New member Introduction

[Guest guest]

Sharon-

Please let us know if there is trouble getting the

meds. The LLS has funding to help. The gold pill is

like gold and some insurance companies might balk at

the cost.

--- serenitywon <serenitywon@...> wrote:

>

> Chi,

> I was diagnosed on Friday last appt of the day.My

> pharmacy has to

> get insurance approval and needs a letter of

> Necessity from the

> Dr.office so I have to wait for Monday when they

> open again. It has

> given me a chance to do some research and join a

> support group.I will

> check into the 100mg as well. Thanks for the info.

> Thanks

> SharonS

> p.s. I also agree everday above ground is good

>

>

>

>

> In , china neal <chimera46@...>

> wrote:

> > Hi Sharon,

> >

> > Welcome home and to our family. I just passed my 1

> > year mark. I am confused that they gave you the

> > diagnosis but didn't start you immediately on

> gleevec,

> > the same day. The 100 mg are tiny and sound like a

> > good idea for you. For some reason the 400 mg is

> > easier on my stomach than when I took 4 of the

> 100mg.

> > Most doctors are not cml specialists and even if

> your

> > doc is...you have to be your own advocate- this

> group

> > will be a big help in answering questions and

> > eductaing you.

> >

> > Hang in there girl..everyday above the ground is a

> > great day!!! Take good care.

> >

> > Chi

> >

>

>

>

[Guest guest]

Chi,

Thanks for the info I will most definately let you know what

happens..

SharonS

In , china neal <chimera46@...> wrote:

>

> Sharon-

>

> Please let us know if there is trouble getting the

> meds. The LLS has funding to help. The gold pill is

> like gold and some insurance companies might balk at

> the cost.

> --- serenitywon <serenitywon@...> wrote:

>

[Guest guest]

Sharon,

You cannot cut the 400 mg pill. Let the pharmacy know that you cannot take

large pills due to the lap band. If they cannot accommodate because of

insurance, have your MD call the insurance company to explain.

dx August 1999

@...: serenitywon@...: Sat, 31 May 2008

23:54:20 +0000Subject: Re: [ ] New member Introduction

,Thanks for the info and encouraging words.Do you know if the big horse

pill can be cut to make the pieces smaller?I will keep reading what all the

others here have to share as I have alot to learn.Thanks againSharonSIn

, Rosen Lum <rrosenlum@...> wrote:>> > A warm

welcome, Sharon. You betcha you can plan on a long life, as much as anyone on

the planet can. Beware of what you read online, some of the information you come

by is outdated already. When I got diagnosed in '05 I went to the Merck site and

read that I could expect to live about 18 months. What a shocker that was! And

of course it was just very outdated information. My best source of information

has been THIS GROUP. It's a wealth of very current information, friendly

encouragement, empathy and support!> > About swallowing the pills. They do come

in a tiny, 100-mg. size. You might do better to take four of those rather than

the one horse pill.> > in San Francisco> > > > > @...:

serenitywon@...: Sat, 31 May 2008 17:37:47 +0000Subject: [ ] New member

Introduction> > > > > G'Morning everyone,My name is Sharon.I am a 40 year old

female.I was diagnosed yesterday with Chronic Luekemia(CML). I have many

additional health issues.I have Diabetis,low cholesterol,chronic

Gastritis,IBS,Diverticulosis and Leaky heart matrial valves. I have had Gastric

Bypass surgery and Lapband surgery.I have malabsorption issues due to this.I am

Vit D deficient and have episodes of anemia when iron infusions are needed.I am

often dehydrated as well.I take medications for all of these issues as well as

MANY vitamins and minerals due to the Gastric Bypass surgery and my absorption

issues.So there is a little history about me.If there are any questions please

feel free to ask.My DR has perscribed Gleevec(400mg) daily and Zyloprim (100mg)

daily.My Dr. is concerned that I will absorb enough of the medication to help.I

know virtually nothing about this condition and am now researching to see what I

can learn.I thought this support group would be a great place to start. I have a

terrible time taking medications.I can't physically swallow a pill larger tahn a

tylenol due to my Lapband and the stoma opening being very tiny to help restrict

intake.I haven't filled the perscription yet and am worried about the pill

size.Are these meds big? What are the side effects others here suffer from due

to the meds and/or condition?I have tons of questions but I will just start here

for now.Any info or literature etc to help me find my way would be wonderful.My

Dr. said the word Luekemia often scares people and they feel it is a life

sentence but it is not the case.Is this true?Can I plan on a long life? I was

told not to worry..Is he placading me?Hope everyone has a great

weekend..ThanksSharonS > > > > > > >

__________________________________________________________> Make every e-mail

and IM count. Join the i'm Initiative from Microsoft.>

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_ MakeCount> >

[Guest guest]

Not normally! Tiredness right now. Occasionally the effect of " chemo

brain " . Not being able to think clearly. I am still working, thank goodness.

