Well we will be heading down to Riley again in Tuesday they want to
run some labs and see about getting her started on thenew drugs. I
have had a long talk with Hunter. We have agreed that if they want
her to take these drugs they are going to have to do it on our
terms.She does not wat anymore bone marrow aspites( i know I spelled
that wrong, sorry) done and refuses any type of surgeries that we
would need to do to get this medicine. She and I both have had
enough . She said they either give us the drug or they don;t if they
don;t then we move on to VP-16 drug combined with another drug and
while we do the radiation. I think it's time they do it our way. if
Hunter does't have much time left I don't see the point in wasting
what we do have having surgeries for there experments done. Plus I
see no good use in doing anymore until she starts to show progress.We
will see what they  have to say on Tuesday. The only problems she
seems to be having this week is her one knee hurts it seems to do
that when it  gets really cold. Otherwise she is doing fine and wet
to school today.
She is looking foward to the radiation. she holds out hope that this
might atleast help the tumors in her head so that she might be able
to comb her hair with out it hurting.

Hunter told me something this past week that broke my heart and at
the same time made me so proud of her. I asked her if she was afraid.
Or confused about anthing the doctor had to say.
She looked at me and said
" I'm not afraid of dying I know where I'm going,but I'm not ready to
give up yet."
Seven years old , how many of us can say the same?
I for one and scared to die.Not of where I will go after I die, but
of death itself. It scares me wondering how I will die and if I will
go in peace or pain.
What a strong woman she will be, should she make it to be an adult.
Nicole

Done.  Good luck and best regards,
Erick

--- In Gleevec@yahoogroups.com, Eileen Hodgkins <eihas@y...> wrote:
> Please remove me from your list.  I have PV, and my
> doc had thought that gleevec might work for me, but
> bmb shows that I do not have chromosomal changes that
> would allow gleevec to work.
>
> Thanks for all the information.
>
> Regards
> Eileen Hodgkins
>
>
>
>
> __________________________________
> Do you Yahoo!?
> Free Pop-Up Blocker - Get it now
> http://companion.yahoo.com/

Dear Nicole,

So sorry to hear this bad news.  I hope these new drugs do what they are
supposed to do and  please keep us updated so we can continue to cheer Hunter
on.
Healing Thoughts,
Tracey

countrysuds@... wrote:
Dear friends, Wanted to let yoiu know that we went to Riley again this past
week. The news was not good the cancer has started to spread and is now in
Hunter's left eye socket. We are going to go off the Gleevec and try the
expermental drugs that are a spin off of the gleevec. These are meant to target
the
Neuroblastoma cells.
We will also start radiation Dec. 8th for 10 days. it will me making
the11/2-2 hour trip everyday for 10 days but the doctor believes he can help
save her
eye. It was a better option then surgery.
There is not much more to tell at this time. I will learn more about this new
drug come next week.
thank you for all your prayers
Nicole


[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Nicole,
Thank you for the update on Hunter.  God bless both of you, and I will be
praying mightily that this new experimental treatment will work miracles for
Hunter.
Peace,
Laurel

   ----- Original Message -----
   From: countrysuds@...
   To: Gleevec@yahoogroups.com
   Sent: Friday, November 28, 2003 3:32 PM
   Subject: [Gleevec] Hunter update


   Dear friends, Wanted to let yoiu know that we went to Riley again this past
   week. The news was not good the cancer has started to spread and is now in
   Hunter's left eye socket. We are going to go off the Gleevec and try the
   expermental drugs that are a spin off of the gleevec. These are meant to
target the
   Neuroblastoma cells.
   We will also start radiation Dec. 8th for 10 days. it will me making
   the11/2-2 hour trip everyday for 10 days but the doctor believes he can help
save her
   eye. It was a better option then surgery.
   There is not much more to tell at this time. I will learn more about this new
   drug come next week.
   thank you for all your prayers
   Nicole



[Non-text portions of this message have been removed]

Dear friends, Wanted to let yoiu know that we went to Riley again this past
week. The news was not good the cancer has started to spread and is now in
Hunter's left eye socket. We are going to go off the Gleevec and try the
expermental drugs that are a spin off of the gleevec. These are meant to target
the
Neuroblastoma cells.
We will also start radiation Dec. 8th for 10 days. it will me making
the11/2-2 hour trip everyday for 10 days but the doctor believes he can help
save her
eye. It was a better option then surgery.
There is not much more to tell at this time. I will learn more about this new
drug come next week.
thank you for all your prayers
Nicole


[Non-text portions of this message have been removed]

Please remove me from your list.  I have PV, and my
doc had thought that gleevec might work for me, but
bmb shows that I do not have chromosomal changes that
would allow gleevec to work.

