Re: gleevac and heart condition

[Guest guest]

Hi Lori,

I'm sorry to hear about your dad's problems.

I think that your dad needs to be treated by a CML specialist. They have

experience in treating patients with heart disease. They also know about all

the alternative drugs that can be used instead of Gleevec. There are at

least 6 of them that work in situations where Gleevec doesn't work or the

patient can't tolerate the side effects.

If you tell us where he lives we can suggest a specialist that is close by.

I have been taking Gleevec for 8 years without any negative affect to my

heart. I started treatment with Interferon in the fall of 1999. This left me

with congestive heart failure (a known side effect of Interferon). I started

Gleevec a year later and it has worked fine for me.

There was a scare over a year ago that Gleevec caused heart problems. After

investigation it was found to be untrue.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

perryandlori

Sent: April-30-09 1:00 PM

Subject: [ ] gleevac and heart condition

My dad is 62 years old. He was diagnosed with CML November 2008. He started

the Gleevac and went into remission, however he suffered lots of side

effects and was not able to work through them before he went in for a

routine heart cath that went really wrong. That was March 2009. During the

heart cath his coronary artery began to dissect. He ended up coding 3 times

and having triple bipass.

Before all this began he had no major heart problems. He has always

excercised, lifted weights and ate pretty healthy. Now he has major heart

damage. He started back on the Gleevac 4 days ago. The side effects have

started full force again.

So my concern is, of his symptoms, what is from the Gleevac and what is from

the heart. I know that what I have read Gleevac can effect the heart.

Is there anyone out there that has experience with a heart patient that has

CML and is using Gleevac? Is there another alternative? We need some

direction.

Thank you,

Lori

[Guest guest]

I had a five-way heart by-pass in 1992 and was diagnosed with CML in 2003. I

have taken 400mg Gleevec since I was diagnosed and have not experienced any

additional heart issues that can be attributited to the medication. The Gleevec

vacations are due to my Iron Defiecent Anemia that is a side effect.

H.

dxd 2/03

400mg Gleevec 3/03

PCRU 11/03

Q-PCR Undetectable 11/04

RT-PCR .000 11/06

Transfusions 11/06-5/07

Gleevec vacation 6/07-1/08

Gleevec 1/08 - 5/08

Gleevec vacation 5/08-Present

Transfusion and Procrit 6/08-11/08

>

> Hi Lori,

>

> I'm sorry to hear about your dad's problems.

>

> I think that your dad needs to be treated by a CML specialist. They have

> experience in treating patients with heart disease. They also know about all

> the alternative drugs that can be used instead of Gleevec. There are at

> least 6 of them that work in situations where Gleevec doesn't work or the

> patient can't tolerate the side effects.

>

> If you tell us where he lives we can suggest a specialist that is close by.

>

> I have been taking Gleevec for 8 years without any negative affect to my

> heart. I started treatment with Interferon in the fall of 1999. This left me

> with congestive heart failure (a known side effect of Interferon). I started

> Gleevec a year later and it has worked fine for me.

>

> There was a scare over a year ago that Gleevec caused heart problems. After

> investigation it was found to be untrue.

>

> Zavie

>

>

>

>

>

> Zavie (age 70)

> 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

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Tel: 561-429-3309 in Florida

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> perryandlori

> Sent: April-30-09 1:00 PM

>

> Subject: [ ] gleevac and heart condition

>

>

>

>

>

> My dad is 62 years old. He was diagnosed with CML November 2008. He started

> the Gleevac and went into remission, however he suffered lots of side

> effects and was not able to work through them before he went in for a

> routine heart cath that went really wrong. That was March 2009. During the

> heart cath his coronary artery began to dissect. He ended up coding 3 times

> and having triple bipass.

> Before all this began he had no major heart problems. He has always

> excercised, lifted weights and ate pretty healthy. Now he has major heart

> damage. He started back on the Gleevac 4 days ago. The side effects have

> started full force again.

