Hello everyone

[Guest guest]

Regarding the message below, I want everyone to know I was including the

nonprofit CHERAB Foundation as well when I said " we. "

[Guest guest]

Hi Jeanne,

Do you know what the Canadian equivalent for this certification is?

Rhonda son Cherrymom to Maddie, age 4, oral-motor sequencing issues, suspected apraxicRichmond Hill, Ontario CANADA

Visit ECHO - Canada's Apraxia Support Group website at http://apraxiaontario.homestead.com/

[Guest guest]

Where do you live Peggy? I used to be able to find the e mail of the sender, and

just ask offlist. Im thinking you should send this note to your representatives

to see how HUD really works (or doesnt)

[] hello everyone

I was researching on the web for sick building syndrome today. I live

in an apartment that leaks water in thru the foundation. I live on

the bottom floor so my carpet gets soaked and then smells musty, gets

black mold and even tiny mushrooms on it. I spray the carpet with

bleach diluted with water and that help. The carpet has been bleached

to white in spots but...oh well. At least half the carpet in my rooms

get wet when it rains. There are many other dangerous factors within

this building that I wont get into at this time. The health effects

that this building has on my family is terible. We all suffer from

various symptoms of SBS. My animals are too suffering from labored

breathing as well as all my plants have died off. I have reported

this the HUD as well as my landlord without any actions being taken.

I know what you are thinking...MOVE OUT. The kicker is that I moved

in here on a section 8 voucher and its has been 5 years since I moved

in. The state is NOT renewing vouchers at this time...I have been 4

years waiting for mine to be returned...meanwhile we are all dying

(yes I feel like we are dying) from the effects here. We are a

working family but the rents without the aid of a voucher are so

expensive that we cant pay it. This building is all we can afford at

this time. I am afraid for my family...I dont know what else to do.

My lungs as I write this feel like they are being squeezed and I am

short of breath (as usual). I just wanted to find others that have or

are still in the same situation as me....sometimes I feel so alone.

[Guest guest]

OH MY GOSH Peggy,

once you report this to HUD Housing in Fortlauderdale I don't know about any

place else but Boca Raton Hope that you live where the people that run HUD

Housing are like the Boca Raton Office. what you should do is get a statement

from your Doctor keep your lease and take pictures. Now if you live under HUD

like Broward County your best bet is to get the Hell out of Dodge! Broward

Housing is like this no matter what your Doctor and any one else say once your

lease is up the Landlord evicted no matter what you do the court no one cares I

pray where every you are they are like Boca they come in a Clean up things make

sure you have others behind you this is fact.

We are a

working family but the rents without the aid of a voucher are so

expensive that we cant pay it. This building is all we can afford at

this time. I am afraid for my family...I don't know what else to do.

My lungs as I write this feel like they are being squeezed and I am

short of breath (as usual). I just wanted to find others that have or

are still in the same situation as me....sometimes I feel so alone.

You see the Voucher was design to destroy Peggy How I wish I could help people

like us it seem we just don't count thank God for the internet Peggy don't give

up.

Peace

Elvira

[] hello everyone

I was researching on the web for sick building syndrome today. I live

in an apartment that leaks water in thru the foundation. I live on

the bottom floor so my carpet gets soaked and then smells musty, gets

black mold and even tiny mushrooms on it. I spray the carpet with

bleach diluted with water and that help. The carpet has been bleached

to white in spots but...oh well. At least half the carpet in my rooms

get wet when it rains. There are many other dangerous factors within

this building that I wont get into at this time. The health effects

that this building has on my family is terible. We all suffer from

various symptoms of SBS. My animals are too suffering from labored

breathing as well as all my plants have died off. I have reported

this the HUD as well as my landlord without any actions being taken.

I know what you are thinking...MOVE OUT. The kicker is that I moved

in here on a section 8 voucher and its has been 5 years since I moved

in. The state is NOT renewing vouchers at this time...I have been 4

years waiting for mine to be returned...meanwhile we are all dying

(yes I feel like we are dying) from the effects here. We are a

working family but the rents without the aid of a voucher are so

expensive that we cant pay it. This building is all we can afford at

this time. I am afraid for my family...I dont know what else to do.

My lungs as I write this feel like they are being squeezed and I am

short of breath (as usual). I just wanted to find others that have or

are still in the same situation as me....sometimes I feel so alone.

FAIR USE NOTICE:

------------------------------------------------------------------------------

[Guest guest]

& Group,

Many of you respond to posts from your email, I do it all right from

the main board and right along side each persons post is a link that

you can email them personally. Apparently this does not show up in

your email.

We used to have the board setup to where anybody could go into the

members list, but the harrassment started. It had been recommended

to me if I could please change that to where it is not viewed by

everybody.

Also, upon many requests and the virus's that I had received myself,

we had to stop attachments.

Even though the group is open to everyone, we had to put ALL new

members on moderation, until it can be determined what their agenda

was. Unfortunately this was done because we had alot of people

joining and just posting porn information, dating services,etc, then

these people would unsubscribe from the group. Kindof hit and run.

This is still going on, but they don't make the main board.

KC

--- In , " Page, " <pageang@l...>

wrote:

> Where do you live Peggy? I used to be able to find the e mail of

the sender, and just ask offlist. Im thinking you should send this

note to your representatives to see how HUD really works (or doesnt)

>

> [] hello everyone

>

>

>

> I was researching on the web for sick building syndrome

today. I live

> in an apartment that leaks water in thru the foundation. I

live on

> the bottom floor so my carpet gets soaked and then smells

musty, gets

> black mold and even tiny mushrooms on it. I spray the carpet

with

> bleach diluted with water and that help. The carpet has been

bleached

> to white in spots but...oh well. At least half the carpet in

my rooms

> get wet when it rains. There are many other dangerous

factors within

> this building that I wont get into at this time. The health

effects

> that this building has on my family is terible. We all

suffer from

> various symptoms of SBS. My animals are too suffering from

labored

> breathing as well as all my plants have died off. I have

reported

> this the HUD as well as my landlord without any actions

being taken.