I'm self-employed, so luckily my clients were okay with the temporary slow

down while I was adjusting.

I think the biggest was/is learning what to eat as not to desire to throw up

the Gleevec. Has to be a bread product or cereal works best.

Tammy

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Sunday, June 01, 2008 12:44 PM

Subject: [ ] Re: New member Introduction

Tammy,

Would you mind sharing with me what has been the biggest obstucle

for you to overcome since the DX? Do you have alot of side effects from

the meds or pain from the illness?Thanks for sharing..

SharonS

In groups (DOT) <mailto:%40> com, " Tammy Ferns "

<tammy@...> wrote:

>

> Hi Sharon,

> I've been here about 7 months now. This group has been a great source

of

> information and friendship.

> Tammy

>

[Guest guest]

Sharon,

There are alot of side effects to gleevec that you will only hear

about from the people taking it. The Gleevec sites do not list all

the side effects. From my experiance listening to people in the

groups I have been involved in most people gain weight on Gleevec. I

was a differant story. I had such nausea and diarrhea that I lost 85

pounds the first year that I was on gleevec. That is one thing about

gleevec and CML I have been grateful for..lol...I have always been

overweight and tried absolutely everything to lose, that was the one

positive I found right away!....goodluck to you. Oh and if you do

start retaining too much fluid you can ask your doc to put you on a

diuretic that helps alot.

Hugs,

> >

> > --

> > Hi Sharon my name is Esther welcome to the group and sorry you

> have

> > to be here but this group will help you with anything you want to

> > know. I was dx. 18 months ago and i did think it was a death

> sentence

> > till i got to this group everyone is so noligable.

> >

> > as far as the meds go i was nauseous for about 3 months and then

it

> > slowly went away now it happens every once in a while but i took

> > Zofram for the nausea. I live a normal life i do get tired but

not

> as

> > much as before dx.the only thing i really hate is the swelling

> around

> > my eyes but i'm happy to be alive so that is a small price to

> pay.You

> > will be just fine i really don't think about it as much as i used

> to

> > but again thank g-d for this group.

> > Lots of hugs to you

> > Esther

> >

> >

> >

> >

> >

>

[Guest guest]

Hi Sharon,

Welcome to the group. The cml dx was a shock for all of us, but things are a

lot better than how it looks at first. Take your time to adjust to the

situation and the treatment, also to learn more about cml. I was dx in march

05 at 38 and have now a normal life, I work, practice all the sports

activities I used to. I take 400mg of gleevec daily.

Cheers,

Marcos.

On Sun, Jun 1, 2008 at 2:55 PM, Tammy Ferns <tammy@...>

wrote:

> Not normally! Tiredness right now. Occasionally the effect of " chemo

> brain " . Not being able to think clearly. I am still working, thank

> goodness.

> I'm self-employed, so luckily my clients were okay with the temporary slow

> down while I was adjusting.

> I think the biggest was/is learning what to eat as not to desire to throw

> up

> the Gleevec. Has to be a bread product or cereal works best.

> Tammy

>

> _____

>

> From: <%40> [mailto:

> <%40>] On Behalf Of

> serenitywon

> Sent: Sunday, June 01, 2008 12:44 PM

> <%40>

> Subject: [ ] Re: New member Introduction

>

> Tammy,

> Would you mind sharing with me what has been the biggest obstucle

> for you to overcome since the DX? Do you have alot of side effects from

> the meds or pain from the illness?Thanks for sharing..

> SharonS

>

> In groups (DOT) <mailto:%40<%2540>>

> com, " Tammy Ferns "

> <tammy@...> wrote:

> >

> > Hi Sharon,

> > I've been here about 7 months now. This group has been a great source

> of

> > information and friendship.

> > Tammy

> >

>

>

[Guest guest]

Hi, SharonS, I am on 400mg Gleevec for about 7 weeks now and I have some

nausea, bone pain and I am always tired to some degree but I work full time in

a dollar store and have only taken 1 day off because of muscle spasms and time

off for doctor appts. I get up and I am sore and tired but the days I have taken

off , I feel worse. I find if I just get up and get going, I am distracted and

it makes me feel " normal " to go to work . My evenings are pretty well spent in

my PJ'S. Things do seem to be getting better , some days are better than others

.. Take care. Eva B

From: serenitywon

Sent: Sunday, June 01, 2008 12:31 PM

Subject: Re: [ ] New member Introduction

Eva,

Thanks for the welcome.I plan to spend some tie in the file section

to see what I can learn from there.Are you taking the Gleevec and are

you having any side effects?Thanks for sharing..Everything is so new.

