Introduction

[Guest guest]

Hi there , whereabouts in Aust are you? I'm in Melbourne and

diagnosed Sept05 at age 36. I've been on Glivec 400mg for the last 2

years and despite side effects - fatigue being the worst - my

results are looking good. I'm awaiting results from end of Aug (bone

marrow biopsy and molecular test) but molecular test in May showed I

was at 0.18% which was the best news I'd had in a long time. I

really hope you go well on treatment and very best wishes. cheers,

Stef

>

> Hi Liddy - thanks! I'm so glad to hear you responded so well to

Glivec.

> Great to have someone " close " by. Did you/do you have any side

effects?

>

>

>

> My CML was dx through a routine blood test, as I believe it often

does. I

> have been tired off and on and was wondering why and had

unexplained aches

> and pains and flu like symptoms that would come and go without

explanation

> and my haematologist believes I have had it for at least 12 months.

>

>

>

> I have a busy job also - not physical though, but has a fair

amount of

> stress with it and I am the main breadwinner. My stress relief is

showing

> and breeding my Labradors and hubbies dachshunds. They get me out

of bed

> everyday no matter what!

>

>

>

> I am so lucky that I had a 3 week holiday in beautiful NZ in March

with my

> girlfriend (never take husbands) and had a great time exploring as

much of

> North and South Islands as we could fit in.

>

>

>

> Regards,

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf

Of Liddy

>

> Sent: Sunday, 16 September 2007 12:57 PM

>

> Subject: [ ] Re: introduction

>

>

>

> Hi there ,

> 50 must be the " magic age " to be dx with this thing! I was three

> months off being 50 when I was.

> I so agree with you living in Australia and New Zealand we are

blessed

> to be able to have this drug free.

> Good luck and I hope it all goes well for you and you start to feel

> better real soon.

>

>

>

>

>

>

[Guest guest]

Hi there , whereabouts in Aust are you? I'm in Melbourne and

diagnosed Sept05 at age 36. I've been on Glivec 400mg for the last 2

years and despite side effects - fatigue being the worst - my

results are looking good. I'm awaiting results from end of Aug (bone

marrow biopsy and molecular test) but molecular test in May showed I

was at 0.18% which was the best news I'd had in a long time. I

really hope you go well on treatment and very best wishes. cheers,

Stef

>

> Hi Liddy - thanks! I'm so glad to hear you responded so well to

Glivec.

> Great to have someone " close " by. Did you/do you have any side

effects?

>

>

>

> My CML was dx through a routine blood test, as I believe it often

does. I

> have been tired off and on and was wondering why and had

unexplained aches

> and pains and flu like symptoms that would come and go without

explanation

> and my haematologist believes I have had it for at least 12 months.

>

>

>

> I have a busy job also - not physical though, but has a fair

amount of

> stress with it and I am the main breadwinner. My stress relief is

showing

> and breeding my Labradors and hubbies dachshunds. They get me out

of bed

> everyday no matter what!

>

>

>

> I am so lucky that I had a 3 week holiday in beautiful NZ in March

with my

> girlfriend (never take husbands) and had a great time exploring as

much of

> North and South Islands as we could fit in.

>

>

>

> Regards,

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf

Of Liddy

>

> Sent: Sunday, 16 September 2007 12:57 PM

>

> Subject: [ ] Re: introduction

>

>

>

> Hi there ,

> 50 must be the " magic age " to be dx with this thing! I was three

> months off being 50 when I was.

> I so agree with you living in Australia and New Zealand we are

blessed

> to be able to have this drug free.

> Good luck and I hope it all goes well for you and you start to feel

> better real soon.

>

>

>

>

>

>

[Guest guest]

Hi

So wonderful that you have been to our wonderful country, it is beautiful. I

work at a restaurant in Dunedin that gets a lot of overseas holiday-makers and I

never get tired of them telling me how wonderful our country is. In July my two

best friends and I went on the Trans Scenic train from Christchurch to Greymouth

and most of the time I stood in the freezing cold on the observation platform

transfixed by the beauty around me.

