Trial

[Guest guest]

Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a year

long trial and if I become PCRU, they are going to take me off the

medication... completely... I am on this trial at JHU with Dr. .

I have recently spoken to them if anybody has reached PCRU on this

combo trial and the answer was yes. They have the first patient who

has been off the medication for over 4 months and I believe another

two patients are coming to this point. As far as me... my PCR was

0.08 before I started the trial. The reason I started is that I

wanted to go off the medication at least for several months, years

possibly and try to have a baby. I would just feel more comfortable

to conceive a child while being of the medication completely. Before

the trial I was on 600 mg of Gleevec and my PCR was very

stable, .01, .02, .04, then again .02, .08. I started this trial and

my PCR seems to be still very stable, but I haven't reached PCRU

yet... my blood work is o.k, however my white cells are a little bit

elevated around 8,000. My average WBC is around 5,000. Nobody seems

to be concerned as it can be a side effect of the trial. My last PCR

was .04, so still very stable, but still there... and almost the same

as before the trial. I just pray and hope that these nasty cells that

still show on my PCR will disappear... I am tolerating IFN very

well and I am glad to be the part of this study. I hear that it is

very promising, but I personally can't confirm anything yet... All of

the patients who are on this trial are receiving better results.

Their PCR is going down. I believe there was one person who couldn't

tolerate IFN, but I am not sure. I should ask more details on this

trial and the results of the trial... so I can share it with you

guys... I will do it during my next visit. Please ask questions that

you would like to know the answers on. I will ask them and email it

to the group. Anyway, I am still PCR positive and I wish so much to

reach the PCRU!! I am young and I always try to get best out of

everything, so why can't I get the best possible result with the

CML? I try so hard... Even though I am tolerating this combo of

medication very well, I am very tired. I can deal with it, but I hate

it... Anyway, please wish me a good luck with this... Livia

[Guest guest]

-Hi Livia i wish you all the luck in the world and i will pray for

you to reach pcru so you can get pregnant I also thank you so much

for doing this trial i know that's for all of us. Do you live in

land? I sure wish i could meet someone that lives there.

Lots of luck and keep us posted

Esther

-- In , livka234 <no_reply@...> wrote:

>

> Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a year

> long trial and if I become PCRU, they are going to take me off the

> medication... completely... I am on this trial at JHU with Dr.

.

> I have recently spoken to them if anybody has reached PCRU on this

> combo trial and the answer was yes. They have the first patient who

> has been off the medication for over 4 months and I believe another

> two patients are coming to this point. As far as me... my PCR was

> 0.08 before I started the trial. The reason I started is that I

> wanted to go off the medication at least for several months, years

> possibly and try to have a baby. I would just feel more comfortable

> to conceive a child while being of the medication completely.

Before

> the trial I was on 600 mg of Gleevec and my PCR was very

> stable, .01, .02, .04, then again .02, .08. I started this trial

and

> my PCR seems to be still very stable, but I haven't reached PCRU

> yet... my blood work is o.k, however my white cells are a little

bit

> elevated around 8,000. My average WBC is around 5,000. Nobody seems

> to be concerned as it can be a side effect of the trial. My last

PCR

> was .04, so still very stable, but still there... and almost the

same

> as before the trial. I just pray and hope that these nasty cells

that

> still show on my PCR will disappear... I am tolerating IFN very

> well and I am glad to be the part of this study. I hear that it is

> very promising, but I personally can't confirm anything yet... All

of

> the patients who are on this trial are receiving better results.

> Their PCR is going down. I believe there was one person who

couldn't

> tolerate IFN, but I am not sure. I should ask more details on this

> trial and the results of the trial... so I can share it with you

> guys... I will do it during my next visit. Please ask questions

that

> you would like to know the answers on. I will ask them and email it

> to the group. Anyway, I am still PCR positive and I wish so much to

> reach the PCRU!! I am young and I always try to get best out of

> everything, so why can't I get the best possible result with the

> CML? I try so hard... Even though I am tolerating this combo of

> medication very well, I am very tired. I can deal with it, but I

hate

> it... Anyway, please wish me a good luck with this... Livia

>

[Guest guest]

Hi, Esther.

