(No subject)

July 2, 2006

I cried and cried. It was my daughter and I all over again!!!!!!!!I missed

soooo much her last year of high school. I went to her graduation with my mask

on and lasted 20 minutes. But I would lay in bed and she would ask why I cant

do these things with her and I cried. Beautiful and right.

Janet

July 2, 2006

That' beautiful... now I'm crying!

Lourdes " Sal " Salvador, salvadorlourdes@...

www.mcs-awareness.org,

http://mcs-awareness.org/mcs-awareness.org-AMA%20Letter.pdf

----- Original Message -----

From: <Gingersnap1964@...>

> Prayer for Lonely People

July 2, 2006

this breaks my heart, as I know this all to well. i have been ill so

long, so many school funtions missed, children and grandchildren. it

kills me not to be able to be the grandma I want to be. sick so long

that no one remembers the old me. and like her mom, its so hard to

not be there for your children and not even be able to blame it on a

known disease or understand what is happening to you. this is more

than anyone should have to endure, and its terriable to even know

that a stupied rat study done for the purpose of winning defence

cases caused so much more suffering. I have no doughts that the many

resent floods are going to force this issue to the surfus, but look

at how many lives its ruined on the way. all from something that has

been here forever.

mold.

>

> Here is another poem:

> Thirteen-year-old Arielle Murray wrote this lovely poem which

pretty much

> sums up how heartbreaking this whole scenario is for teenagers as

they lose

> their lives to mold from a hurricane. We would like to share it

with you.

> (from Mold-Help site)

> Mold...The Destroyer

>

> Only 13 years old exposed to mold

> People don't understand, even when they are told.

>

> For five whole years, we didn't know what was making us ill

> All my parents could say is it must be God's will.

>

> One doctor said one thing, one doctor said another

> All I know is I almost lost my mother.

>

> She laid in bed for two whole years

> All I saw come out of her eyes were tears.

>

> I kept on saying what's wrong with you

> All she said is " Arielle I wish I knew. "

>

> Two years before, she took me to school,

> She went to my brothers baseball games,

> She came and watched me at gymnastics,

> She was my mom, she was cool.

>

> Mold took over her life, It took over all of our lives.

> All my dad wanted was his old wife.

>

> Then we all started getting sick headaches, and burning nose,

> Our whole bodys hurt, from our head to our toes.

>

> It not only effects your body, but also your brain

> Once your exposed you will never be the same.

>

> We tried evrything we could think of and then lost our house,

>

> All we have now is each other and love, I pray to God every single

night

> Make us the way we use to be, make everything alright.

>

> The End

> By: Arielle Murray Age 13 Mold...The Destroyer

>

> Last Updated (Monday, 10 October 2005)

>

October 16, 2006

Jayne Anne,

Did you have any side effects or a die off? They found puddles of yeast in

my throat.

Janet

November 24, 2006

Ditto Janet-I moved 2500 miles from all my friends and family trying to

find dry space- have spent my first ever thanksgiving alone- I just try

and think about how lucky i am compared to most people on this site-and

if I was back home my sisters house bothers me and my moms just had a

sewer flood-I tried to get the guys long distance to clean it up right-

but I am sure I would react-How I will ever visit her on her future

death bed , I don't know. I have had 3 months of health in the past

year- so I just hope I can do it again

>

> Happy Thanksgiving to everyone here. Im having a hard time coping

when my

> family is altogether and Im here alone. I cant go because their house

bothers me.

> Im sorry I dont usually write like this.At times I wish I never heard

of

> mold. It took away my whole life.

> Janet

>

August 21, 2007

To Merissa who has Kaiser Insurance (a network HMO). You should know that

Kaiser in Southern California has a special relationship with the City of

Hope Cancer Center which is a top-notch hospital in Duarte near Los Angeles.

(One of only 39 fully accredited Comprehensive Cancer Centers in the USA.)

They do all Kaiser's bone marrow transplants and Kaiser is the only HMO

insurance they accept. Your doctor should be able to approve for you to see

a City of Hope leukemia specialist. The name I heard is best there is Dr.

Snyder.

____________________

Dear le and Merissa,

The only problem with seeing someone at what is mainly a BMT (transplant)

center for a consult is that what they mostly know about is transplants.

So, they may have leukemia specialists there but they are still mainly

transplant specialists. This is NOT the same as seeing a non-transplant CML

specialist, like Dr. Druker, Dr. Talpaz and the like. Because most

CMLers are not high transplant candidates in this day and age, it is really

more beneficial to see someone not connected to a tranplant center.

Early on in my CML days (I am 9 years since dx) I did do a consult at the

Hutch in Seattle. The new drugs were not available then and I wanted to

know about interferon as a treatment option.....and the MD I consulted with

said:..... " I really can't tell you much about interferon.....BMTs are our

bread and butter " .......which was a very honest reply.

Something to consider,

C.