I think that is something positive that having CML has done for me, it's made me

appreciate the things in my life that once I would have taken for granted.

As for side effects of Glevac, sometimes I get a bit nauseous and I get pains in

my legs at night but that could be caused by a problem I have with my back so

I'm not too sure.

But compared to the side effects of Interferon it's nothing. Interferon made me

sick, lethargic and depressed. It effected my hands so bad I couldn't do

anything, ( and I'm really into crafts), my feet used to scrunch up in my shoes

all the time and the worst thing was it effected my memory so bad that one not I

couldn't remember how to get home. But that's all in the past since I went onto

Glevac, the wonder drug!

Like you my hematologist thinks I'd had CML for about a year and I had the same

symptoms. By the time I went to my GP he thought I was in heart failure and sent

me off for all sorts of tests and that's how they found it.

I'm glad you have a form of stress relief and I'm sure those dogs (like my cat)

don't understand why they are waiting for their breakfast so you have to get up

and go.LOL.

Take care and let me know how you're going.

Cheers

Liddy

[ ] Re: introduction

Hi there ,

50 must be the " magic age " to be dx with this thing! I was three

months off being 50 when I was.

I so agree with you living in Australia and New Zealand we are blessed

to be able to have this drug free.

Good luck and I hope it all goes well for you and you start to feel

better real soon.

[Guest guest]

Hi Stef,

I live in south west vic - @ 4 hours from Melb between Hamilton and Pt Fairy

– a lovely place and very green <smile>, we are quite water logged and my

garden is overgrown! We have 40 acres of bliss, with our nearest neighbours

a km away. My garden is @ 2 acres and have a lovely orchard and vege garden.

I’m extremely glad to hear you have done well and must be a huge relief.

When I had my BMB I squibbed out and had it under heavy sedation, don’t

think I could have layed there and had it done. I am still waiting for the

results from the BMB, but my haematologist wanted to get me started straight

away on Glivec. I’ve also had to go on HRT as was having severe hot flushes

(previously had hysterectomy and a cystic ovary out 4 years ago), which has

helped heaps. The joys of hitting 50!

Regards,

_____

From: [mailto: ] On Behalf Of

stef721

Sent: Tuesday, 18 September 2007 10:35 AM

Subject: [ ] Re: introduction

Hi there , whereabouts in Aust are you? I'm in Melbourne and

diagnosed Sept05 at age 36. I've been on Glivec 400mg for the last 2

years and despite side effects - fatigue being the worst - my

results are looking good. I'm awaiting results from end of Aug (bone

marrow biopsy and molecular test) but molecular test in May showed I

was at 0.18% which was the best news I'd had in a long time. I

really hope you go well on treatment and very best wishes. cheers,

Stef

>

> Hi Liddy - thanks! I'm so glad to hear you responded so well to

Glivec.

> Great to have someone " close " by. Did you/do you have any side

effects?

>

>

>

> My CML was dx through a routine blood test, as I believe it often

does. I

> have been tired off and on and was wondering why and had

unexplained aches

> and pains and flu like symptoms that would come and go without

explanation

> and my haematologist believes I have had it for at least 12 months.

>

>

>

> I have a busy job also - not physical though, but has a fair

amount of

> stress with it and I am the main breadwinner. My stress relief is

showing

> and breeding my Labradors and hubbies dachshunds. They get me out

of bed

> everyday no matter what!

>

>

>

> I am so lucky that I had a 3 week holiday in beautiful NZ in March

with my

> girlfriend (never take husbands) and had a great time exploring as

much of

> North and South Islands as we could fit in.

>

>

>

> Regards,

>

>

>

>

>

>

>

> _____

>

> From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf

Of Liddy

>

> Sent: Sunday, 16 September 2007 12:57 PM

> groups (DOT) <mailto:%40> com

> Subject: [ ] Re: introduction

>

>

>

> Hi there ,

> 50 must be the " magic age " to be dx with this thing! I was three

> months off being 50 when I was.

> I so agree with you living in Australia and New Zealand we are

blessed

> to be able to have this drug free.

