Re: Life span

May 12, 2004

The reliability of CI from Med-El is 99.8% per year. They provide a warranty

of 10 years. Since the implant is not mechanical, you don't hear less when

it wears out. However, if the speech processor's microphone wear out, it

will affect how you ear.

Regards/

Jerome

Life span

What is the typical life span of a CI and need for reimplantation? What

happens when it starts wearing out? You hear less?

March 7, 2007

Chris- great email. It can be glib but I think we have to face the truth of

the disease. I like your outlook though. If you've ever heard that country

song by Tim McGraw, " Live like you were dying, " I think that song reflects

how we all live now that we have been faced with CML. It really open your

eyes to how precious life is and how each day matters. One thing I think of

often, especially on the bad days when I am stuck against the thoughts of

mortality and just wanting to get to the point where my 3 babies are grown and

married, is that, before dx I wasn't guaranteed a tomorrow. So, nobody knows

what is in store for them with or without a diagnosis so we have to live each

day to the fullest and be thankful for what we have. You can't get your self

stuck in the " what ifs " and that sometimes is hard for me.

Regarding babies, I know people who have stored there eggs prior to starting

Gleevec as well as Zammett the editor for Glamour magazine, has

recently stopped her Gleevec and is getting pregnant so I think there is a lot

of

options out there. I think each person has to take in their histories and work

with a doctor who is up to date with all the new trends of our disease.

Good luck and stay healthy-

Hugs-

34

CML 5/13/05

Gleevec 800 mg

wife and mother of 3 (11,8,6)

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March 7, 2007

Hi,

Thanks for writing, I am one of the least informed

members on this board, I am also probably one of the

most glib. Getting diagnosed with cancer is a shock

and can rip up a person's outlook on life.

My glib answer is: the shortest you can expect to

live is less than one more day and the longest well

lets say 107 years - if you cut back on your sky

diving.

The biggest thing is to know:

What stage the CML was diagnosed at and then how well

we respond to Gleevec. I was diagnosed in an

estimated mid chronic phase. I was 44. I have

responded well to gleevec with near if not a full

3log reduction. I asked Dr Drucker to give me a

statistical estimate on how long gleevec would work

for me based on my response to date. He estimated 10

years. That means I might have another 6 good

response years on this front line therapy. He also

felt that the back up drugs and those identified in

the pipeline now - might give me another 10 additional

years of response. That puts an ESTIMATED runway of

16 years for me based on technology now in view.

So - lets hope your wife has an early Chronic version

right now. Lets hope her Gleevec response will be

strong! Then she would be in pretty good statistical

shape. Of course finding out you have CML at 25 makes

you face mortality a lot earlier than you should, but

- if anything Gleevec, the next line therapy and the

great Drs like Dr Drucker and others have allowed

many/most CML patients to face their days like they

did before they were diagnosed. That is a gift!

I know one issue that faces younger people is the

concern about having children - I am uninformed on

this major issue/decision. I will just be hopeful

that its still an event that can be realized for those

who want to be parents!

Anyway - I don't feel limited in my daily life and I

don't feel limited by the Grim Reaper. I feel great -

I hope your wife can come to this point too!

Good Luck,

Chris

--- pmberryman <pmberryman@...> wrote:

> I guess with cancer it is always a crapshoot and you

> can never know

> for sure, but there is very little indication of

> expected lifespan for

> CML. Does anyone know the extreme (earliest and

> longest) and average

> a CMLer can live.

>

> I found out today that my wife (separated--though we

> were working on

> it) was diagnosed Monday. She is 25, and convinced

> she is dying. Our

> relationship issues make communication difficult, so

> I do not even

> know what her doctor told her.

>

> Thanks for any input.

>

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March 7, 2007

Hello,

I can't give you any definitive number of years, but I can pass on

what I was told when I was diagnosed in Oct. /02.

I was told then that about 5 years was the lifespan, but that it was

that number because they only had 5 years of proof on the

effectiveness of Gleevec. Since then I am seeing people in the CML

sites that have been Rx for 8-9 years.

I also should mention that at the age your wife is a boe marrow

transplant could be a great answer for you.

Best of luck and I hope this helps,

Terry

>

> I guess with cancer it is always a crapshoot and you can never know

> for sure, but there is very little indication of expected lifespan for

> CML. Does anyone know the extreme (earliest and longest) and average

> a CMLer can live.

>

> I found out today that my wife (separated--though we were working on

> it) was diagnosed Monday. She is 25, and convinced she is dying. Our

> relationship issues make communication difficult, so I do not even

> know what her doctor told her.

>

> Thanks for any input.