> I know what you are thinking...MOVE OUT. The kicker is that

I moved

> in here on a section 8 voucher and its has been 5 years

since I moved

> in. The state is NOT renewing vouchers at this time...I have

been 4

> years waiting for mine to be returned...meanwhile we are all

dying

> (yes I feel like we are dying) from the effects here. We are

a

> working family but the rents without the aid of a voucher

are so

> expensive that we cant pay it. This building is all we can

afford at

> this time. I am afraid for my family...I dont know what else

to do.

> My lungs as I write this feel like they are being squeezed

and I am

> short of breath (as usual). I just wanted to find others

that have or

> are still in the same situation as me....sometimes I feel so

alone.

>

>

>

>

>

>

>

[Guest guest]

Thats fine, safer, understandable, as long as people dont mind deleting quick

personal thoughts.....I dont mind that. Ive occasionally wanted to zap you a

note KC, but I think ive saved your e mail somewhere.

[] Re: hello everyone

& Group,

...We used to have the board setup to where anybody could go into the members

list, but the harrassment started. It had been recommended to me if I could

please change that to where it is not viewed by everybody....

KC

--- In , " Page, " pageang@l...>wrote:

Where do you live Peggy? I used to be able to find the e mail of the sender,

and just ask offlist. ....

[Guest guest]

Representatives were also contacted, Nothing.

[] hello everyone

I was researching on the web for sick building syndrome today. I live

in an apartment that leaks water in thru the foundation. I live on

the bottom floor so my carpet gets soaked and then smells musty, gets

black mold and even tiny mushrooms on it. I spray the carpet with

bleach diluted with water and that help. The carpet has been bleached

to white in spots but...oh well. At least half the carpet in my rooms

get wet when it rains. There are many other dangerous factors within

this building that I wont get into at this time. The health effects

that this building has on my family is terible. We all suffer from

various symptoms of SBS. My animals are too suffering from labored

breathing as well as all my plants have died off. I have reported

this the HUD as well as my landlord without any actions being taken.

I know what you are thinking...MOVE OUT. The kicker is that I moved

in here on a section 8 voucher and its has been 5 years since I moved

in. The state is NOT renewing vouchers at this time...I have been 4

years waiting for mine to be returned...meanwhile we are all dying

(yes I feel like we are dying) from the effects here. We are a

working family but the rents without the aid of a voucher are so

expensive that we cant pay it. This building is all we can afford at

this time. I am afraid for my family...I dont know what else to do.

My lungs as I write this feel like they are being squeezed and I am

short of breath (as usual). I just wanted to find others that have or

are still in the same situation as me....sometimes I feel so alone.

FAIR USE NOTICE:

[Guest guest]

I live in New Hampshire.

--- " Page, " <pageang@...> wrote:

> Where do you live Peggy? I used to be able to find

> the e mail of the sender, and just ask offlist. Im

> thinking you should send this note to your

> representatives to see how HUD really works (or

> doesnt)

>

> [] hello everyone

>

>

>

> I was researching on the web for sick building

> syndrome today. I live

> in an apartment that leaks water in thru the

> foundation. I live on

> the bottom floor so my carpet gets soaked and then

> smells musty, gets

> black mold and even tiny mushrooms on it. I spray

> the carpet with

> bleach diluted with water and that help. The carpet

> has been bleached

> to white in spots but...oh well. At least half the

> carpet in my rooms

> get wet when it rains. There are many other

> dangerous factors within

> this building that I wont get into at this time.

> The health effects

> that this building has on my family is terible. We

> all suffer from

> various symptoms of SBS. My animals are too

> suffering from labored

> breathing as well as all my plants have died off. I

> have reported

> this the HUD as well as my landlord without any

> actions being taken.

> I know what you are thinking...MOVE OUT. The kicker

> is that I moved

> in here on a section 8 voucher and its has been 5

> years since I moved

> in. The state is NOT renewing vouchers at this

> time...I have been 4

> years waiting for mine to be returned...meanwhile

> we are all dying

> (yes I feel like we are dying) from the effects

> here. We are a

> working family but the rents without the aid of a

> voucher are so

> expensive that we cant pay it. This building is all

> we can afford at

> this time. I am afraid for my family...I dont know

> what else to do.

> My lungs as I write this feel like they are being

> squeezed and I am

> short of breath (as usual). I just wanted to find

> others that have or

> are still in the same situation as me....sometimes

> I feel so alone.

>

>

>

>

>

>

>

[Guest guest]

Like KC, I have found made changes that make reading at the web

easier and more convenient. People who have not tried that, should

try it just to see the changes. When you hit 'reply', you get three

choices, to group, to poster, to group owner. Responses to post are

at the bottom and posts you've read turn a different color, like they

would in your mailbox.

Barb

--- In , " Page, " <pageang@l...>

wrote:

> Thats fine, safer, understandable, as long as people dont mind

deleting quick personal thoughts.....I dont mind that. Ive

occasionally wanted to zap you a note KC, but I think ive saved your e

mail somewhere.

>

>

[Guest guest]

I hit reply and get no choice

[] Re: hello everyone

Like KC, I have found made changes that make reading at the web

easier and more convenient. People who have not tried that, should

try it just to see the changes. When you hit 'reply', you get three

choices, to group, to poster, to group owner. Responses to post are

at the bottom and posts you've read turn a different color, like they

would in your mailbox.

Barb

> Thats fine, safer, understandable, as long as people dont mind

deleting quick personal thoughts.....I dont mind that. Ive

occasionally wanted to zap you a note KC, but I think ive saved your e

mail somewhere.

>

>

[Guest guest]

, click on the little down arrow to right of field to reveal

choices.