November 22, 2007

From: jmoon@...To: dkd@...; jwalt@...; mmoon84@...; oddjoce@...; whit032489@...Subject: Fw: (no subject)Date: Wed, 21 Nov 2007 23:55:11 -0500

Slow DanceThis is a poem written by a teenager with cancer.She wants to see how many people get her poem.It is quite the poem. Please pass it on.This poem was written by a terminally ill young girl in a New York Hospital It was sent bya medical doctor - Make sure to read what is in the closing statement AFTER THE POEM.SLOW DANCEHave you ever watched kidsOn a merry-go-round?Or listened to the rainSlapping on the ground?Ever followed a butterfly's erratic flight?Or gazed at the sun into the fading night?You better slow down.Don't dance so fast.Time is short.The music won't last.Do you run through each dayOn the fly?When you ask How are you?Do you hear the reply?When the day is doneDo you lie in your bedWith the next hundred choresRunning through your head?You'd better slow downDon't dance so fast.Time is short.The music won't lastEver told your child,We'll do it tomorrow?And in your haste,Not see hissorrow?Ever lost touch,Let a good friendship dieCause you never had timeTo call and say,'Hi'You'd better slow down.Don't dance so fast.Time is short.The music won't la st.When you run so fast to get somewhere reYou miss half the fun of getting there.When you worry and hurry through your day,It is like an unopened gift....Thrown away.Life is not a race.Do take it slowerHear the musicBefore the song is over.------------ --------FORWARDED E-MAILS ARE TRACKED TO OBTAIN THE TOTAL COUNT.Dear All: PLEASE pass this mail on to everyone you know - even to those you don't know! It is the request of a special girl who will soon leave this world due to cancer.This young girl has 6 months left to live, and as her dying wish, she wanted to send a letter telling everyone to live their life to the fullest, since she never will.She'll never make it to prom, graduate from high school, or get married and have a family of her own.By you sending this to as many people as possible, you can give e her and her family a little hope, because with every name that this is sent to, The American Cancer Society will donate 3 cents per name to her treatment and recovery plan. One guy sent this to 500 people! So I know that we can at least send it to 5 or 6. It'snot even your money, just your time!PLEASE PASS ON AS A LAST REQUEST.Dr. Dennis Shields, ProfessorDepartment of Developmental and Molecular Biology1300 Park AvenueBronx , New York 10461

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January 30, 2008

Back In October when the outbreak in communities of MRSA was announced on

television, one of our children came home with the stapph infection on his

leg and we immediately took him to the Dr where he was given an oral

antibiotic and topical.

This probably happen in school as it was wide in the schools here at the

time.

I wasn't too worried for me but I was careful to wash all linens provide

separate necessities for the child with it for the first week so that it

wouldn't spread to the other children.

Fortunately it didn't.

ez

April 17, 2008

GREAT NEWS Eva! Keep on Keepin' On! We are rooting for you!

Hopefully, Zavie will be adding another name to the Zero List!!!!!

Here for a purpose! (Jer 29:11)

Greg s

April 18, 2008

Thanks for the congrats Greg , it means a lot. Take care; Eva

From: Greg s

Sent: Thursday, April 17, 2008 6:24 PM

Subject: [ ] Re:(no subject)

GREAT NEWS Eva! Keep on Keepin' On! We are rooting for you!

Hopefully, Zavie will be adding another name to the Zero List!!!!!

Here for a purpose! (Jer 29:11)

Greg s

December 31, 2008

Thank you Ceil for being the bringer of GREAT news! Gee, I am so pleased. And

grateful.

From: ceils401@...

Date: Wed, 31 Dec 2008 18:35:19 -0500

Subject: [ ] (no subject)

Hi Everybody

Spoke to Lottie today and she is feeling better. She said that maybe today

they would let her go home. I hope so. The fact that she is better will let us

enjoy New Years Eve. Even though I have never met her we have become good

cyberspace friend. We have a lot in common. I am 75 and married 54 years so you

see we can relate to all the old stuff.

A very Happy and Healthy New Year to all of you. Maybe this will be the year

of a CML cure. Have to stay positive.

Love & Hugs

Ceil- NYC

dx 6/06-

**************New year...new news. Be the first to know what is making

headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

December 31, 2008

So Glad to hear Lottie is coming home. I did not get to know her, but she

sounds like a beautiful lady who deserves the best.

From: Rosen Lum <rrosenlum@...>

Subject: RE: [ ] (no subject)

Date: Wednesday, December 31, 2008, 6:41 PM

Thank you Ceil for being the bringer of GREAT news! Gee, I am so pleased. And

grateful.

groups (DOT) com

From: ceils401aol (DOT) com

Date: Wed, 31 Dec 2008 18:35:19 -0500

Subject: [ ] (no subject)

Hi Everybody

Spoke to Lottie today and she is feeling better. She said that maybe today

they would let her go home. I hope so. The fact that she is better will let us

enjoy New Years Eve. Even though I have never met her we have become good

cyberspace friend. We have a lot in common. I am 75 and married 54 years so you

see we can relate to all the old stuff.

