getting rather thin in the

last couple of months but could blame that on family genes. LOL

God still works miracles

Anita

____________ _________ _________ __

From: ryanromero49er <ryan.romero@ callfusion. com>

groups (DOT) com

Sent: Fri, October 30, 2009 6:03:40 PM

Subject: Re: [ ] New member!

Thanks ! I'm a fighter... always have been! Does anyone know if I should

expect to lose my hair with Gleevec?

>

> Welcome to the group no one wanted to join!

>

> It takes you by surprise at any age. I was 58 when I was diagnosed 2/10/03.

> FYI my wbc was 77,000 at diagnosis. The others are right, some in this group

> had counts in the 200K, 300K and more ranges. The lucky thing is that they

> have caught it and there are things to do for it in most cases. This one

> whale of a health problem but things are looking really good for most

> people. Hang in there, fight the beast like mad and take care of yourself.

>

> Troxel

>

> On Fri, Oct 30, 2009 at 1:36 PM, ryanromero49er

> <ryan.romero@ ...>wrote:

>

> >

> >

> > Hi everyone!

> >

> > I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> > hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

> > else had a WBC of 78000. I'm only 27 and have no other health problems

> > except for a bad back....

> >

> > I'm glad to see I'm not alone going through this!

> >

> > Thanks Zavie for sending Bev the link!

> >

> > R.Romero

> >

> >

> >

>

>

>

[Guest guest]

Hi , I'm one of the old timers, have had CML since 1995, I'm 79 and I am

still going strong.

I am in the Ariad trial at the U of Mich, with Dr. Talpaz, and doing well on

it.  I have been in  6 trials and have not lost my hair yet!  you won't either. 

Good luck, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

From: ryanromero49er <ryan.romero@...>

Subject: [ ] New member!

Date: Friday, October 30, 2009, 4:36 PM

 

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone else

had a WBC of 78000. I'm only 27 and have no other health problems except for a

bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

Hello... 280,000 here. Dx Aug 2007 at 36 yo.

One thing I didn't see others mention... track what you eat when you take

Gleevec. Everyone is a little different... for me, I need bread products and

milk. My favorite right now, is Honey Bunches of Oats. One of my first meals

was steak and brocolli... man, was I STUFFED!! Figured, take my Gleevec and

I'll never notice... all of it came back up on me. Brocolli doesn't taste

better the second time. LOL. A bagel or 100 calorie pack of popcorn - those

work. Pizza - not well enough.

You get the idea.

If you track what you eat, you'll get a better idea of what helps the

Gleevec stay down with minimal sickness.

Tammy

_____

From: ryanromero49er [mailto:ryan.romero@...]

Sent: Friday, October 30, 2009 4:36 PM

Subject: [ ] New member!

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

else had a WBC of 78000. I'm only 27 and have no other health problems

except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

AND DON'T LIE DOWN FOR 3O MIN AFTER EATING................AND SOMETIMES, IT'S

BETTER TO EAT A LITTLE, TAKE A PILL, EAT A LITTLE, TAKE ANOTHER PILL.  AND DRINK

PLENTY OF WATER,. AND NO GRAPEFRUIT PRODUCTS.......YOU MOST LIKELY ALREADY HAVE

A SHEET OF INSTRUCTIONS, AND KNOW ALL THIS STUFF, BUT, JUST IN

CASE...............Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: Tammy Ferns <tammy@...>

Subject: RE: [ ] New member!

Date: Friday, October 30, 2009, 9:48 PM

 

Hello... 280,000 here. Dx Aug 2007 at 36 yo.

One thing I didn't see others mention... track what you eat when you take

Gleevec. Everyone is a little different... for me, I need bread products and

milk. My favorite right now, is Honey Bunches of Oats. One of my first meals

was steak and brocolli... man, was I STUFFED!! Figured, take my Gleevec and

I'll never notice... all of it came back up on me. Brocolli doesn't taste

better the second time. LOL. A bagel or 100 calorie pack of popcorn - those

work. Pizza - not well enough.