> Good luck and I hope it all goes well for you and you start to feel

> better real soon.

>

>

>

>

>

>

[Guest guest]

Hi Liddy - yes we had a great time. We actually did the 3 train trips and I

enjoyed the Christchurch to Picton the best (loved Kaikoura), it had the

most wonderful scenery with the Alps on one side and the ocean on the other.

Unfortunately of all the places we went to, Dunedin didn't impress us much -

cold and windy, although the buildings were beautiful. We did find a

fantastic restaurant which had devine food and of course loved the Cadbury

factory. Perhaps you can venture to the widespread splendour of OZ one day.

I'm the queen of photos and took about 3,000 pics LOL.

Thanks for your kind thoughts - that would have been horrible thinking you

had heart disease! I will wait with baited breath to see how I go with

Glivec as I also have a bad back (which has been causing lots of problems

and inflammatory bowel disease, so hope Glivec doesn't stir it up).

Regards,

_____

From: [mailto: ] On Behalf Of Liddy

Sent: Tuesday, 18 September 2007 1:15 PM

Subject: Re: [ ] Re: introduction

Hi

So wonderful that you have been to our wonderful country, it is beautiful. I

work at a restaurant in Dunedin that gets a lot of overseas holiday-makers

and I never get tired of them telling me how wonderful our country is. In

July my two best friends and I went on the Trans Scenic train from

Christchurch to Greymouth and most of the time I stood in the freezing cold

on the observation platform transfixed by the beauty around me.

I think that is something positive that having CML has done for me, it's

made me appreciate the things in my life that once I would have taken for

granted.

As for side effects of Glevac, sometimes I get a bit nauseous and I get

pains in my legs at night but that could be caused by a problem I have with

my back so I'm not too sure.

But compared to the side effects of Interferon it's nothing. Interferon made

me sick, lethargic and depressed. It effected my hands so bad I couldn't do

anything, ( and I'm really into crafts), my feet used to scrunch up in my

shoes all the time and the worst thing was it effected my memory so bad that

one not I couldn't remember how to get home. But that's all in the past

since I went onto Glevac, the wonder drug!

Like you my hematologist thinks I'd had CML for about a year and I had the

same symptoms. By the time I went to my GP he thought I was in heart failure

and sent me off for all sorts of tests and that's how they found it.

I'm glad you have a form of stress relief and I'm sure those dogs (like my

cat) don't understand why they are waiting for their breakfast so you have

to get up and go.LOL.

Take care and let me know how you're going.

Cheers

Liddy

..

<http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI

d=6651/stime=1190085730/nc1=4617369/nc2=4670547/nc3=4507179>

[Guest guest]

Hi ,

Can you remember the name of the restaurant in Dunedin that had " the divine

food " ? If it was Bell Pepper Blues, then we probably met. LOL.

I have been to Australia twice, the first time just to Melbourne to see

Carreras (one of the three tenors) who incidentally Has also suffered from

Leukemia, his was an Acute version. So the first time I was there was I think

'91, then I returned in 1997 when the Three Tenors performed. That time I went

to Sydney as well, but Melbourne is my favourite. I just love it and one day

will definitely be back.

So thrilled that you did the 3 train trips and yes I love Kaikoura too. My two

bestest friends come from there and we all went back there for a holiday last

year. Now for another coincidence their Dad died of Leukemia in1956, but boy oh

boy how things and treatment has changed since then. But it is another reminder

of how common this illness is and how blessed we are to have the treatments we

now have.

Take care

Liddy

Re: [ ] Re: introduction

Hi

So wonderful that you have been to our wonderful country, it is beautiful. I

work at a restaurant in Dunedin that gets a lot of overseas holiday-makers

and I never get tired of them telling me how wonderful our country is. In

July my two best friends and I went on the Trans Scenic train from

Christchurch to Greymouth and most of the time I stood in the freezing cold

on the observation platform transfixed by the beauty around me.

I think that is something positive that having CML has done for me, it's

made me appreciate the things in my life that once I would have taken for

granted.