Thanks for all the information.

Regards
Eileen Hodgkins




__________________________________
Do you Yahoo!?
Free Pop-Up Blocker - Get it now
http://companion.yahoo.com/

Dear Nicole and Hunter and also Andi Miller:
I feel so bad about everything that is happening to the three of you.  Please
keep in mind that my thoughts are with you.  Maybe, just maybe, things aren't
quite as bad as you think and will turn around soon.
The best to all of you.
Margot

[Non-text portions of this message have been removed]

Well after one month on Gleevec for a trial for small cell lung
cancer, Dad is being taken off and going back to Chemo. :-(  We are
so dissapointed, we were really hoping to get some of the results
that many of you with CML are getting with Gleevec.

Dad has been very sick and in a lot of pain for the last week.  CT
on monday showed growth, so we are stopping the Gleevec and starting
chemo next week.  For now he's getting a morphine patch.

I wish all of you here the best and wanted to thank you all for all
of your support and suggestions.  I found this board to be full of
information as well as inspiration!!

Nicole and Hunter, I will keep you in my prayers honey.  I will try
to check back on occasion to see how she is doing.

Again, thank you all and good luck to each and every one of you.
{{{{{{{Hugs}}}}}}}}}}
Cheryl

Nicole,
I pray that God will carry your burdens for you and Hunter, and may Thanksgiving
bring you peace.  You and Hunter continue to be in my prayers.  Your brave
little girl is an inspiration to me.  What a little hero she is.
Blessings, and keep the faith,
Love......Laurel


[Non-text portions of this message have been removed]

Killing Medicare

By Trudy Lieberman
November 25, 2003

The Medicare "reform" legislation just passed by Congress sends the program on a
path to destruction. Crafted in the heady days of the Great Society, Medicare
has worked reasonably well for almost four decades for seniors and disabled
Americans, many of whom are unable to buy health coverage in the private market.
But the nation's financial commitment to Medicare – $215 billion in 2000 – got
in the way of the right's ideological goals of reducing the cost of government
and making people fend for themselves. So nearly a decade ago, right-wing
politicians and their allies at the Heritage Foundation embarked on a campaign
to transform Medicare into a private insurance program and ultimately to remove
the government from the business of guaranteeing healthcare for the oldest and
sickest citizens.


The new law lays the foundation for cutting benefits and increasing the amount
of money beneficiaries will pay for care. The right knew it could never get
control of Medicare's expenditures by overtly cutting benefits and raising
premiums, so embedded in the legislation are provisions that give cover for
doing exactly that. The so-called cap on what the government can spend on the
total Medicare program is essentially a trigger that requires Medicare trustees
to declare the program insolvent when spending from general tax revenues reaches
45 percent of the inevitably rising program expenditures. The $400 billion set
aside for the prescription drug benefit will be financed through the general
revenues. (Medicare is also financed through payroll taxes and premiums paid by
beneficiaries.) Opponents say this arbitrary definition of insolvency aims at
creating a crisis and generating political momentum for benefit cuts and more
cost sharing.


The first step toward privatization mandates that private insurers, not the
government, provide prescription drug benefits, the legislation's ostensible
raison d'etre. The government will funnel money to the insurance plans, which
will then charge a premium to beneficiaries. Only in special circumstances will
Medicare be allowed to offer drug coverage directly. In 2010 privatization will
accelerate when commercial health plans in certain metropolitan areas will be
able to sell insurance benefits in direct competition with those offered by
traditional Medicare. Legislative architects hope that cheaper premiums and
richer benefits will entice seniors to leave Medicare. Those offers will target
the healthiest people, who won't cost insurers a lot of money. The sick will be
stuck in the traditional program, unwanted by commercial carriers and forced to
pay escalating premiums, since there will be less money available. For those who
leave there are no guarantees.


