Re: Suzzie: PCR RESULTS FINALLY

[Guest guest]

Thank You for The Congratulations in the middle of all your chaos with the fires

all around.

From: Sue <hollie@...>

Subject: [ ] Suzzie: PCR RESULTS FINALLY

Date: Thursday, February 12, 2009, 8:54 PM

Fantastic Feeling when you get the news that you are PCRU

Suzzie and now in the PRCU Club

Congratulations to you both

Sue

[Guest guest]

Hello... I also would like to congratulate Suzzie on her PCRU result and just

share that I also got a PCRU result yesterday.  After 3 years of being on

Gleevec, I was still PCR positive - very low and stable PCR, but CML still

present.  Then last year in March 2008 I started a combo Gleevec/IFN and in

December 2008 the PCR was still positive. Yesterday, I went to see my oncologist

and he gave me the PCR results from last month saying that my RT-PCR is

negative. It was such a wonderful news.  I believe that they will repeat the PCR

next month and if it is still negative, they will take me off the medication. 

That is the purpose of the trial.

 

Livia

From: Sue <hollie@...>

Subject: [ ] Suzzie: PCR RESULTS FINALLY

Date: Thursday, February 12, 2009, 8:54 PM

Fantastic Feeling when you get the news that you are PCRU

Suzzie and now in the PRCU Club

Congratulations to you both

Sue

[Guest guest]

Hi Livia:  Thank You and Congratulations to you also on your progress.  I could

see them stopping the Interferon, but not the Gleevec.  I have been PCRU for

quite awhile.  I would have to backtrack to my old reports, but I usually just

post that that I was negative and not positive.  As long as I see that, I was

always satisfied.  Take Care and Pray you do well.

From: Sue <hollieiinet (DOT) net.au>

Subject: [ ] Suzzie: PCR RESULTS FINALLY

groups (DOT) com

Date: Thursday, February 12, 2009, 8:54 PM

Fantastic Feeling when you get the news that you are PCRU

Suzzie and now in the PRCU Club

Congratulations to you both

Sue

[Guest guest]

It is actually a study done at s Hopkins where they combine Gleevec with

Sargamostim and Interferon and if you stay PCRU for a certain time during this

treatment, they will take you off all the medication. I posted the protocol info

to the group, it states there.  I started this trial, because I was still PCR

positive and I would like to become pregnant and my doctor feels that it is

safer to be PCRU then still PCR positive, which leads me to question for the

girls who were recently pregnant: Have you been PCR undetectable for certain

period of time on your treatment of was your PCR still low - detectable?

They have some patients who are off all the medications now as a result of

Gleevec/IFN combo.  The CML hasn't come back yet, but it hasn't been a long time

yet.  There is a second trial with some vaccine, so in case the IFN

doesn't improve the results, you can switch to the vaccine trial.  If you become

negative on vaccine for a certain period of time, same thing, they will take you

off ALL the medication and monitor.

I can repost the protocol to the group again, if you are interested.

Thank you... Livia 

From: Sue <hollieiinet (DOT) net.au>

Subject: [ ] Suzzie: PCR RESULTS FINALLY

groups (DOT) com

Date: Thursday, February 12, 2009, 8:54 PM

Fantastic Feeling when you get the news that you are PCRU

Suzzie and now in the PRCU Club

Congratulations to you both

Sue

[Guest guest]

Hi Livia:  I forgot all about that combination study.  I get on here pretty

often, but when I am involved with other things, sometimes I forget what I

read.  I have been PCRU since 2001, and Iike I said I would just say I am

negative.  I never got into all the fine details.

I was thinking about how sick I was on Interferon with combination ARA-C.  I had

flu like symptoms 24 hours a day.  Could not even feel my legs.  Very weak, and

then it was destroying my liver.  They stopped my ARA-C first, then the

Interferon.  There was no clinical trial yet available to me.  I was on Hydrea

until I could get into the trial for Gleevec in New York.

     With all the various treatments available, its best to just go with what

works.  I hope you do very well.  I will try to get on here more often and stay

updated.

From: Sue <hollieiinet (DOT) net.au>

Subject: [ ] Suzzie: PCR RESULTS FINALLY

groups (DOT) com

Date: Thursday, February 12, 2009, 8:54 PM

Fantastic Feeling when you get the news that you are PCRU

Suzzie and now in the PRCU Club

Congratulations to you both

Sue

[Guest guest]

It sounds great that you are PCRU.  It just feels very safe to be PCRU... I

think. I wonder, what used to be the dosage of IFN for CML patients before

Gleevec? I heard that it was pretty high (compared to my 0.30 cc I take during

this trial). I can really imagine very nasty side effects from Interferon at

higher doses.

From: Sue <hollieiinet (DOT) net.au>

Subject: [ ] Suzzie: PCR RESULTS FINALLY

groups (DOT) com

Date: Thursday, February 12, 2009, 8:54 PM

Fantastic Feeling when you get the news that you are PCRU

Suzzie and now in the PRCU Club

Congratulations to you both

Sue