> So my concern is, of his symptoms, what is from the Gleevac and what is from

> the heart. I know that what I have read Gleevac can effect the heart.

> Is there anyone out there that has experience with a heart patient that has

> CML and is using Gleevac? Is there another alternative? We need some

> direction.

>

> Thank you,

> Lori

>

>

>

>

>

>

>

[Guest guest]

Lori, For a question like this , I feel that you need to ask one of the

experts such as Dr. Druker or Dr. Mauro. They are the best one's to answer

this type of question. Dr. Druker is the one who developed Gleevec. He is

in Portland, Oregon at OSHU.

[Guest guest]

Hi Lori,

Welcome to the group. I'm sorry to hear that your Dad has been having a hard

time, I hope he feels better soon.

As for knowing if his problems are caused by Gleevec or not, the only way to

know for sure is to have him stop the drug temporarily and see if his symptoms

go away. If they do, chances are good that it's the Gleevec but please do not

attempt this without a doctor's approval and close monitoring. If it turns out

that his problems are directly related to Gleevec, there are alternative drugs

available but each has its own risk/benefit profile.

You should consult with a CML expert to gain direction but in the mean time, be

aware that the reports saying that Gleevec caused heart problems were

investigated further and found to be unwarranted. Here are a couple of articles

that discuss this issue:

http://publications.icr.ac.uk/3965/

http://tinyurl.com/dfqhn9

Goodluck,

Tracey

>

> My dad is 62 years old. He was diagnosed with CML November 2008. He started

the Gleevac and went into remission, however he suffered lots of side effects

and was not able to work through them before he went in for a routine heart cath

that went really wrong. That was March 2009. During the heart cath his coronary

artery began to dissect. He ended up coding 3 times and having triple bipass.

> Before all this began he had no major heart problems. He has always

excercised, lifted weights and ate pretty healthy. Now he has major heart

damage. He started back on the Gleevac 4 days ago. The side effects have

started full force again.

> So my concern is, of his symptoms, what is from the Gleevac and what is from

the heart. I know that what I have read Gleevac can effect the heart.

> Is there anyone out there that has experience with a heart patient that has

CML and is using Gleevac? Is there another alternative? We need some

direction.

>

> Thank you,

> Lori

>

[Guest guest]

Sorry to hear about your dad. I was told in sept.06 that I have CML. Since I

have a heart murmur. I had bypass in 2003. So you might want to ask his cml

doctor about that. I know they have to watch my murmur real close so they can go

in and repair it if need be  Good luck.

From: perryandlori <perryandlori@...>

Subject: [ ] gleevac and heart condition

Date: Thursday, April 30, 2009, 12:59 PM

My dad is 62 years old. He was diagnosed with CML November 2008. He started the

Gleevac and went into remission, however he suffered lots of side effects and

was not able to work through them before he went in for a routine heart cath

that went really wrong. That was March 2009. During the heart cath his coronary

artery began to dissect. He ended up coding 3 times and having triple bipass.

Before all this began he had no major heart problems. He has always excercised,

lifted weights and ate pretty healthy. Now he has major heart damage. He started

back on the Gleevac 4 days ago. The side effects have started full force again.

So my concern is, of his symptoms, what is from the Gleevac and what is from the

heart. I know that what I have read Gleevac can effect the heart.

Is there anyone out there that has experience with a heart patient that has CML

and is using Gleevac? Is there another alternative? We need some direction.

Thank you,

Lori

[Guest guest]

I have cardiomyopathy and am on gleevec. I am on cardiac meds (ace

inhibitors, beta blockers) and on Gleevec since February 09 and will go for

my first Mugga Scan this week. I'm not sure if it has caused any extra

symptoms.. it's very hard since many of the symptoms could be either (edema,

shortness of breath) etc. My cardiologist is watching me really closely

and we will know more as we go. Is your dad really watching his sodium

content and water intake? Those are critical for healing hearts and help

control some of the other symptoms.