RE: New to this site and faily new to CML

[Guest guest]

You will have to speak with more experienced persons than me

regarding blast phase. I just wanted you to know that we are

here to support you and help, if we can.

Where do you get treatment, is it a first tier cancer center?

Are you being helped by a CML Specialist like Druker, Talpaz,

Giles or Shaw (or a number of others).

..

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/29/2007 11:54:02 A.M. Eastern Standard Time,

awristen1@... writes:

hello everyone I am 47 was diagnosed with CML in April this year. My

Dr told me to quit my job. I was so weak from misdiagnosis for several

months until I had no strenth was in the blast phase. placed on glevic

while in hosp then to hydroxea, when released 2 weeks later was then

placed on Sprycel, due to severe swelling and rash.

I have had most all side effects listed but do not last long thank God.

My dr does not truly give me much hope of long term. He said I may

have 2 to 3 years. I had mentioned that people are living longer with

medications. His reply not with blast phase, I live everyday enjoying

my children and grandaughter.my children and grandaughter.<WBR>. But woul

not have so much down time on my hands. Anybody have any input to

this. I would appreciate any and all advice.

Anita

************************************** See what's new at http://www.aol.com

[Guest guest]

MD is great for serious cases. They fight cancer very

aggressively. I like Dr. O'Brien there, but Dr. Giles form PA

Welch is also very knowledgeable and helpful.

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/29/2007 2:46:42 P.M. Eastern Standard Time,

awristen1@... writes:

I get treatment through md anderson. Thanks so much for all the support We

all can use it.

Thanks Anita

Re: [ ] New to this site and faily new to CML

You will have to speak with more experienced persons than me

regarding blast phase. I just wanted you to know that we are

here to support you and help, if we can.

Where do you get treatment, is it a first tier cancer center?

Are you being helped by a CML Specialist like Druker, Talpaz,

Giles or Shaw (or a number of others).

..

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/29/2007 11:54:02 A.M. Eastern Standard Time,

awristen1 (DOT) com writes:

hello everyone I am 47 was diagnosed with CML in April this year. My

Dr told me to quit my job. I was so weak from misdiagnosis for several

months until I had no strenth was in the blast phase. placed on glevic

while in hosp then to hydroxea, when released 2 weeks later was then

placed on Sprycel, due to severe swelling and rash.

I have had most all side effects listed but do not last long thank God.

My dr does not truly give me much hope of long term. He said I may

have 2 to 3 years. I had mentioned that people are living longer with

medications. His reply not with blast phase, I live everyday enjoying

my children and grandaughter. my children and grandaughter. <WBR>. But woul

not have so much down time on my hands. Anybody have any input to

this. I would appreciate any and all advice.

Anita

************ ********* ********* ******** See what's new at

_http://www.aol._ (http://www.aol./) com

[Non-text portions of this message have been removed]

__________________________________________________

Do You ?

Tired of spam? has the best spam protection around

_http://mail.http://ma_ (http://mail./)

[Non-text portions of this message have been removed]

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi Anita,

I am very sorry to hear you were dx in the blast phase.

I think you should seek advice from the leading cml specialists like Dr

Druker. New treatments and clinical trials are coming in at a pretty fast

pace and only the top drs have the knowledge and experience to advise

somebody in the blast phase. And you are young so you should have options

like transplant. Don't give up hope.

I know what you mean about wanting to do something. When I was dx the dr

wanted me to stay in bed for a few weeks. But it was too unnerving just to

lie in bed and I asked her what to watch for (mainly drink, eat and avoid

infections) and did some short traveling by car with my family, some easy

walks, watching the ocean, basking in the sun (with sunblock), etc. After a

day or so I was having a good time. Just being able to progressively resume

my normal routine felt like I was winning a battle.

I wish you the best,

Marcos.

On 10/29/07, awristen1 <awristen1@...> wrote:

>

> hello everyone I am 47 was diagnosed with CML in April this year. My

> Dr told me to quit my job. I was so weak from misdiagnosis for several

> months until I had no strenth was in the blast phase. placed on glevic

> while in hosp then to hydroxea, when released 2 weeks later was then

> placed on Sprycel, due to severe swelling and rash.

> I have had most all side effects listed but do not last long thank God.