You get the idea.

If you track what you eat, you'll get a better idea of what helps the

Gleevec stay down with minimal sickness.

Tammy

_____

From: ryanromero49er [mailto:ryan.romero@ callfusion. com]

Sent: Friday, October 30, 2009 4:36 PM

groups (DOT) com

Subject: [ ] New member!

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

else had a WBC of 78000. I'm only 27 and have no other health problems

except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

You know Bobby... I cannot eat anything after I take the Gleevec... it makes

my stomach churn!! But, I only have 1 400 mg pill... so who knows.

Do they have instruction sheets now? Two years ago, I got the one for

regular chemo. Warning me about shaving my legs and stuff. I already knew

that wasn't true.. so it is great if they have it!!

Tammy

_____

From: ROBERTA DOYLE [mailto:rcd1929@...]

Sent: Friday, October 30, 2009 9:52 PM

Subject: RE: [ ] New member!

AND DON'T LIE DOWN FOR 3O MIN AFTER EATING................AND SOMETIMES,

IT'S BETTER TO EAT A LITTLE, TAKE A PILL, EAT A LITTLE, TAKE ANOTHER PILL.

AND DRINK PLENTY OF WATER,. AND NO GRAPEFRUIT PRODUCTS.......YOU MOST LIKELY

ALREADY HAVE A SHEET OF INSTRUCTIONS, AND KNOW ALL THIS STUFF, BUT, JUST IN

CASE...............Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U

of Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: Tammy Ferns <tammy@fernsconsulti <mailto:tammy%40fernsconsulting.com>

ng.com>

Subject: RE: [ ] New member!

groups (DOT) <mailto:%40> com

Date: Friday, October 30, 2009, 9:48 PM

Hello... 280,000 here. Dx Aug 2007 at 36 yo.

One thing I didn't see others mention... track what you eat when you take

Gleevec. Everyone is a little different... for me, I need bread products and

milk. My favorite right now, is Honey Bunches of Oats. One of my first meals

was steak and brocolli... man, was I STUFFED!! Figured, take my Gleevec and

I'll never notice... all of it came back up on me. Brocolli doesn't taste

better the second time. LOL. A bagel or 100 calorie pack of popcorn - those

work. Pizza - not well enough.

You get the idea.

If you track what you eat, you'll get a better idea of what helps the

Gleevec stay down with minimal sickness.

Tammy

_____

From: ryanromero49er [mailto:ryan.romero@ callfusion. com]

Sent: Friday, October 30, 2009 4:36 PM

groups (DOT) com

Subject: [ ] New member!

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

else had a WBC of 78000. I'm only 27 and have no other health problems

except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

Hi : Welcome to our group, and I think you will get all the knowledge you

want on here, and even some laughs at times.

I was diagnosed in 1998, and still on Gleevec 400mg to this day.

Your young and you will do well. I read some of the other messages, and I did

not lose any hair, but instead got curly hair which I never had in my life. As

for side effects, everyone is different. I do find that I need to eat a

substantial meal before taking my Gleevec. I do mine with breakfast every

morning. I am not a breakfast eater, therefore, I basically wait and do more of

a brunch then take all my medications and I am fine.

I have had breakthroughs of nausea here and there, but not severe.

Just post any questions you have at anytime. You will notice other side effects

but you may not get the same ones as others do.

Take one day at a time, and know you can post on here at anytime of the day

to us.

Take Care

SUE

>

> Hi everyone!

>

> I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone else

had a WBC of 78000. I'm only 27 and have no other health problems except for a

bad back....

>

> I'm glad to see I'm not alone going through this!

>

> Thanks Zavie for sending Bev the link!