As for side effects of Glevac, sometimes I get a bit nauseous and I get

pains in my legs at night but that could be caused by a problem I have with

my back so I'm not too sure.

But compared to the side effects of Interferon it's nothing. Interferon made

me sick, lethargic and depressed. It effected my hands so bad I couldn't do

anything, ( and I'm really into crafts), my feet used to scrunch up in my

shoes all the time and the worst thing was it effected my memory so bad that

one not I couldn't remember how to get home. But that's all in the past

since I went onto Glevac, the wonder drug!

Like you my hematologist thinks I'd had CML for about a year and I had the

same symptoms. By the time I went to my GP he thought I was in heart failure

and sent me off for all sorts of tests and that's how they found it.

I'm glad you have a form of stress relief and I'm sure those dogs (like my

cat) don't understand why they are waiting for their breakfast so you have

to get up and go.LOL.

Take care and let me know how you're going.

Cheers

Liddy

.

<http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI

d=6651/stime=1190085730/nc1=4617369/nc2=4670547/nc3=4507179>

[Guest guest]

Hi Liddy - that doesn't ring a bell - the restaurant was upstairs across

from the doll shop. If I went back tomorrow I would go back to Rotorua and

Queenstown (in winter), would love to see The Remarkables in full swing of

winter and Hamner Springs which was a delight. We just have cold wet windy

winters.

Shame when you think about the Three Tenors with Pavarotti having just died.

When I was a young teenager we had good friends of the family whose youngest

son had acute leukaemia and at the time he was the longest survivor and got

his wish to go to school - was very sad. Amazing when you think of the

treatment and cures. I consider myself fortunate to have CML when I look

around at friends who have non- hodgkins, breast cancer (a few have died)

and a friend who has malignant lymphoma which has just gone to his

brain..... and my mother ultimately died from lung cancer from smoking. I

have NEVER smoked and never will.

Worst part for me is that I was a nurse and worked as district/community

nurse for 10 years so did a lot of palliative care nursing. It's hard not to

think the worse when not feeling well and a bit like you, was thinking I

must have something wrong with my heart as I could do something one day and

next day totally flat.

Anyway - I am an optimistic person and will not let this get me down!

Regards,

_____

From: [mailto: ] On Behalf Of Liddy

Sent: Wednesday, 19 September 2007 2:48 PM

Subject: Re: [ ] Re: introduction

Hi ,

Can you remember the name of the restaurant in Dunedin that had " the divine

food " ? If it was Bell Pepper Blues, then we probably met. LOL.

I have been to Australia twice, the first time just to Melbourne to see

Carreras (one of the three tenors) who incidentally Has also suffered from

Leukemia, his was an Acute version. So the first time I was there was I

think '91, then I returned in 1997 when the Three Tenors performed. That

time I went to Sydney as well, but Melbourne is my favourite. I just love it

and one day will definitely be back.

So thrilled that you did the 3 train trips and yes I love Kaikoura too. My

two bestest friends come from there and we all went back there for a holiday

last year. Now for another coincidence their Dad died of Leukemia in1956,

but boy oh boy how things and treatment has changed since then. But it is

another reminder of how common this illness is and how blessed we are to

have the treatments we now have.

Take care

Liddy

[Guest guest]

>

> Hi ,

> Can you remember the name of the restaurant in Dunedin that

had " the divine food " ? If it was Bell Pepper Blues, then we probably

met. LOL.

> I have been to Australia twice, the first time just to Melbourne

to see Carreras (one of the three tenors) who incidentally Has

also suffered from Leukemia, his was an Acute version. So the first

time I was there was I think '91, then I returned in 1997 when the

Three Tenors performed. That time I went to Sydney as well, but

Melbourne is my favourite. I just love it and one day will

definitely be back.

> So thrilled that you did the 3 train trips and yes I love Kaikoura

too. My two bestest friends come from there and we all went back

there for a holiday last year. Now for another coincidence their Dad

died of Leukemia in1956, but boy oh boy how things and treatment has

changed since then. But it is another reminder of how common this

illness is and how blessed we are to have the treatments we now have.