--- In , " Page, " <pageang@l...>

wrote:

> I hit reply and get no choice

>

>

[Guest guest]

nothing by the " to "

just text. thought once in a while a post comes through with that. Id have asked

about this privately, but cant anymore. sorry to those not wanting to follow the

.....

" angela cant zap offline communication anymore " thread. :-)

tried to take a snap of it with " print screen " to show you, but it wont take.

[] Re: hello everyone

, click on the little down arrow to right of field to reveal

choices.

> I hit reply and get no choice

>

>

[Guest guest]

Hi. I am 35 - diagnosed in August after having my enlarged spleen removed in

emergency surgery. I just wanted to say hi. It is interesting to find

someone going through this illness and a 'divorce' or break-up at the same

time. My hubby pushed me out. (I left the house, but he pushed.) I am having

a heck of a time with not only the illness, but the divorce situation too. I

have an appointment on the 16th, but am having headaches and reflux. But I

am getting through each day, and getting stronger!

Tammy

_____

From: [mailto: ] On Behalf Of

chimera46

Sent: Friday, October 05, 2007 6:56 PM

Subject: [ ] Hello everyone

I have been hiding in the background, reading the posts and learning

so much. Here is a bit about me. I'm a divorced mom of a 13 year

old great daughter. I work as a social worker. I graduated from

Penn State and The University of Southern California. I used to love

spicy food and margaritas but I have modified my diet to the healthy

side. I was diagnosed in March after five months of testing when my

Hem/Onc thought I had a platelet disease because they were over 600.

Then my WBC count started flying higher than the space shuttle and I

he sent me for a bone marrow aspiration. I started Gleevec at 300 mg

because my RBC count was so low. My WBC count almost dropped off the

charts but after begging him , he finally moved me up to 400mg. I've

had two Q-RT-PCR tests done. I keep reading taht people get results

in terms of log reductions or %.

Here is what my results say- I have p210 BCR-ABL transcrip but I

don't know if it is b2a2 or b3a2. I have a blurry copy but it

looks like it says- results on 5/29 were 1.1x10-3( to the third

power) and on 7/15/07 the results were 4.4x10-4. Does anyone have

any idea what it means. My Hem/ONc said it shows improvement. My

labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5, ANC

2.28, platelets 332.

I have many of the lovely side effects including losing my color in

my hands, feets, lips and other hyperpigmented parts of my body- very

interesting. The bone pain is strange and the various muscle spasms

are real attention getters when I'm talking to people. Has anyone

else experienced a sensitivity to constriction? My knees socks left

a band of red around my leg with some slight bruising- ok they were

fencing kneesocks which are supposed to not fall down and are tighter

than normal but - still I got a bruise from kneesocks.

I joined Team in Training with TH LLS and will be walking a 1/2

marathon here in Orange County/ Southern California in January and

hopefully another in April in Nashville the day after my 56th b-day.

If anyone is close to either place I'd love to meet you.

Thank you- all of you- so much for posting and giving me a place to

belong. It is nice to have friends on this journey. My boyfriend

left because he couldn't stand to think about me dying- well that was

the excuse anyway. Hang in there everyone.

[Guest guest]

Wow--I had no idea they removed spleens just cuz they are enlarged. Sorry to

hear about your divorce, you will find many people on this forum here to help

you...

From: tammy@...

Date: Fri, 5 Oct 2007 22:30:30 -0400

Subject: RE: [ ] Hello everyone

Hi. I am 35 - diagnosed in August after having my enlarged spleen

removed in

emergency surgery. I just wanted to say hi. It is interesting to find

someone going through this illness and a 'divorce' or break-up at the same

time. My hubby pushed me out. (I left the house, but he pushed.) I am having

a heck of a time with not only the illness, but the divorce situation too. I

have an appointment on the 16th, but am having headaches and reflux. But I

am getting through each day, and getting stronger!

Tammy

_____

From: [mailto: ] On Behalf Of

chimera46

Sent: Friday, October 05, 2007 6:56 PM

Subject: [ ] Hello everyone

I have been hiding in the background, reading the posts and learning

so much. Here is a bit about me. I'm a divorced mom of a 13 year

old great daughter. I work as a social worker. I graduated from

Penn State and The University of Southern California. I used to love

spicy food and margaritas but I have modified my diet to the healthy

side. I was diagnosed in March after five months of testing when my

Hem/Onc thought I had a platelet disease because they were over 600.

Then my WBC count started flying higher than the space shuttle and I

he sent me for a bone marrow aspiration. I started Gleevec at 300 mg

because my RBC count was so low. My WBC count almost dropped off the

charts but after begging him , he finally moved me up to 400mg. I've

had two Q-RT-PCR tests done. I keep reading taht people get results

in terms of log reductions or %.

Here is what my results say- I have p210 BCR-ABL transcrip but I

don't know if it is b2a2 or b3a2. I have a blurry copy but it

looks like it says- results on 5/29 were 1.1x10-3( to the third

power) and on 7/15/07 the results were 4.4x10-4. Does anyone have

any idea what it means. My Hem/ONc said it shows improvement. My

labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5, ANC

2.28, platelets 332.

I have many of the lovely side effects including losing my color in

my hands, feets, lips and other hyperpigmented parts of my body- very

interesting. The bone pain is strange and the various muscle spasms

are real attention getters when I'm talking to people. Has anyone

else experienced a sensitivity to constriction? My knees socks left

a band of red around my leg with some slight bruising- ok they were

fencing kneesocks which are supposed to not fall down and are tighter

than normal but - still I got a bruise from kneesocks.

I joined Team in Training with TH LLS and will be walking a 1/2

marathon here in Orange County/ Southern California in January and

hopefully another in April in Nashville the day after my 56th b-day.

If anyone is close to either place I'd love to meet you.

Thank you- all of you- so much for posting and giving me a place to

belong. It is nice to have friends on this journey. My boyfriend

left because he couldn't stand to think about me dying- well that was

the excuse anyway. Hang in there everyone.

