Hello

[Guest guest]

We have plenty of fun, too. A warm welcome to you, . Some of the people

who post here are incredibly smart, and they know how to translate academic talk

into just plain talk, for which I am very grateful. Are you taking Gleevec?

in San Francisco

From: mylifemyhappiness@...

Date: Tue, 7 Jul 2009 19:17:03 +0000

Subject: [ ] hello

My name is and I am 25. I was recently diagnosed with cml. I've

been reading the post and you all seem to have so much info. and knowledge. good

luck and God bless to all.

_________________________________________________________________

found her dream laptop. Find the PC that’s right for you.

http://www.microsoft.com/windows/choosepc/?ocid=ftp_val_wl_290

[Guest guest]

Hi, . I am 32 years old and I have had CML since July, 2007. At the time

that I was diagnosed, my sons were 1 and 4 and it was a shock and a big terrible

blow. I remember feeling like someone hit me on the side of the head with a

sledgehammer. My sons are now 3 and 6 and I have been taking Gleevec 400 mg for

these last two years. A lot of people here were wonderful about addressing some

of my fears and giving me a lot of hope for a long life. It won't be a perfect

life but it will be a life. Everyone here was right, there are actually some

moments where I am so busy living that I don't think about the CML. God willing

there will be a cure for all of us soon. Have lots of hope and stay strong.

NYC

>

> My name is and I am 25. I was recently diagnosed with cml. I've been

reading the post and you all seem to have so much info. and knowledge. good luck

and God bless to all.

>

[Guest guest]

Thanks for the response. Knowing that other people are there and know what you

are going through is a blessing. I figure i could tell you all a little about

myself. I have 2 girls, 8 and 4. I am a cheerleading coach for a christian

cheerleading league and a full-time college student going for special education.

The diagnosis was a blow but I have all the faith in the world. I am sure there

will be lots of ups and downs. I also have Crohn's disease which can also be

difficult. I have been on Gleevec for a month and went for my check-up

yesterday. My blood counts were back to normal. The doc said to make sure i get

my weekly test because the drug can cause the blood count to be too low. I feel

so blessed. I will keep praying for you all and hope that things are good. Smile

for there is always a reason to if you look hard enough.

>

> Hi :

> Please get involved in our group. Don't just check the posts.

> We have so many people all ages,and from all over the place.

> Always someone to respond to you at anytime you need advice.

> We have some new additions to the group, and some of us like me has had CML

for many years.

> I will be at ll years in December of this year. I hope we hear from you.

> God Bless You

>

[Guest guest]

I have always said " smile and the whole world will smile with you " !!! We all

have reasons to smile everyday even if it is just a fun memory that makes us

smile. Smiles are contagious too so let's all spread this disease 'cause it's a

good one to have! SMILING!!!!!!!!

Counting my blessings and SMILING!

From: mylifemyhappiness <mylifemyhappiness@...>

Subject: [ ] Re: Hello

Date: Friday, July 10, 2009, 4:59 PM

Thanks for the response. Knowing that other people are there and know what you

are going through is a blessing. I figure i could tell you all a little about

myself. I have 2 girls, 8 and 4. I am a cheerleading coach for a christian

cheerleading league and a full-time college student going for special education.

The diagnosis was a blow but I have all the faith in the world.. I am sure there

will be lots of ups and downs. I also have Crohn's disease which can also be

difficult. I have been on Gleevec for a month and went for my check-up

yesterday. My blood counts were back to normal. The doc said to make sure i get

my weekly test because the drug can cause the blood count to be too low. I feel

so blessed. I will keep praying for you all and hope that things are good. Smile

for there is always a reason to if you look hard enough.

>

> Hi :

> Please get involved in our group. Don't just check the posts.

> We have so many people all ages,and from all over the place.

> Always someone to respond to you at anytime you need advice.

> We have some new additions to the group, and some of us like me has had CML

for many years.

> I will be at ll years in December of this year. I hope we hear from you.

> God Bless You

>

[Guest guest]

Merry Christmas to You Too and a Very Happy New Year.

From: edultrasound <edultrasound@...>

Subject: [ ] Hello

Date: Thursday, December 24, 2009, 3:31 PM

 

Wishing you all Merry Christmas and a Happy New Year.

Edgardo.