> Take care

> Liddy

>

> Re: [ ] Re: introduction

>

> Hi

> So wonderful that you have been to our wonderful country, it is

beautiful. I

> work at a restaurant in Dunedin that gets a lot of overseas

holiday-makers

> and I never get tired of them telling me how wonderful our

country is. In

> July my two best friends and I went on the Trans Scenic train

from

> Christchurch to Greymouth and most of the time I stood in the

freezing cold

> on the observation platform transfixed by the beauty around me.

> I think that is something positive that having CML has done for

me, it's

> made me appreciate the things in my life that once I would have

taken for

> granted.

> As for side effects of Glevac, sometimes I get a bit nauseous

and I get

> pains in my legs at night but that could be caused by a problem

I have with

> my back so I'm not too sure.

> But compared to the side effects of Interferon it's nothing.

Interferon made

> me sick, lethargic and depressed. It effected my hands so bad I

couldn't do

> anything, ( and I'm really into crafts), my feet used to scrunch

up in my

> shoes all the time and the worst thing was it effected my memory

so bad that

> one not I couldn't remember how to get home. But that's all in

the past

> since I went onto Glevac, the wonder drug!

> Like you my hematologist thinks I'd had CML for about a year and

I had the

> same symptoms. By the time I went to my GP he thought I was in

heart failure

> and sent me off for all sorts of tests and that's how they found

it.

> I'm glad you have a form of stress relief and I'm sure those

dogs (like my

> cat) don't understand why they are waiting for their breakfast

so you have

> to get up and go.LOL.

> Take care and let me know how you're going.

> Cheers

> Liddy

>

> .

>

> <http://geo./serv?

s=97359714/grpId=14762801/grpspId=1705061628/msgI

> d=6651/stime=1190085730/nc1=4617369/nc2=4670547/nc3=4507179>

>

>

>

[Guest guest]

Welcome, Evie! HAWK people, you all are going to LOVE her! I surely do!

She's not only very knowledgeable, she's got a *wicked* sense of humor!<G>

Will give Guido a run for his money...<VBG>

Evie, I highly recommend you skim the message archives and the Files section

of the web site. TONS of great info there!

Sharyn

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

From: health

[mailto:health ] On Behalf Of autumn3scorpio

Hello, all!

I'm new here (as of five minutes ago!), and from the description on

the home page, I'm going to really enjoy this group. Thanks, Sharyn!

[Guest guest]

Welcome Evie! I believe you will enjoy your stay with us... Please browse the files, message archives and jump right in... Suzi List Owner health/ http://360./suziesgoats What is a weed? A plant whose virtues have

not yet been discovered. __________________________________________________

[Guest guest]

Welcome to the group Ev

Janet

From: health [mailto:health ] On Behalf Of autumn3scorpio

Sent: Thursday, October 25, 2007

7:59 AM

health

Subject:

Introduction

Hello, all!

I'm new here (as of five minutes ago!), and from the description on

the home page, I'm going to really enjoy this group. Thanks, Sharyn!

I live in New Mexico

with my dh of 34 years, 3 dogs (GSDs), 3 cats

(assorted sundry...), 2 Icelandic horses and 2 (at the moment) meat

rabbits.

I just started a thread (and apparently no little head banging on

the part of one disgruntled list member) about tetanus shots; I just

Monday narrowly escaped getting that particular variety of cootie

injected into my body. After much discussion (and a very no-

nonsense reply from my homeopathy on-line instructor), I decided to

locate my spine and USE it when dealing with the aggressive tactics

of this doctor's office. My body, my vote. !!

Glad to be here, and I hope I can contribute something of value in

the future.

Ev

[Guest guest]

Welcome Evie!

I believe you will enjoy your stay with us... Please browse the files, message archives and jump right in...

Well, thankee kindly, ma'am, and if I can get my computer to BEHAVE ITSELF (lest I resort to using the "H" word, i.e. "hammer"), I will happily browse.

Can't graze - I'm on a diet. >

Ev

[Guest guest]

Welcome to the list Evie.

Gayla Always Enough RanchAcampo, Californiahttp://bouncinghoofs.com/alwaysenough.htmlaeranch@...

