Re: Just getting introduced

[Guest guest]

Ask any question you want. It will take some time to adjust, but

be patient and soon she will adjust to any side affects she may

have. Some patients never have any side affects or the ones

they do have dissipate over time.

God bless you for being supportive of her. You will find people

to come and help you wherever you go. Only advice I can give

is let them help and over time you will both see the blessings

of having CML instead of less treatable forms of Leukemia.

You will also get some laughs from this site from time to time

and some disagreement on terms or treatments, but we all

want to get information out to you as best we can.

Tell her she can look forward to being in Zavie's zero club and

see his " Yipee " email.

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/26/2007 2:01:10 P.M. Eastern Standard Time,

monkeyfun_16901@... writes:

Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you all

can relate and I guess thats what were looking for. Still blown away

by it all as she does not look or act sick but the blood work and bone

marrow don't lie. She will be starting on Gleevec next week and we

have no idea what to expect. We have a three year old daughter and of

course being around to watch her grow is the priority. I will be doing

some browsing and don't want to ask questions allready asked a million

times but would love a few words from others with small children or

who had small children and are still around watching them grow I'm

sure that would give my wife tons of needed encouragement. I'm sure I

have lots to learn and will ask a million questions but for now

hello.

************************************** See what's new at http://www.aol.com

[Guest guest]

See, I told some of you newbies we are a jovial bunch!

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/26/2007 3:16:10 P.M. Eastern Standard Time,

traceyincanada@... writes:

>> For the most part, all side effects are tolerable. They tend to

occur in the

> first month of starting Gleevec and ten disappear.

****************************************

Some people have only seven or eight disappear but if you're lucky, all

10 will go.

Zavie, I couldn't resist

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi Ray,

Welcome to the club that nobody wants to be a member of.

The really good news is that for most people (> 85%) who have CML and take

Gleevec, their lives are normal. This includes some rare cases where they

have gone on to have children

For the most part, all side effects are tolerable. They tend to occur in the

first month of starting Gleevec and ten disappear.

I guess what I am saying is that she will be able to live a full life and

watch your daughter grow into a woman.

Just ask questions.

Zavie

_____

From: [mailto: ] On Behalf Of

monkeyfun_16901

Sent: October 26, 2007 1:46 PM

Subject: [ ] Just getting introduced

Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you all

can relate and I guess thats what were looking for. Still blown away

by it all as she does not look or act sick but the blood work and bone

marrow don't lie. She will be starting on Gleevec next week and we

have no idea what to expect. We have a three year old daughter and of

course being around to watch her grow is the priority. I will be doing

some browsing and don't want to ask questions allready asked a million

times but would love a few words from others with small children or

who had small children and are still around watching them grow I'm

sure that would give my wife tons of needed encouragement. I'm sure I

have lots to learn and will ask a million questions but for now

hello.

[Guest guest]

>> For the most part, all side effects are tolerable. They tend to

occur in the

> first month of starting Gleevec and ten disappear.

****************************************

Some people have only seven or eight disappear but if you're lucky, all

10 will go.

Zavie, I couldn't resist

[Guest guest]

Hi Ray, I'm Dana, and my husband, , was diagnosed in 2003, when our daughter

was almost 3. At the time, we were trying hard to have another child so we went

from hoping to expand our family to simply hoping that would be around for

as many birthdays as possible. It took us several months to finally be willing

to admit to ourselves that what our doctor was saying was true, could very

well live long enough to see his daughter graduate, get married, and hopefully

have children of her own! In fact, he could very well live a long life and end

up dying from something unrelated to CML!

Since then, we've been blessed by another daughter and she is now 2 1/2. She is

our Gleevec baby. One think you will find is that trying to have a baby on

Gleevec is different for women and men, and women are encouraged to go off

Gleevec if they want to try to have a child but there have been many men who

have fathered children while on Gleevec with no problems. Don't let that

discourage you, though, because there are documented cases of women doing very

well on Gleevec and eventually (with their doctor's guidance) going off Gleevec

and having babies.

Please tell your wife that she has a lot of life to live. Enjoy every day with

your daughter, but know that there is every possiblity that you and your wife

will have many, many, many years together.

I'm happy to talk more if you ever want.

Hugs,

Dana

[ ] Just getting introduced

Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you

all

can relate and I guess thats what were looking for. Still blown away

by it all as she does not look or act sick but the blood work and bone

marrow don't lie. She will be starting on Gleevec next week and we

have no idea what to expect. We have a three year old daughter and of

course being around to watch her grow is the priority. I will be doing

some browsing and don't want to ask questions allready asked a million

times but would love a few words from others with small children or

who had small children and are still around watching them grow I'm

sure that would give my wife tons of needed encouragement. I'm sure I

have lots to learn and will ask a million questions but for now

hello.

