the impact of this news

[Guest guest]

I agree that we should be aware of potential side effects and issues

that arise over time. In this particular case however, where only 10

people have been found to develop CHF, most of which had other issues

going on such as high blood pressure or diabetes, I wonder if this is

nothing more than fear mongering. Just look at the panic that has

happened on the lists...all of them.

I don't recall ever seeing such activity on all of the lists as I have

in the last day since this started. How many people are going to stop

taking their Gleevec because of this? How many people are going to

loose sleep worrying about this? How many people are going to run to

the ER in a panic everytime they feel short of breath (only to find

out that the cause is nothing more than anemia)? I would say many more

than the 10 people who developed this CHF (which may or may not have

anything to do with Gleevec).

Tracey

[Guest guest]

At 02:02 AM 7/25/06 +0000, you wrote:

>I agree that we should be aware of potential side effects and issues

>that arise over time. In this particular case however, where only 10

>people have been found to develop CHF, most of which had other issues

>going on such as high blood pressure or diabetes, I wonder if this is

>nothing more than fear mongering. Just look at the panic that has

>happened on the lists...all of them.

>

>I don't recall ever seeing such activity on all of the lists as I have

>in the last day since this started. How many people are going to stop

>taking their Gleevec because of this? How many people are going to

>loose sleep worrying about this?

Tracey,

I totally disagree with your post. What are the lists for if not to share

information with others that is of concern to CMLers. There are usually not

many posts because there isn't really that much to talk about. Gleevec is

not new to most of us. Discussion does not mean high anxiety....and I am

not seeing that on the lists. I am someone who believes that 'knowledge is

power' and not everyone has a top notch CML specialist they are dealing

with....so it is important to pass along information we read. If this was

not a significant piece of NEW information, then why would it be coming up

on all the lists????

If you look at Jerry's CML discussion, this has brought forth some other

new information as well........like Mark P. posting about his recent

hypertension, maybe Gleevec related........and the woman who's husband did

not qualify for a transplant because his heart (post Gleevec) had only 20%

function. Maybe this will be a reason for some good candidates to go to

transplant earlier????

I don't see anyone jumping off the Gleevec wagon and saying they will give

the drug up? We DO not know that there are only 10 Gleevec patients who

have developed CHF.....these 10 patients were all at MDACC. Maybe other

oncologists, seeing only a few CMLers did not see the connection between

the CHF and Gleevec............and NOW that this has hit the news they will

know to monitor for it.........and it will be more likely to be reported if

it occurs. Dr. Druker has told me that the more people who are on a drug

and the longer they are on it, the more side effects you will see. Which is

why in early, small trials often you don't see many side effects,

especially the rare ones........but once trials increase or the drug is

approved, you will see more side effects.

I will be very curious to see if Dr. Druker decides to do any particular

monitoring for heart function.

C.

[Guest guest]

I don't see anyone jumping off the Gleevec wagon and saying they

will give

> the drug up?

Hi ,

No you probably won't see these people stop taking their Gleevec

because hopefully the ones on the lists are informed enough to know

the dangers. My concern lies with the thousands of people who don't

go on the internet but just heard on the news that 30 second sound

bite that Gleevec causes heart failure.

I can guarantee you that there will be people who panic over this.

Infact I've already seen it. In talking with Zavie, he informed me

that his phone hasn't stopped ringing from patients who heard the

story and are concerned. Most of these patients are patients that

don't follow the lists but do listen to the news.

I agree with you that knowledge is power and I've said that for

years in the effort to educate patients, but I stand by my earlier

comments that this particular news story will do more harm than good

in the end. The panic this story will cause, will far outweigh any

risk of CHF we're exposed to.

Tracey

[Guest guest]

Hi Tracey,

I didn't count the number of posts concerning the heart scare, but I can

tell you that I had many (6) telephone calls from CML patients around

the planet asking me what I thought about the news reports.

These patients were genuinely concerned about the news and wanted my

opinion. I did my best to calm them down by telling them that it was a

very small number of patients that encountered heart problems and we had

to wait for the data to see what the numbers were.

I also reminded them that a large number of chemo drugs have side

effects that affect the heart. This is nothing new. I also mentioned

that in 7 years of looking at the CML lists, CHF while on Gleevec was

never an issue.