> My dr does not truly give me much hope of long term. He said I may

> have 2 to 3 years. I had mentioned that people are living longer with

> medications. His reply not with blast phase, I live everyday enjoying

> my children and grandaughter.. But would love also to be working and

> not have so much down time on my hands. Anybody have any input to

> this. I would appreciate any and all advice.

> Anita

>

>

>

[Guest guest]

I get treatment through md anderson. Thanks so much for all the support We all

can use it.

Thanks Anita

Re: [ ] New to this site and faily new to CML

You will have to speak with more experienced persons than me

regarding blast phase. I just wanted you to know that we are

here to support you and help, if we can.

Where do you get treatment, is it a first tier cancer center?

Are you being helped by a CML Specialist like Druker, Talpaz,

Giles or Shaw (or a number of others).

..

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/29/2007 11:54:02 A.M. Eastern Standard Time,

awristen1 (DOT) com writes:

hello everyone I am 47 was diagnosed with CML in April this year. My

Dr told me to quit my job. I was so weak from misdiagnosis for several

months until I had no strenth was in the blast phase. placed on glevic

while in hosp then to hydroxea, when released 2 weeks later was then

placed on Sprycel, due to severe swelling and rash.

I have had most all side effects listed but do not last long thank God.

My dr does not truly give me much hope of long term. He said I may

have 2 to 3 years. I had mentioned that people are living longer with

medications. His reply not with blast phase, I live everyday enjoying

my children and grandaughter. my children and grandaughter. <WBR>. But woul

not have so much down time on my hands. Anybody have any input to

this. I would appreciate any and all advice.

Anita

************ ********* ********* ******** See what's new at http://www.aol. com

[Guest guest]

Hi Anita,

Welcome to the club that nobody wants to be a member of.

The best advice that I have for you in your situation is that you get to see

one of the top CML doctors. Tell us where you live and we can point to

someone close by.

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

_____

From: [mailto: ] On Behalf Of

awristen1

Sent: October 29, 2007 11:49 AM

Subject: [ ] New to this site and faily new to CML

hello everyone I am 47 was diagnosed with CML in April this year. My

Dr told me to quit my job. I was so weak from misdiagnosis for several

months until I had no strenth was in the blast phase. placed on glevic

while in hosp then to hydroxea, when released 2 weeks later was then

placed on Sprycel, due to severe swelling and rash.

I have had most all side effects listed but do not last long thank God.

My dr does not truly give me much hope of long term. He said I may

have 2 to 3 years. I had mentioned that people are living longer with

medications. His reply not with blast phase, I live everyday enjoying

my children and grandaughter.. But would love also to be working and

not have so much down time on my hands. Anybody have any input to

this. I would appreciate any and all advice.

Anita

[Guest guest]

Hi Anita,

If possible I would be looking for a new doctor, if I

were in your shoes. This is a very hopeful time even

for people in blast phase. New medicine is in

development and being tested in clinical trials. If

you feel up to it you may want to join a clinical

trial. In my opinion, you need a doctor who is

willing to fight just as hard as you are. Or like in

my case willing to do what I ask him to do.

I'm sending you lots of love and positive energy.

Chi

--- awristen1 <awristen1@...> wrote:

> hello everyone I am 47 was diagnosed with CML in

> April this year. My

> Dr told me to quit my job. I was so weak from

> misdiagnosis for several

> months until I had no strenth was in the blast

> phase. placed on glevic

> while in hosp then to hydroxea, when released 2

> weeks later was then

> placed on Sprycel, due to severe swelling and rash.

> I have had most all side effects listed but do not

> last long thank God.

> My dr does not truly give me much hope of long term.

> He said I may

> have 2 to 3 years. I had mentioned that people are

> living longer with

> medications. His reply not with blast phase, I live

> everyday enjoying

> my children and grandaughter.. But would love also

> to be working and

> not have so much down time on my hands. Anybody have

> any input to

> this. I would appreciate any and all advice.

> Anita

>

>

__________________________________________________

[Guest guest]

Thank you for the input. I would love to change dr's but do not have much

choice. I had to quit my job in April, lost insurance and so am now a ward of

the state. I go to LBJ hosp which is for charity. The dr's are training to be??

I try to educate myself through many websites and others experience. This has

been the best site yet. And I appreciate all of you so much.

