Tonight's teleconference (long)

[Guest guest]

Hi Everyone,

I thought I'd post a bit about what was said in tonight's

teleconference from Doctors Druker and Shah for those who didn't get

a chance to listen to it.

I can't guarantee that my numbers are 100% accurate but this is what

I remember hearing from the five year follow up of the IRIS trial:

13% of patients relapsed or became resistant to Gleevec

8% of patients left the trial voluntarily for a variety of

reasons...some left to pursue other options, some left because they

were tired of all the follow up appointments/testing, some left

because they didn't want the hassle of travelling to far away

centres and some left for other reasons.

4% of patients stopped taking Gleevec due to intolerable side effects

3% left the study to seek a BMT

1% of patients were lost somewhere and couldn't be found (Where's

Waldo

2% of patients died from causes that had nothing to do with CML (I

guess they were hit by the proverbial bus)

So that leaves 69% of patients of the original 553 who started the

trial, still in the trial and 31% of the patients who are no longer

in the trial.

Roughly 75% of patients will do marvellously on 400mg of Gleevec and

25% will need something more than 400mg (either a higher dose or a

different drug)

50% of the patients who left the trial, actually left while they

were in CCR so we shouldn't assume that those who left, left because

they weren't doing well.

Only 7% of patients of this group of patients have progressed to

more advanced stages (accelerated or blast) which means that 93%

have NOT progressed in their disease for 5 years. Now keep in mind

the difference between relapsing and progressing. Relapsing is when

you lose your response but you're still in chronic phase, whereas

progressing is when you pass the chronic phase and enter the more

advanced phases.

The risk of relapse for those who achieved CCR within 1 year is only

3% after 5 years with that figure dropping in the 4th and 5th year.

The most relapses were seen in the second year of treatment.

Dr. Druker addressed the CHF issue by saying that out of the 553

patients in the IRIS trial, only 1 developed CHF (congestive heart

failure) which he said is not significant enough to warrant baseline

echos for everyone. He did suggest however that for those who have

risk factors for heart disease (high blood pressure, diabetes,

family history, etc) then they should get a base line echo for

reference.

It's quite amazing how far we've come in just a couple of years. We

started out with Gleevec which was an amazing break through. Then

we got the second generation kinase inhibitors (Sprycel and Tasigna)

and now we even have a third generation drug that is showing promise

in early clinical trials (MK0457).

I know many of us are concerned with the long term effects of taking

these drugs for the rest of lives but they said that so far, there

hasn't been an issue of long term toxicities which I guess means

that they haven't seen anyone grow a third eyeball yet.

The issue of reducing dosages was addressed. They said that a year

ago, they didn't recommend anyone lower their dose (even those on

800) but now that we have so many options and now that we see the

relapse rates actually declining, they have allowed some people to

reduce their dose from 800 to 600 or 600 to 400 but they don't

recommend that anyone go below 400mg.

They addressed relapse rates in BMT's which I found interesting.

10% of patients will relapse from a regular sibling matched BMT but

50% will relapse from an identical twin matched BMT.

Trisomy 8 in PH negative cells is the most common abnormality seen

and it's significance isn't completely understood. For now,

patients who develop this are just monitored more closely.

Dr. Shah made an interesting comment about how much money we spend

on cancer research as opposed to the war on terror. I forget the

exact number but we spend an awful lot more on the war than we do on

cancer research yet for every person that was killed on 9/11, there

are 100 who die every day from cancer.

Dr. Druker mentioned that CML has actually become a bit complicated

in the recent years with all the advancements we've had and all the

options that are open to us. He stressed the importance of seeing

an expert because of this.

And finally, the issue of PCR's was addressed. They said that a

negative PCR should be taken with a grain of salt so to speak.

There are two issues that seem to be common with PCRU readings. One

is the sensitivity of the test being low so as to not pick up the

leukemic cells and the other is the issue of quality. If the sample

has been sitting around degrading, it may show to be PCRU when in

reality it could be full of leukemic cells.

So that was it in a nutshell from what I remember.

Take care,

Tracey

[Guest guest]

I really appreciate all the information Tracey has shared with us all.

However, I'd like to add a bit to the information on CHF.

My husband developed CHF and had none of the risk factors listed. He has been

on 400 mg Gleevec since 6/01. The progression of his tiredness came slowly and

he did not realize it until he was diagnosed with a real ailment and realized he

was taking more naps and had less energy (having to lay down after vacuuming one

room instead of after the whole 1000 square feet of our home was done). He was

experiencing shortness of breath but was tired of the " must be the Gleevec "

response when other things came up, that he never mentioned anything to the

doctors until the CHF news came out. At his next regular onc appointment he

mentioned it and even though the doctor could not find any of the symptoms

aparant except shortness of breath, he ordered the Echo done. His heart was

only pushing 10-15% of blood out where a normal heart pumps 50%-60%. The doctor

would not even let him return to his truck to put his personal items there.

They flew him to the nearest Heart hospital the

next day and spent the next 9 days there having a defibulator/pace maker

installed and waiting for his heart or blood or something to stablize before

allowing him to return home. More than once the cardiologists told me they

wished it was caught sooner. That diagnoses was on Oct 5. They took him off

the Gleevec immediately. If it was caught sooner, maybe both could have been

treated. Last month's blood work showed signs of remision failing. We will do

more blood work next week that will give more acurate counts on the status.

I am SO VERY GRATEFUL for Gleevec. Life before Gleevec sucked! It gave him 5

good years and hopefully he can go back on it or something again before the

leukemia progresses too far. My only wish is that we knew in time to catch it

before the heart was in such bad shape.

Please - if you are more tired than usual - or have shortness of breath of any

kind - low blood pressure when it has always been normal - go get tested - other

risk factors or not. I don't want to stress anyone out - as it is a rare side

effect - I just want to make sure people don't ignore the symptoms or blame it

as a Gleevec side effect or the dust at the river, or any of the other things

blamed his on. It is a treatable Gleevec side affect - more treatable if

caught early. The test is painless -

Ora

Wife of - 46 year old " healthy for a sick guy " as the doctors say

dx 06/00, gleevec 06/01 until 10/06 CHF diagnoses hoping the leukemia doesn't

return too fast before the heart can heal enough to treat it again - or before

doctors can figure out the best way to treat both -

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