[Guest guest]

,

No, it was broken too. (For some reason the word that describes that escapes

me.) It was too heavy they figured, and cracked open.

Thanks.

Tammy

[ ] Hello everyone

I have been hiding in the background, reading the posts and learning

so much. Here is a bit about me. I'm a divorced mom of a 13 year

old great daughter. I work as a social worker. I graduated from

Penn State and The University of Southern California. I used to love

spicy food and margaritas but I have modified my diet to the healthy

side. I was diagnosed in March after five months of testing when my

Hem/Onc thought I had a platelet disease because they were over 600.

Then my WBC count started flying higher than the space shuttle and I

he sent me for a bone marrow aspiration. I started Gleevec at 300 mg

because my RBC count was so low. My WBC count almost dropped off the

charts but after begging him , he finally moved me up to 400mg. I've

had two Q-RT-PCR tests done. I keep reading taht people get results

in terms of log reductions or %.

Here is what my results say- I have p210 BCR-ABL transcrip but I

don't know if it is b2a2 or b3a2. I have a blurry copy but it

looks like it says- results on 5/29 were 1.1x10-3( to the third

power) and on 7/15/07 the results were 4.4x10-4. Does anyone have

any idea what it means. My Hem/ONc said it shows improvement. My

labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5, ANC

2.28, platelets 332.

I have many of the lovely side effects including losing my color in

my hands, feets, lips and other hyperpigmented parts of my body- very

interesting. The bone pain is strange and the various muscle spasms

are real attention getters when I'm talking to people. Has anyone

else experienced a sensitivity to constriction? My knees socks left

a band of red around my leg with some slight bruising- ok they were

fencing kneesocks which are supposed to not fall down and are tighter

than normal but - still I got a bruise from kneesocks.

I joined Team in Training with TH LLS and will be walking a 1/2

marathon here in Orange County/ Southern California in January and

hopefully another in April in Nashville the day after my 56th b-day.

If anyone is close to either place I'd love to meet you.

Thank you- all of you- so much for posting and giving me a place to

belong. It is nice to have friends on this journey. My boyfriend

left because he couldn't stand to think about me dying- well that was

the excuse anyway. Hang in there everyone.

[Guest guest]

Wow,

I am sorry for you Tammy and chimera. I know the feeling though because my

wife left me shortly after my dx in April of 04. I even had " the talk " with

her about how many marriages and relationships do not survive cancer or

Leukemia and the whole time she said we would be fine. Then she stopped

going with me to doctor visits, stopped even asking what the doctor said,

and started hovering on websites that talked about the end of the

world..lol. She basically lost her mind in my opinion, even going as far as

telling my then 11 year old son and 15 year old step-son it was their fault

I was sick???

I had to be the one after over a year to file and pay for the divorce, but

it was worth it. I found out later she had made a profile on an online

dating service 10 days before she told me to leave..lol.The woman I married

before being dx'ed does not exist anymore. It was like flipping a switch,

she turned from a caring loving wife, to a self centered, psychotic nutjob.

I have came to realize that those that disappear from your life when they

find out you have CML, you were better off without in the long run. A bit of

advice for you if you happen to be on pain meds...If you meet someone online

or even in real life (as I call it) DO NOT let them know you are taking pain

medication! Unfortunately before I met the lovely lady I am married to now,

I met a couple of " ladies " that once they found out I had pain meds showed

interest until I closed the pharmacy..lol. The woman I am married to now

does worry sometimes about me, but she does not bother my medications, and

is very supportive.

I have been on 400mg's of Gleevec since April of 04, and still have bone

pain, those embarrassing muscle cramps(they do tend to happen at the worst

times..lol) fatigue, nausea, and I cannot keep weight on. I was 160 now I

hover between 137 to 140lbs. The only side effect that really has subsided

over the years is the eye swelling. Over all though I cannot complain, I

have (now) a great wife, and family. Granted we are not at the financial

level I am use to because I am unable to work, but we get by and are far

from living on the street. I have had to get used to being on SSD, and

medicare because until recently I was able to keep my insurance from my

previous job, but there are allot of people far worse off then I am. So hang

in there things do and will get better. My docs tell me the Gleevec is still

working great and most of my side effects are managed by other medications.

I am now 40 and plan on seeing my grand kids grow...Just not ready for my

kids to be parents just yet though..lol.

Terry

Dxed April 04

40 years old

On 10/5/07, Tammy Ferns <tammy@...> wrote:

>

> ,

> No, it was broken too. (For some reason the word that describes that

> escapes

> me.) It was too heavy they figured, and cracked open.

> Thanks.

> Tammy

>

> [ ] Hello everyone

>

> I have been hiding in the background, reading the posts and learning

>

> so much. Here is a bit about me. I'm a divorced mom of a 13 year

>

> old great daughter. I work as a social worker. I graduated from

>

> Penn State and The University of Southern California. I used to love

>

> spicy food and margaritas but I have modified my diet to the healthy

>

> side. I was diagnosed in March after five months of testing when my

>

> Hem/Onc thought I had a platelet disease because they were over 600.

>

> Then my WBC count started flying higher than the space shuttle and I

>

> he sent me for a bone marrow aspiration. I started Gleevec at 300 mg

>

> because my RBC count was so low. My WBC count almost dropped off the

>

> charts but after begging him , he finally moved me up to 400mg. I've

>

> had two Q-RT-PCR tests done. I keep reading taht people get results

>

> in terms of log reductions or %.

>

> Here is what my results say- I have p210 BCR-ABL transcrip but I

>

> don't know if it is b2a2 or b3a2. I have a blurry copy but it

>

> looks like it says- results on 5/29 were 1.1x10-3( to the third

>

> power) and on 7/15/07 the results were 4.4x10-4. Does anyone have

>

> any idea what it means. My Hem/ONc said it shows improvement. My

>

> labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5, ANC

>

> 2.28, platelets 332.