SharonS

In , " Eva " <evaob365@...> wrote:

>

> Welcome Sharon, these are the best bunch of people to help you with

your concerns . They have real life first hand knowledge. I am only 3

months into this but these wonderful people have helped me so much .

Take care. Eva B dx. March 12 /08

>

>

[Guest guest]

-

Hi Sharon,as far as weight gain with me[everybody is different] in

the beginning i lost weight because i was throwing up and after a

while i stayed the same.About 6 to 7 months later i felt like i was

starving all the time i never felt like this before i was wondering

if it was the Gleevec, then i gained some weight and now i go to

weight watchers and it has taken me 4 months to lose 11 pounds.

I guess it would go faster if i felt like exercising.All i know is

that i feel better when i'm lighter and with the Gleevec i feel

better when i don't eat alot.

Esther

-- In , " serenitywon " <serenitywon@...> wrote:

>

> Esther,

> Thank you so much for sharing your experience with me.Glad to hear

> you have found something that works for you.I hope to as

well.Sounds

> like nausea and swollen eyes seem to be the biggest side effect

from

> the Gleevec.I was wondering if the Gleevec caused weight gain/lose?

> Any experience with that?

> Thanks

> SharonS

>

>

>

> In , snipandtip <no_reply@> wrote:

> >

> > --

> > Hi Sharon my name is Esther welcome to the group and sorry you

> have

> > to be here but this group will help you with anything you want to

> > know. I was dx. 18 months ago and i did think it was a death

> sentence

> > till i got to this group everyone is so noligable.

> >

> > as far as the meds go i was nauseous for about 3 months and then

it

> > slowly went away now it happens every once in a while but i took

> > Zofram for the nausea. I live a normal life i do get tired but

not

> as

> > much as before dx.the only thing i really hate is the swelling

> around

> > my eyes but i'm happy to be alive so that is a small price to

> pay.You

> > will be just fine i really don't think about it as much as i used

> to

> > but again thank g-d for this group.

> > Lots of hugs to you

> > Esther

> >

> >

> >

> >

> >

>

[Guest guest]

,

Thanks for the info.I will definately do that.The Gleevec site

said it could be dissolved in water and they listed specific

measurements.Has anyone tried that?

Thanks

SharonS

In , Cohen <scrappygirl123@...> wrote:

>

> Sharon,

>

> You cannot cut the 400 mg pill. Let the pharmacy know that you

cannot take large pills due to the lap band. If they cannot

accommodate because of insurance, have your MD call the insurance

company to explain.

>

>

>

> dx August 1999

>

>

> @...: serenitywon@...: Sat, 31 May 2008 23:54:20

+0000Subject: Re: [ ] New member Introduction

>

>

>

>

> ,Thanks for the info and encouraging words.Do you know if

the big horse pill can be cut to make the pieces smaller?I will keep

reading what all the others here have to share as I have alot to

learn.Thanks againSharonSIn , Rosen Lum

<rrosenlum@> wrote:>> > A warm welcome, Sharon. You betcha you can

plan on a long life, as much as anyone on the planet can. Beware of

what you read online, some of the information you come by is outdated

already. When I got diagnosed in '05 I went to the Merck site and

read that I could expect to live about 18 months. What a shocker that

was! And of course it was just very outdated information. My best

source of information has been THIS GROUP. It's a wealth of very

current information, friendly encouragement, empathy and support!> >

About swallowing the pills. They do come in a tiny, 100-mg. size. You

might do better to take four of those rather than the one horse

pill.> > in San Francisco> > > > > @: serenitywon@:

Sat, 31 May 2008 17:37:47 +0000Subject: [ ] New member

Introduction> > > > > G'Morning everyone,My name is Sharon.I am a 40

year old female.I was diagnosed yesterday with Chronic Luekemia(CML).