 

Hi, thanks for your reply. I live in Virginia, but we can definitely meet.  I

can make a trip to MD:) Let's plan something....  

>

> Hi , I am on IFN+Sargamostim+ Gleevec trial now. It is a year

> long trial and if I become PCRU, they are going to take me off the

> medication.. . completely.. . I am on this trial at JHU with Dr.

.

> I have recently spoken to them if anybody has reached PCRU on this

> combo trial and the answer was yes. They have the first patient who

> has been off the medication for over 4 months and I believe another

> two patients are coming to this point. As far as me... my PCR was

> 0.08 before I started the trial. The reason I started is that I

> wanted to go off the medication at least for several months, years

> possibly and try to have a baby. I would just feel more comfortable

> to conceive a child while being of the medication completely.

Before

> the trial I was on 600 mg of Gleevec and my PCR was very

> stable, .01, .02, .04, then again .02, .08. I started this trial

and

> my PCR seems to be still very stable, but I haven't reached PCRU

> yet... my blood work is o.k, however my white cells are a little

bit

> elevated around 8,000. My average WBC is around 5,000. Nobody seems

> to be concerned as it can be a side effect of the trial. My last

PCR

> was .04, so still very stable, but still there... and almost the

same

> as before the trial. I just pray and hope that these nasty cells

that

> still show on my PCR will disappear... I am tolerating IFN very

> well and I am glad to be the part of this study. I hear that it is

> very promising, but I personally can't confirm anything yet... All

of

> the patients who are on this trial are receiving better results.

> Their PCR is going down. I believe there was one person who

couldn't

> tolerate IFN, but I am not sure. I should ask more details on this

> trial and the results of the trial... so I can share it with you

> guys... I will do it during my next visit. Please ask questions

that

> you would like to know the answers on. I will ask them and email it

> to the group. Anyway, I am still PCR positive and I wish so much to

> reach the PCRU!! I am young and I always try to get best out of

> everything, so why can't I get the best possible result with the

> CML? I try so hard... Even though I am tolerating this combo of

> medication very well, I am very tired. I can deal with it, but I

hate

> it... Anyway, please wish me a good luck with this... Livia

>

[Guest guest]

Hi Livia,

I was diagnosed with CML a couple of months ago and already had some

problems with side effects from Gleevec. I would be ready to suffer

from any side effects for some while if I would know that I will have

drug free remission after words. I wish you the best results on your

trial with less possible side effects. Keep us informed about your

progress.

Lilia.

>

> Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a year

> long trial and if I become PCRU, they are going to take me off the

> medication... completely... I am on this trial at JHU with Dr.

.

> I have recently spoken to them if anybody has reached PCRU on this

> combo trial and the answer was yes. They have the first patient who

> has been off the medication for over 4 months and I believe another

> two patients are coming to this point. As far as me... my PCR was

> 0.08 before I started the trial. The reason I started is that I

> wanted to go off the medication at least for several months, years

> possibly and try to have a baby. I would just feel more comfortable

> to conceive a child while being of the medication completely.

Before

> the trial I was on 600 mg of Gleevec and my PCR was very

> stable, .01, .02, .04, then again .02, .08. I started this trial

and

> my PCR seems to be still very stable, but I haven't reached PCRU

> yet... my blood work is o.k, however my white cells are a little

bit

> elevated around 8,000. My average WBC is around 5,000. Nobody seems

> to be concerned as it can be a side effect of the trial. My last

PCR

> was .04, so still very stable, but still there... and almost the

same

> as before the trial. I just pray and hope that these nasty cells

that

> still show on my PCR will disappear... I am tolerating IFN very

> well and I am glad to be the part of this study. I hear that it is

> very promising, but I personally can't confirm anything yet... All

of

> the patients who are on this trial are receiving better results.