>

> R.Romero

>

[Guest guest]

Tammy, I don't recall ever  eating after Gleevec, I just took Gleevec with or

after a big meal.  I didn't eat enough one day and had to pull into a shopping

center to " toss breakfast "   and was right in front of a bank.  Only ever got

sick once, that was enough. 

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: Tammy Ferns <tammy@fernsconsult i <mailto:tammy% 40fernsconsultin g.com>

ng.com>

Subject: RE: [ ] New member!

groups (DOT) <mailto:% 40groups. com> com

Date: Friday, October 30, 2009, 9:48 PM

Hello... 280,000 here. Dx Aug 2007 at 36 yo.

One thing I didn't see others mention... track what you eat when you take

Gleevec. Everyone is a little different... for me, I need bread products and

milk. My favorite right now, is Honey Bunches of Oats. One of my first meals

was steak and brocolli... man, was I STUFFED!! Figured, take my Gleevec and

I'll never notice... all of it came back up on me. Brocolli doesn't taste

better the second time. LOL. A bagel or 100 calorie pack of popcorn - those

work. Pizza - not well enough.

You get the idea.

If you track what you eat, you'll get a better idea of what helps the

Gleevec stay down with minimal sickness.

Tammy

_____

From: ryanromero49er [mailto:ryan. romero@ callfusion. com]

Sent: Friday, October 30, 2009 4:36 PM

groups (DOT) com

Subject: [ ] New member!

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

else had a WBC of 78000. I'm only 27 and have no other health problems

except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

Hi Tammy,

The advice is to take Gleevec with a full meal and drink lots of water.

I don't think it matters when and how you take Gleevec. Gleevec has a long

half life, which means that it stays in you body for a long time. This means

that you can take the Gleevec at any time during the day and you can split

up the dose any way you like. So, find a way that works best for you.

I have been very lucky when it comes to taking Gleevec. I usually take it in

the AM after a bowl of cereal. I can also take Gleevec on an empty stomach

without any discomfort.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of Tammy

Ferns

Sent: October 30, 2009 10:14 PM

Subject: RE: [ ] New member!

You know Bobby... I cannot eat anything after I take the Gleevec... it makes

my stomach churn!! But, I only have 1 400 mg pill... so who knows.

Do they have instruction sheets now? Two years ago, I got the one for

regular chemo. Warning me about shaving my legs and stuff. I already knew

that wasn't true.. so it is great if they have it!!

Tammy

_____

From: ROBERTA DOYLE [mailto:rcd1929sbcglobal (DOT)

<mailto:rcd1929%40sbcglobal.net> net]

Sent: Friday, October 30, 2009 9:52 PM

groups (DOT) <mailto:%40> com

Subject: RE: [ ] New member!

AND DON'T LIE DOWN FOR 3O MIN AFTER EATING................AND SOMETIMES,

IT'S BETTER TO EAT A LITTLE, TAKE A PILL, EAT A LITTLE, TAKE ANOTHER PILL.

AND DRINK PLENTY OF WATER,. AND NO GRAPEFRUIT PRODUCTS.......YOU MOST LIKELY

ALREADY HAVE A SHEET OF INSTRUCTIONS, AND KNOW ALL THIS STUFF, BUT, JUST IN

CASE...............Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U

of Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: Tammy Ferns <tammy@fernsconsulti <mailto:tammy%40fernsconsulting.com>

ng.com>

Subject: RE: [ ] New member!

groups (DOT) <mailto:%40> com

Date: Friday, October 30, 2009, 9:48 PM

Hello... 280,000 here. Dx Aug 2007 at 36 yo.

One thing I didn't see others mention... track what you eat when you take

Gleevec. Everyone is a little different... for me, I need bread products and

milk. My favorite right now, is Honey Bunches of Oats. One of my first meals

was steak and brocolli... man, was I STUFFED!! Figured, take my Gleevec and

I'll never notice... all of it came back up on me. Brocolli doesn't taste

better the second time. LOL. A bagel or 100 calorie pack of popcorn - those

work. Pizza - not well enough.