I have many additional health issues.I have Diabetis,low

cholesterol,chronic Gastritis,IBS,Diverticulosis and Leaky heart

matrial valves. I have had Gastric Bypass surgery and Lapband

surgery.I have malabsorption issues due to this.I am Vit D deficient

and have episodes of anemia when iron infusions are needed.I am often

dehydrated as well.I take medications for all of these issues as well

as MANY vitamins and minerals due to the Gastric Bypass surgery and

my absorption issues.So there is a little history about me.If there

are any questions please feel free to ask.My DR has perscribed Gleevec

(400mg) daily and Zyloprim (100mg) daily.My Dr. is concerned that I

will absorb enough of the medication to help.I know virtually nothing

about this condition and am now researching to see what I can learn.I

thought this support group would be a great place to start. I have a

terrible time taking medications.I can't physically swallow a pill

larger tahn a tylenol due to my Lapband and the stoma opening being

very tiny to help restrict intake.I haven't filled the perscription

yet and am worried about the pill size.Are these meds big? What are

the side effects others here suffer from due to the meds and/or

condition?I have tons of questions but I will just start here for

now.Any info or literature etc to help me find my way would be

wonderful.My Dr. said the word Luekemia often scares people and they

feel it is a life sentence but it is not the case.Is this true?Can I

plan on a long life? I was told not to worry..Is he placading me?Hope

everyone has a great weekend..ThanksSharonS > > > > > > >

__________________________________________________________> Make

every e-mail and IM count. Join the i'm Initiative from Microsoft.>

http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_

MakeCount> >

[Guest guest]

Hi Sharon,

After a while you will get to understand the abbreviations. I will go

through the abbreviations in my signature and then explain what the Zero

Club is.

dxd - diagnosed

INF - a drug name Interferon Alpha - At the time of diagnosis Gleevec was

not an option for me.

CHR - Congestive Heart Failure - This is a nasty side effect of Interferon.

CCR - Complete Cytogenic Response - At diagnosis time a BMB (Bone Marrow

Biopsy) is taken and 20 cells are analyzed. Usually all 20 contain the

Philadelphia Chromosome. When you reach CCR it means that 0/20 cells have

the Philadelphia Chromosome.

Log reduction - This is a mathematical term. A 1 log reduction means that

the number of CML cells in your system has been reduced by a factor of 10. A

2 log reduction means that it has been reduced by 100.

You join the Zero Club when you reach CCR. I will shout out a resounding

O!!! YIPPEEE!!! and assign you a number. My number is 102.

I hope to enroll you very soon,

Zavie

Zavie (age 69)

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

3.5 log reduction Jan/08

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: June 1, 2008 12:41 PM

Subject: Re: [ ] New member Introduction

Zavie,

Thanks for the welcome and info.Great to know that nobody dies.I

was wondering what the Zero club is about in your signature line?Can

you share what the info in the sig line means?I have no idea what all

the adreviations stand for..

Thanks

SharonS

In groups (DOT) <mailto:%40> com, " Zavie miller "

<zmiller@...> wrote:

>

> Hi Sharon,

>

> Welcome to the group.

>

> You will find in us a warm and very knowledgeable group. Ask

questions and

> we will answer them. Even if the questions seem silly, ask and we

will

> respond.

>

> Your doctor is correct. Newly diagnosed CML patients can expect to

live a

> full life. 85% of all newly diagnosed patients can expect to

achieve a

> Complete Cytogenic Response within 18 months of starting Gleevec.

Nobody

> dies. For the remaining 15% who don't do well on Gleevec, there are

several

> new drugs that work where Gleevec doesn't. The future is great. I

was

> diagnosed in 1999 and I'm here today to talk about it.

>

> I know two CML patients who have had gastric bypass and they

continue to do

> well on Gleevec. The 400 mg pill is scored so you can cut them in

half

> easily. Your best solution would be to get a prescription for the

100 mg

> pills. They are very easy to take.

>

> Good luck.

>

> Zavie

>

> Zavie (age 69)

> 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

> 3.5 log reduction Jan/08

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

[Guest guest]

Tammy,

Good thing you have understanding clients. Sure hope I have no

trouble finding foods to eat with the meds.I can't do bread products

or cereal.Lots of other foods I can eat though so I will just try and

see.I also have alot of tiredness and pain.I was hopeing treatment

would improve that.Thanks again.

SharonS

In , " Tammy Ferns " <tammy@...> wrote:

>

> Not normally! Tiredness right now. Occasionally the effect

of " chemo

> brain " . Not being able to think clearly. I am still working, thank

goodness.

> I'm self-employed, so luckily my clients were okay with the

temporary slow

> down while I was adjusting.

> I think the biggest was/is learning what to eat as not to desire to

throw up

> the Gleevec. Has to be a bread product or cereal works best.

> Tammy

>

> _____

[Guest guest]

Marco,

Thanks for the reply and the welcome.I am very lucky to come

across this group as it has been a tremendous help already.Nice to

hear so many people going on with a productive life. Do you have any

side effects from the Gleevec?

Thanks for sharing.