The phone calls I received were from patients who got their information

from the news media and not the CML list groups.

I also received many phone calls from friends and relatives asking me if

I saw the news and will it affect me. They knew I was on Gleevec and it

worried them.

I took a close look at the 10 CML patients who ran into this problem.

Only 3 of the 10 didn't have prior heart problems before taking Gleevec.

Since I have CHF, I do wonder if the Gleevec is making it worse, but I

leave that to my cardiologist to figure it out.

Zavie

[ ] the impact of this news

I agree that we should be aware of potential side effects and issues

that arise over time. In this particular case however, where only 10

people have been found to develop CHF, most of which had other issues

going on such as high blood pressure or diabetes, I wonder if this is

nothing more than fear mongering. Just look at the panic that has

happened on the lists...all of them.

I don't recall ever seeing such activity on all of the lists as I have

in the last day since this started. How many people are going to stop

taking their Gleevec because of this? How many people are going to

loose sleep worrying about this? How many people are going to run to

the ER in a panic everytime they feel short of breath (only to find

out that the cause is nothing more than anemia)? I would say many more

than the 10 people who developed this CHF (which may or may not have

anything to do with Gleevec).

Tracey

[Guest guest]

I should clarify something here. I'm not upset that the news about

these 10 patients with CHF surfaced, what bothers me is the way it

came out.

Headline news all over the world " Gleevec causes heart failure " .

How daunting is that! There was no mention that these patients had

previous cardiac issues, there was no mention that they were, shall

we say " older " and there was no mention of how the study was done.

If one of our group members found this study in some research paper

and posted it, I would have absolutely no problem because as a

group, we can discuss its relevance, and we can discuss just how big

of an implication it has. That's what we do here and I believe that

it's important to keep up to date.

My issue is for the thousands of people world wide, who don't have

the benefit of internet groups to put this news in perspective. All

they see is " Gleevec causes heart failure " . These same patients

don't understand what the difference between CCR, PCRU and a 3 log

reduction is. These are the patients who's doctors tell

them " you're as good as cured, there's no CML in you anymore " so

these are the patients that could easily say " I'm going to only take

Gleevec sometimes now because I don't really need it and I don't

want to get CHF " .

We don't see headline news saying " Gleevec causes liver damage " but

we all know that this is a possibility and should be monitored. We

also don't see headline news saying " Gleevec causes low counts which

put patients at grave risk for deadly infections " . These are all

things we know about and monitor but haven't lead to a widespread

panic because we discuss their relevance and put it all in

perspective.

So I guess what I'm saying is that it's not the information that

came out that bothers me, it's the way it came out and I see very

negative implications that could happen as a result which is what

really bothers me.

Tracey

[Guest guest]

Hey Zavie, Tracey & Group. . . FYI~my 2 cents:

I was on vacation visiting a friend; who lost a Mother recently to AML when

the article hit. . . it made me mad.

I never had 'heart problems before our gold'; is what the article would had

said about me if I had been one of the 'subjects/guinea pigs'. (brother & sister

survivors) don't take this literally. Since diagnosis, I have had at least 2

heart attacks, I know because I went to the ER. The other times I ignored the

'pains' thinking it was indigestion. To all, I say, run do not walk to your

nearest health care facility if you have chest pains, arm pains, side pains,

dizziness or anything that seems out of the ordinary. As a result, I now have

CAD and 2 Stents. Prior to my heart problems I had taken Procrit (I'm sure the

article would have added that).

I have 15 other fatal/terminal diseases including Hepatitis B & C from a blood

transfusion when my son was born in 1984 before the blood was being scrutinized

per the HIV/AIDS scare and the majority of donors were intravenous drug users.

The article would have ignored that I was going through a 'very nasty divorce';

my son had joined the USAF 10 days before my diagnosis; and that upon diagnosis

in 2003, I was given 2-5 months to live by the cancer center in my area. It

would have ignored that " I AM SURVIVING' almost 3 years with our gold. I am so

very 'sick and tired' of the media and its 'slanted' interpretation.

Take care brother & sister survivors. . . I have all in my prayers.

" K "

" I AIN'T FINISHED YET " !!!