[Guest guest]

I too am a RN.  I was diagnosed about four years ago.  I am a manager and my

co-workers poo-pooed all of my symptoms as well as my horrible reactions to

methotrexate.  That was pretty frustrating. I had pain in my feet for years and

I chalked it up to being a labor and delivery nurse on my feet for hours. I have

had some brief good response to medications after I took my self off of MtX.  I

had Enbrel, then Humira, and last Orencia combined with Immuran.  However, it

just quite working.  So Monday I see rheumatologist to find out what is next.  I

hurt pretty bad and I am gettng joint damage, but have not missed work at all in

last year due to RA. I guess I just deal with it.

Dale Ellen

[Guest guest]

Hi Dale Ellen - I was curious as to why you stopped the MTX. I take Enbrel on

Thursdays and MTX on Mondays. It is my understand that a lot of these biologics

work better in conjunction with something else (like MTX). I pray you get good

answers when you see your Rheumy on Monday and he can get you back on a path to

pain freedom. Keep us posted.

Doreen

I too am a RN.  I was diagnosed about four years ago.  I am a manager and my

co-workers poo-pooed all of my symptoms as well as my horrible reactions to

methotrexate.  That was pretty frustrating. I had pain in my feet for years and

I chalked it up to being a labor and delivery nurse on my feet for hours. I have

had some brief good response to medications after I took my self off of MtX.  I

had Enbrel, then Humira, and last Orencia combined with Immuran.  However, it

just quite working.  So Monday I see rheumatologist to find out what is next.  I

hurt pretty bad and I am gettng joint damage, but have not missed work at all in

last year due to RA. I guess I just deal with it.

Dale Ellen

[Guest guest]

Welcome,

 

You will come to dread those words " oh, I have that too! " .  Now, I don't tell

people unless I know them really well what is wrong with me.  It is not worth

the argument that they don't have the same thing.  Regular osteoarthritis is not

the same thing at all, everyone has that to some extent, RA is way more

serious. 

 

Eventually, your doctor will find the right cocktail of meds.  Hang in there.  I

pray you get a fantastic rheumatologist. 

 

Hugs from Maine,

 

Tracie

[Guest guest]

Thanks for your good wishes.  I stopped MTX because it made me nauseated from

about 6 hours to 24 hours after taking it and it wiped me out.  I have a very

demanding job and I just couldn't maintain, plus at the time my job was 40

hrs/week plus I was in an acelerated master's program.  It just interfered with

life. I was taking 10 pills over a day, 3000mg of folic acid and still no go. 

Doctor did not want to treat any side effects, I think he thought is was in my

head.  So I just decided to stop it myself.  About three months later I had to

go back and Enbrel which worked for only 4 months, then Humira which worked for

a couple of years, then I added MTX injections, which still made me queasy and

just sapped my stength.  I moved and have a new Rheumatologist, he is

strict. however we tried Orencia and Immuran for three months.  Just didn't

work.  Now I have been off of everything again so tomorrow I should get a new

medication regimen to try

out.  I am a bit frustrated, I had started working out at a club to reduce

weight and build strength, but that has been derailed.  It took me almost a week

to recover from my first " workout " joint wise.  But, like everyone else, I just

have to find my " cocktail " of meds and I try to make RA an inconvenience rather

than in charge of my life.  I am just to busy to let it take me over.  I may not

have total control of thd disease, but I figure I have control over how I manage

my attitude and emotions regarding the RA.

Dale Ellen

[Guest guest]

>

> Is this group right for me? My husband has acute myleoid leukemia. I took

him to the hospital today and he starts chemo tomorrow. Is this group for

family members or just patients. Thank you so much

____________________________

Hi ,

No, this is not the right support group for you. The disease that we have

(chonic myeloid leukemia) is vastly different, so you won't really identify with

us and we won't have real helpful suggestions for you. AML moves quicker and you

have to make faster decisions about treatment, etc.

You should be able to find a support group for AML (google that) and these

groups are for patients, their caregivers and family members.

My best to you and your husband,

C.