>

> I have many of the lovely side effects including losing my color in

>

> my hands, feets, lips and other hyperpigmented parts of my body- very

>

> interesting. The bone pain is strange and the various muscle spasms

>

> are real attention getters when I'm talking to people. Has anyone

>

> else experienced a sensitivity to constriction? My knees socks left

>

> a band of red around my leg with some slight bruising- ok they were

>

> fencing kneesocks which are supposed to not fall down and are tighter

>

> than normal but - still I got a bruise from kneesocks.

>

> I joined Team in Training with TH LLS and will be walking a 1/2

>

> marathon here in Orange County/ Southern California in January and

>

> hopefully another in April in Nashville the day after my 56th b-day.

>

> If anyone is close to either place I'd love to meet you.

>

> Thank you- all of you- so much for posting and giving me a place to

>

> belong. It is nice to have friends on this journey. My boyfriend

>

> left because he couldn't stand to think about me dying- well that was

>

> the excuse anyway. Hang in there everyone.

>

>

[Guest guest]

No, it was broken too. (For some reason the word that describes that escapes

me.) It was too heavy they figured, and cracked open.

_______________

Hi Tammy,

It was a ruptured spleen.

Also to the person who wrote about the sensitivity to constriction with

knee socks....this is because even though it is not always real obvious,

you have edema and so anything tight will cause a problem and can leave a

mark on the skin. If you end up with some weight gain, it is often from the

edema (fluid accumulation).

Welcome to all the newbies (newly diagnosed or newly posting).

A real old timer.......dx 9 years ago.

C.

[Guest guest]

Hi Terry and the other listers who have had marriage problems,

What an absolute kick in the guts - particularly when CML is not as

debilitating as a lot of other cancers or illnesses (I guess that has to be

taken in the context of how each individual deals with their illness and

symptoms). Having been a nurse, I know there are a lot worse things in life!

I'm so glad you have got a supportive wife now Terry, it must have been a

terrible time to go through with dealing with your illness and then the

marriage breakup.

I was wondering with the comments in the past week, how many people find

they cannot work now? Also, I wonder about the muscle cramps. I haven't

experienced any yet (touch wood), however my haem/t put me straight onto

magnesium supplements 3 times a day to help stop them.

I am the main income earner and have a very supportive boss and

organization, but am still pretty flying it at this stage as to how I will

cope. I also have inflammatory bowel disease, which has been settled for

quite some time, but now lovely Glivec is stirring it all up and gastric

reflux.

Of the listers who work full time, can you remember back to how you coped at

the time and managed to work - did you have to work shorter hours initially?

And the long term listers - what sort of chronic symptoms do you have still?

Regards,

www.geocities.com/rodorbal

http://au./group/Ozlabradors/

www.labradata.com

[ ] Hello everyone

>

> I have been hiding in the background, reading the posts and learning

>

> so much. Here is a bit about me. I'm a divorced mom of a 13 year

>

> old great daughter. I work as a social worker. I graduated from

>

> Penn State and The University of Southern California. I used to love

>

> spicy food and margaritas but I have modified my diet to the healthy

>

> side. I was diagnosed in March after five months of testing when my

>

> Hem/Onc thought I had a platelet disease because they were over 600.

>

> Then my WBC count started flying higher than the space shuttle and I

>

> he sent me for a bone marrow aspiration. I started Gleevec at 300 mg

>

> because my RBC count was so low. My WBC count almost dropped off the

>

> charts but after begging him , he finally moved me up to 400mg. I've

>

> had two Q-RT-PCR tests done. I keep reading taht people get results

>

> in terms of log reductions or %.

>

> Here is what my results say- I have p210 BCR-ABL transcrip but I

>

> don't know if it is b2a2 or b3a2. I have a blurry copy but it

>

> looks like it says- results on 5/29 were 1.1x10-3( to the third

>

> power) and on 7/15/07 the results were 4.4x10-4. Does anyone have

>

> any idea what it means. My Hem/ONc said it shows improvement. My

>

> labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5, ANC

>

> 2.28, platelets 332.

>

> I have many of the lovely side effects including losing my color in

>

> my hands, feets, lips and other hyperpigmented parts of my body- very

>

> interesting. The bone pain is strange and the various muscle spasms

>

> are real attention getters when I'm talking to people. Has anyone

>

> else experienced a sensitivity to constriction? My knees socks left

>

> a band of red around my leg with some slight bruising- ok they were

>

> fencing kneesocks which are supposed to not fall down and are tighter

>

> than normal but - still I got a bruise from kneesocks.

>

> I joined Team in Training with TH LLS and will be walking a 1/2

>

> marathon here in Orange County/ Southern California in January and

>

> hopefully another in April in Nashville the day after my 56th b-day.

>

> If anyone is close to either place I'd love to meet you.

>

> Thank you- all of you- so much for posting and giving me a place to

>

> belong. It is nice to have friends on this journey. My boyfriend

>

> left because he couldn't stand to think about me dying- well that was

>

> the excuse anyway. Hang in there everyone.

>

>

[Guest guest]

Hi Chimera,

Welcome to the group.

When you report your PCR numbers, are you sure they're reported as 10

to the 3rd and 4th power and not 10 to the negative 3 and 4? The

most important thing you want to see with PCR results, is that the

number drops each time. You also want to use the same lab each time

because each lab has a different way of doing the test and you want

to be able to compare apples to apples, not apples to oranges.

The loss of colour that you describe in your lips, hands and feet is

probably due to your anemia rather than the Gleevec itself.

Typically when Gleevec causes hypopigmentation, it's generalized

everywhere, not localized in one or two small body parts. Your

hemoglobin is quite low so that could explain why you're pale in the

lips (and probably very tired).

