Re: trying to clear up some questions about the progression of CML?

[Guest guest]

Hi,

CML does not necessarily turn into AML at all. The progression of CML

goes from chronic phase, to accelerated phase and then to blast crisis.

Blast crisis is not the same as AML, in fact, the blast phase of CML

can actually be a lymphoid blast crisis which has nothing to do with

the myeloid cell line.

To answer your other question, yes it is possible to reverse a blast

crisis and return the patient to the chronic phase. This has been done

with several members who later went onto transplant.

And finally, with Gleevec and the other new drugs, no one knows forsure

how long we can go without disease progression, it could very possibly

be a life time so any doctor who is going to say with determination

that you will definitely progress, it's just a matter of time, is being

irresponsible as far as I'm concerned....sounds like a transplant

doctor who's trying to secure his wages.

Tracey

--- In , " monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, gang. Beth and I have a few questions that we thought we had

> answered but now were not so sure. With CML is it a given that CML

will

> eventually progress into AML but with gleevic the time frame is now

in

> question? being years to decades away now? Once CML progresses into

> AML can it be brought into check again or back to CML? I get the

> feeling that our Onc. is telling us that its quite possible that

there

> will eventually be a progression but that the time frame is

potentially

> so far off that its pointless to worry about it. Any feelings on this

> or experience?

> Thanks.

>

[Guest guest]

CML does not typically progress to AML. If a case of AML developed,

its basically a new cancer.

AML is a grouping of at least 8 different leukemias with likely sub-

types in each group. Many different types of chromosomal

abnormailities.

If CML progresses, it moves into either an Accelerated phase or Blast

Crisis phase. The latter superficially can resemble an AML.

No one knows the very long term efficacy of Gleevec since we have not

got there yet. But people in the IRIS trial, which was used to prove

the superiority of Gleevec over Interferon in new CML, have been

followed for more than 6 years. The chance of progressing to

Accelrated or Blast phase CML was essentially 0% in the 6th year. In

effect, if a person's CML is going to progress it most likely will

happen in the first few years after diagnosis.

[Guest guest]

Bravo, Tracey. I haven't had this particular experience, thank goodness.

However, I have had recent experiences with docs in other specialties who were

quite obviously just trying to line their pockets by prescribing treatments I

definitely and absolutely did not need. CML has taught me to be rigorous in my

attention to medical care and to judge it more objectively than ever before.

Doctors are people and some of them are not what you would hope for them to be.

L

[ ] Re: trying to clear up some questions about the progression

of CML?

Hi,

CML does not necessarily turn into AML at all. The progression of CML

goes from chronic phase, to accelerated phase and then to blast crisis.

Blast crisis is not the same as AML, in fact, the blast phase of CML

can actually be a lymphoid blast crisis which has nothing to do with

the myeloid cell line.

To answer your other question, yes it is possible to reverse a blast

crisis and return the patient to the chronic phase. This has been done

with several members who later went onto transplant.

And finally, with Gleevec and the other new drugs, no one knows forsure

how long we can go without disease progression, it could very possibly

be a life time so any doctor who is going to say with determination

that you will definitely progress, it's just a matter of time, is being

irresponsible as far as I'm concerned....sounds like a transplant

doctor who's trying to secure his wages.

Tracey

>

> Hi, gang. Beth and I have a few questions that we thought we had

> answered but now were not so sure. With CML is it a given that CML

will

> eventually progress into AML but with gleevic the time frame is now

in

> question? being years to decades away now? Once CML progresses into

> AML can it be brought into check again or back to CML? I get the

> feeling that our Onc. is telling us that its quite possible that

there

> will eventually be a progression but that the time frame is

potentially

> so far off that its pointless to worry about it. Any feelings on this

> or experience?

> Thanks.

>

[Guest guest]

Hi,

His statement is correct but he neglected to say that this only happens only

if there hasn't been any treatment at all for the CML. The progression of

untreated CML is blast crisis or AML and then death.

We live in a different era now.

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

3.5 log reduction Feb/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

monkeyfun_16901

Sent: March 9, 2008 8:31 AM

Subject: [ ] trying to clear up some questions about the progression of

CML?