SharonS

In , " Marcos Perreau Guimaraes "

<montereyunderwater@...> wrote:

>

> Hi Sharon,

> Welcome to the group. The cml dx was a shock for all of us, but

things are a

> lot better than how it looks at first. Take your time to adjust to

the

> situation and the treatment, also to learn more about cml. I was dx

in march

> 05 at 38 and have now a normal life, I work, practice all the sports

> activities I used to. I take 400mg of gleevec daily.

> Cheers,

> Marcos.

[Guest guest]

,

You have a great attitude.You found something good to be thankful

for through this.Congrats on the weight lose but a hell of a way to

get it. I am extremely worried about weight gain.I have had 2 wls to

lose 160 pounds and am still not to goal.I am scared I will gain

weight back.I currently suffer from chronic severe constipation.Even

with treatment I struggle to Go 1-2 a week.So a LITTLE diahhrea

probably wouldn't hurt me much except I suffer from dehydration

alot.I know with time I will find my way through this.The unknown is

always the worst.

Thanks again

SharonS

In , " " <katybug45@...> wrote:

>

> Sharon,

> There are alot of side effects to gleevec that you will only

hear

> about from the people taking it. The Gleevec sites do not list all

> the side effects. From my experiance listening to people in the

> groups I have been involved in most people gain weight on Gleevec.

I

> was a differant story. I had such nausea and diarrhea that I lost

85

> pounds the first year that I was on gleevec. That is one thing

about

> gleevec and CML I have been grateful for..lol...I have always been

> overweight and tried absolutely everything to lose, that was the

one

> positive I found right away!....goodluck to you. Oh and if you do

> start retaining too much fluid you can ask your doc to put you on a

> diuretic that helps alot.

> Hugs,

>

>

>

[Guest guest]

Eva,

WOW.. That sounds just like me now..I can get up and moving by

aound 12.Before that I am useless.I am awake just can't function.I

sure hope things don't get worse once I start the treatment..I am

already exhausted and have bone/ joint pain.I also have abdominal

pain and back pain.I am in my p.j's as soon as I am home and done for

the day and don't need to go out for anything.Some days I stay in

them all day as I have NO energy to even shower.I used to shower

twice a day now just the thought wears me out..

Thanks

SharonS

In , " Eva " <evaob365@...> wrote:

>

> Hi, SharonS, I am on 400mg Gleevec for about 7 weeks now and I have

some nausea, bone pain and I am always tired to some degree but I

work full time in a dollar store and have only taken 1 day off

because of muscle spasms and time off for doctor appts. I get up

and I am sore and tired but the days I have taken off , I feel worse.

I find if I just get up and get going, I am distracted and it makes

me feel " normal " to go to work . My evenings are pretty well spent in

my PJ'S. Things do seem to be getting better , some days are better

than others . Take care. Eva B

>

>

> From: serenitywon

> Sent: Sunday, June 01, 2008 12:31 PM

>

> Subject: Re: [ ] New member Introduction

>

>

> Eva,

> Thanks for the welcome.I plan to spend some tie in the file section

> to see what I can learn from there.Are you taking the Gleevec and

are

> you having any side effects?Thanks for sharing..Everything is so

new.

> SharonS

>

> In , " Eva " <evaob365@> wrote:

> >

> > Welcome Sharon, these are the best bunch of people to help you

with

> your concerns . They have real life first hand knowledge. I am only

3

> months into this but these wonderful people have helped me so

much .

> Take care. Eva B dx. March 12 /08

> >

> >

>

>

>

>

>

>

[Guest guest]

It was a period of trial and error, just starting the meds. Keep a diary (or

mental note) of what you eat, and how the Gleevec does. I quickly found out

that I have to have something that soaks up stomach stuff. The first night I

took it I had pizza... did okay. The second night I had steak and

pototo... NO WAY!! Even the compazine didn't help... The third night I had a

very early dinner and didn't have my meds on me, so I had a piece of

toast... not enough. So I tried to eat another piece of toast after I had

taken the medicine. I know to NEVER eat something after I've had the

Gleevec. I hope you can find something to take the Gleevec with!

Tammy

PS... yes, I am VERY lucky my clients have been supportive and

understanding!

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Monday, June 02, 2008 12:59 AM

Subject: [ ] Re: New member Introduction

Tammy,

Good thing you have understanding clients. Sure hope I have no

trouble finding foods to eat with the meds.I can't do bread products

or cereal.Lots of other foods I can eat though so I will just try and

see.I also have alot of tiredness and pain.I was hopeing treatment

would improve that.Thanks again.

SharonS

In groups (DOT) <mailto:%40> com, " Tammy Ferns "

<tammy@...> wrote:

>

> Not normally! Tiredness right now. Occasionally the effect

of " chemo

> brain " . Not being able to think clearly. I am still working, thank

goodness.