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[Guest guest]

Rats…. Someone stole an H.

Zavie

_____

From: [mailto: ] On Behalf Of Tracey

Sent: October 26, 2007 4:03 PM

Subject: Re: [ ] Just getting introduced

>> For the most part, all side effects are tolerable. They tend to

occur in the

> first month of starting Gleevec and ten disappear.

****************************************

Some people have only seven or eight disappear but if you're lucky, all

10 will go.

Zavie, I couldn't resist

[Guest guest]

Ray--

My husband is the one with CML. We have a 1 1/2 yr old. My husband was diagnosed

when our son was 2 months old. Shocker to say the least. I could tell you a

thousand things, but the most important one: the odds are OVERWHELMING that your

wife will live a normal lifespan!!! Gleevec and Spryrcel are wonder drugs and

have changed the face of this disease. My husband was on Gleevec for about 7

months and was one of the few people who developed liver intolerance. and had to

stop Gleevec. He is now on Sprycel and doing wonderfully. Yes, he lives each day

with cancer, and will continue to do so until a cure is found. The fact that he

has cancer sometimes makes things seem hard...especially for the first year or

so, you are just so scared of the " unknown " . My husband and I are testaments to

the fact that it will get easier...once you guys start learning about the

disease, get through some initial side affects, and learn to accept that your

wife lives with cancer, life will start getting back to normal...yes, you might

have a new " norm " , but you will settle into it with time. You will get to know

of a Dr. Druker--the doc responsible for bringing us Gleevec. We traveled

up to Oregon in July to consult with him. He is a wonderful amazing man whose

mission it is to cure this disease. He (with a humble smile on his face) will be

the first to tell you that most people living with CML in this day and age will

live a normal life span, but they have to stay on these medications.

Good luck to your family, continue to use this forum to ask questions and

hopefully you are comforted by my words...

Cervera

From: monkeyfun_16901@...

Date: Fri, 26 Oct 2007 17:45:48 +0000

Subject: [ ] Just getting introduced

Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you

all

can relate and I guess thats what were looking for. Still blown away

by it all as she does not look or act sick but the blood work and bone

marrow don't lie. She will be starting on Gleevec next week and we

have no idea what to expect. We have a three year old daughter and of

course being around to watch her grow is the priority. I will be doing

some browsing and don't want to ask questions allready asked a million

times but would love a few words from others with small children or

who had small children and are still around watching them grow I'm

sure that would give my wife tons of needed encouragement. I'm sure I

have lots to learn and will ask a million questions but for now

hello.

_________________________________________________________________

Peek-a-boo FREE Tricks & Treats for You!

http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us

[Guest guest]

Hi, Ray,

I have two boys 8 and 12 and it is great watching them grow! I feel

so fortunate to have the medication, Gleevec, and all the wonderful

care and help that is available. The boys have taken the news of my

illness very well--although I know they worry some--I have told them

all about Gleevec and the fact that it is controlling my disease, sort

of like insulin with diabetes--it controls it, but not a cure exactly.

I told them I plan to be around to be a little old lady, when I will

come and live with them and be a real pest! They laugh about that,

but I honestly think it is true. We try to laugh a lot and not get

too serious when talking about the illness, and I give them lots of

information, as they seem very able to digest things and read about

the disease--it is comforting to them to have good information about

what the prognosis is and how well the Gleevec is working. THere are

lots of positive articles out there that are written in a way that

even a 9 year old can understand, so I believe that education is the

key to giving your kids a real sense of peace about things. That and

the fact that we pray a lot together, and trust God for our health,

too! No small thing!

Take care and good luck. Don't be discouraged or depressed. If you

have to get a type of cancer, CML is probably one of the better ones

to get, especially now. I know that sounds weird, but I have really

gotten a new appreciation for so many things since having this

illness. If you have cable TV available, watch a show called 'Crazy,

Sexy Cancer. " It is not about CML, but about a young woman's attitude

toward her cancer, and how she made it her " friend " and felt it had

broadened her horizons, and she wouldn't change the experience, even

though she is very seriously ill. It was a great show and really

inspired me.

Best wishes,

Vicki Schepman

Lynnwood, WA

--- In , " monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you all

> can relate and I guess thats what were looking for. Still blown away

> by it all as she does not look or act sick but the blood work and bone

> marrow don't lie. She will be starting on Gleevec next week and we

> have no idea what to expect. We have a three year old daughter and of

> course being around to watch her grow is the priority. I will be doing

> some browsing and don't want to ask questions allready asked a million

> times but would love a few words from others with small children or

> who had small children and are still around watching them grow I'm

> sure that would give my wife tons of needed encouragement. I'm sure I

> have lots to learn and will ask a million questions but for now

> hello.