[Guest guest]

Most of us have Chronic  Myleoid leukemia your husband is in a more severe

stage,most of your questions will be answered. I had a WC of 185000 I was

Cronic your husband probably has about 400/000 Good luck

________________________________

From: marlene11355 <marlene11355@...>

Sent: Wed, January 27, 2010 3:23:16 PMll

Subject: [ ] hello

 

Is this group right for me? My husband has acute myleoid leukemia. I took him to

the hospital today and he starts chemo tomorrow. Is this group for family

members or just patients. Thank you so much

[Guest guest]

My son has ADHD and once we started him on medication, we have a new-better

version of him. His grades have taken off. He's calm & it's wonderful!!

Sent from my iPhone

On Mar 26, 2010, at 1:52 PM, " M " <aliciamillar_5@...> wrote:

Hiya - I just joined this group and just wanted to introduce myself. I am mum to

four children. I joined this group in the hope of finding some helpful advice on

the subject of ADD/ADHD. My six year old daughter has always been a bit of a

handful - always on the go. I am guilty I suppose of putting it down to her

being a boisterous little girl. Within the past few months I have noticed she is

much harder to keep amused - she skips from one activity to the next every five

minutes. On top of that she talks at least octave higher than everyone else and

becomes frustrated easy. Her school have referred her to our

communitypeadiatrician - the referral form says " ADD " . I have been on the

internet today and found lots of information on the subject, I am now trying to

find ways to " structure " her routine at home. Can anyone offer up ANY advice at

all??? I find that my daughter completely wears me out with constant demands for

my attention. She has no friends at

school - in fact they all avoid her, its heartbreaking. I find it quite

isolating... I would like to hear from any parents who have a child in a similar

position. Does anyone else find this role exhausting and frustrating?

[Guest guest]

What is her diet like? Things to avoid that can be helpful: dairy, soy, food

dye/coloring, sugar (of all kinds), preservatives, additives.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of

M

Sent: Friday, March 26, 2010 11:52 AM

Subject: Hello

Hiya - I just joined this group and just wanted to introduce myself. I am

mum to four children. I joined this group in the hope of finding some

helpful advice on the subject of ADD/ADHD. My six year old daughter has

always been a bit of a handful - always on the go. I am guilty I suppose of

putting it down to her being a boisterous little girl. Within the past few

months I have noticed she is much harder to keep amused - she skips from one

activity to the next every five minutes. On top of that she talks at least

octave higher than everyone else and becomes frustrated easy. Her school

have referred her to our communitypeadiatrician - the referral form says

" ADD " . I have been on the internet today and found lots of information on

the subject, I am now trying to find ways to " structure " her routine at

home. Can anyone offer up ANY advice at all??? I find that my daughter

completely wears me out with constant demands for my attention. She has no

friends at school - in fact they all avoid her, its heartbreaking. I find it

quite isolating... I would like to hear from any parents who have a child in

a similar position. Does anyone else find this role exhausting and

frustrating?

[Guest guest]

What did you start him on? What blood tests/data led the doctor to put him on

these particular drugs?

From: [mailto: ] On Behalf Of

Sent: March-27-10 2:27 PM

Subject: Re: Hello

My son has ADHD and once we started him on medication, we have a new-better

version of him. His grades have taken off. He's calm & it's wonderful!!

Sent from my iPhone

On Mar 26, 2010, at 1:52 PM, " M " <aliciamillar_5@...

<mailto:aliciamillar_5%40hotmail.com> > wrote:

Hiya - I just joined this group and just wanted to introduce myself. I am mum to

four children. I joined this group in the hope of finding some helpful advice on

the subject of ADD/ADHD. My six year old daughter has always been a bit of a

handful - always on the go. I am guilty I suppose of putting it down to her

being a boisterous little girl. Within the past few months I have noticed she is

much harder to keep amused - she skips from one activity to the next every five

minutes. On top of that she talks at least octave higher than everyone else and

becomes frustrated easy. Her school have referred her to our

communitypeadiatrician - the referral form says " ADD " . I have been on the

internet today and found lots of information on the subject, I am now trying to

find ways to " structure " her routine at home. Can anyone offer up ANY advice at

all??? I find that my daughter completely wears me out with constant demands for

my attention. She has no friends at

school - in fact they all avoid her, its heartbreaking. I find it quite

isolating... I would like to hear from any parents who have a child in a similar

position. Does anyone else find this role exhausting and frustrating?

[Guest guest]

Well, we had a psychological evaluation done to determine he had ADHD, then his

ped. put him on the lowest dosage of Vyvanse.  We've moved up a couple notches

& it's been the perfect fit.  She chose it because of the least side effects.