The current experience with the Medicare HMO market provides a clue to the
future. A decade ago Medicare HMOs lured beneficiaries with generous benefits
and charged no extra premiums. But when Medicare slashed payments to them, they
reduced benefits and began charging premiums as well as high deductibles and
co-payments.


The experience in California shows what can happen. The Center for Consumer
Health Choices at Consumers Union, in its ongoing study of the California
Medicare market, found that the once-rich coverage offered by HMOs withered
substantially as government payments declined relative to the costs of providing
care. Next year, for example, Kaiser Foundation Health Plan will no longer offer
brand-name drug coverage, leaving most of the state's beneficiaries without
coverage for the most expensive drugs.


The modest drug coverage authorized in the bill is hardly worth the price of
privatization. Those with chronic illnesses and ongoing drug expenses will see
little benefit because of the convoluted benefit structure. The average Medicare
beneficiary, who is currently without drug coverage and who spends about $2,300
on prescriptions, will actually spend $2,900 in 2007 even with the new benefit,
assuming drug costs continue to rise at the same rate. That's likely, since
Congress has placed no cost controls on pharmaceuticals and indeed expressly
forbids the government from using its muscle to bargain for lower drug prices,
as it does in the Veterans Administration health system.


Also, the bill makes it virtually impossible to reimport cheaper drugs from
Canada. And although the bill authorizes subsidies for very-low-income seniors
to help pay increasing premiums, co-payments and deductibles, some 3 million
people will lose out because of eligibility limits placed on income and assets.
Those just over the line will struggle mightily.


The bill does, however, represent brilliant political strategy on the part of
its proponents, who began seeking allies as far back as 1995. AARP's support was
not surprising, given that right-wing interests attacked its tax exemption that
year and that then-Senator Alan Simpson of Wyoming, who had opened an
investigation, told AARP officials, "I want you to know that the intensity of my
investigation will be directly related to your fight on Medicare."


AARP got the message. The financial goodies for special interests – eliminating
the planned payment cuts to doctors, the $25 billion to rural hospitals and
doctors, the $12 billion in special payments to entice private insurers to offer
benefits – ensured the support of powerful lobbyists and gave wavering lawmakers
a reason to support the measure. Arkansas Senator Blanche Lincoln said she voted
for the bill because the extra money was helpful to rural health providers.


Over time, the legislation will splinter political interests, predicts Harvard
government professor Theda Skocpol. "The genius of Medicare was that it included
poor people and the middle class. It wasn't designed as charity or welfare," she
says.


That solidarity will crack as people no longer get the same benefits or even pay
the same premiums. The wealthiest beneficiaries will now pay more. With people
getting benefits from Aetna, Cigna and Blue Cross, what reason will they have to
support Medicare? One thing the new bill won't provide is help understanding its
bewildering new rules. That's because the final legislation stripped out $40
million that had been earmarked for state insurance counseling programs.


The repercussions from this legislation will be felt years from now when seniors
and the disabled realize that they can't pay for their healthcare. Couple that
with the prospect of less retirement income as employers shed their pension
plans and the right begins to push hard for privatizing Social Security and a
picture emerges of impoverished elderly people like those seen before Medicare
was phased in, in 1965.


Two years before, President Kennedy, quoting historian Arnold Toynbee, noted in
a special message to Congress that "a society's quality and durability can best
be measured 'by the respect and care given its elderly citizens.'" The Medicare
bill tells us how much has changed since Kennedy's time.


Trudy Lieberman is the director of the Center for Consumer Health Choices at
Consumers Union. Her latest book is "Slanting the Story: The Forces That Shape
the News" (New Press).