>

[Guest guest]

--- In , " monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you

all

> can relate and I guess thats what were looking for. Still blown

away

> by it all as she does not look or act sick but the blood work and

bone

> marrow don't lie. She will be starting on Gleevec next week and we

> have no idea what to expect. We have a three year old daughter and

of

> course being around to watch her grow is the priority. I will be

doing

> some browsing and don't want to ask questions allready asked a

million

> times but would love a few words from others with small children or

> who had small children and are still around watching them grow I'm

> sure that would give my wife tons of needed encouragement. I'm

sure I

> have lots to learn and will ask a million questions but for now

> hello.

>

Hi Ray, My husband was diagnosed in 2001. It was a jolt for us.

Nick has been a real trooper keeping up with all the treatment plans,

Dr. changes, test results, side-effects with Gleevec, and trying to

figure out how to define himself throughout all this. I go with him

to all Dr visits. I am the designated " listener " . I listen to my

husband, too. I'm his " sounding board " when he's feeling really

down. Cuts & bruising are side effects....even the side of the

bathtub gives him cuts and bruises. We tease about his " fights with

aligators in the bathtub. " A good laugh helps keep a perspective on

continuing to live life to the fullest. You need to know your wife

might experience deep bone pain within the next 2 months. When/if

she does, please be as supportive as you can. I can't imagine the

level of pain, but know it must be awful. It doesn't last, but it

was intense while he had it. Get used to keeping a quilt or warm

blanket around all the time for your wife to wrap up in. Gleevec

patients are always subject to cold-even though you think it's a warm

day. Gleevec patients also become very tired and have to sleep. Then

on the " Up Days " Gleevec people have bursts of cognitive and physical

stamina so they feel very good. Enjoy those days, too. Please take

care of yourself, Ray. I'm very thankful for my family & church

family. My faith and family help keep me healthy and hopeful. (As

they do for my husband of 47 years. We love each other very much. He

& I support one another in good times and in the tough times.)

a spouse,

[Guest guest]

Hi Ray,

My husband was diagnosed in June of last year. We have 3 children

aged 9, 6, and 3. We have had a lot of ups and downs in his

treatment, but keeping a positive attitude is key. The one thing that

happened right a way was a phenomenon we call the cancer filter. When

you get news like that your priorities realign immediately. We

automatically filter out any activities that aren't important or that

may cause stress to the family. We spend much more time as a family

now, and I think the time we do spend now is cherished so much more.

In a way it was a positive thing--the diagnosis. We are seeing life

with new eyes and appreciate all goodness that comes our way. We are

living so we have no regrets. What a wonderful epiphany--it's just

too bad it took a cancer diagnosis to get us there. There are so many

people out there willing to lend their support and answer you

questions. Health and happiness to you, your wife and your daughter.

Coralee

On Oct 27, 2007, at 10:46 AM, Nick Woods wrote:

>

> >

> > Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you

> all

> > can relate and I guess thats what were looking for. Still blown

> away

> > by it all as she does not look or act sick but the blood work and

> bone

> > marrow don't lie. She will be starting on Gleevec next week and we

> > have no idea what to expect. We have a three year old daughter and

> of

> > course being around to watch her grow is the priority. I will be

> doing

> > some browsing and don't want to ask questions allready asked a

> million

> > times but would love a few words from others with small children or

> > who had small children and are still around watching them grow I'm

> > sure that would give my wife tons of needed encouragement. I'm

> sure I

> > have lots to learn and will ask a million questions but for now

> > hello.

> >

> Hi Ray, My husband was diagnosed in 2001. It was a jolt for us.

> Nick has been a real trooper keeping up with all the treatment plans,

> Dr. changes, test results, side-effects with Gleevec, and trying to

> figure out how to define himself throughout all this. I go with him

> to all Dr visits. I am the designated " listener " . I listen to my

> husband, too. I'm his " sounding board " when he's feeling really

> down. Cuts & bruising are side effects....even the side of the

> bathtub gives him cuts and bruises. We tease about his " fights with

> aligators in the bathtub. " A good laugh helps keep a perspective on

> continuing to live life to the fullest. You need to know your wife

> might experience deep bone pain within the next 2 months. When/if

> she does, please be as supportive as you can. I can't imagine the

> level of pain, but know it must be awful. It doesn't last, but it

> was intense while he had it. Get used to keeping a quilt or warm

> blanket around all the time for your wife to wrap up in. Gleevec

> patients are always subject to cold-even though you think it's a warm

> day. Gleevec patients also become very tired and have to sleep. Then

> on the " Up Days " Gleevec people have bursts of cognitive and physical

> stamina so they feel very good. Enjoy those days, too. Please take

> care of yourself, Ray. I'm very thankful for my family & church

> family. My faith and family help keep me healthy and hopeful. (As

> they do for my husband of 47 years. We love each other very much. He

> & I support one another in good times and in the tough times.)

