Everyone take a deep breath and relax

[Guest guest]

Terry,

I think the words you used, specifically " judgemental " and " vicious " are a bit

harsh.

Some could consider 's original post to be judgemental, especially those

who feel that they would rather take a new drug with a better quality of life

than live a limited existence on Gleevec. Who's judging who here?

With a thousand members in our group, you have to expect that people will have

different opinions. If someone expresses their opinion in a respectful way, I

wouldn't consider them to be vicious or judgemental just because you happen to

to disagree with their thoughts.

You should also know that Gleevec was once considered a " back up " drug to

Interferon. In the early days, no one could access Gleevec unless they had

failed Interferon but we see now that those people suffered miserably for

nothing while they waited for Gleevec to be approved as front line treatment.

It is very possible that one of the newer drugs will one day replace Gleevec as

the front line treatment, this is what current trials are trying to investigate

so I think it's a bit short sighted to refer to the newer drugs as " back ups " .

Tracey

[Guest guest]

I think Skip, Bobby and Tracey are giving a good picture of what I

think should be the strategy with the different drugs. First, as a dr

pointed out in a conference, we have now an embarrassing number of

treatment options fot CML, what was far from being the case just 10

years ago. Between the 3 approved drugs (gleevec, sprycel and tasigna)

and the ones in various stages of clinical trials there are probably

over a dozen drugs to choose from. The concept of backup is a tricky

one. Why a drug works and another one don't, or why they have

different side effects on different people is not very well understood

and there is no law saying gleevec can't be a backup for somebody who

started on sprycel. Gleevec is the front line treatment mostly because

it was the first of the 3 drugs and it has a better safety record

(less serious side effects in average) and it has been around for

about 10 years so drs feel more confident about long term adverse

effects (morbidity). For the ones that get into remission the

monitoring of the residual disease is about long trends and I think

something drs want to avoid is people trying one drugs and then

another for no serious reason as it makes the monitoring impossible.

Then some drs are more concerned about they patient quality of life

than others and some are not very good at giving us a say in what is

our life and our choices. My take has always been the dr is there to

give me enough information to make educated choices, but at the end

the decision is mine. I was dxed in 2005 and I am still on 400mg/day

of gleevec, doing good.

Marcos.

On Sun, Apr 26, 2009 at 10:21 AM, Tracey <traceyincanada@...> wrote:

>

>

> Terry,

>

> I think the words you used, specifically " judgemental " and " vicious " are a

> bit harsh.

>

> Some could consider 's original post to be judgemental, especially

> those who feel that they would rather take a new drug with a better quality

> of life than live a limited existence on Gleevec. Who's judging who here?

>

> With a thousand members in our group, you have to expect that people will

> have different opinions. If someone expresses their opinion in a respectful

> way, I wouldn't consider them to be vicious or judgemental just because you

> happen to to disagree with their thoughts.

>

> You should also know that Gleevec was once considered a " back up " drug to

> Interferon. In the early days, no one could access Gleevec unless they had

> failed Interferon but we see now that those people suffered miserably for

> nothing while they waited for Gleevec to be approved as front line

> treatment. It is very possible that one of the newer drugs will one day

> replace Gleevec as the front line treatment, this is what current trials are

> trying to investigate so I think it's a bit short sighted to refer to the

> newer drugs as " back ups " .

>

> Tracey

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/