Re: I was just diagnosed

March 25, 2007

Dear Adrienne, I am so sorry you are now one of us, but you have come to a

good place for help, support, and loads of information on CML. When I was

diagnosed I thought it was an immediate death sentence, but I know people who

have had CML for many, many years and live fairly normal lives, so don't totally

freak.

I am glad you got on Gleevec, it is a good drug but has some side effects,

but you will learn to manage those with the help of your doctors and this

group.

I can not imagine being 15 and having CML, but you have youth on your side.

I think it is harder when we are older to manage some of the side effects.

I, too, had the same exact symptoms that you had, and for a whole year my

doctor told me it was stress. Well, finally they found out my WBC count was

almost 100,000 so they started taking me seriously.

I have two daughters and watch them like a hawk for any signs of cancer, it

runs in our family. Right now, my 21 year old daughter is showing precancer

cells in her pap smears.

There are a few younger people on our lists, so maybe you can get together

with them online and chat. They'd probably be really happy to share with you

their story and how they deal with it.

We are all pulling for you, so no matter what you have a huge, caring

support group. Hugs, Lynne A.

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March 25, 2007

HI Adrienne,

I am pretty new here myself having been diagnosed just a month ago and am

much older, 41. I cannot say I know how you feel as I am not in high school

dealing with this. However, there are several mom's on here that post about

their teenagers with CML, and they have had it for some time. I bet you will

be able to find some camaraderie with them, for sure.

The only thing I know for sure is I have already gotten used to the fact I

have this. The first few weeks were hard for me to believe this was true, but

then back to the oncologist for a visit and back again a few days later. It

became real apparent this was true. Now a very close friend has the same

oncologist, different diagnoses, but we have found a bound in getting through

this together.

The only thing I know to tell you about this and any other pressing times in

life is to stay positive. I think my positive attitude has startled my

family and friends, even my Dr thinks I am odd in how I am handling this. I

am

a morning person anyway, so I just stay that way all day. It has really

gotten me through this first month and I pray forever.

There are lots of good folks on this site that already have helped me. I do

not post often, however as a newbie myself, I thought my perspective might

help.

Sincerely,

Chris

Dx 03/01/07

Gleevec 400Mg

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March 25, 2007

hi! thanks for the kind words...i wad diagnosed october of last year and still

trying to cope up with the situation i am into right now...

it feels good to have new friends like you even through emails only..thanks a

lot and Godbless......

letitbe@... wrote:

HI Adrienne,

I am pretty new here myself having been diagnosed just a month ago and am

much older, 41. I cannot say I know how you feel as I am not in high school

dealing with this. However, there are several mom's on here that post about

their teenagers with CML, and they have had it for some time. I bet you will

be able to find some camaraderie with them, for sure.

The only thing I know for sure is I have already gotten used to the fact I

have this. The first few weeks were hard for me to believe this was true, but

then back to the oncologist for a visit and back again a few days later. It

became real apparent this was true. Now a very close friend has the same

oncologist, different diagnoses, but we have found a bound in getting through

this together.

The only thing I know to tell you about this and any other pressing times in

life is to stay positive. I think my positive attitude has startled my

family and friends, even my Dr thinks I am odd in how I am handling this. I am

a morning person anyway, so I just stay that way all day. It has really

gotten me through this first month and I pray forever.

There are lots of good folks on this site that already have helped me. I do

not post often, however as a newbie myself, I thought my perspective might

help.

Sincerely,

Chris

Dx 03/01/07

Gleevec 400Mg

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March 25, 2007

I can understand what you went through.

In December, I went for a routine physical.

When my bloodwork came back, the doctor referred me to a

hemotologist/oncologist who sent me to the ER, ASAP. Before you know it I was

getting a catscan to look at my enlarged spleen and I was told I had CML. My

WBC count was at 190,000.

I was terrified. I am a 35 year old father of two little girls and I was just

told I have cancer. My Oncologist was great. I have been on Gleevec and am

doing great. My last CBC was 100% normal.

Hang in there.

Efrem

addieoh <addieoh@...> wrote:

Hi my name is Adrienne. I was diagnosed with CML march 9th so about

two weeks ago. I'm a 15 year old girl so that is pretty uncommon.

I've been having dizzy spells since november. My doctor originally

thought it was stress. I continued getting dizzy spells so on march

1st we called the doctor to get an appointment. The day after we got

the appointment, I noticed that my whole left side of my stomach was

hard when I pushed on it. I thought it was a tumor. Well we went to

the doctor and as soon as he felt my stomach he wanted me to get

blood work done and a catscan. I gave the blood and went to a

hospital to get my catscan. The catscan showed I had an enlarged

spleen. We had no idea why so we waited for the bloodwork to come

back. Meanwhile I went home. My parents and I were watching a movie

and I fell asleep. At 11 PM the doctor called and wanted me to go to

the hospital immediately. I was freaked out. On the way, my parents

told me that the blood work showed that I had way too many white

blood cells. I'm a sophomore in high school. I knew that meant

cancer. So I became scared. The next morning it was official. I have

CML. Thank the Lord for Gleevac though. When I went into the

hospital my WBC count was 265,000 and two days ago it was 30,000. I

was in the hospital for about a week and a half. I'm home now

though. It's pretty hard to adjust though. It's really weird to

think " I'm a cancer patient " .

I just need people to talk to who understand what I'm going through.