> Their PCR is going down. I believe there was one person who

couldn't

> tolerate IFN, but I am not sure. I should ask more details on this

> trial and the results of the trial... so I can share it with you

> guys... I will do it during my next visit. Please ask questions

that

> you would like to know the answers on. I will ask them and email it

> to the group. Anyway, I am still PCR positive and I wish so much to

> reach the PCRU!! I am young and I always try to get best out of

> everything, so why can't I get the best possible result with the

> CML? I try so hard... Even though I am tolerating this combo of

> medication very well, I am very tired. I can deal with it, but I

hate

> it... Anyway, please wish me a good luck with this... Livia

>

[Guest guest]

Lot's of LUCK...sounds very exciting. HMMM life without pills... I

hope you do well and sorry that you are so tired.

>

> Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a year

> long trial and if I become PCRU, they are going to take me off the

> medication... completely... I am on this trial at JHU with Dr.

.

> I have recently spoken to them if anybody has reached PCRU on this

> combo trial and the answer was yes. They have the first patient who

> has been off the medication for over 4 months and I believe another

> two patients are coming to this point. As far as me... my PCR was

> 0.08 before I started the trial. The reason I started is that I

> wanted to go off the medication at least for several months, years

> possibly and try to have a baby. I would just feel more comfortable

> to conceive a child while being of the medication completely.

Before

> the trial I was on 600 mg of Gleevec and my PCR was very

> stable, .01, .02, .04, then again .02, .08. I started this trial

and

> my PCR seems to be still very stable, but I haven't reached PCRU

> yet... my blood work is o.k, however my white cells are a little

bit

> elevated around 8,000. My average WBC is around 5,000. Nobody seems

> to be concerned as it can be a side effect of the trial. My last

PCR

> was .04, so still very stable, but still there... and almost the

same

> as before the trial. I just pray and hope that these nasty cells

that

> still show on my PCR will disappear... I am tolerating IFN very

> well and I am glad to be the part of this study. I hear that it is

> very promising, but I personally can't confirm anything yet... All

of

> the patients who are on this trial are receiving better results.

> Their PCR is going down. I believe there was one person who

couldn't

> tolerate IFN, but I am not sure. I should ask more details on this

> trial and the results of the trial... so I can share it with you

> guys... I will do it during my next visit. Please ask questions

that

> you would like to know the answers on. I will ask them and email it

> to the group. Anyway, I am still PCR positive and I wish so much to

> reach the PCRU!! I am young and I always try to get best out of

> everything, so why can't I get the best possible result with the

> CML? I try so hard... Even though I am tolerating this combo of

> medication very well, I am very tired. I can deal with it, but I

hate

> it... Anyway, please wish me a good luck with this... Livia

>

[Guest guest]

> >

> > Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a

year

> > long trial and if I become PCRU, they are going to take me off

the

> > medication... completely... I am on this trial at JHU with Dr.

> .

> > I have recently spoken to them if anybody has reached PCRU on

this

> > combo trial and the answer was yes. They have the first patient

who

> > has been off the medication for over 4 months and I believe

another

> > two patients are coming to this point. As far as me... my PCR was

> > 0.08 before I started the trial. The reason I started is that I

> > wanted to go off the medication at least for several months,

years

> > possibly and try to have a baby. I would just feel more

comfortable

> > to conceive a child while being of the medication completely.

> Before

> > the trial I was on 600 mg of Gleevec and my PCR was very

> > stable, .01, .02, .04, then again .02, .08. I started this trial

> and

> > my PCR seems to be still very stable, but I haven't reached PCRU

> > yet... my blood work is o.k, however my white cells are a little

> bit

> > elevated around 8,000. My average WBC is around 5,000. Nobody

seems

> > to be concerned as it can be a side effect of the trial. My last

> PCR

> > was .04, so still very stable, but still there... and almost the

> same

> > as before the trial. I just pray and hope that these nasty cells

> that

> > still show on my PCR will disappear... I am tolerating IFN

very

> > well and I am glad to be the part of this study. I hear that it

is

> > very promising, but I personally can't confirm anything yet...