[Non-text portions of this message have been removed]

Hi Nicole-I just read your e-mail and I am thankful again for this group,
where we can sound off and are understood.  I can't say I know how you feel, but
I can say I CARE!  I think of you and your precious Hunter so often and pray
for you.  I have  CML and there are times that I feel -why me?  When I see my
friends going on with their lifes and doing fun things.  I too do allot of
crying when I drive and am by myself.  I believe that this is Gods tranquilizer
for us-because it helps me feel some better.  You have got to be the best Mom in
the world!  Please hang in there and write anytime or e-mail me direct at
cfhdbhhuff@....  I am an R.N. and can't work now, so I spend allot of time
on
the computer.  I wish I had some miracle words to say to you-but
unfortunately I don't, except remember to take care of yourself too, so you will
be there
for Hunter.  In Gods Love-your friend in N.C.  Dorothy


[Non-text portions of this message have been removed]

Thank you for all your words. I understand where each and everyone of you are
coming from.
Today turned out to be another bad news day. A new doctor looked at Hunter
and thinks there mightbe a chance of a tumor behind her left eye. I had noticed
a difference in the eye but with so much swelling the past few weeks from the
gleevec I didn't know how much was swelling and how much might be something
else. We are having scans Wednesday. But I can tell you now. Unless they can say
she won't be blind after the operation I won't allow the operation. Hunter
does not want it. She told me tonight she didn't fear death she knows where she
will go. But she doesn't want to loose her sight.
I believe that if she goes blind, it will kill her. She lives to read and
look at the stars if she can't do that. I don't believe she will have anything
to
live for. My heart is just breaking for her.
I will let you know what comes back from the scans.
Nicole


[Non-text portions of this message have been removed]

Dear Nicole,

Hello:  my name is Hope and my 29year old son has GIST.

After reading what you wrote I started to cry for you, myself, and
our fellow gisters.  How rotten this is, how unfair.  This group has
offered me so very much hope and I know that you will feel it too.  I
also hate when my son gets sick, I don't seee him much and he lives
3.000 miles away from me.  This has become my most awful nightmear,
yet, I will not give up, not ever.  He will be fine and the world
will be okay again.  I just know it.  This last year has been one of
such unfairness for me, my long term boyfriend died in January, JQ my
so got diagnosed with GIST months ago, and I just had a heart attack
last month.  I will move ahead with hope and prayers.  Your child has
been added to my list.  Please take care Nicole,

Always Hope

---- Original Message ----
From: countrysuds@...
To: Gleevec@yahoogroups.com
Subject: RE: [Gleevec] A thank you to all
Date: Mon, 24 Nov 2003 21:12:52 -0000

>I want to Thank all of you . Your thoughts and prayers are of great
>encouragement to me. I don't want anyone thinking that I am stronger
>then any other mother. I believe that any mother faced with this
>would do the same thing I am doing.It's not like you have a choice.If
>
>I did I think the outcome would be different.
>I have good and bad days. The worst time is when I'm by myself in the
>
>car. My mind starts to think. It's not always good thoughts one
>carries when you are faced with this. I love her and hate her all at
>the same time. Not because of her but because of what WE as a family
>in WHOLE have to deal with. Most of you here are in Hunter's
>sitution. And don't know what it's like to sit back and make life and
>
>death choices for someone else. If I was the one sick. This would be
>a easy thing to deal with. But I'm not and as a mother I'm to make
>thing better. And I can't and I hate that. I hate the feeling that
>every choice I make isn't working and I'm making her sicker, I'm
>slowly killing her. And my hands are tied.I almost didn't take her to
>
>the hospital this past week. I had really thought about just turning
>around and letting what happens happen.Not because I don't love her,
>But because I do. And because I could let her go so much easier if
>she was killed by a car accident, a fall anything but the Cancer. You
>
>know atleast then IT didn't get her. I know that sound sick but it's
>just seems so wrong. that she should have to suffer. I'm talking
>about a child who never grips who never complains, who is always
>thinking of other first. Who know matter what her age. Didn't ask for
>
>much didn't need much and never demanded anything of anyone.She
>expects nothing but the best from herself and doesn't sell herself
>short. She has confidence coming out the ears. And doesn't expect
>anything to be just giving to her. Her brain functions in a different
>
>manner then other children her age and some older then her. She has
>never been a normal child in the way she controls herself or her
>enviroment.I believe she not only could but would be the first woman
>president. And not because of her looks but because of her brains.
>She never allows her emotions to over rule the sitution she is in
>control no matter what. She never stops amazing me. I just can't see
>how someone with so much to offer should be so cruely cut down.
>Thats why I say if it was anything else I could handle it. I want her
>
>to go in peace. In her sleep. something soft , and silent.Nothing so
>dang painful. But something quick and easy. Does that sound cruel?
>It's just that I have lost one child already, I want it to be
>peaceful.It just seems to me that could she say it, she would say the
>
>samething my Dad said, "I went out my way." He didn't say it out loud
>
>to us . He showed it to us. It wasn't till after we buried him that I
>
>realized the truth. He got the final say, he did it his way, and he
>went out his way. He didn't let the cancer beat him. He beat it
>first.
>Dos that make any sense to you?
>Maybe thats all anyone can hope for.
>I guess I'm having one of those days today. Because I just keep
>crying, and dusting...
>Nicole
>
>
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>
>