You get the idea.

If you track what you eat, you'll get a better idea of what helps the

Gleevec stay down with minimal sickness.

Tammy

_____

From: ryanromero49er [mailto:ryan.romero@ callfusion. com]

Sent: Friday, October 30, 2009 4:36 PM

groups (DOT) com

Subject: [ ] New member!

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

else had a WBC of 78000. I'm only 27 and have no other health problems

except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

Thanks Jo! J The Gleevec isn't so bad!

From: [mailto: ] On Behalf Of

Jo-Dee McKibben

Sent: Monday, November 02, 2009 6:15 AM

Subject: Re: [ ] New member!

Greetings and welcome to the best club for you that you will be able to

find to help!!

I was diagnosed on 01/08/2008. My WBC was 98000. I am truly blessed.

My WBC went from 98000 to 6500 with in a month of being on Gleevec.

(400mg once a day!) On October 7, 2009 I have no leukemia in my blood!!

One pill everyday for the rest of my life or until something better

comes along or a cure!!

If you ever want to talk let me know!!!

I will be praying for you!!

Blessings,

Jo-Dee

From: ryanromero49er <ryan.romero@...

<mailto:ryan.romero%40callfusion.com> >

Subject: [ ] New member!

<mailto:%40>

Date: Friday, October 30, 2009, 8:36 PM

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me

on hydroxyurea which didn't have any effect on my WBC. I'm curious if

everyone else had a WBC of 78000. I'm only 27 and have no other health

problems except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

Thanks ! Tell your daughter to keep her chin up (sounds like she is

a fighter)!

Thanks for your story!

From: [mailto: ] On Behalf Of

duane36_1999

Sent: Monday, November 02, 2009 5:32 AM

Subject: [ ] Re: New member!

My daughter was diagnosed with CML March 21st of this year which was one

month before her 19th birthday. She went in for some pain and a lump in

her left side and after the tests the military doctors sent her to

Stanford University because they couldn't say for sure what was wrong

with her, but they knew it was serious and they didn't know how to treat

it. It turned out to be CML. She is on Gleevic now and has responded

very favorably to the treatment. At her initial diagnoses her WBC was

290,000. They started her out on Hydroxyeurea and Gleevic. After about

one week they stopped the Hydroxyeurea, but the Gleevic continues. Her

WBC is now normal and the numbers of the philadelphia chromosome

continue to decline on the bone marrow biopsies that she has every 90

days. So all in all she is doing good. She is most likely going to

persue a bone marrow transplant because she doesn't want to be taking

the Gleevic the rest of her live. She is fortunate because two of her

sisters are a match.

I wish you all the luck with the progression of your disease. As a

comforting thought to add. To see my daughter you would never know

anything was wrong with her. She is doing really good and her activity

level is pretty much like it was before her diagnoses. Her side effects

from the Gleevic are pretty mild, with the most severe being nausea, but

the doctors are doing their best to combat that with other medicines.

>

> Welcome. My wbc was 94,000 when I started. There are some on thie site

way

> way higher then that.

>

> Good luck to you and ask any questions you like

>

> Sharon T

>

>

>

> _____

>

> From: <mailto:%40> [mailto:

<mailto:%40> ] On Behalf Of

> ryanromero49er

> Sent: Friday, October 30, 2009 1:36 PM

> <mailto:%40>

> Subject: [ ] New member!

>

>

>

>

>

> Hi everyone!

>

> I was diagnosed with CML on 10/22. I start Gleevec tonight. They had

me on

> hydroxyurea which didn't have any effect on my WBC. I'm curious if

everyone

> else had a WBC of 78000. I'm only 27 and have no other health problems

> except for a bad back....

>

> I'm glad to see I'm not alone going through this!

>

> Thanks Zavie for sending Bev the link!

