Tracey - encouraging post....

[Guest guest]

Tracey, thanks for your post! That's what I needed to hear!!! I am

monitored very closesly, plus IFN is well known medication... so they

just check on me to see if the combo of IFN, Gleevec and Sargamostim

is not harming my liver, heart, and I guess just general CBC to

confirm the basics... I do this trial not only for myself, but for

all of us... I wonder what is the difference if you take IFN before

the Gleevec, or IFN with the Gleevec all together since the

diagnosis, or if you do what I do... Gleevec first and then Gleevec

and IFN combo...

From: Tracey <traceyincanada@...>

Subject: [ ] Re: Trials

Date: Monday, October 13, 2008, 10:11 PM

Hi ,

I think that's SOOOOO exciting! I know that Giora's experiment

didn't work but I've heard of others that have.

There's that famous study that was done in France where 8 people who

had been PCRU for some time stopped taking their Gleevec and 4 were

able to remain PCRU. The other 4 relapsed but what was interesting

to note was that the 4 who remained PCRU had all taken INF prior to

Gleevec.

If there was a chance I could be drug free, I think I might be

persuaded to try it, as long as I was monitored VERY closely.

I can't wait to hear about your experience if you choose to do it so

please keep us informed!

Tracey

[Guest guest]

Interesting--I wonder if it has anything to do with how long you've

been on Gleevec. I started it in September of 2006. I was off it

for one week this past June and suddenly my Philadelphia chromosomes

were detectable again. It was like this: March - negative. July -

Positive, August Negative.

The only explanation I have for this is that in June doctors stupidly

took me off Gleevec for a week while I was in the hospital because

they didn't check it out with my oncologist first, and I was too sick

and out of it to question them--and thought surely they would do

this.

My Oncologist told me today (back to being Philadelphia chromosome

negative/undetectable--yay!) that there is good evidence that taking

the medication sporadically promotes resistance to Gleevec and it

needs to be taken absolutely regularly every single day. I don't

know if I take it for a long time will I eventually get to the point

where I am permanently suppressed, or what, but now I'm afraid to

even go there.

Vicki

>

> From: Tracey <traceyincanada@...>

> Subject: [ ] Re: Trials

>

> Date: Monday, October 13, 2008, 10:11 PM

>

> Hi ,

>

> I think that's SOOOOO exciting! I know that Giora's experiment

> didn't work but I've heard of others that have.

>

> There's that famous study that was done in France where 8 people

who

> had been PCRU for some time stopped taking their Gleevec and 4 were

> able to remain PCRU. The other 4 relapsed but what was interesting

> to note was that the 4 who remained PCRU had all taken INF prior to

> Gleevec.

>

> If there was a chance I could be drug free, I think I might be

> persuaded to try it, as long as I was monitored VERY closely.

>

> I can't wait to hear about your experience if you choose to do it

so

> please keep us informed!

>

> Tracey

>

[Guest guest]

Hi Vicki,

It's actually quite common to bounce in and out of

detectable/undetectable and there usually isn't any significance to

the bounces so don't worry if you suddenly bounce back to detectable

one day.

You're right about the importance of taking the medication regularly

though. People who skip taking their pills on a regular basis often

become resistant and relapse.

Tracey

> >

> > From: Tracey <traceyincanada@>

> > Subject: [ ] Re: Trials

> >

> > Date: Monday, October 13, 2008, 10:11 PM

> >

> > Hi ,

> >

> > I think that's SOOOOO exciting! I know that Giora's experiment

> > didn't work but I've heard of others that have.

> >

> > There's that famous study that was done in France where 8 people

> who

> > had been PCRU for some time stopped taking their Gleevec and 4

were

> > able to remain PCRU. The other 4 relapsed but what was

interesting

> > to note was that the 4 who remained PCRU had all taken INF prior

to

> > Gleevec.

> >

> > If there was a chance I could be drug free, I think I might be

> > persuaded to try it, as long as I was monitored VERY closely.

> >

> > I can't wait to hear about your experience if you choose to do it

> so

> > please keep us informed!

> >

> > Tracey

> >

>