> I'm self-employed, so luckily my clients were okay with the

temporary slow

> down while I was adjusting.

> I think the biggest was/is learning what to eat as not to desire to

throw up

> the Gleevec. Has to be a bread product or cereal works best.

> Tammy

>

> _____

[Guest guest]

Esther,

Thanks for sharing that with me..I have a fear of weight gain but

I want to live more.I just hope if it's a gain it is very

minimal..Good luck with the WW.I know the struggles of weight loss.

SharonS

In , snipandtip <no_reply@...> wrote:

>

> -

> Hi Sharon,as far as weight gain with me[everybody is different] in

> the beginning i lost weight because i was throwing up and after a

> while i stayed the same.About 6 to 7 months later i felt like i was

> starving all the time i never felt like this before i was wondering

> if it was the Gleevec, then i gained some weight and now i go to

> weight watchers and it has taken me 4 months to lose 11 pounds.

> I guess it would go faster if i felt like exercising.All i know is

> that i feel better when i'm lighter and with the Gleevec i feel

> better when i don't eat alot.

>

> Esther

>

[Guest guest]

Zavie,

Thanks for the list I saved them.I also hope you add me to the

zero club soon..Glad you made it there also.

SharonS

In , " Zavie miller " <zmiller@...> wrote:

>

> Hi Sharon,

>

> After a while you will get to understand the abbreviations. I will

go

> through the abbreviations in my signature and then explain what the

Zero

> Club is.

>

> dxd - diagnosed

> INF - a drug name Interferon Alpha - At the time of diagnosis

Gleevec was

> not an option for me.

> CHR - Congestive Heart Failure - This is a nasty side effect of

Interferon.

> CCR - Complete Cytogenic Response - At diagnosis time a BMB (Bone

Marrow

> Biopsy) is taken and 20 cells are analyzed. Usually all 20 contain

the

> Philadelphia Chromosome. When you reach CCR it means that 0/20

cells have

> the Philadelphia Chromosome.

> Log reduction - This is a mathematical term. A 1 log reduction

means that

> the number of CML cells in your system has been reduced by a factor

of 10. A

> 2 log reduction means that it has been reduced by 100.

>

> You join the Zero Club when you reach CCR. I will shout out a

resounding

> O!!! YIPPEEE!!! and assign you a number. My number is 102.

>

>

> I hope to enroll you very soon,

>

> Zavie

>

> Zavie (age 69)

> 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

> 3.5 log reduction Jan/08

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf

Of

> serenitywon

> Sent: June 1, 2008 12:41 PM

>

> Subject: Re: [ ] New member Introduction

>

> Zavie,

> Thanks for the welcome and info.Great to know that nobody dies.I

> was wondering what the Zero club is about in your signature line?

Can

> you share what the info in the sig line means?I have no idea what

all

> the adreviations stand for..

> Thanks

> SharonS

>

> In groups (DOT) <mailto:%40> com, " Zavie

miller "

> <zmiller@> wrote:

> >

> > Hi Sharon,

> >

> > Welcome to the group.

> >

> > You will find in us a warm and very knowledgeable group. Ask

> questions and

> > we will answer them. Even if the questions seem silly, ask and we

> will

> > respond.

> >

> > Your doctor is correct. Newly diagnosed CML patients can expect

to

> live a

> > full life. 85% of all newly diagnosed patients can expect to

> achieve a

> > Complete Cytogenic Response within 18 months of starting Gleevec.

> Nobody

> > dies. For the remaining 15% who don't do well on Gleevec, there

are

> several

> > new drugs that work where Gleevec doesn't. The future is great. I

> was

> > diagnosed in 1999 and I'm here today to talk about it.

> >

> > I know two CML patients who have had gastric bypass and they

> continue to do

> > well on Gleevec. The 400 mg pill is scored so you can cut them in

> half

> > easily. Your best solution would be to get a prescription for the

> 100 mg

> > pills. They are very easy to take.

> >

> > Good luck.

> >

> > Zavie

> >

> > Zavie (age 69)

> > 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

> > 3.5 log reduction Jan/08

> > 3.6 log reduction Apr/08

> > e-mail: zmiller@

> > Tel: 613-726-1117

> > Fax: 309-296-0807

> > Cell: 613-202-0204

> > ID: zaviem

> > YM: zaviemiller

> > Skype: Zavie

> >

>

>

>

>

[Guest guest]

Now not really. Maybe a little more colds than average, and I bruise a

little more than before cml, but it's very reasonnable (I bump knees quite

often at the climbing wall). Some moderate side pain once in a while. It's

often hard to say if it is related to cml or gleevec, but so far I am doing

pretty good. I just did a check up before some deep dives and everything is

A-ok. Exercising (moderately at first) helped me, body and head.

