Re: Gleevec/Heart Troubles follow up on NPR radio

[Guest guest]

Thanks for digging this up for us Zavie, it was most interesting to

listen to.

Dr. Druker confirmed in this interview what I had suspected and that

is that some people are panicking after hearing this news. One girl

emailed him asking him if she should rush to transplant even though

she's doing great on Gleevec. She's worried that she's going to

develop CHF now and wondered if she should just go for transplant to

avoid it. He reassured her but I worry about all those people out

there who don't have the benefit of his reassuring words.

Once again let me say that it's not the information that disturbs

me, it's the way it came out. Worst case scenario......someone out

there will rush to transplant based solely on the CNN headline and

die needlessly. What a shame that would be.

Tracey

>

> Today's NPR program with Dr. Druker and Dr. Force is now available

on

> line.

>

> If you'll go to this page

>

> http://www.npr.org/templates/story/story.php?storyId=5589636

>

> and click on the " Listen " button, you'll be able to listen to

today's

> National Public Radio (NPR) broadcast on the .. " Talk Of The

Nation " ..

> program featuring Dr. Force, lead author of the Cardiac

study and

> Dr.

> Druker one of the highest ranked researchers in the world on

> GIST/CML/Gleevec, from the Oregon Health & Science University

Cancer

> Institute (OHSU).

>

> Zavie

>

> Zavie (age 68)

> 67 Shoreham Avenue

> Ottawa, Canada, 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

> PCRU 5/02 at RVH

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

[Guest guest]

At 12:26 AM 7/29/06 +0000, you wrote:

>Once again let me say that it's not the information that disturbs

>me, it's the way it came out. Worst case scenario......someone out

>there will rush to transplant based solely on the CNN headline and

>die needlessly. What a shame that would be.

I think you have to remember that everyone prescribed Gleevec is most

likely being treated by an oncologist.....so they do have someone to turn

to with their questions. By putting this in the news....and apparently is

was known since last Fall....it brings it to the attention of oncologist,

and if they don't happen to pick it up, their patients will bring the

information to them. Mass media is the way to get information out quickly.

I would not want this information to be buried in the back pages of a

newspaper.

I was impressed by what Dr. Force is proposing....that newly diagnosed get

some baseline cardiac testing (esp. left ventricular function), just like

you get a baseline PCR. Because there are ALL degrees of heart failure, you

won't necessarily know who is developing some heart failure once Gleevec

treatment has started unless you have some specific testing and baseline

test results. And who is to say at this point, how many patients have had

some mild cardiac impairment????? that is really not known. These 10 study

patient were picked up because they had pretty significant heart failure.

If it took a 'big headline' to get some movement on this and increased

public and medical awareness, I don't see that as a problem.

my 2-cents,

C.

[Guest guest]

I think you have to remember that everyone prescribed Gleevec is

most

> likely being treated by an oncologist.....so they do have someone

to turn

> to with their questions.

**********************************

In a perfect world I would agree with you but how many times

have we seen people (who were followed by oncologists) and who were

told they must have a transplant, when they were doing perfectly

fine on Gleevec. Or even worse, how many times have we seen

patients (who again, were followed by oncologists) who were told

that they didn't have to take Gleevec anymore because they were

cured. Or how many times have we seen patients being put on 200mg

of Gleevec just because they were doing so well, they " didn't need a

higher dose " . There is no shortage of incompetant stories out there

and these are the ones that I worry about.

The majority will hopefully have responsible and knowledable doctors

who will put this heart issue in perspective but I'm sure there will

also be some who will unfortunately, make terrible decisions because

of their lack of knowledge.

The competant doctors didn't need to hear this news on CNN in order

to follow their patients and it's a sad state indeed if doctors have

to rely on CNN in order to be aware of the risks to their patients.

Maybe CNN should also run a story about how Gleevec can cause toxic

liver damage because we know there are doctors out there who either

don't know this or just choose not to monitor their patient's liver

function.

Take care,

Tracey