Hiya - I just joined this group and just wanted to introduce myself. I am mum to

four children. I joined this group in the hope of finding some helpful advice on

the subject of ADD/ADHD. My six year old daughter has always been a bit of a

handful - always on the go. I am guilty I suppose of putting it down to her

being a boisterous little girl. Within the past few months I have noticed she is

much harder to keep amused - she skips from one activity to the next every five

minutes. On top of that she talks at least octave higher than everyone else and

becomes frustrated easy. Her school have referred her to our communitypeadiatric

ian - the referral form says " ADD " . I have been on the internet today and found

lots of information on the subject, I am now trying to find ways to " structure "

her routine at home. Can anyone offer up ANY advice at all??? I find that my

daughter completely wears me out with constant demands for my attention. She has

no friends at

school - in fact they all avoid her, its heartbreaking. I find it quite

isolating... I would like to hear from any parents who have a child in a similar

position. Does anyone else find this role exhausting and frustrating?

[Guest guest]

,

I have ADHD - I'm adult but have had it all my life. I take Vyvanse. It IS a

stimulant and not without side effects, however. If you have any history of

heart problems in your family, or even if you just want to be really sure all

will be okay, you can have a cardiologist make sure there's no unknown cardiac

issues before starting a stimulant.

My son has high functioning autism. He takes tenex for the ADHD symptoms. It's

not a stimulant. It was originally a blood pressure med but it was realized to

help anxiety and attention issues. My son is NOT one of those constant

on-the-go types, and he has an irregular heart beat, so it was the right choice

for us.

He DOES tend to talk loud, although as he gets older it has been getting a

little bit better. Kids with ADHD often have difficulty with social skills - so

if there are any social skills classes in your area it may help. There are also

many books written for young kids about social skills.

Drs. Hallowell and Ratey have written many books about ADD/ADHD - I would google

them.

Hope this all helps,

Bridget

Hiya - I just joined this group and just wanted to introduce myself. I am mum to

four children. I joined this group in the hope of finding some helpful advice on

the subject of ADD/ADHD. My six year old daughter has always been a bit of a

handful - always on the go. I am guilty I suppose of putting it down to her

being a boisterous little girl. Within the past few months I have noticed she is

much harder to keep amused - she skips from one activity to the next every five

minutes. On top of that she talks at least octave higher than everyone else and

becomes frustrated easy. Her school have referred her to our communitypeadiatric

ian - the referral form says " ADD " . I have been on the internet today and found

lots of information on the subject, I am now trying to find ways to " structure "

her routine at home. Can anyone offer up ANY advice at all??? I find that my

daughter completely wears me out with constant demands for my attention. She has

no friends at

school - in fact they all avoid her, its heartbreaking. I find it quite

isolating... I would like to hear from any parents who have a child in a similar

position. Does anyone else find this role exhausting and frustrating?

[Guest guest]

If you want to try a non-medication route as well , go to www.playattention, it

is a training program for attention.  There have been many positive comments

about it that I have heard.

________________________________

From: M <aliciamillar_5@...>

Sent: Fri, March 26, 2010 1:52:09 PM

Subject: Hello

 

Hiya - I just joined this group and just wanted to introduce myself. I am mum to

four children. I joined this group in the hope of finding some helpful advice on

the subject of ADD/ADHD. My six year old daughter has always been a bit of a

handful - always on the go. I am guilty I suppose of putting it down to her

being a boisterous little girl. Within the past few months I have noticed she is

much harder to keep amused - she skips from one activity to the next every five

minutes. On top of that she talks at least octave higher than everyone else and

becomes frustrated easy. Her school have referred her to our communitypeadiatric

ian - the referral form says " ADD " . I have been on the internet today and found

lots of information on the subject, I am now trying to find ways to " structure "

her routine at home. Can anyone offer up ANY advice at all??? I find that my

daughter completely wears me out with constant demands for my attention. She has

no friends at

school - in fact they all avoid her, its heartbreaking. I find it quite

isolating... I would like to hear from any parents who have a child in a similar

position. Does anyone else find this role exhausting and frustrating?

[Guest guest]

http://sites.google.com/site/xafd7gsu/vuip6m If it exists, you'll find it on SEEK Want to be a Space Travel Agent?