Re: Introduction

Welcome Evie!

I believe you will enjoy your stay with us... Please browse the files, message archives and jump right in...

Well, thankee kindly, ma'am, and if I can get my computer to BEHAVE ITSELF (lest I resort to using the "H" word, i.e. "hammer"), I will happily browse.

Can't graze - I'm on a diet. >

Ev

[Guest guest]

Thanks, Gayla.

I hope you are far from the awful fires in Cal?

Ev

Welcome to the list Evie.

Gayla Always Enough RanchAcampo, California

[Guest guest]

Hey Ev, I'm , with an alternate persona known as Guido. You'll

get it eventually. I'm also one of the moderators.

Welcome to the most unique list, the most wonderful group of people

ever! We are truly one big family. Some we love, some we like, some

we tolerate, and some we don't much care for. Just like any family.

But we are always here for each other, and for you too now that you

have joined the list.

**And don't worry about that huge pod in your basement. It's just an

ornament. Really it is.**

HUSH Guido!!

Sorry, he gets out of his box now and again.

Anyway, paruse the files, check out the archives, start a thread,

join a conversation, ask lots of questions. However you are most

comfortable.

Peace, love, laughter

If Jimmy cracks corn and no one cares, why is there a stupid song

about him?

>

> Hello, all!

>

> I'm new here (as of five minutes ago!), and from the description on

> the home page, I'm going to really enjoy this group. Thanks,

Sharyn!

>

> I live in New Mexico with my dh of 34 years, 3 dogs (GSDs), 3 cats

> (assorted sundry...), 2 Icelandic horses and 2 (at the moment) meat

> rabbits.

> I just started a thread (and apparently no little head banging on

> the part of one disgruntled list member) about tetanus shots; I

just

> Monday narrowly escaped getting that particular variety of cootie

> injected into my body. After much discussion (and a very no-

> nonsense reply from my homeopathy on-line instructor), I decided to

> locate my spine and USE it when dealing with the aggressive tactics

> of this doctor's office. My body, my vote. !!

>

> Glad to be here, and I hope I can contribute something of value in

> the future.

>

>

> Ev

>

[Guest guest]

Hey, I'll run for money. I'll do lots of things for money! I even have

pictures.

Mwahahahaha

Guido

> Will give Guido a run for his money...<VBG>

[Guest guest]

Welcome Ev, I'll be waiting to hear more about your "herd".

When I was told I needed a tetanus shot I called my nd and he said to come on down and get JUST a tetanus shot. I had ground my middle finger to the bone in a juicer (don't ask). It was only the tip and I refused the shot at the hospital. My naturopath to me because bone was involved I needed tetanus. That's all he gave me, nothing more. Most shots in the hospitals have other immunizations in them as well as presevatives.

My finger healed, with the help of Golden Seal and honey poultices. You can't hardly tell which one was the mangled one. And they said I'd lose my fingernail, permenantly and 1/3 of my finger. Ha! That's how much the medical profession knows!

Shari

[Guest guest]

> Hey Ev, I'm , with an alternate persona known as Guido. You'll

> get it eventually. I'm also one of the moderators.

*******Ooooh. That kind of limits my smart remarks about it, doesn't it?!

>

> Welcome to the most unique list, the most wonderful group of people

> ever! We are truly one big family. Some we love, some we like, some

> we tolerate, and some we don't much care for. Just like any family.

*******<snort!> Yeah, there's always at least ONE of those, i'n't there?!

(Not ME. NEVER me...)

>

> But we are always here for each other, and for you too now that you

> have joined the list.

>

*******I am deeply grateful to Sharyn for giving me the link.

> **And don't worry about that huge pod in your basement. It's just an

> ornament. Really it is.**

>

> HUSH Guido!!

>

> Sorry, he gets out of his box now and again.

*******<be quiet, voices, or I'll poke you with a Q-Tip>....

>

> Anyway, paruse the files, check out the archives, start a thread,

> join a conversation, ask lots of questions. However you are most

> comfortable.

>

> Peace, love, laughter

>

*******Thank you very much, sir - and to everyone else who has welcomed me

most warmly! I do believe we'll all get along nicely, indeed! (Never stand

between me and the chocolate...)

>

> If Jimmy cracks corn and no one cares, why is there a stupid song

> about him?

*******Ah. Mayhap it's a thing upon which to meditate. You know, like the

sound of one hand clapping...

Either that, or they all drank the " cracked " corn, and while nobody much

cared, they just hadda sing.

Blessings, y'all!

Ev

[Guest guest]

Yes I am over 600 miles from them. But I have friends there. It is awful.

Gayla Always Enough RanchAcampo, Californiahttp://bouncinghoofs.com/alwaysenough.htmlaeranch@...

Re: Introduction

Thanks, Gayla.

I hope you are far from the awful fires in Cal?

Ev

Welcome to the list Evie.

Gayla Always Enough RanchAcampo, California

[Guest guest]

I am so sorry to hear about your friends. It's a terrible thing, and we here in New Mexico are quite familiar with the dangers of fires...

Ev

Yes I am over 600 miles from them. But I have friends there. It is awful.

Gayla

[Guest guest]

Welcome Ev to the list. You surely will enjoy it because it's a good one.

Rena

Introduction

Hello, all!I'm new here (as of five minutes ago!), and from the description on the home page, I'm going to really enjoy this group. Thanks, Sharyn!I live in New Mexico with my dh of 34 years, 3 dogs (GSDs), 3 cats (assorted sundry...), 2 Icelandic horses and 2 (at the moment) meat rabbits.I just started a thread (and apparently no little head banging on the part of one disgruntled list member) about tetanus shots; I just Monday narrowly escaped getting that particular variety of cootie injected into my body. After much discussion (and a very no-nonsense reply from my homeopathy on-line instructor), I decided to locate my spine and USE it when dealing with the aggressive tactics of this doctor's office. My body, my vote. !!Glad to be here, and I hope I can contribute something of value in the future.Ev

[Guest guest]

Hi Jill, welcome. Wow! remission in such a short time, lucky girl you! I am

78, have had CML for 13 years , dx in 1995, and did not reach CCR (complete

cytogenetic remmision)

until March of 2005, on Sprycel. Lots of information on this site, and lots

of great people, good luck to you, Bobby Doyle

talbott82@... wrote:

I just wanted to introduce myself to the group. I was diagnosed with

CML in February 2008. Unfortunately, they found it when I was going through the

presurgery testing a week before donating a kidney to my husband. I guess it was

lucky that it was found since I had no symptons, but my husband ended up having

to go on dialysis. Good ending to that story as our 20 year old adopted son

donated a kidney to his dad in June and they are doing extremely well.

Anyway, I take 400 mg of gleevec every day. My blood work now says I am in

remission. They then did another bone marrow and I went from being around 150%

positive for CML to.2% positive for CML so I am lucky. I am handling the gleevec

fairly well. I just find I am more tired and if I get overtired I feel sick.

This medicine is super expensive, but it has worked tremendously well for me and

my insurance company has not balked yet.

I am just interested in reading and learning more about CML as I really knew

nothing about it until I was told that I had it. Thanks for letting me join your

group.

Jill

[Guest guest]

Hi Nikki. Welcome to the group. My boyfriend was diagnosed about 2

months ago, and I joined this group hoping to learn more about CML. It

really is great, and people here really know their stuff.

From what I hear, as long as Gleevec is working, a BMT will not be

considered. There are so many side effects due to Graft vs Host

disease (GVHD).

Did your doctor check to see if any of your boyfriend;s siblings were

a match? I am curious, only because our doctor refused to do any blood

testing unless Gleevec fails ( I prey to God it works forever)

So your fiance is doing well? How is he handling Gleevec, what types

of side effects is he having.

My boyfriends is experiencing tremendous bone pain, major night sweats

and nausea. And of course fatigue. They all seem to be manageable so

far and I hope it stays this way.

How old was your fiance when he was diagnosed?

When you guys getting married? I would love to hear more from you.

Although you're engaged, and we are bf and gf, the situation is kind

of similar. Just would like to know how your dealing with it, and if

it gets better after a year.

There are still days where I wonder how our future will be, if we;ll

be able to have kids....I hope so!

Anyways, I hope all is going well with the two of you, and if I find

more info on BMT I'll post!

Take care girl,

Steph

>

> Good Morning my name is Nikki and I joined the group to find out more

> about CML. My fiancé was diagnosed last year and I want to be a support

> to him and assist him in finding out more about it. He has been told

> that a BMT is really the only way to 'cure' CML... I was curious about

> other thoughts on this and the experiences of anyone who has had a non-

> related BMT. He is currently on Gleevac, not sure of the doasage (I

> will ask him)and he is doing pretty good. But I am fearful of him

> having a BMT. Please help!! Thanks!

>

> NPC

>

[Guest guest]

Hi Jill,

Welcome but I am also sorry you have joined the group at the same time. Your

gonna get allot of info from this group and 98% of it is good info. Just

know this...your not alone and if you ever need to vent feel free

Terry

On Sat, Jul 5, 2008 at 6:09 PM, stephzour <stephzour@...> wrote:

> Hi Nikki. Welcome to the group. My boyfriend was diagnosed about 2

> months ago, and I joined this group hoping to learn more about CML. It

> really is great, and people here really know their stuff.

> From what I hear, as long as Gleevec is working, a BMT will not be

> considered. There are so many side effects due to Graft vs Host

> disease (GVHD).

> Did your doctor check to see if any of your boyfriend;s siblings were

> a match? I am curious, only because our doctor refused to do any blood

> testing unless Gleevec fails ( I prey to God it works forever)

>

> So your fiance is doing well? How is he handling Gleevec, what types

> of side effects is he having.

> My boyfriends is experiencing tremendous bone pain, major night sweats

> and nausea. And of course fatigue. They all seem to be manageable so

> far and I hope it stays this way.

>

> How old was your fiance when he was diagnosed?

>

> When you guys getting married? I would love to hear more from you.

> Although you're engaged, and we are bf and gf, the situation is kind

> of similar. Just would like to know how your dealing with it, and if

> it gets better after a year.

>

> There are still days where I wonder how our future will be, if we;ll

> be able to have kids....I hope so!

>

> Anyways, I hope all is going well with the two of you, and if I find

> more info on BMT I'll post!

>

> Take care girl,

>

> Steph

>

>

> >

> > Good Morning my name is Nikki and I joined the group to find out more

> > about CML. My fiancé was diagnosed last year and I want to be a support

> > to him and assist him in finding out more about it. He has been told

> > that a BMT is really the only way to 'cure' CML... I was curious about

> > other thoughts on this and the experiences of anyone who has had a non-

> > related BMT. He is currently on Gleevac, not sure of the doasage (I

> > will ask him)and he is doing pretty good. But I am fearful of him

> > having a BMT. Please help!! Thanks!

> >

> > NPC

> >

>

>

>

[Guest guest]

!!! YIPPEEE!!!

Number 1206 in the Zero Club

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

talbott82@...

Sent: July 4, 2008 4:50 PM

Subject: [ ] Introduction

I just wanted to introduce myself to the group. I was diagnosed with CML in

February 2008. Unfortunately, they found it when I was going through the

presurgery testing a week before donating a kidney to my husband. I guess it

was lucky that it was found since I had no symptons, but my husband ended up

having to go on dialysis. Good ending to that story as our 20 year old

adopted son donated a kidney to his dad in June and they are doing extremely

well.

Anyway, I take 400 mg of gleevec every day. My blood work now says I am in

remission. They then did another bone marrow and I went from being around

150% positive for CML to.2% positive for CML so I am lucky. I am handling

the gleevec fairly well. I just find I am more tired and if I get overtired

I feel sick. This medicine is super expensive, but it has worked

tremendously well for me and my insurance company has not balked yet.

I am just interested in reading and learning more about CML as I really knew

nothing about it until I was told that I had it. Thanks for letting me join

your group.

Jill