Re: Re: LLS Statement

[Guest guest]

I'm glad you posted this as I was thinking I needed to do this.

I've been to many meetings with LLS where they are explaining their

mission and part of that is explaining their accomplishments. (People

don't want to bother to donate if there aren't any accomplishments.)

Gleevec is always touted as a large success story and it should be.

There have been many advances over the past 50 or so years in blood

cancer research but none has been so dramatic or has made such a huge

impact on the nature of a disease as has Gleevec. This isn't really

limited to blood cancer research--it's pretty much the most dramatic

story in cancer research. It's told as a way to get further funding

and to raise enthusiasm for giving--but this doesn't mean CML research

is over. LLS is still funding CML research when a researcher makes a

good case that he/she might be on to something.

We've actually been lucky that we had Dr. Druker fighting for us and

that CML got the funding it has. The patient population isn't huge--

so it could have been different. There are other blood cancers that

haven't been so fortunate. Multiple Myeloma research for example has

not been getting nearly the attention that CML has gotten (there is a

move now to try to change that). So I don't think we need to worry

that LLS is going to stop doing research on CML--they are continuing

to fund CML research.

Dorothy E.

On Oct 19, 2010, at 1:24 PM, hey00nanc wrote:

>

> > Some questions for you:

> > Do you agree that CML is now " essentially cured? "

> > Do you think an organization that views a disease as " essentially

> cured " will contribute funds toward research in that disease?

> > Other thoughts?

> >

> > Pat in Phoenix

> _____________________________

>

> Hi Pat,

> I see NO problem with this statement, because it is written for the

> general public, not for medical people or informed patients. The

> drugs that we have, thanks to the LLS, are 'essentially' a

> functional cure....for most patients. IF you were diagnosed before

> Gleevec, you 'essentially' had a death threat hanging over your

> head...this disease was considered fatal....now it is considered a

> treatable chronic disease for most patients (diagnosed in the early

> stage).

>

> I think that LLS is giving grants to any researcher that has a

> worthwhile proposal, including those working on CML, including Dr.

> Druker. When a cure is found for CML, I think that LLS money will

> have played a part is that also.....and that they will deserve to

> stand on a mountain top and yell.......we helped cure CML!!

>

> The LLS statement did not say 'cured' period.....I think this

> statement was a way to show that progress against leukemia is being

> made and that these funds are making a difference.

>

> C.

>

>

>

[Guest guest]

Maybe I'm misinformed or just sensitive, but I think that for a lot of us,

we still have a death threat hanging over our heads. For those of us at the

younger end of the age spectrum, it seems that the current prognosis is that

if we don't eventually become resistant to the drugs, we will probably

eventually die from the drugs. I just can't imagine that taking chemo every

day, with all the accompanying side effects, isn't permanently damaging us.

I'm grateful that we have the drugs, I probably would have died a year ago

without them, but I think calling it " essentially cured " is a stretch by any

measurement.

I went to the Light the Night walk last Saturday, and in the memorials was a

woman who died of CML this year.

[ ] Re: LLS Statement

> Some questions for you:

> Do you agree that CML is now " essentially cured? "

> Do you think an organization that views a disease as " essentially cured "

will contribute funds toward research in that disease?

> Other thoughts?

>

> Pat in Phoenix

_____________________________

Hi Pat,

I see NO problem with this statement, because it is written for the general

public, not for medical people or informed patients. The drugs that we have,

thanks to the LLS, are 'essentially' a functional cure....for most patients.

IF you were diagnosed before Gleevec, you 'essentially' had a death threat

hanging over your head...this disease was considered fatal....now it is

considered a treatable chronic disease for most patients (diagnosed in the

early stage).

I think that LLS is giving grants to any researcher that has a worthwhile

proposal, including those working on CML, including Dr. Druker. When a cure

is found for CML, I think that LLS money will have played a part is that

also.....and that they will deserve to stand on a mountain top and

yell.......we helped cure CML!!

The LLS statement did not say 'cured' period.....I think this statement was

a way to show that progress against leukemia is being made and that these

funds are making a difference.

C.

[Guest guest]

Neal I would sure like to know her story.

Really---do y ou know anymore? You do not hear of too many people dying of

CML anymore.

I agree with you about the medication probably killing us. I think it will

beofore the actual CML.

I worry about that too. I would like to live another 20 years!!!!

Sharon

_____

From: [mailto: ] On Behalf Of Neal

Sent: Tuesday, October 19, 2010 11:13 AM

Subject: RE: [ ] Re: LLS Statement

Maybe I'm misinformed or just sensitive, but I think that for a lot of us,

we still have a death threat hanging over our heads. For those of us at the

younger end of the age spectrum, it seems that the current prognosis is that

if we don't eventually become resistant to the drugs, we will probably

eventually die from the drugs. I just can't imagine that taking chemo every

day, with all the accompanying side effects, isn't permanently damaging us.

I'm grateful that we have the drugs, I probably would have died a year ago

without them, but I think calling it " essentially cured " is a stretch by any

measurement.

I went to the Light the Night walk last Saturday, and in the memorials was a

woman who died of CML this year.

[ ] Re: LLS Statement

> Some questions for you:

> Do you agree that CML is now " essentially cured? "

> Do you think an organization that views a disease as " essentially cured "

will contribute funds toward research in that disease?

> Other thoughts?

>

> Pat in Phoenix

_____________________________

Hi Pat,

I see NO problem with this statement, because it is written for the general

public, not for medical people or informed patients. The drugs that we have,

thanks to the LLS, are 'essentially' a functional cure....for most patients.