>

March 7, 2007

Hi ,

Just a quick update on . She is now 3 months pregnant. Visit her blog at

http://www.glamour.com/lifestyle/blogs/editor and look at the February

archive where she announced it. Of course she got a big O!!! YIPPEEE!!!

from me. http://www.glamour.com/lifestyle/blogs/editor/2007/02/index.html

Zavie

Re: [ ] Life span

Chris- great email. It can be glib but I think we have to face the truth

of

the disease. I like your outlook though. If you've ever heard that country

song by Tim McGraw, " Live like you were dying, " I think that song reflects

how we all live now that we have been faced with CML. It really open your

eyes to how precious life is and how each day matters. One thing I think

of

often, especially on the bad days when I am stuck against the thoughts of

mortality and just wanting to get to the point where my 3 babies are grown

and

married, is that, before dx I wasn't guaranteed a tomorrow. So, nobody

knows

what is in store for them with or without a diagnosis so we have to live

each

day to the fullest and be thankful for what we have. You can't get your

self

stuck in the " what ifs " and that sometimes is hard for me.

Regarding babies, I know people who have stored there eggs prior to

starting

Gleevec as well as Zammett the editor for Glamour magazine, has

recently stopped her Gleevec and is getting pregnant so I think there is a

lot of

options out there. I think each person has to take in their histories and

work

with a doctor who is up to date with all the new trends of our disease.

Good luck and stay healthy-

Hugs-

34

CML 5/13/05

Gleevec 800 mg

wife and mother of 3 (11,8,6)

************************************** AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

March 7, 2007

Not sure with all the new drugs but I

am going on my 30th year with CML

I feel ok need a motor job but

I am doing fine on AMN107 (Nilotinib)

SkipD

http://easyskip.tripod.com

Dx'ed 29 years ago

--- pmberryman <pmberryman@...> wrote:

> I guess with cancer it is always a crapshoot and you

> can never know

> for sure, but there is very little indication of

> expected lifespan for

> CML. Does anyone know the extreme (earliest and

> longest) and average

> a CMLer can live.

>

> I found out today that my wife (separated--though we

> were working on

> it) was diagnosed Monday. She is 25, and convinced

> she is dying. Our

> relationship issues make communication difficult, so

> I do not even

> know what her doctor told her.

>

> Thanks for any input.

>

________________________________________________________________________________\

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March 7, 2007

Thanks so much for the responses (the glibber the better). We're done

having kids (we have 3 and 5 year old boys), so I guess it comes down

to getting to see them grow up.

Not sure if it is a phase or whatever, but she is in a place where she

will not talk about it, is convinced she is dying, does not care about

anything else (obviouly--pretty hard for me to also!) so is difficult

to comfort--especially when you throw in the pre-existing relationship

issues. I am doing my best to be attentive to her needs while keeping

it together for the kids.

It is hard to resist the temptation to try to convince her it is not

an automatic death sentence and try to get her to look at the

perspectives some of you mentioned, though I know that will only be

acceptable with time. It is tough, appreciate the support

March 8, 2007

Thanks Jen!

--- vegasrnjen@... wrote:

> Chris- great email. It can be glib but I think we

> have to face the truth of

> the disease. I like your outlook though. If you've

> ever heard that country

> song by Tim McGraw, " Live like you were dying, " I

> think that song reflects

> how we all live now that we have been faced with

> CML. It really open your

> eyes to how precious life is and how each day

> matters. One thing I think of

> often, especially on the bad days when I am stuck

> against the thoughts of

> mortality and just wanting to get to the point where

> my 3 babies are grown and

> married, is that, before dx I wasn't guaranteed a

> tomorrow. So, nobody knows

> what is in store for them with or without a

> diagnosis so we have to live each

> day to the fullest and be thankful for what we have.

> You can't get your self

> stuck in the " what ifs " and that sometimes is hard

> for me.

>

> Regarding babies, I know people who have stored

> there eggs prior to starting

> Gleevec as well as Zammett the editor for

> Glamour magazine, has

> recently stopped her Gleevec and is getting pregnant

> so I think there is a lot of

> options out there. I think each person has to take

> in their histories and work

> with a doctor who is up to date with all the new

> trends of our disease.

>

> Good luck and stay healthy-

>

> Hugs-

> 34

> CML 5/13/05

> Gleevec 800 mg

> wife and mother of 3 (11,8,6)

>

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

> 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 8, 2007

PMB,

I think one of the responses said it best - Monday is

very recent. Once the medicine starts to work - and

it will!!!, the momentum will turn and hope will

grow! And I hope that soon after that she will believe

that she and the Drs and the Drug companies will start

putting 0s on the board and begin to shut out the CML!