March 25, 2007

Hi Adrienne,

Welcome to our group, although I'm sorry you have CML. You may have

the dubious honour of being our youngest posting member but rest

assured that you're not alone. There are a couple of parents who

post for their teenagers so although CML is quite rare in young

people, they unfortunately aren't exempt from getting it (as you've

found out).

The good news is that Gleevec works FANTASTICALLY for the vast

majority of people and the even better news is that there are several

new drugs out (or about to come out), for the few who don't respond

to Gleevec.

There is every reason in the world to expect to live out a normal

life span, even the top doctors in the world have said this. CML is

no longer a death sentence, but rather a chronic condition that can

be treated and controlled. We have a member here who has had CML for

close to 30 years and this was before all these great new drugs were

available so try not to worry too much.

If you have any questions, please don't be shy. I'm sure there will

be someone in the group who can help.

Take care,

Tracey

dx Jan 2002

>

> Hi my name is Adrienne. I was diagnosed with CML march 9th so about

> two weeks ago. I'm a 15 year old girl so that is pretty uncommon.

>

> I've been having dizzy spells since november. My doctor originally

> thought it was stress. I continued getting dizzy spells so on march

> 1st we called the doctor to get an appointment. The day after we

got

> the appointment, I noticed that my whole left side of my stomach

was

> hard when I pushed on it. I thought it was a tumor. Well we went to

> the doctor and as soon as he felt my stomach he wanted me to get

> blood work done and a catscan. I gave the blood and went to a

> hospital to get my catscan. The catscan showed I had an enlarged

> spleen. We had no idea why so we waited for the bloodwork to come

> back. Meanwhile I went home. My parents and I were watching a movie

> and I fell asleep. At 11 PM the doctor called and wanted me to go

to

> the hospital immediately. I was freaked out. On the way, my parents

> told me that the blood work showed that I had way too many white

> blood cells. I'm a sophomore in high school. I knew that meant

> cancer. So I became scared. The next morning it was official. I

have

> CML. Thank the Lord for Gleevac though. When I went into the

> hospital my WBC count was 265,000 and two days ago it was 30,000. I

> was in the hospital for about a week and a half. I'm home now

> though. It's pretty hard to adjust though. It's really weird to

> think " I'm a cancer patient " .

>

> I just need people to talk to who understand what I'm going through.

>

March 25, 2007

Hello to all you newly Dx'ed I am sorry your have to

be here, on the other hand these people are just

great. Very caring, lots of great information.

I was dx'ed 29 years ago and I feel good.

with all the new drugs which I did not have

I am sure you will all be like me a grumpy

old grandpop or granny some day.

Take the stress out of your lives

and live today and let tomorrow worry about

itself.

SkipD

Dx'ed 1978

my dirary http://easyskip.tripod.com

--- letitbe@... wrote:

> HI Adrienne,

>

> I am pretty new here myself having been diagnosed

> just a month ago and am

> much older, 41. I cannot say I know how you feel as

> I am not in high school

> dealing with this. However, there are several mom's

> on here that post about

> their teenagers with CML, and they have had it for

> some time. I bet you will

> be able to find some camaraderie with them, for

> sure.

>

> The only thing I know for sure is I have already

> gotten used to the fact I

> have this. The first few weeks were hard for me to

> believe this was true, but

> then back to the oncologist for a visit and back

> again a few days later. It

> became real apparent this was true. Now a very

> close friend has the same

> oncologist, different diagnoses, but we have found a

> bound in getting through

> this together.

>

> The only thing I know to tell you about this and any

> other pressing times in

> life is to stay positive. I think my positive

> attitude has startled my

> family and friends, even my Dr thinks I am odd in

> how I am handling this. I am

> a morning person anyway, so I just stay that way all

> day. It has really

> gotten me through this first month and I pray

> forever.

>

> There are lots of good folks on this site that

> already have helped me. I do

> not post often, however as a newbie myself, I

> thought my perspective might

> help.

>

> Sincerely,

> Chris

> Dx 03/01/07

> Gleevec 400Mg

>

> ************************************** AOL now

> offers free email to everyone.

> Find out more about what's free from AOL at

> http://www.aol.com.

>

> [Non-text portions of this message have been

> removed]

>

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March 26, 2007

Adrienne:

What a story you have told. My heart goes out to you. You are young and as

the other posts have said, you will lead a long happy life. You will have

many good days and occasionally, some bad. When you feel good, do as many

things as you can. When you are having a bad day, try to get some rest and

take

it easy. Probably a good rule for everyone, now that I think about it.

As you go along this journey, you will eventually see the positive side to

CML and you will find people along the way that are going to reach out to you.

On the flip side, you may find that some people may treat you differently

or not want to be around you as much, but they will be replaced by people that

genuinely care. I have friends who maintain my iPod (5,000 songs), pick me

up to go to the movies, take me to my appointments and just give me moral

support. I am able to drive and maintain my own iPod, but they just want to

help by driving or doing small things. So don't be ashamed to let people do

things for you. It is not charity, in fact it will probably mean more to them

than it does to you, but let them reach out. At the same time, if you choose,

you can reach out to others and educate them on CML and Leukemia in general.

I have been a model for the American Cancer Society, spoken at fund raisers

for Cancer camps and spoken at Rotary and other community meetings. I am

sure that my story is not unique, but you have a chance to really make your

life count. In fact, we all do.

I am sure things are going to work out well for you.

And you are not a cancer patient, you are a cancer survivor and survivorship

starts on the day you are diagnosed.

With regards,

Matt

In a message dated 3/25/2007 7:23:40 A.M. Eastern Standard Time,

addieoh@... writes: