RE: Hi Eva

[Guest guest]

Hi ,I am 52 and I just found this out from a routine yearly physical on

Feb 21. I had my BMB on the 27 of Febuary and I have not heard anything simce. I

have called the heamotologists (spelling?) office three times and have been told

rudely that my results are not in yet. He said he knows it is CML but he needs

confirmation before he can refer me to a specialist. I had a major meltdown

yesterday but thanks to this group I found today , I am feeling a little

better.I work full time as well and as yet I have no symptoms except a little

tired and tenderness in my abdomen. I also think my head is now full of water

because I never would have dreamed I could cry this much.Thanks for your input,

it has helped a lot. Thankyou Eva.

@...: rodorbal@...: Mon, 10 Mar 2008

11:57:34 +1100Subject: RE: [ ] Hi

Hi Eva - that was me last August after being told on my 50th birthday I hadCML.

It seems like a long time ago now and is a crazy period, but there is alight at

the end of the tunnel and this group has been absolutely fantasticsupporting me

along the way. I had some time off work due to side effectsfrom Glivec and

struggled to work full time, but I did and am having no realproblems now except

for my lovely puffy eyes. I certainly don't have theenergy levels pre CML, but

that is still improving too.It takes your head awhile to get round everything!

When I had my BMB midAugust, I went back to my haem/t 2 weeks later and got

prescribed Glivec,then had to wait for 4 weeks for my wonder drug to come as had

to getspecial permission to use it. It all takes a little while. Did

yourspecialist set another date for you to see him/her?Regards, in

AustraliaDx 25/07/07Glivec 400mg since 29/09/072.6 log reduction Jan 08#1149 in

Zavie's Zero Club_____ From: [mailto: ]

On Behalf Ofevaob365Sent: Monday, 10 March 2008 1:49 AMTo:

@...: [ ] HiJust diagnosed!! Dont understand anything

....but scared out of my mind . Had biopsy and now no word from anyone about

anything for 2 weeks. The waiting and not understanding what is going on is

driving my family and I crazy. Hope to hear something soon.[Non-text portions of

this message have been removed]

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[Guest guest]

Hi Eva,

That is an awful experience and wouldn't make you feel like you can trust

them in future. As we have few renowned specialists in Australia, my

referral was direct to a local haematologist (1 hour away) and he has been

managing my CML since. He only has 14 CML patients, but has been a great

main stay helping me along and even ringing back at 8pm of a night when I

needed to talk to him. His receptionist is a bit of a dragon, but she has a

heart of gold once you get behind the gruff exterior LOL.

My haem/t said the same about my BMB - it was just to confirm the dx as such

to get the authorization for Glivec. Perhaps you need to say you want to

talk directly to him, especially if he is going to refer you onto another

specialist? Have you got another visit to him scheduled already?

When I was diagnosed, it was picked up from a routine blood test that showed

an abnormality and then when repeated 6 weeks later showed the changes as

they were happening, which is a common way for most people with CML to be

picked up. I never had any symptoms except aches in my joints which I had

put down to problems from a back injury and occasionally feeling tired when

I shouldn't have. Within 2 weeks of commencing Glivec I woke up one morning

and all my aches had disappeared!

The first few weeks are really bad in the not knowing and grief and thinking

about dying, but hang in there and cry as much as you want as it is good to

do that. When my GP initially dx the CML, he told me I was more likely to

die from something else than CML and I can actually believe him now! And I

love my haem/t when I go to him and he says I am " YOUNG " LOL! Not just a

middle aged, grandmother who has got lots of years ahead to enjoy life,

travel and grand children. I also breed and show Labradors so I lead a very

busy life and CML is not going to stop me!

As that lovely poem from Margaret says (thanks for sharing) - we

have the opportunity to do things or make things happen, which other

cancer/major chronic illnesses can't. I could have died from a heart attack

or had a stroke (possibly could still happen), BUT, at least we know with a

dx such as this that we can have a life still and we can live a productive

life with this disease. In the past 3 months I had a friend die from

lymphoma and my brother in law has just been dx with multiple myeloma, I am

so glad I have CML!

In my first months I kept a diary (which I was hopeless at doing), but it

helps to write it all down and then reflect back later on and hopefully

marvel at those dark days that have turned to bright days.

Regards,

Dx 25/07/07

Glivec 400mg since 29/09/07

2.6 log reduction Jan 08

#1149 in Zavie's Zero Club

_____

From: [mailto: ] On Behalf Of eva

brown

Sent: Monday, 10 March 2008 12:10 PM

Subject: RE: [ ] Hi Eva

Hi ,I am 52 and I just found this out from a routine yearly physical

on Feb 21. I had my BMB on the 27 of Febuary and I have not heard anything

simce. I have called the heamotologists (spelling?) office three times and

have been told rudely that my results are not in yet. He said he knows it is

CML but he needs confirmation before he can refer me to a specialist. I had

a major meltdown yesterday but thanks to this group I found today , I am

feeling a little better.I work full time as well and as yet I have no

symptoms except a little tired and tenderness in my abdomen. I also think my

head is now full of water because I never would have dreamed I could cry

this much.Thanks for your input, it has helped a lot. Thankyou Eva.

[Guest guest]

Hi did you have a White blood count number .Mine was 184000 should be 7 to

10,ooo You are on 400 gleevec standard start off dose.This is a chronic disease

not fatal plenty of C M L people will be helpful.

67 Gleevec 600

dx 12/23/05

from Tenn. USA

----- Original

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[Guest guest]

Thanks , You lovely people will never know how much in one day you have

helped me .I honestly believe that I will see my 5 grandchildren grow up. Eva

@...: rodorbal@...: Mon, 10 Mar 2008

13:44:00 +1100Subject: RE: [ ] Hi Eva

Hi Eva,That is an awful experience and wouldn't make you feel like you can

trustthem in future. As we have few renowned specialists in Australia,

myreferral was direct to a local haematologist (1 hour away) and he has

beenmanaging my CML since. He only has 14 CML patients, but has been a greatmain

stay helping me along and even ringing back at 8pm of a night when Ineeded to

talk to him. His receptionist is a bit of a dragon, but she has aheart of gold

once you get behind the gruff exterior LOL.My haem/t said the same about my BMB

- it was just to confirm the dx as suchto get the authorization for Glivec.

Perhaps you need to say you want totalk directly to him, especially if he is

going to refer you onto anotherspecialist? Have you got another visit to him

scheduled already?When I was diagnosed, it was picked up from a routine blood

test that showedan abnormality and then when repeated 6 weeks later showed the

changes asthey were happening, which is a common way for most people with CML to

bepicked up. I never had any symptoms except aches in my joints which I hadput

down to problems from a back injury and occasionally feeling tired whenI

shouldn't have. Within 2 weeks of commencing Glivec I woke up one morningand all

my aches had disappeared! The first few weeks are really bad in the not knowing

and grief and thinkingabout dying, but hang in there and cry as much as you want

as it is good todo that. When my GP initially dx the CML, he told me I was more

likely todie from something else than CML and I can actually believe him now!

And Ilove my haem/t when I go to him and he says I am " YOUNG " LOL! Not just

amiddle aged, grandmother who has got lots of years ahead to enjoy life,travel

and grand children. I also breed and show Labradors so I lead a verybusy life

and CML is not going to stop me!As that lovely poem from Margaret says

(thanks for sharing) - wehave the opportunity to do things or make things

happen, which othercancer/major chronic illnesses can't. I could have died from

a heart attackor had a stroke (possibly could still happen), BUT, at least we

know with adx such as this that we can have a life still and we can live a

productivelife with this disease. In the past 3 months I had a friend die

fromlymphoma and my brother in law has just been dx with multiple myeloma, I

amso glad I have CML!In my first months I kept a diary (which I was hopeless at

doing), but ithelps to write it all down and then reflect back later on and

hopefullymarvel at those dark days that have turned to bright

days.Regards,Dx 25/07/07Glivec 400mg since 29/09/072.6 log reduction Jan

08#1149 in Zavie's Zero Club_____ From:

[mailto: ] On Behalf Of evabrownSent: Monday, 10 March 2008

12:10 PM@...: RE: [ ] Hi EvaHi ,I am 52 and

I just found this out from a routine yearly physicalon Feb 21. I had my BMB on

the 27 of Febuary and I have not heard anythingsimce. I have called the

heamotologists (spelling?) office three times andhave been told rudely that my

results are not in yet. He said he knows it isCML but he needs confirmation

before he can refer me to a specialist. I hada major meltdown yesterday but

thanks to this group I found today , I amfeeling a little better.I work full

time as well and as yet I have nosymptoms except a little tired and tenderness

in my abdomen. I also think myhead is now full of water because I never would

have dreamed I could crythis much.Thanks for your input, it has helped a lot.

Thankyou Eva.

[Guest guest]

I cant remember what my wbc count was , I know it has a 58 in it and he said it

was extremely high. In shock I guess. I am going to take a pad and pen with me

next time . Hopefully this week. Thanks Eva

@...: paulorkay@...: Sun, 9 Mar 2008 20:03:56

-0700Subject: Re: [ ] Hi Eva

Hi did you have a White blood count number .Mine was 184000 should be 7 to

10,ooo You are on 400 gleevec standard start off dose.This is a chronic disease

not fatal plenty of C M L people will be helpful. 67 Gleevec 600dx

12/23/05 from Tenn. USA----- Original

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[Guest guest]

Hi Eva, you don;t have to take a pen with you, I'm sure your doctor will be glad

to give you a copy of your labs. I have a collection of labs - 13 years of them

!!! And you can also ask him for a copy of your bone marrow biopsy, most

doctors are willing to give them to you, and they are good to have for

comparisons. Bobby

eva brown <evaob365@...> wrote:

I cant remember what my wbc count was , I know it has a 58 in it and he said it

was extremely high. In shock I guess. I am going to take a pad and pen with me

next time . Hopefully this week. Thanks Eva

@...: paulorkay@...: Sun, 9 Mar 2008 20:03:56

-0700Subject: Re: [ ] Hi Eva

Hi did you have a White blood count number .Mine was 184000 should be 7 to

10,ooo You are on 400 gleevec standard start off dose.This is a chronic disease

not fatal plenty of C M L people will be helpful. 67 Gleevec 600dx

12/23/05 from Tenn. USA----- Original

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[Guest guest]

You may need to take money though. My onc charges $1.00 per page to photocopy my

labs. I'm wondering if I can take a digital pic of them next time and I'll

reproduce at home! Geez!

----- Re: [ ] Hi Eva

>

>Hi did you have a White blood count number .Mine was 184000 should be 7 to

10,ooo You are on 400 gleevec standard start off dose.This is a chronic disease

not fatal plenty of C M L people will be helpful. 67 Gleevec 600dx

12/23/05 from Tenn. USA----- Original

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>At a loss for words? Find them by playing Seekadoo! Play now!

>http://g.msn.ca/ca55/208

>

>

[Guest guest]

Wow! I never heard of such a thing, are these not our medical records and don't

we have the right to them? I have always had a copy, usually the bio results

are emailed, but no one has ever said I could not have them, or that I had to

pay for them. Does this have anything to do with different health care systems?

I should think not, but I don't know everything.....bobby

Tammy Ferns <tammy@...> wrote:

You may need to take money though. My onc charges $1.00 per page to

photocopy my labs. I'm wondering if I can take a digital pic of them next time

and I'll reproduce at home! Geez!

----- Re: [ ] Hi Eva

>

>Hi did you have a White blood count number .Mine was 184000 should be 7 to

10,ooo You are on 400 gleevec standard start off dose.This is a chronic disease

not fatal plenty of C M L people will be helpful. 67 Gleevec 600dx

12/23/05 from Tenn. USA----- Original

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minute shopping deals? Find them fast with Search.

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>

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>At a loss for words? Find them by playing Seekadoo! Play now!

>http://g.msn.ca/ca55/208

>

>