Hi Nicole,

I think if anyone can understand what you're talking about it's us.  You said
that it's harder in some ways for you because you're making decisions for
someone else and that if it was just you it would be easy.

I'm the one with the cancer in my family and yes I'm making all of my treatment
decisions myself but I know very well that even though I'm making the decisions,
my decisions are going to effect everyone in my house and beyond.

My daughters were only 7yrs and 9yrs old when I was diagnosed and I had to make
decisions that would change their lives forever.  I decided against a bone
marrow transplant because my kids were too young to have to see me that sick. 
Was this a smart decision?  Only God knows.  But it was a decision I made.

I watch as my mother sits helplessly on the side and I feel so bad for her.  Not
only does she have no control over the disease itself but she also has no
control over the decisions I make.   She feels totally helpless and out of
control and although she tries to hid it, I can see that she suffers
tremendously watching her only daughter go through this.

If I was alone in this world, yes I think the cancer would be a much easier
thing to deal with but because I have kids and parents who depend on me, it is
VERY hard to deal with.  I greive for the mother of my kids and the daughter of
my parents not for me....I know this may be hard to understand but it's not my
life I'm worried about, it's my kids and the rest of my family.  Not to say that
they can't all go on living without me but the thought of my girls growing up
and going through puberty without a mother makes me cry in despair.

In your case you can't stand watching your daughter suffer and in my case I
can't stand to see those around me, suffer because of my illness.  We're all
helpless in this and  I don't think either situation is better than the other,
they both suck.

I hope Hunter feels better soon and I pray that we all find peace.

Love,
Tracey


Nicole <countrysuds@...> wrote:
I want to Thank all of you . Your thoughts and prayers are of great
encouragement to me. I don't want anyone thinking that I am stronger
then any other mother. I believe that any mother faced with this
would do the same thing I am doing.It's not like you have a choice.If
I did I think the outcome would be different.
I have good and bad days. The worst time is when I'm by myself in the
car. My mind starts to think. It's not always good thoughts one
carries when you are faced with this. I love her and hate her all at
the same time. Not because of her but because of what WE as a family
in WHOLE have to deal with. Most of you here are in Hunter's
sitution. And don't know what it's like to sit back and make life and
death choices for someone else. If I was the one sick. This would be
a easy thing to deal with. But I'm not and as a mother I'm to make
thing better. And I can't and I hate that. I hate the feeling that
every choice I make isn't working and I'm making her sicker, I'm
slowly killing her. And my hands are tied.I almost didn't take her to
the hospital this past week. I had really thought about just turning
around and letting what happens happen.Not because I don't love her,
But because I do. And because I could let her go so much easier if
she was killed by a car accident, a fall anything but the Cancer. You
know atleast then IT didn't get her. I know that sound sick but it's
just seems so wrong. that she should have to suffer. I'm talking
about a child who never grips who never complains, who is always
thinking of other first. Who know matter what her age. Didn't ask for
much didn't need much and never demanded anything of anyone.She
expects nothing but the best from herself and doesn't sell herself
short. She has confidence coming out the ears. And doesn't expect
anything to be just giving to her. Her brain functions in a different
manner then other children her age and some older then her. She has
never been a normal child in the way she controls herself or her
enviroment.I believe she not only could but would be the first woman
president. And not because of her looks but because of her brains.
She never allows her emotions to over rule the sitution she is in
control no matter what. She never stops amazing me. I just can't see
how someone with so much to offer should be so cruely cut down.
Thats why I say if it was anything else I could handle it. I want her
to go in peace. In her sleep. something soft , and silent.Nothing so
dang painful. But something quick and easy. Does that sound cruel?
It's just that I have lost one child already, I want it to be
peaceful.It just seems to me that could she say it, she would say the
samething my Dad said, "I went out my way." He didn't say it out loud
to us . He showed it to us. It wasn't till after we buried him that I
realized the truth. He got the final say, he did it his way, and he
went out his way. He didn't let the cancer beat him. He beat it first.
Dos that make any sense to you?
Maybe thats all anyone can hope for.
I guess I'm having one of those days today. Because I just keep
crying, and dusting...
Nicole