All

> of

> > the patients who are on this trial are receiving better results.

> > Their PCR is going down. I believe there was one person who

> couldn't

> > tolerate IFN, but I am not sure. I should ask more details on

this

> > trial and the results of the trial... so I can share it with you

> > guys... I will do it during my next visit. Please ask questions

> that

> > you would like to know the answers on. I will ask them and email

it

> > to the group. Anyway, I am still PCR positive and I wish so much

to

> > reach the PCRU!! I am young and I always try to get best out of

> > everything, so why can't I get the best possible result with the

> > CML? I try so hard... Even though I am tolerating this combo

of

> > medication very well, I am very tired. I can deal with it, but I

> hate

> > it... Anyway, please wish me a good luck with this... Livia

> >

>

[Guest guest]

--

Hi Livia i wish you all the luck in your trial.Does Dr. only do

trials or does he take patients too. Do they do the same trials at U

of M.I am looking to find a leukemia specialist because my onc is

not a specialist, or does it matter if you are doing well.

Good Luck and hope you have an easy trial.

Esther

- In , " marri35 " <tmtip@...> wrote:

>

> Lot's of LUCK...sounds very exciting. HMMM life without pills... I

> hope you do well and sorry that you are so tired.

>

>

> >

> > Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a

year

> > long trial and if I become PCRU, they are going to take me off

the

> > medication... completely... I am on this trial at JHU with Dr.

> .

> > I have recently spoken to them if anybody has reached PCRU on

this

> > combo trial and the answer was yes. They have the first patient

who

> > has been off the medication for over 4 months and I believe

another

> > two patients are coming to this point. As far as me... my PCR was

> > 0.08 before I started the trial. The reason I started is that I

> > wanted to go off the medication at least for several months,

years

> > possibly and try to have a baby. I would just feel more

comfortable

> > to conceive a child while being of the medication completely.

> Before

> > the trial I was on 600 mg of Gleevec and my PCR was very

> > stable, .01, .02, .04, then again .02, .08. I started this trial

> and

> > my PCR seems to be still very stable, but I haven't reached PCRU

> > yet... my blood work is o.k, however my white cells are a little

> bit

> > elevated around 8,000. My average WBC is around 5,000. Nobody

seems

> > to be concerned as it can be a side effect of the trial. My last

> PCR

> > was .04, so still very stable, but still there... and almost the

> same

> > as before the trial. I just pray and hope that these nasty cells

> that

> > still show on my PCR will disappear... I am tolerating IFN

very

> > well and I am glad to be the part of this study. I hear that it

is

> > very promising, but I personally can't confirm anything yet...

All

> of

> > the patients who are on this trial are receiving better results.

> > Their PCR is going down. I believe there was one person who

> couldn't

> > tolerate IFN, but I am not sure. I should ask more details on

this

> > trial and the results of the trial... so I can share it with you

> > guys... I will do it during my next visit. Please ask questions

> that

> > you would like to know the answers on. I will ask them and email

it

> > to the group. Anyway, I am still PCR positive and I wish so much

to

> > reach the PCRU!! I am young and I always try to get best out of

> > everything, so why can't I get the best possible result with the

> > CML? I try so hard... Even though I am tolerating this combo

of

> > medication very well, I am very tired. I can deal with it, but I

> hate

> > it... Anyway, please wish me a good luck with this... Livia

> >

>

[Guest guest]

Livia,

good luck with your new trial, maybe the tired will go away and you will do

great.

Look forward to reading your post.

Anita

________________________________

From: snipandtip <no_reply >

Sent: Wednesday, October 22, 2008 5:28:53 PM

Subject: [ ] Re: Trial

> >

> > Hi , I am on IFN+Sargamostim+ Gleevec trial now. It is a

year

> > long trial and if I become PCRU, they are going to take me off

the

> > medication.. . completely.. . I am on this trial at JHU with Dr.

> .