Marcos.

On Sun, Jun 1, 2008 at 10:02 PM, serenitywon <serenitywon@...> wrote:

> Marco,

> Thanks for the reply and the welcome.I am very lucky to come

> across this group as it has been a tremendous help already.Nice to

> hear so many people going on with a productive life. Do you have any

> side effects from the Gleevec?

> Thanks for sharing.

> SharonS

>

> In <%40>, " Marcos Perreau

> Guimaraes "

> <montereyunderwater@...> wrote:

> >

> > Hi Sharon,

> > Welcome to the group. The cml dx was a shock for all of us, but

> things are a

> > lot better than how it looks at first. Take your time to adjust to

> the

> > situation and the treatment, also to learn more about cml. I was dx

> in march

> > 05 at 38 and have now a normal life, I work, practice all the sports

> > activities I used to. I take 400mg of gleevec daily.

> > Cheers,

> > Marcos.

>

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

G'day Sharon - welcome to our select little club. I have been away for a few

days so just catching up on emails.

My goodness you certainly have got the short straw in a lot of ways! It's

funny (well not really), I have had IBS and then went on to develop

inflammatory bowel disease, but fortunately no problems with Glivec in that

area. It must be very frustrating for you. I know a lot of people on this

list have problems taking magnesium supplements (I take 3 x 500mg tabs twice

a day to prevent muscle spasms) and has never been a bother.

In the early days of taking Glivec (seems a lifetime a way, but was only

last September), I had reflux and took a prescribed tablet of a night which

stopped the reflux and only needed it for a short time.

I know after wading through emails some have said you shouldn't cut the

tablets, but I do as I'm only currently taking 200mg a day due to other side

effects and I've had no problem doing this. In the leaflet, it does say you

can dissolve the tablet in water, so that sounds the best way for you. I

really think personally that you need to try and have food that has

" substance " to prevent the gastritis/reflux. Perhaps in some custard? I

avoid eating anything acidic like stewed fruit at the same time as this will

cause problems for me.

With regards to a long life? Well my GP said the same thing to me and I

believe him! We are so lucky to have been diagnosed now with all these

wonder drugs that have been developed and even though I may have to change

from Glivec, I have had a wonderful response and like you was only caught in

the very early stages of disease progression when my white cells started to

rise.

This group really is fantastic in the support and knowledge that is shared.

Regards,

from Down Under

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Sunday, 1 June 2008 3:38 AM

Subject: [ ] New member Introduction

G'Morning everyone,

My name is Sharon.I am a 40 year old female.I was diagnosed

yesterday with Chronic Luekemia(CML). I have many additional health

issues.I have Diabetis,low cholesterol,chronic

Gastritis,IBS,Diverticulosis and Leaky heart matrial valves. I have

had Gastric Bypass surgery and Lapband surgery.I have malabsorption

issues due to this.I am Vit D deficient and have episodes of anemia

when iron infusions are needed.I am often dehydrated as well.I take

medications for all of these issues as well as MANY vitamins and

minerals due to the Gastric Bypass surgery and my absorption

issues.So there is a little history about me.If there are any

questions please feel free to ask.

My DR has perscribed Gleevec(400mg) daily and Zyloprim (100mg)

daily.My Dr. is concerned that I will absorb enough of the medication

to help.I know virtually nothing about this condition and am now

researching to see what I can learn.I thought this support group

would be a great place to start. I have a terrible time taking

medications.I can't physically swallow a pill larger tahn a tylenol

due to my Lapband and the stoma opening being very tiny to help

restrict intake.I haven't filled the perscription yet and am worried

about the pill size.Are these meds big? What are the side effects

others here suffer from due to the meds and/or condition?

I have tons of questions but I will just start here for now.Any

info or literature etc to help me find my way would be wonderful.

My Dr. said the word Luekemia often scares people and they feel it

is a life sentence but it is not the case.Is this true?Can I plan on

a long life? I was told not to worry..Is he placading me?

Hope everyone has a great weekend..

Thanks

SharonS

[Guest guest]

,

Thank you for the reply.My comments are inline below..

In , " Malseed " <rodorbal@...> wrote:

>

> G'day Sharon - welcome to our select little club. I have been away

for a few

> days so just catching up on emails.