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[Non-text portions of this message have been removed]

Hi Group,

First of all, thank you so much for all the encouraging emails and post. I have
been so busy, I am not able to personally respond to them all but I want each
and every one of you to know that your thoughts and prayers as well as notes are
deeply appreciated.

My diary about my participation in the BMS-354825 is now on-line at my web site.
Http://www.newcmldrug.com

Just look in the left hand menu for "Jerry's Diary"

It is a little rough around the edges at this time but I will improve it as time
goes by. It starts on October 29 with my CML history and is reverse sorted so
newer posts are near the front. Right now it contains two pages so use the
navigation bar at the bottom of the page to get to other pages.

Also I have a pictures page. You can click near the top of the diary to see
pictures related to the BMS-354825 trial. Right now there is only one picture
and it is of the drug. I will add more as time permits.

I hope this information is helpful to some of you.

Warmest wishes,

Jerry


[Non-text portions of this message have been removed]

Hello Michael and Everyone,

I haven't posted in awhile, but this caught my eye.

I switched to the new 400mg caplet and I've only had some minor
stomach upset.  Nothing major, but I did notice a change with the new
pill form.  It appears to be a little more concentrated going in, but
causes me less stomach upset if I eat a higher protein meal, not too
much and not too little.

Oh, BTW, the new Gleevec and driving 70+ miles down the George Bush
turnpike with a full stomach doesn't work either.  My husband took me
out for a Sunday afternoon birthday dinner (steak).  I took my pill
and got in the car to go home about 15 minutes later.  A few miles
down the road I had him pull over so I could throw up all
over 'Bush'.  While I was making myself feel better (haha!), I
started imagining what all the passing cars were saying! :-)
I really felt bad because my husband had spent a pretty penny on
brunch!   A funny moment in time, we laugh about now.  But no getting
in the car too soon after taking Gleevec...

I have another FISH test (through blood) the week of December 1st, so
I'll keep you posted on the results.

On a side note, this year I'm an honored hero for the Leukemia
Society's Team in Training Dallas, Texas White Rock Half Marathon (13
miles) on December 14th. Even better - my husband and I are also
participants!  Yes, we're walking that 13 miles.

Why, you might ask?  Because I CAN!  And, because it's not about me
anymore - its about finding 'durable remissions' for all forms of
leukemia.  For 14 months on interferon, some of you remember, I could
barely get off the couch.  I've got my 'magic bullet' with Gleevec.
Time to find a few more 'magic bullets' for other types of cancer.

To your good blood,
Gale (divergal)
dx'd March '00
Complete molecular remission since Sept '01
(4 months after starting Gleevec)

> The chat will be on Yahoo Messenger Tuesday 9:00PM EST
> To get to the chat room, just right click on my Yahoo Messenger name
> (Zavie Miller) and then click on Join User in Chat
> To download Yahoo Messenger, go to www.messenger.yahoo.com
> My Yahoo name is zaviem. You might have to invite me as a friend if you
> are not on my list.
If this doesn't work, revert to the old site ay
http://groups.yahoo.com/group/CML/chat

> Zavie
>


[Non-text portions of this message have been removed]