> a spouse,

>

>

>

This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

[Guest guest]

Coralee,

Thank you for that comment. I am newly diagnosed and have already been

experiencing

what you call the " cancer filter " . The strangest thing is I'm experiencing less

anxiety than I

ever have in my life. (Trust me, I have a disorder) and I just suddenly decided

that there

just wasn't that much to get anxious over. So, strangly, this has brought a lot

of positives

to me.

Take care,

H.

> > >

> > > Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you

> > all

> > > can relate and I guess thats what were looking for. Still blown

> > away

> > > by it all as she does not look or act sick but the blood work and

> > bone

> > > marrow don't lie. She will be starting on Gleevec next week and we

> > > have no idea what to expect. We have a three year old daughter and

> > of

> > > course being around to watch her grow is the priority. I will be

> > doing

> > > some browsing and don't want to ask questions allready asked a

> > million

> > > times but would love a few words from others with small children or

> > > who had small children and are still around watching them grow I'm

> > > sure that would give my wife tons of needed encouragement. I'm

> > sure I

> > > have lots to learn and will ask a million questions but for now

> > > hello.

> > >

> > Hi Ray, My husband was diagnosed in 2001. It was a jolt for us.

> > Nick has been a real trooper keeping up with all the treatment plans,

> > Dr. changes, test results, side-effects with Gleevec, and trying to

> > figure out how to define himself throughout all this. I go with him

> > to all Dr visits. I am the designated " listener " . I listen to my

> > husband, too. I'm his " sounding board " when he's feeling really

> > down. Cuts & bruising are side effects....even the side of the

> > bathtub gives him cuts and bruises. We tease about his " fights with

> > aligators in the bathtub. " A good laugh helps keep a perspective on

> > continuing to live life to the fullest. You need to know your wife

> > might experience deep bone pain within the next 2 months. When/if

> > she does, please be as supportive as you can. I can't imagine the

> > level of pain, but know it must be awful. It doesn't last, but it

> > was intense while he had it. Get used to keeping a quilt or warm

> > blanket around all the time for your wife to wrap up in. Gleevec

> > patients are always subject to cold-even though you think it's a warm

> > day. Gleevec patients also become very tired and have to sleep. Then

> > on the " Up Days " Gleevec people have bursts of cognitive and physical

> > stamina so they feel very good. Enjoy those days, too. Please take

> > care of yourself, Ray. I'm very thankful for my family & church

> > family. My faith and family help keep me healthy and hopeful. (As

> > they do for my husband of 47 years. We love each other very much. He

> > & I support one another in good times and in the tough times.)

> > a spouse,

> >

> >

> >

>

>

> This email has been scanned by Barracuda Network's Anti-Virus and Spam

Firewall.

>

>

>

[Guest guest]

Hi Ray,

Tell your wife welcome. I was dx'd in 7/2003. I am 69 yrs have two

children, 4 grand children and 3 great grandchildren. The members of

this list will prove to be a lifeline for both of you. The group has

taken me through several bad moments. She will do well on Gleevec it

just takes some adjusting. It has worked well for me. Her side effects

may be minimal. Let's hope so!

Take care,

Joan Porter

ville, Fl

dx'd 7/2003

Zavie #662

[Guest guest]

Hi All,

The posts today have been very reassuring I seem to

have been in a bit of a slump since my latest BMA

showed still 96% Phylly C's (after 3 mos on Gleevec).

I am from England and have lived happily in the US for

the last 19 years. I thought I had decided I need to

return home and be around my family in case Gleevec

didn't work out for me so I could get my children more

familiarized with my family but after reading todays

posts I feel maybe there is a chance I can be here for

my kids too. I live on the brink of crying all the

time please tell me this will get better?

Donna x

--- In , " monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, I'm Ray, My wife was diagnosed with cml on Sat. Of course you

all

> can relate and I guess thats what were looking for. Still blown

away

> by it all as she does not look or act sick but the blood work and

bone

> marrow don't lie. She will be starting on Gleevec next week and

we

> have no idea what to expect. We have a three year old daughter

and of

> course being around to watch her grow is the priority. I will be

doing

> some browsing and don't want to ask questions allready asked a

million

> times but would love a few words from others with small children

or

> who had small children and are still around watching them grow I'm

> sure that would give my wife tons of needed encouragement. I'm

sure I

> have lots to learn and will ask a million questions but for now

> hello.

>

[Guest guest]

Donna--You shouldn't feel badly--The CML specialist I spoke to said what

they look for after 6 months is at least a 5% reduction in the Phillies (for

me, that would be down to 95%). After a year, he said they want more. If I

miss the 5% reduction, then he suggests I try Sprycel. You're only 3 months

in. Way to early to worry.