>

> R.Romero

>

>

>

>

>

>

[Guest guest]

Hi

I am sorry that your daughter has CML, but really happy to hear how well she is

doing. Her treatment sounds pretty much the same as my son's was when he was

diagnosed three years ago at age 23. He is also doing very well, actually much

better than before. He also had a bit of nausea, but that passed after a

little while. Tiredness and being cold are the two side effects that still have

a hold, but he is working out at the gym these days and that helps - as does the

ever-present jacket.

I hope your daughter keeps on with the good response to gleevec..

love and light

Annie

http://livingwithcml.blogspot.com

> >

> > Welcome. My wbc was 94,000 when I started. There are some on thie site way

> > way higher then that.

> >

> > Good luck to you and ask any questions you like

> >

> > Sharon T

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On Behalf Of

> > ryanromero49er

> > Sent: Friday, October 30, 2009 1:36 PM

> >

> > Subject: [ ] New member!

> >

> >

> >

> >

> >

> > Hi everyone!

> >

> > I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> > hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

> > else had a WBC of 78000. I'm only 27 and have no other health problems

> > except for a bad back....

> >

> > I'm glad to see I'm not alone going through this!

> >

> > Thanks Zavie for sending Bev the link!

> >

> > R.Romero

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks Jo! I have all of those side effects but I prepared myself for

much worse! So when I take it, it's not so bad! I haven't yacked yet so

that's good!

Have a great week!

From: [mailto: ] On Behalf Of

Jo-Dee McKibben

Sent: Monday, November 02, 2009 6:44 AM

Subject: Re: [ ] New member!

,

I don't want you to think I don't have some side effects from the

Gleevec. I actually take Zofran (anti nausia med) right before I eat

and then the Gleevec with LOTS OF WATER when I'm done. We have a really

great restaurant near us with awesome salads. (NOT SO AWESOME AFTER

GLEEVEC!!!) I have to have something alittle more substantial that

lettuce when taking my meds. I had some swelling and my dr. put me on a

low dose blood pressure med with a water pill in it to help with the

swelling in the ankles and eyes. My hair wasn't falling out like going

bald but I had alot of stray hairs on my clothes and it bothered me. I

take a vitamin Nioxin. My beautician gets them from the beauty supply

store for me. I also had a problem with the scoots. I take a pill for

that also but I don't have it with me. If you want the name let me know

and I'll check the bottle at home.

This may sound alittle overwhelming but just know God has you right

where you belong. There are totally amazing people on this site that

can answer any little old thing you wonder about!!

If you just want to vent we will talk you right out of it!!

My daughter and doctor both told me this the best bad news you will ever

get!! This leukemia is treatable!!!! You could be so much worse off!!!

Keep your chin up!!!

Blessings,

Jo-Dee

From: ryanromero49er <ryan.romero@...

<mailto:ryan.romero%40callfusion.com> >

Subject: [ ] New member!

<mailto:%40>

Date: Friday, October 30, 2009, 8:36 PM

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me

on hydroxyurea which didn't have any effect on my WBC. I'm curious if

everyone else had a WBC of 78000. I'm only 27 and have no other health

problems except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

GREAT FOR YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Blessings,

Jo-Dee

From: ryanromero49er <ryan.romero@ callfusion. com

<mailto:ryan. romero%40callfus ion.com> >

Subject: [ ] New member!

groups (DOT) com <mailto:% 40groups. com>

Date: Friday, October 30, 2009, 8:36 PM

Hi everyone!

I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me

on hydroxyurea which didn't have any effect on my WBC. I'm curious if

everyone else had a WBC of 78000. I'm only 27 and have no other health

problems except for a bad back....

I'm glad to see I'm not alone going through this!

Thanks Zavie for sending Bev the link!