May the Lord Bless us all,

Anita

Re: [ ] New to this site and faily new to CML

Hi Anita,

If possible I would be looking for a new doctor, if I

were in your shoes. This is a very hopeful time even

for people in blast phase. New medicine is in

development and being tested in clinical trials. If

you feel up to it you may want to join a clinical

trial. In my opinion, you need a doctor who is

willing to fight just as hard as you are. Or like in

my case willing to do what I ask him to do.

I'm sending you lots of love and positive energy.

Chi

--- awristen1 <awristen1 (DOT) com> wrote:

> hello everyone I am 47 was diagnosed with CML in

> April this year. My

> Dr told me to quit my job. I was so weak from

> misdiagnosis for several

> months until I had no strenth was in the blast

> phase. placed on glevic

> while in hosp then to hydroxea, when released 2

> weeks later was then

> placed on Sprycel, due to severe swelling and rash.

> I have had most all side effects listed but do not

> last long thank God.

> My dr does not truly give me much hope of long term.

> He said I may

> have 2 to 3 years. I had mentioned that people are

> living longer with

> medications. His reply not with blast phase, I live

> everyday enjoying

> my children and grandaughter. . But would love also

> to be working and

> not have so much down time on my hands. Anybody have

> any input to

> this. I would appreciate any and all advice.

> Anita

>

>

____________ _________ _________ _________ _________ __

[Guest guest]

Anita,

They say that in Chinese the symbol for crisis also

means opportunity. Perhaps your doctor should embrace

the opportunity to read up on CML and all of the

wonderful advances. He should have a talk with the

docs at UCLA or Dr. Druker- the pioneers. Please

don't think you have to accept bad medicine, bad

manners or a bad attitude because of your financial

situation. The oath is- first do no harm. He will be

a better doctor if he learns that hope moves mountains

especially when coupled with good science.

My hem/onc told me - " don't ever wait for me to call

you, take charge of your case , learn everything you

can and question me if you don't understand. " After

reading these posts and getting advice and counsel , I

decided it was time for another BMB. I called him and

explained my reasoning- it was scheduled for the 8th ,

it just got rescheduled to the 19 but my point is- he

ordered it because I asked.

If you can't change doctors- try to change the one you

have. he will be better for it. Want me to call him?

(smile)

Big hug to you my sister.

--- anita wristen <awristen1@...> wrote:

> Thank you for the input. I would love to change dr's

> but do not have much choice. I had to quit my job in

> April, lost insurance and so am now a ward of the

> state. I go to LBJ hosp which is for charity. The

> dr's are training to be?? I try to educate myself

> through many websites and others experience. This

> has been the best site yet. And I appreciate all of

> you so much.

> May the Lord Bless us all,

> Anita

>

>

> Re: [ ] New to this site and faily new

> to CML

>

> Hi Anita,

>

> If possible I would be looking for a new doctor, if

> I

> were in your shoes. This is a very hopeful time even

> for people in blast phase. New medicine is in

> development and being tested in clinical trials. If

> you feel up to it you may want to join a clinical

> trial. In my opinion, you need a doctor who is

> willing to fight just as hard as you are. Or like in

> my case willing to do what I ask him to do.

>

> I'm sending you lots of love and positive energy.

>

> Chi

>

> --- awristen1 <awristen1 (DOT) com> wrote:

>

> > hello everyone I am 47 was diagnosed with CML in

> > April this year. My

> > Dr told me to quit my job. I was so weak from

> > misdiagnosis for several

> > months until I had no strenth was in the blast

> > phase. placed on glevic

> > while in hosp then to hydroxea, when released 2

> > weeks later was then

> > placed on Sprycel, due to severe swelling and

> rash.

> > I have had most all side effects listed but do not

> > last long thank God.

> > My dr does not truly give me much hope of long

> term.

> > He said I may

> > have 2 to 3 years. I had mentioned that people are

> > living longer with

> > medications. His reply not with blast phase, I

> live

> > everyday enjoying

> > my children and grandaughter. . But would love

> also

> > to be working and

> > not have so much down time on my hands. Anybody

> have

> > any input to

> > this. I would appreciate any and all advice.

> > Anita

> >

> >

>

> ____________ _________ _________ _________ _________

> __

>