I have a story I have not written on here before about

the day I was confirmed with CML. To set the stage,

I had gone in for a routine physical on a Wednesday.

On Thursday afternoon, my regular Dr called me and

told me I had a very high White Blood Cell count and

need to see an Oncologist right away. He had already

booked me an appointment for Monday. Needless to say,

I barely slept all weekend. (Also I need to say here

- those 3 nights were the worst three nights of this

entire ordeal). On Monday I saw the Oncologist and he

confirmed the CML. I started to tear up and I

noticed he was almost doing the same (It must be hard

to tell people they have a cancer - and have to do it

maybe 100 times a year). Well instinctively I patted

him on the shoulder and told him I was counting on

him. Then he said, that this new drug Gleevec seemed

to be a magic bullet for most patients. Well I was

not sure what to make of it, but he planted my seed of

hope!

I headed down the hall to make a follow up appointment

for getting the Gleevec. Just before I got to the

desk, I stopped and started to cry again. I leaned

against the wall and asked God to get me through this

interaction without breaking down.

Then I turned the corner and came face to face with a

lady at the desk I knew. I had not seen her in 5

years. I used to play ball with her husband. Well we

went right into - " so what have you been doing, How

is Hank and let me show you a picture of my kids " .

God gave me the lift I asked for right then. It was

just a small push but it got my feet under me and let

me move ahead in a happier and more hopeful mode!

Over time that built into confidence as the Gleevec

did its thing. I am still nervous every 3 months

when I go for my PCR test, but I am doing great almost

every day. I wish the same for your wife, your kids

and you!

--- pmberryman <pmberryman@...> wrote:

> Thanks so much for the responses (the glibber the

> better). We're done

> having kids (we have 3 and 5 year old boys), so I

> guess it comes down

> to getting to see them grow up.

>

> Not sure if it is a phase or whatever, but she is in

> a place where she

> will not talk about it, is convinced she is dying,

> does not care about

> anything else (obviouly--pretty hard for me to

> also!) so is difficult

> to comfort--especially when you throw in the

> pre-existing relationship

> issues. I am doing my best to be attentive to her

> needs while keeping

> it together for the kids.

>

> It is hard to resist the temptation to try to

> convince her it is not

> an automatic death sentence and try to get her to

> look at the

> perspectives some of you mentioned, though I know

> that will only be

> acceptable with time. It is tough, appreciate the

> support

>

________________________________________________________________________________\

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March 8, 2007

If CML is found in the early stages, and the patient responds well to Gleevec

(app 95%) do, the experts are saying that we may have a normal live span as if

we aren't even sick. For the other 5%, life is a little more uncertain, but

most of those people have sone fairly well with the new and experimental drugs.

some people opt for a bone marrow transplant, which has it's oen mortality rte,

but can be a lifetime cure.

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March 8, 2007

Hello

I can relate to what your wife is going threw. I was DX with my

blood counts at 343,000 in November of 2003, when I was only 22 years

old. The doctors thought I was in the blast stage, I couldnt have any

vistors due to infection. Then the tested my bone morrow and told me

they had good news, that I had CML, I just had it for so long that my

blood counts were way to high. I though my life was over. That same

day I starting taing taking Hydroxea to bring my counts down and 600mg

Gleevec for it to stay that way. They reduced my dose 3 months later

to 400mg, and it has been that way since. The first 6 months is the

worst, I had to get use to the fact that I had cancer, and I had lost

on bone pain that, I thanks god went away. It does getter better, your

wife needs to look towards the future. She needs all the support she

can get. I remember what my doctor told me when I first got DX. I am

my own medicaine. I had to be strong and fight, so that I can win my

battle, he told me that if I gave u I would lose it for sure. I am

still fighting and still winning. Your wife needs to fight, I hope

this helps.

>

> I guess with cancer it is always a crapshoot and you can never know

> for sure, but there is very little indication of expected lifespan

for

> CML. Does anyone know the extreme (earliest and longest) and average

> a CMLer can live.

>

> I found out today that my wife (separated--though we were working on

> it) was diagnosed Monday. She is 25, and convinced she is dying.

Our

> relationship issues make communication difficult, so I do not even

> know what her doctor told her.

>

> Thanks for any input.

>

March 9, 2007

Hi

I was on Hydrea & INTEFERON shots that I gave to myself for 8 years, thats all

there was in 1990, It kept me alive but very sick all the time,OHSU ask me what

i thought of INTERFERON, I said cruel, they agreed with me.

Peggy

[ ] Re: Life span