A very Happy and Healthy New Year to all of you. Maybe this will be the year

of a CML cure. Have to stay positive.

Love & Hugs

Ceil- NYC

dx 6/06-

************ **New year...new news. Be the first to know what is making

headlines. (http://www.aol. com/?ncid= emlcntaolcom0000 0026)

January 6, 2009

Glad you're feeling better Lottie!

:}

J.

________________________________

From: " ceils401@... " <ceils401@...>

Sent: Wednesday, December 31, 2008 6:35:19 PM

Subject: [ ] (no subject)

Hi Everybody

Spoke to Lottie today and she is feeling better. She said that maybe today

they would let her go home. I hope so. The fact that she is better will let us

enjoy New Years Eve. Even though I have never met her we have become good

cyberspace friend. We have a lot in common. I am 75 and married 54 years so you

see we can relate to all the old stuff.

A very Happy and Healthy New Year to all of you. Maybe this will be the year

of a CML cure. Have to stay positive.

Love & Hugs

Ceil- NYC

dx 6/06-

************ **New year...new news. Be the first to know what is making

headlines. (http://www.aol. com/?ncid= emlcntaolcom0000 0026)

November 7, 2009

Ceil,

I was diagnosed in May 2008, and put on 400mg. Gleevec which seemed to start me

in the right direction, until July of this year.Â That's when my numbers

starting climbing again.Â I was increased to 600mg. of Gleevec. MyÂ CML

specialists decided they should wait 6 weeks to check for any change. During the

increase I felt alot more tired again, some swelling around my eyes,Â muscle

pain that wasn't constant, or too horrible, and for me, being 47, it messed with

my hormones for awhile.Â Those side effects really didn't last long, and I'm

feeling pretty good these days.Â Oh, and I FINALLY made it into Zavie's Zero

club!

It was comforting to have the wonderful people on this site to help me through

that very stressful time, and to know that there are second generation drugs out

there in case Gleevec failed me.Â I hope the increase works for you, as it did

me, and thatÂ any side effects subside quickly.

God bless,

#1276 in Zavie's Zero club

________________________________

From: " ceils401@... " <ceils401@...>

Sent: Fri, November 6, 2009 8:09:20 PM

Subject: [ ] (no subject)

Â

Hi everyone.

Haven't posted for a while, but I have a question. My last genetic blood

test showed some of those nasty cellsreturning and a slight increase in my

platelet count. I have been on 400mgs of Gleevec for 3 1/2 years since I was

dx. In a month I was in Zavie's 0 club.

Took a more indepth blood test 3 wks ago which he said would take about 2

wks to get the results. My 55th anniversary was Oct 24th. We went away on a

cruise to celebrate so I told the doctor I would call him on our return. I

called him on Tuesday Nov 3 and he told me to come in for a discussion of

what was to be done. Told my husband at this pt. He doubled the Gleevec to

800mgs. since the platelet count zoomed up and my Coumadin numbers went

south. I have to go back in 2 wks for another test to see if the 800 brings

down the platelet count. My question is- Has anyone taken the 800 and seen an

increase in side effects. My doctor said I may see an increase in fluid

retention and since I get bone pain it may increase. If the increase does not

bring the results he wants then we will move on to another drug. Thank

heaven there other drugs.

Am looking forward to your response. You all are such a wealth of

information and comfort.

Will try to get back in the 0 club soon.

Sorry about the longwinded message but I am concerned.

Ceil(76) NYC

dx 6/06-400 mgs-started 800 today

November 7, 2009

He doubled the Gleevec to

> 800mgs. since the platelet count zoomed up and my Coumadin numbers went

> south. I have to go back in 2 wks for another test to see if the 800 brings

> down the platelet count. My question is- Has anyone taken the 800 and seen an

> increase in side effects. My doctor said I may see an increase in fluid

> retention and since I get bone pain it may increase. If the increase does not

> bring the results he wants then we will move on to another drug.

__________________________

Hi, (sorry I misplaced your name)

I assume it is your PCR that went up, showing more leukemia cells? how much did

it go up.

IF this is a local oncologist, I would definitely want him to consult with one

of the CML specialists about the approach he should be taking...someone like Dr.

Druker. Did your oncologist do a mutations test? Sometimes doubling Gleevec is

effective, but you probably will have more side effects.......and sometimes this

approach does not help. A mutations test can tell IF another drug would be

better for you.

It is when you start having some changes and problems with your present

treatment that you need to somehow involve a CML specialist in the decision

making, which I think your oncologist can do via a phone call. This is not

really the time to have someone who maybe has only treated a small number of CML

patients to start guessing about what to do next.

Things may be fine with you, but you want to get the full picture. I do not

really know the significance of platelets going up. Let us know what you find

out.

Best wishes,

C.

November 7, 2009

Hi lisa,I had to go to 600 G .My onc said I would stay there as long as things

remain good.It has been a bumpy road but it seems I am getting along with the

600 ok . Good Luck TN.

PS My number is 1032