I assume you meant that the 58.5 was your neutrophil percentage and

not your absolute neutrophil count? The absolute neutrophil count is

more important to know than the percentage. Ideally, you want to

have your ANC (absolute neutrophil count) above 1000.

Take care,

Tracey

dx Jan 2002

>

> I have been hiding in the background, reading the posts and

learning

> so much. Here is a bit about me. I'm a divorced mom of a 13 year

> old great daughter. I work as a social worker. I graduated from

> Penn State and The University of Southern California. I used to

love

> spicy food and margaritas but I have modified my diet to the

healthy

> side. I was diagnosed in March after five months of testing when my

> Hem/Onc thought I had a platelet disease because they were over

600.

> Then my WBC count started flying higher than the space shuttle and

I

> he sent me for a bone marrow aspiration. I started Gleevec at 300

mg

> because my RBC count was so low. My WBC count almost dropped off

the

> charts but after begging him , he finally moved me up to 400mg.

I've

> had two Q-RT-PCR tests done. I keep reading taht people get

results

> in terms of log reductions or %.

>

> Here is what my results say- I have p210 BCR-ABL transcrip but I

> don't know if it is b2a2 or b3a2. I have a blurry copy but it

> looks like it says- results on 5/29 were 1.1x10-3( to the third

> power) and on 7/15/07 the results were 4.4x10-4. Does anyone have

> any idea what it means. My Hem/ONc said it shows improvement. My

> labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5,

ANC

> 2.28, platelets 332.

>

> I have many of the lovely side effects including losing my color in

> my hands, feets, lips and other hyperpigmented parts of my body-

very

> interesting. The bone pain is strange and the various muscle spasms

> are real attention getters when I'm talking to people. Has anyone

> else experienced a sensitivity to constriction? My knees socks

left

> a band of red around my leg with some slight bruising- ok they

were

> fencing kneesocks which are supposed to not fall down and are

tighter

> than normal but - still I got a bruise from kneesocks.

>

> I joined Team in Training with TH LLS and will be walking a 1/2

> marathon here in Orange County/ Southern California in January and

> hopefully another in April in Nashville the day after my 56th b-

day.

> If anyone is close to either place I'd love to meet you.

>

> Thank you- all of you- so much for posting and giving me a place

to

> belong. It is nice to have friends on this journey. My boyfriend

> left because he couldn't stand to think about me dying- well that

was

> the excuse anyway. Hang in there everyone.

>

[Guest guest]

my haem/t put me straight onto

> magnesium supplements 3 times a day to help stop them.

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

Hi ,

I also take magnesium once in a while but if I took it 3 times a day, I

don't think I'd ever be able to leave the bathroom. If you find that

this becomes a problem for you, I've found that Imodium works very well.

As for the working, many of our members have continued to work full

time just as they did prior to their diagnosis while others have had to

cut back or even stop. Like the amount of side effects you'll get,

it's a very individualized thing. Typically the worst is at the

beginning so if you're managing well in the first month or two, you'll

most likely continue to do well thereafter.

Take care,

Tracey

dx Jan 2002

[Guest guest]

Hi Tracey - I didn't know that about magnesium! The new reflux tab I'm on is

causing issues, so perhaps between it and Glivec are causing the gut

problems. Immodium and I are great friends from long standing, so will head

to the chemist tomorrow.

It is interesting reading how we all have different problems with Glivec

from time to time.

Regards,

Rodorbal Labradors & Dachshund Smooths Australia

www.geocities.com/rodorbal

http://au./group/Ozlabradors/

www.labradata.com

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Sunday, 7 October 2007 8:46 PM

Subject: Re: [ ] Hello everyone

my haem/t put me straight onto

> magnesium supplements 3 times a day to help stop them.

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

Hi ,

I also take magnesium once in a while but if I took it 3 times a day, I

don't think I'd ever be able to leave the bathroom. If you find that

this becomes a problem for you, I've found that Imodium works very well.

As for the working, many of our members have continued to work full

time just as they did prior to their diagnosis while others have had to

cut back or even stop. Like the amount of side effects you'll get,

it's a very individualized thing. Typically the worst is at the

beginning so if you're managing well in the first month or two, you'll

most likely continue to do well thereafter.

Take care,

Tracey

dx Jan 2002

[Guest guest]

Hi Chimera,

Could you please contact me.

Thanks,

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

>

> I have been hiding in the background, reading the posts and

learning

> so much. Here is a bit about me. I'm a divorced mom of a 13 year

> old great daughter. I work as a social worker. I graduated from

> Penn State and The University of Southern California. I used to

love

> spicy food and margaritas but I have modified my diet to the

healthy

> side. I was diagnosed in March after five months of testing when

my

> Hem/Onc thought I had a platelet disease because they were over

600.

> Then my WBC count started flying higher than the space shuttle and

I

> he sent me for a bone marrow aspiration. I started Gleevec at 300

mg

> because my RBC count was so low. My WBC count almost dropped off

the

> charts but after begging him , he finally moved me up to 400mg.

I've

> had two Q-RT-PCR tests done. I keep reading taht people get

results

> in terms of log reductions or %.

>

> Here is what my results say- I have p210 BCR-ABL transcrip but I

> don't know if it is b2a2 or b3a2. I have a blurry copy but it

> looks like it says- results on 5/29 were 1.1x10-3( to the third

> power) and on 7/15/07 the results were 4.4x10-4. Does anyone

have

> any idea what it means. My Hem/ONc said it shows improvement. My

> labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW 17.6, Neut 58.5,

ANC

> 2.28, platelets 332.

>

> I have many of the lovely side effects including losing my color

in

> my hands, feets, lips and other hyperpigmented parts of my body-

very

> interesting. The bone pain is strange and the various muscle

spasms

> are real attention getters when I'm talking to people. Has anyone

> else experienced a sensitivity to constriction? My knees socks

left

> a band of red around my leg with some slight bruising- ok they

were

> fencing kneesocks which are supposed to not fall down and are

tighter

> than normal but - still I got a bruise from kneesocks.