Hi, gang. Beth and I have a few questions that we thought we had

answered but now were not so sure. With CML is it a given that CML will

eventually progress into AML but with gleevic the time frame is now in

question? being years to decades away now? Once CML progresses into

AML can it be brought into check again or back to CML? I get the

feeling that our Onc. is telling us that its quite possible that there

will eventually be a progression but that the time frame is potentially

so far off that its pointless to worry about it. Any feelings on this

or experience?

Thanks.

[Guest guest]

Good one Tracey!!!

I agree

Sharon

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Sunday, March 09, 2008 6:52 AM

Subject: [ ] Re: trying to clear up some questions about the progression

of CML?

Hi,

CML does not necessarily turn into AML at all. The progression of CML

goes from chronic phase, to accelerated phase and then to blast crisis.

Blast crisis is not the same as AML, in fact, the blast phase of CML

can actually be a lymphoid blast crisis which has nothing to do with

the myeloid cell line.

To answer your other question, yes it is possible to reverse a blast

crisis and return the patient to the chronic phase. This has been done

with several members who later went onto transplant.

And finally, with Gleevec and the other new drugs, no one knows forsure

how long we can go without disease progression, it could very possibly

be a life time so any doctor who is going to say with determination

that you will definitely progress, it's just a matter of time, is being

irresponsible as far as I'm concerned....sounds like a transplant

doctor who's trying to secure his wages.

Tracey

--- In groups (DOT) <mailto:%40> com,

" monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, gang. Beth and I have a few questions that we thought we had

> answered but now were not so sure. With CML is it a given that CML

will

> eventually progress into AML but with gleevic the time frame is now

in

> question? being years to decades away now? Once CML progresses into

> AML can it be brought into check again or back to CML? I get the

> feeling that our Onc. is telling us that its quite possible that

there

> will eventually be a progression but that the time frame is

potentially

> so far off that its pointless to worry about it. Any feelings on this

> or experience?

> Thanks.

>

[Guest guest]

-

susan you are ever so right i have had to learn to question every

decision drs. make as i find that as-- Ii find that a lot of them are

new to cml and our particular problems.

aliza :

>

> Bravo, Tracey. I haven't had this particular experience, thank

goodness. However, I have had recent experiences with docs in other

specialties who were quite obviously just trying to line their

pockets by prescribing treatments I definitely and absolutely did not

need. CML has taught me to be rigorous in my attention to medical

care and to judge it more objectively than ever before. Doctors are

people and some of them are not what you would hope for them to be.

>

> L

> [ ] Re: trying to clear up some questions about the

progression of CML?

>

>

> Hi,

>

> CML does not necessarily turn into AML at all. The progression of

CML

> goes from chronic phase, to accelerated phase and then to blast

crisis.

> Blast crisis is not the same as AML, in fact, the blast phase of

CML

> can actually be a lymphoid blast crisis which has nothing to do

with

> the myeloid cell line.

>

> To answer your other question, yes it is possible to reverse a

blast

> crisis and return the patient to the chronic phase. This has been

done

> with several members who later went onto transplant.

>

> And finally, with Gleevec and the other new drugs, no one knows

forsure

> how long we can go without disease progression, it could very

possibly

> be a life time so any doctor who is going to say with

determination

> that you will definitely progress, it's just a matter of time, is

being

> irresponsible as far as I'm concerned....sounds like a transplant

> doctor who's trying to secure his wages.

>

> Tracey

>

>

> >

> > Hi, gang. Beth and I have a few questions that we thought we

had

> > answered but now were not so sure. With CML is it a given that

CML

> will

> > eventually progress into AML but with gleevic the time frame is

now

> in

> > question? being years to decades away now? Once CML progresses

into

> > AML can it be brought into check again or back to CML? I get

the

> > feeling that our Onc. is telling us that its quite possible

that

> there

> > will eventually be a progression but that the time frame is

> potentially

> > so far off that its pointless to worry about it. Any feelings

on this

> > or experience?

> > Thanks.

> >

>

>

>

>

>

>

[Guest guest]

You hit the nail on the head Tracey!

Of someone is in chronic phase there is just absolutely no way a Dr should

be telling someone this.

Obviously uneducated and or like you said: trying to secure his income.

ez

Dx 5-2000

PCRU