R.Romero

[Guest guest]

Hi ,

Before making a decision about a transplant please sit down with your

daughter and review the following paper.

http://hep.uchicago.edu/~seturner/transplantdecision.pdf

Transplantation for chronic myelogenous leukemia:

yes, no, maybe so . an Oregon perspective

T Maziarz and J Mauro

In addition to Tracey's comment, I have a very sobering statistic. 50% of

all patients undergoing a BMT are dead within 5 years.

Also, you might want to read the book 'My So Called Normal Life' by

Zammett Ruddy. An example of a CML patient who went on to marry and have a

baby. She is now expecting her second child. I'm not sure you want to do

this after a transplant.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

duane36_1999

Sent: November 2, 2009 8:32 AM

Subject: [ ] Re: New member!

My daughter was diagnosed with CML March 21st of this year which was one

month before her 19th birthday. She went in for some pain and a lump in her

left side and after the tests the military doctors sent her to Stanford

University because they couldn't say for sure what was wrong with her, but

they knew it was serious and they didn't know how to treat it. It turned out

to be CML. She is on Gleevic now and has responded very favorably to the

treatment. At her initial diagnoses her WBC was 290,000. They started her

out on Hydroxyeurea and Gleevic. After about one week they stopped the

Hydroxyeurea, but the Gleevic continues. Her WBC is now normal and the

numbers of the philadelphia chromosome continue to decline on the bone

marrow biopsies that she has every 90 days. So all in all she is doing good.

She is most likely going to persue a bone marrow transplant because she

doesn't want to be taking the Gleevic the rest of her live. She is fortunate

because two of her sisters are a match.

I wish you all the luck with the progression of your disease. As a

comforting thought to add. To see my daughter you would never know anything

was wrong with her. She is doing really good and her activity level is

pretty much like it was before her diagnoses. Her side effects from the

Gleevic are pretty mild, with the most severe being nausea, but the doctors

are doing their best to combat that with other medicines.

>

> Welcome. My wbc was 94,000 when I started. There are some on thie site way

> way higher then that.

>

> Good luck to you and ask any questions you like

>

> Sharon T

>

>

>

> _____

>

> From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

> ryanromero49er

> Sent: Friday, October 30, 2009 1:36 PM

> groups (DOT) <mailto:%40> com

> Subject: [ ] New member!

>

>

>

>

>

> Hi everyone!

>

> I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> hydroxyurea which didn't have any effect on my WBC. I'm curious if

everyone

> else had a WBC of 78000. I'm only 27 and have no other health problems

> except for a bad back....

>

> I'm glad to see I'm not alone going through this!

>

> Thanks Zavie for sending Bev the link!

>

> R.Romero

>

>

>

>

>

>

[Guest guest]

Hi : I remember your daughter, and when she was diagnosed. I think her

name is . I might be wrong with all the new members.

I am glad she is doing so good. Did you post on here CML 2?

Glad you posted, as we have so many new members signing on everyday.

They do not know what to expect. Your daughter signed on a few times, and I had

her e-mail address. I have had to rewrite my list so many times of all my

contacts, but I did not have yours or hers anymore.

I was thinking about her not too long ago, and was wondering how she was

doing. Keep us up to date so we know how she is progressing.

> >

> > Welcome. My wbc was 94,000 when I started. There are some on thie site way

> > way higher then that.

> >

> > Good luck to you and ask any questions you like

> >

> > Sharon T

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On Behalf Of

> > ryanromero49er

> > Sent: Friday, October 30, 2009 1:36 PM

> >

> > Subject: [ ] New member!

> >

> >

> >

> >

> >

> > Hi everyone!

> >

> > I was diagnosed with CML on 10/22. I start Gleevec tonight. They had me on

> > hydroxyurea which didn't have any effect on my WBC. I'm curious if everyone

> > else had a WBC of 78000. I'm only 27 and have no other health problems

> > except for a bad back....

> >

> > I'm glad to see I'm not alone going through this!

> >

> > Thanks Zavie for sending Bev the link!

> >

> > R.Romero

> >

> >

> >

> >

> >

> >