>

> I joined Team in Training with TH LLS and will be walking a 1/2

> marathon here in Orange County/ Southern California in January and

> hopefully another in April in Nashville the day after my 56th b-

day.

> If anyone is close to either place I'd love to meet you.

>

> Thank you- all of you- so much for posting and giving me a place

to

> belong. It is nice to have friends on this journey. My boyfriend

> left because he couldn't stand to think about me dying- well that

was

> the excuse anyway. Hang in there everyone.

>

[Guest guest]

Hi Zavie,

Thanks for the note. Is there something ou wanted to

tell me?

--- Zavie <zmiller@...> wrote:

> Hi Chimera,

>

> Could you please contact me.

>

> Thanks,

>

> Zavie

>

>

> Zavie (age 69)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

>

>

>

> >

> > I have been hiding in the background, reading the

> posts and

> learning

> > so much. Here is a bit about me. I'm a divorced

> mom of a 13 year

> > old great daughter. I work as a social worker. I

> graduated from

> > Penn State and The University of Southern

> California. I used to

> love

> > spicy food and margaritas but I have modified my

> diet to the

> healthy

> > side. I was diagnosed in March after five months

> of testing when

> my

> > Hem/Onc thought I had a platelet disease because

> they were over

> 600.

> > Then my WBC count started flying higher than the

> space shuttle and

> I

> > he sent me for a bone marrow aspiration. I

> started Gleevec at 300

> mg

> > because my RBC count was so low. My WBC count

> almost dropped off

> the

> > charts but after begging him , he finally moved me

> up to 400mg.

> I've

> > had two Q-RT-PCR tests done. I keep reading taht

> people get

> results

> > in terms of log reductions or %.

> >

> > Here is what my results say- I have p210 BCR-ABL

> transcrip but I

> > don't know if it is b2a2 or b3a2. I have a

> blurry copy but it

> > looks like it says- results on 5/29 were 1.1x10-3(

> to the third

> > power) and on 7/15/07 the results were 4.4x10-4.

> Does anyone

> have

> > any idea what it means. My Hem/ONc said it shows

> improvement. My

> > labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW

> 17.6, Neut 58.5,

> ANC

> > 2.28, platelets 332.

> >

> > I have many of the lovely side effects including

> losing my color

> in

> > my hands, feets, lips and other hyperpigmented

> parts of my body-

> very

> > interesting. The bone pain is strange and the

> various muscle

> spasms

> > are real attention getters when I'm talking to

> people. Has anyone

> > else experienced a sensitivity to constriction?

> My knees socks

> left

> > a band of red around my leg with some slight

> bruising- ok they

> were

> > fencing kneesocks which are supposed to not fall

> down and are

> tighter

> > than normal but - still I got a bruise from

> kneesocks.

> >

> > I joined Team in Training with TH LLS and will be

> walking a 1/2

> > marathon here in Orange County/ Southern

> California in January and

> > hopefully another in April in Nashville the day

> after my 56th b-

> day.

> > If anyone is close to either place I'd love to

> meet you.

> >

> > Thank you- all of you- so much for posting and

> giving me a place

> to

> > belong. It is nice to have friends on this

> journey. My boyfriend

> > left because he couldn't stand to think about me

> dying- well that

> was

> > the excuse anyway. Hang in there everyone.

> >

>

>

>

________________________________________________________________________________\

____

Catch up on fall's hot new shows on TV. Watch previews, get listings, and

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[Guest guest]

Hello Everyone.

I realized I forgot to add my name.

My name is China pronounced Cheena- my friends call me

Chi like the energy. So tired lately - I haven't seen

the last tests but I'm sure it's just the anemia.

Again thank you all for your strength I am so glad to

have found this group. To anyone who has lost a

partner through divorce or break up, I say we are

better off without them- we need mates from the

warrior class and here is the thing- we would be there

for our ppartners if the roles were reversed, no? For

those of you who have partners who are walking this

beside you, Please give them a hug from me.

Chi

--- chimera46 <chimera46@...> wrote:

> I have been hiding in the background, reading the

> posts and learning

> so much. Here is a bit about me. I'm a divorced

> mom of a 13 year

> old great daughter. I work as a social worker. I

> graduated from

> Penn State and The University of Southern

> California. I used to love

> spicy food and margaritas but I have modified my

> diet to the healthy

> side. I was diagnosed in March after five months of

> testing when my

> Hem/Onc thought I had a platelet disease because

> they were over 600.

> Then my WBC count started flying higher than the

> space shuttle and I

> he sent me for a bone marrow aspiration. I started

> Gleevec at 300 mg

> because my RBC count was so low. My WBC count almost

> dropped off the

> charts but after begging him , he finally moved me

> up to 400mg. I've

> had two Q-RT-PCR tests done. I keep reading taht

> people get results

> in terms of log reductions or %.

>

> Here is what my results say- I have p210 BCR-ABL

> transcrip but I

> don't know if it is b2a2 or b3a2. I have a blurry

> copy but it

> looks like it says- results on 5/29 were 1.1x10-3(

> to the third

> power) and on 7/15/07 the results were 4.4x10-4.

> Does anyone have

> any idea what it means. My Hem/ONc said it shows

> improvement. My

> labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW

> 17.6, Neut 58.5, ANC

> 2.28, platelets 332.

>

> I have many of the lovely side effects including

> losing my color in

> my hands, feets, lips and other hyperpigmented parts

> of my body- very

> interesting. The bone pain is strange and the

> various muscle spasms

> are real attention getters when I'm talking to

> people. Has anyone

> else experienced a sensitivity to constriction? My

> knees socks left

> a band of red around my leg with some slight

> bruising- ok they were

> fencing kneesocks which are supposed to not fall

> down and are tighter

> than normal but - still I got a bruise from

> kneesocks.