Dear Nicole,
I am so sorry for what your family is going through, and has gone through in the
past.  My thoughts and prayers are with you and Hunter at this time.  May the
Holiday season bring you moments of His Peace and Comfort.  He is always with
You.
Love,
Laurel



[Non-text portions of this message have been removed]

Nicole,

We have all been where you are. The time alone in the car or late at night is
difficult. My husband is the one fighting the cancer - but, I'm the one
constantly waging the battle to make sure that the medical community does what
they should be doing! I've had those days when the tears just flow. Keep up the
good work with Hunter - she is so lucky to have you.JeanR

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I want to Thank all of you . Your thoughts and prayers are of great
encouragement to me. I don't want anyone thinking that I am stronger
then any other mother. I believe that any mother faced with this
would do the same thing I am doing.It's not like you have a choice.If
I did I think the outcome would be different.
I have good and bad days. The worst time is when I'm by myself in the
car. My mind starts to think. It's not always good thoughts one
carries when you are faced with this. I love her and hate her all at
the same time. Not because of her but because of what WE as a family
in WHOLE have to deal with. Most of you here are in Hunter's
sitution. And don't know what it's like to sit back and make life and
death choices for someone else. If I was the one sick. This would be
a easy thing to deal with. But I'm not and as a mother I'm to make
thing better. And I can't and I hate that. I hate the feeling that
every choice I make isn't working and I'm making her sicker, I'm
slowly killing her. And my hands are tied.I almost didn't take her to
the hospital this past week. I had really thought about just turning
around and letting what happens happen.Not because I don't love her,
But because I do. And because I could let her go so much easier if
she was killed by a car accident, a fall anything but the Cancer. You
know atleast then IT didn't get her. I know that sound sick but it's
just seems so wrong. that she should have to suffer. I'm talking
about a child who never grips who never complains, who is always
thinking of other first. Who know matter what her age. Didn't ask for
much didn't need much and never demanded anything of anyone.She
expects nothing but the best from herself and doesn't sell herself
short. She has confidence coming out the ears. And doesn't expect
anything to be just giving to her. Her brain functions in a different
manner then other children her age and some older then her. She has
never been a normal child in the way she controls herself or her
enviroment.I believe she not only could but would be the first woman
president. And not because of her looks but because of her brains.
She never allows her emotions to over rule the sitution she is in
control no matter what. She never stops amazing me. I just can't see
how someone with so much to offer should be so cruely cut down.
Thats why I say if it was anything else I could handle it. I want her
to go in peace. In her sleep. something soft , and silent.Nothing so
dang painful. But something quick and easy. Does that sound cruel?
It's just that I have lost one child already, I want it to be
peaceful.It just seems to me that could she say it, she would say the
samething my Dad said, "I went out my way." He didn't say it out loud
to us . He showed it to us. It wasn't till after we buried him that I
realized the truth. He got the final say, he did it his way, and he
went out his way. He didn't let the cancer beat him. He beat it first.
Dos that make any sense to you?
Maybe thats all anyone can hope for.
I guess I'm having one of those days today. Because I just keep
crying, and dusting...
Nicole

The new pill is what Hunter started out on. It wasn't till this past
week when she had to stay in the hospital and I didn't have her meds
that we had the fun of taking some of the pills in old form..
Nicole

I was surprised as well to see a little bottle of tabs instead of my big
bottle of capsules last refill.  They won't be making capsules any longer so I
was
told.  I must admit I felt a little nausea with the 100 mg. tabs to start
which was surprising since I never had a bit of it with the capsules.  Seems to
have passed now anyway.  No need for paranoia, you sound like your doing great
and are blessed to be doing so well on the Gleevec.  Keep it up!

Lisa P.

Good wishes are with you and Hunter.  Stay strong and keep us
posted!  You are both in our prayers.

Shelley

I received my first batch of these new pills on my last refill. I take 6
small tablets now, instead of 6 large capsules. This is so much easier for
me...taking 3 at a time..I really like the change.