>

>

>

> My goodness you certainly have got the short straw in a lot of

ways! It's

> funny (well not really), I have had IBS and then went on to develop

> inflammatory bowel disease, but fortunately no problems with Glivec

in that

> area. It must be very frustrating for you. I know a lot of people

on this

> list have problems taking magnesium supplements (I take 3 x 500mg

tabs twice

> a day to prevent muscle spasms) and has never been a bother.

>========================

I hope I don't have trouble with the magnesium I take oxide and

citrate..

>

>

> In the early days of taking Glivec (seems a lifetime a way, but was

only

> last September), I had reflux and took a prescribed tablet of a

night which

> stopped the reflux and only needed it for a short time.

+++++++++++++++++++++++++==

I take protonix daily for my GERD/Gastritis.So hopefully that will

help..Glad you're doing better..

> I know after wading through emails some have said you shouldn't cut

the

> tablets, but I do as I'm only currently taking 200mg a day due to

other side

> effects and I've had no problem doing this. In the leaflet, it does

say you

> can dissolve the tablet in water, so that sounds the best way for

you. I

> really think personally that you need to try and have food that has

> " substance " to prevent the gastritis/reflux. Perhaps in some

custard? I

> avoid eating anything acidic like stewed fruit at the same time as

this will

> cause problems for me.

++++++++++++++++++++++++++++++=

I had the script changed to the smaller 100mg tablets so I can

swallow them.I eat very little food due to WLS.I can only eat about

1/2c.food at a time.I am also limited on WHAT I can eat.No

bread,rice,noodles,junk food,most fruits w/skins,milk and some meats

also.I hope to find something that works and am able to eat enough of

it to help.

>

>

> With regards to a long life? Well my GP said the same thing to me

and I

> believe him! We are so lucky to have been diagnosed now with all

these

> wonder drugs that have been developed and even though I may have to

change

> from Glivec, I have had a wonderful response and like you was only

caught in

> the very early stages of disease progression when my white cells

started to

> rise.

=========================

I also feel very fortunate to have caught it early and have such

medicine available to us.Hope you are doing better now.

>

>

> This group really is fantastic in the support and knowledge that is

shared.

>

>

>

> Regards,

>

>

>

> from Down Under

-------------------------------

Yes this group is fantastic.I feel blessed to have all of you..Thanks

for all the info and help.

SharonS

[Guest guest]

Hi ,

Do you have an article in this weekends CCT??

Please let me know.

Hope all is well

Your neighbor in Discovery Bay

Sharon T

_____

From: [mailto: ] On Behalf Of

Rosen Lum

Sent: Sunday, June 01, 2008 9:46 AM

Subject: RE: [ ] New member Introduction

Me too! I write about religion for the news pages. I had a story in

Saturday's paper about a Polish school and I'll have one in tomorrow's paper

about the persecution of Baha'is in Iran. Gee, this is great!!

groups (DOT) <mailto:%40> com

From: onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net

Date: Sat, 31 May 2008 23:01:22 -0700

Subject: RE: [ ] New member Introduction

You do---I get that paper every day. What do you write????

I am so excited.

sharon

[ ] New member Introduction> > >

> > G'Morning everyone,My name is Sharon.I am a 40 year old female.I was

diagnosed yesterday with Chronic Luekemia(CML). I have many additional

health issues.I have Diabetis,low cholesterol,chronic

Gastritis,IBS,Diverticulosis and Leaky heart matrial valves. I have had

Gastric Bypass surgery and Lapband surgery.I have malabsorption issues due

to this.I am Vit D deficient and have episodes of anemia when iron infusions

are needed.I am often dehydrated as well.I take medications for all of these

issues as well as MANY vitamins and minerals due to the Gastric Bypass

surgery and my absorption issues.So there is a little history about me.If

there are any questions please feel free to ask.My DR has perscribed

Gleevec(400mg) daily and Zyloprim (100mg) daily.My Dr. is concerned that I

will absorb enough of the medication to help.I know virtually nothing about

this condition and am now researching to see what I can learn.I thought this

support group would be a great place to start. I have a terrible time taking

medications.I can't physically swallow a pill larger tahn a tylenol due to

my Lapband and the stoma opening being very tiny to help restrict intake.I

haven't filled the perscription yet and am worried about the pill size.Are

these meds big? What are the side effects others here suffer from due to the

meds and/or condition?I have tons of questions but I will just start here

for now.Any info or literature etc to help me find my way would be

wonderful.My Dr. said the word Luekemia often scares people and they feel it

is a life sentence but it is not the case.Is this true?Can I plan on a long

life? I was told not to worry..Is he placading me?Hope everyone has a great

weekend..ThanksSharonS > > > > > > >

__________________________________________________________> Make every

e-mail and IM count. Join the i'm Initiative from Microsoft.>

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