IF you were diagnosed before Gleevec, you 'essentially' had a death threat

hanging over your head...this disease was considered fatal....now it is

considered a treatable chronic disease for most patients (diagnosed in the

early stage).

I think that LLS is giving grants to any researcher that has a worthwhile

proposal, including those working on CML, including Dr. Druker. When a cure

is found for CML, I think that LLS money will have played a part is that

also.....and that they will deserve to stand on a mountain top and

yell.......we helped cure CML!!

The LLS statement did not say 'cured' period.....I think this statement was

a way to show that progress against leukemia is being made and that these

funds are making a difference.

C.

[Guest guest]

Unfortunately I don't. I wish I remembered her name.

[ ] Re: LLS Statement

> Some questions for you:

> Do you agree that CML is now " essentially cured? "

> Do you think an organization that views a disease as " essentially cured "

will contribute funds toward research in that disease?

> Other thoughts?

>

> Pat in Phoenix

_____________________________

Hi Pat,

I see NO problem with this statement, because it is written for the general

public, not for medical people or informed patients. The drugs that we have,

thanks to the LLS, are 'essentially' a functional cure....for most patients.

IF you were diagnosed before Gleevec, you 'essentially' had a death threat

hanging over your head...this disease was considered fatal....now it is

considered a treatable chronic disease for most patients (diagnosed in the

early stage).

I think that LLS is giving grants to any researcher that has a worthwhile

proposal, including those working on CML, including Dr. Druker. When a cure

is found for CML, I think that LLS money will have played a part is that

also.....and that they will deserve to stand on a mountain top and

yell.......we helped cure CML!!

The LLS statement did not say 'cured' period.....I think this statement was

a way to show that progress against leukemia is being made and that these

funds are making a difference.

C.

[Guest guest]

Hello Neal

 

I agree with you 100%. I am so grateful for Gleevec but, I am only 29 years old

and I have been taking gleevec for just about 7 years already. I know that

Gleevec is keeping the CML away but what else is it doing, and what is the long

term effect.

 

I am participating in the light the night walk this Saturday :-)

 

From: Neal <nwatson@...>

Subject: RE: [ ] Re: LLS Statement

Date: Tuesday, October 19, 2010, 11:13 AM

 

Maybe I'm misinformed or just sensitive, but I think that for a lot of us,

we still have a death threat hanging over our heads. For those of us at the

younger end of the age spectrum, it seems that the current prognosis is that

if we don't eventually become resistant to the drugs, we will probably

eventually die from the drugs. I just can't imagine that taking chemo every

day, with all the accompanying side effects, isn't permanently damaging us.

I'm grateful that we have the drugs, I probably would have died a year ago

without them, but I think calling it " essentially cured " is a stretch by any

measurement.

I went to the Light the Night walk last Saturday, and in the memorials was a

woman who died of CML this year.

[ ] Re: LLS Statement

> Some questions for you:

> Do you agree that CML is now " essentially cured? "

> Do you think an organization that views a disease as " essentially cured "

will contribute funds toward research in that disease?

> Other thoughts?

>

> Pat in Phoenix

_____________________________

Hi Pat,

I see NO problem with this statement, because it is written for the general

public, not for medical people or informed patients. The drugs that we have,

thanks to the LLS, are 'essentially' a functional cure....for most patients.

IF you were diagnosed before Gleevec, you 'essentially' had a death threat

hanging over your head...this disease was considered fatal....now it is

considered a treatable chronic disease for most patients (diagnosed in the

early stage).

I think that LLS is giving grants to any researcher that has a worthwhile

proposal, including those working on CML, including Dr. Druker. When a cure

is found for CML, I think that LLS money will have played a part is that

also.....and that they will deserve to stand on a mountain top and

yell.......we helped cure CML!!

The LLS statement did not say 'cured' period.....I think this statement was

a way to show that progress against leukemia is being made and that these

funds are making a difference.

C.

[Guest guest]

No, I do not agree with that statement, and think it is very deceiving  for the

newbies.  How excited will it make them, most of them are so ill informed about

CML to begin with.  The fact that we can now manage our disease and live

reasonably well is great, but it is not a cure.  We are a far cry from " 5 years

to live " , and Interferon, but we still have a long ways to go. Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: hey00nanc <ncogan@...>

Subject: [ ] Re: LLS Statement

Date: Tuesday, October 19, 2010, 1:24 PM

 

> Some questions for you:

> Do you agree that CML is now " essentially cured? "

> Do you think an organization that views a disease as " essentially cured " will

contribute funds toward research in that disease?

> Other thoughts?

>

> Pat in Phoenix

_____________________________

Hi Pat,

I see NO problem with this statement, because it is written for the general

public, not for medical people or informed patients. The drugs that we have,

thanks to the LLS, are 'essentially' a functional cure....for most patients. IF

you were diagnosed before Gleevec, you 'essentially' had a death threat hanging

over your head...this disease was considered fatal....now it is considered a

treatable chronic disease for most patients (diagnosed in the early stage).

I think that LLS is giving grants to any researcher that has a worthwhile

proposal, including those working on CML, including Dr. Druker. When a cure is

found for CML, I think that LLS money will have played a part is that

also.....and that they will deserve to stand on a mountain top and yell.......we

helped cure CML!!

The LLS statement did not say 'cured' period.....I think this statement was a

way to show that progress against leukemia is being made and that these funds

are making a difference.

C.