Janice


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HELLO EVERYONE, I JUST HAD MY REFILL OF GLEEVEC AND THE COMPANY
CHANGED THE MEDICATION TO A TABLET...! MY DR. ASKED ME BACK IN SEPT.
IF I WANTED THE SINGLE 400MG PILL. I DECLINED.
I WAS SURPRISED TO RECEIVE TABLETES. THEY ARE SMALLER THAN CAPS.
I GUESS IAM PARANIOD OF CHANGE SINCE I'VE BEEN IN TOTAL REMISSION FOR
20 MONTHS. I HOPE EVERYONE STILL HAS AS GOOD RESULTS AS I HAVE WITH
GLEEVEC.  MALE/45/CONFIRMED 3/13/02/ TOTAL REMISSION 09/18/02 TO
DATE. C.M.L.

There is a sugen trial at Dana Farber in Boston for patients showing
resistance to Gleevec. Please check it out.

Janice


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dear all,

my father's latest scan shows tht the tumours havent stopped growing
despite gleevec. we are now considering surgery. do any of you know a
gist patient who after gleevec has gone through surgery? my father's
giving up hope. any of you know gist patients where the tumours have
grown and then shrunk after gleevec? any information on either of the
above including the surgery option will be helpful. nicole, i admire
your courage and hunter will be in my prayers.
regards
anamika

Dear Nicole,

I have been reading your posts and following Hunter's story. I am
praying for you and Hunter. You are an amazingly strong person, and
an inspiration to all mothers. Please keep us updated on her progress.

kind regards,
Erin

[cross-posted]

Hi all,

As some of you already know, one of my big, ongoing projects is raising
funds for the Leukemia and Lymphoma Society. I do this by running with
the Team in Training, a major fund-raising program of the LLS.

Last season, many of you contributed to my program and helped me raise
more than $5,300. This season, I'm upping the ante and my goal is to
raise another $6,000, for a total of more than $11,300. I'll be running
the Vancouver International Half-Marathon May 2, 2004, to help raise the
money and also to raise awareness of the need for funds for research and
patient programs.

Although some of you may know this, others may not: Many of the funds
that supported the research that led to the development and
commercialization of Gleevec came from donations to the Leukemia
Society. So as you can see, this money is vital to continuing to fund
new research for treatment that will help us, our family, and our
friends. Also, the LLS's patient assistance program, which helps many of
us, depends on these funds.

I am dedicating the Vancouver run to my friend Dee, who as you know
recently died after battling CML for the last few years. I'm also
dedicating it to all the other CML warriors who have given their life in
this fight.

Once again, I'm asking for your support through donations. For each
donation of just $26 (just $2 a mile), you can ask me to add a name to
the Vancouver 2004 Honorees. I'll put their name on my TNT Web site and
on my race T-shirt as an inspiration to us all. All donations go right
to the LLS.

You can read more about my TNT program and make a donation by going to
this Web site (click it or copy and paste the **full* ULR into your
browser window):

<
<http://www.teamintraining.org/personalpages/page.adp?event_id=121525&us
er_id=20585>
http://www.teamintraining.org/personalpages/page.adp?event_id=121525&use
r_id=20585  >

Your donations are tax-deductible (so you can take advantage of it
before the year is over). You can email me privately if you want to send
a check instead of donating online, and I'll give you my address. Make
checks out to the *LLS.*

Come on -- let's show everyone what the CML community can do when we
work together!

jennifer g.
=======================================

jennifer g.

jennifer@...

www.cmlsupport.com <http://www.cmlsupport.com/>



Cost of a dinner out? $50. Cost of a new pair of heels? $85. Cost of
saving a life? Priceless.

Donate to the Leukemia & Lymphoma Society today


<http://www.teamintraining.org/personalpages/page.adp?event_id=121525&us
er_id=20585>
http://www.teamintraining.org/personalpages/page.adp?event_id=121525&use
r_id=20585



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



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> The chat will be on Yahoo Messenger Saturday 9:00AM EST
> To get to the chat room, just right click on my Yahoo Messenger name
> (Zavie Miller) and then click on Join User in Chat
> To download Yahoo Messenger, go to www.messenger.yahoo.com
> If this doesn't work, revert to the old site ay
> http://groups.yahoo.com/group/CML/chat
My Yahoo name is zaviem. You might have to invite me as a friend if you are
not on my list.

You can try it this evening. The chat room will be open.

> Zavie
>


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