>

> I joined Team in Training with TH LLS and will be

> walking a 1/2

> marathon here in Orange County/ Southern California

> in January and

> hopefully another in April in Nashville the day

> after my 56th b-day.

> If anyone is close to either place I'd love to meet

> you.

>

> Thank you- all of you- so much for posting and

> giving me a place to

> belong. It is nice to have friends on this journey.

> My boyfriend

> left because he couldn't stand to think about me

> dying- well that was

> the excuse anyway. Hang in there everyone.

>

>

________________________________________________________________________________\

____

oneSearch: Finally, mobile search

that gives answers, not web links.

http://mobile./mobileweb/onesearch?refer=1ONXIC

[Guest guest]

Tracey,

Thank you for responding. You are correct- the way

my Hem/Onc wrote the result made it look like it was

the third /4th power but when I looked closely at this

blurry print on the actual report -it is 10 to the

negative 3 and 4. But everything I read online

measures progress in log reduction- I already feel

like I am in a foreign land with people speaking

another language-then when I finally learn the

language they switch to another. Is there a way to

have them convert this info to te log reductions? They

are usuing City of Hope for a lab so I feel good about

that.I am with an HMO and I have to be my own

advocate. I don't have another appointment scheduled

until December. I'm going to bug them for another

round of tests because I have been very tired the last

few days. You were right also the Neut- was

percentage. My ANC was 2.28 in August. I tested in

September but haven't been given the results.

Regarding my becoming lighter- well here's the thing.

I don't know if I mentioned that I am a black woman.

Although I am a light brown ( think Halle B- just the

color tho) the difference is noticible. Initially the

color fading was just at my first knuckle but now it

ahs expanded to cover all of my fingers. The palms of

my hands are light but that could be the anemia. It

was very noticiable with my feet. The nice thing is

the skin does tan so living in California I am able to

even things out. The thing with my lips is that they

used to be brown and now they are pink, like the color

was stripped away. My hem/onc hasn't seen me since

July so he hasn't seen the changes. If all of this is

caused by anemia should I ask for iron supplements?

Again- Thank you to all for being there. It is easy

to feel alone. If I feel well enough I'm headed to

Ohio this week for the Quarter Horse Congress - any

friends in the Buckeye State?

Chi

--- Tracey <traceyincanada@...> wrote:

> Hi Chimera,

>

> Welcome to the group.

>

> When you report your PCR numbers, are you sure

> they're reported as 10

> to the 3rd and 4th power and not 10 to the negative

> 3 and 4? The

> most important thing you want to see with PCR

> results, is that the

> number drops each time. You also want to use the

> same lab each time

> because each lab has a different way of doing the

> test and you want

> to be able to compare apples to apples, not apples

> to oranges.

>

> The loss of colour that you describe in your lips,

> hands and feet is

> probably due to your anemia rather than the Gleevec

> itself.

> Typically when Gleevec causes hypopigmentation, it's

> generalized

> everywhere, not localized in one or two small body

> parts. Your

> hemoglobin is quite low so that could explain why

> you're pale in the

> lips (and probably very tired).

>

> I assume you meant that the 58.5 was your neutrophil

> percentage and

> not your absolute neutrophil count? The absolute

> neutrophil count is

> more important to know than the percentage.

> Ideally, you want to

> have your ANC (absolute neutrophil count) above

> 1000.

>

> Take care,

> Tracey

> dx Jan 2002

>

>

>

> >

> > I have been hiding in the background, reading the

> posts and

> learning

> > so much. Here is a bit about me. I'm a divorced

> mom of a 13 year

> > old great daughter. I work as a social worker. I

> graduated from

> > Penn State and The University of Southern

> California. I used to

> love

> > spicy food and margaritas but I have modified my

> diet to the

> healthy

> > side. I was diagnosed in March after five months

> of testing when my

> > Hem/Onc thought I had a platelet disease because

> they were over

> 600.

> > Then my WBC count started flying higher than the

> space shuttle and

> I

> > he sent me for a bone marrow aspiration. I

> started Gleevec at 300

> mg

> > because my RBC count was so low. My WBC count

> almost dropped off

> the

> > charts but after begging him , he finally moved me

> up to 400mg.

> I've

> > had two Q-RT-PCR tests done. I keep reading taht

> people get

> results

> > in terms of log reductions or %.

> >

> > Here is what my results say- I have p210 BCR-ABL

> transcrip but I

> > don't know if it is b2a2 or b3a2. I have a

> blurry copy but it

> > looks like it says- results on 5/29 were 1.1x10-3(

> to the third

> > power) and on 7/15/07 the results were 4.4x10-4.

> Does anyone have

> > any idea what it means. My Hem/ONc said it shows

> improvement. My

> > labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW

> 17.6, Neut 58.5,

> ANC

> > 2.28, platelets 332.

> >

> > I have many of the lovely side effects including

> losing my color in

> > my hands, feets, lips and other hyperpigmented

> parts of my body-

> very

> > interesting. The bone pain is strange and the

> various muscle spasms

> > are real attention getters when I'm talking to

> people. Has anyone

> > else experienced a sensitivity to constriction?

> My knees socks

> left

> > a band of red around my leg with some slight

> bruising- ok they

> were

> > fencing kneesocks which are supposed to not fall

> down and are

> tighter

> > than normal but - still I got a bruise from

> kneesocks.

> >

> > I joined Team in Training with TH LLS and will be

> walking a 1/2

> > marathon here in Orange County/ Southern

> California in January and

> > hopefully another in April in Nashville the day

> after my 56th b-

> day.

> > If anyone is close to either place I'd love to

> meet you.

> >

> > Thank you- all of you- so much for posting and

> giving me a place

> to

> > belong. It is nice to have friends on this

> journey. My boyfriend

> > left because he couldn't stand to think about me

> dying- well that

> was

> > the excuse anyway. Hang in there everyone.

> >

>

>

>

________________________________________________________________________________\

____

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