> > I have recently spoken to them if anybody has reached PCRU on

this

> > combo trial and the answer was yes. They have the first patient

who

> > has been off the medication for over 4 months and I believe

another

> > two patients are coming to this point. As far as me... my PCR was

> > 0.08 before I started the trial. The reason I started is that I

> > wanted to go off the medication at least for several months,

years

> > possibly and try to have a baby. I would just feel more

comfortable

> > to conceive a child while being of the medication completely.

> Before

> > the trial I was on 600 mg of Gleevec and my PCR was very

> > stable, .01, .02, .04, then again .02, .08. I started this trial

> and

> > my PCR seems to be still very stable, but I haven't reached PCRU

> > yet... my blood work is o.k, however my white cells are a little

> bit

> > elevated around 8,000. My average WBC is around 5,000. Nobody

seems

> > to be concerned as it can be a side effect of the trial. My last

> PCR

> > was .04, so still very stable, but still there... and almost the

> same

> > as before the trial. I just pray and hope that these nasty cells

> that

> > still show on my PCR will disappear... I am tolerating IFN

very

> > well and I am glad to be the part of this study. I hear that it

is

> > very promising, but I personally can't confirm anything yet...

All

> of

> > the patients who are on this trial are receiving better results.

> > Their PCR is going down. I believe there was one person who

> couldn't

> > tolerate IFN, but I am not sure. I should ask more details on

this

> > trial and the results of the trial... so I can share it with you

> > guys... I will do it during my next visit. Please ask questions

> that

> > you would like to know the answers on. I will ask them and email

it

> > to the group. Anyway, I am still PCR positive and I wish so much

to

> > reach the PCRU!! I am young and I always try to get best out of

> > everything, so why can't I get the best possible result with the

> > CML? I try so hard... Even though I am tolerating this combo

of

> > medication very well, I am very tired. I can deal with it, but I

> hate

> > it... Anyway, please wish me a good luck with this... Livia

> >

>

[Guest guest]

Esther,

My husband goes to JHU and he sees Dr. Gore. Dr. Gore has recently

told my husband that he will be a good candidate for the trial.

Although he said that he would be put in one of two groups, the trial

group or a group that would be on Interferon. We are still waiting

for the go ahead and more info.

Carol

> > >

> > > Hi , I am on IFN+Sargamostim+Gleevec trial now. It is a

> year

> > > long trial and if I become PCRU, they are going to take me off

> the

> > > medication... completely... I am on this trial at JHU with Dr.

> > .

> > > I have recently spoken to them if anybody has reached PCRU on

> this

> > > combo trial and the answer was yes. They have the first patient

> who

> > > has been off the medication for over 4 months and I believe

> another

> > > two patients are coming to this point. As far as me... my PCR

was

> > > 0.08 before I started the trial. The reason I started is that I

> > > wanted to go off the medication at least for several months,

> years

> > > possibly and try to have a baby. I would just feel more

> comfortable

> > > to conceive a child while being of the medication completely.

> > Before

> > > the trial I was on 600 mg of Gleevec and my PCR was very

> > > stable, .01, .02, .04, then again .02, .08. I started this

trial

> > and

> > > my PCR seems to be still very stable, but I haven't reached

PCRU

> > > yet... my blood work is o.k, however my white cells are a

little

> > bit

> > > elevated around 8,000. My average WBC is around 5,000. Nobody

> seems

> > > to be concerned as it can be a side effect of the trial. My

last

> > PCR

> > > was .04, so still very stable, but still there... and almost

the

> > same

> > > as before the trial. I just pray and hope that these nasty

cells

> > that

> > > still show on my PCR will disappear... I am tolerating IFN

> very

> > > well and I am glad to be the part of this study. I hear that it

> is

> > > very promising, but I personally can't confirm anything yet...

> All

> > of

> > > the patients who are on this trial are receiving better

results.

> > > Their PCR is going down. I believe there was one person who

> > couldn't

> > > tolerate IFN, but I am not sure. I should ask more details on

> this

> > > trial and the results of the trial... so I can share it with

you

> > > guys... I will do it during my next visit. Please ask questions

> > that

> > > you would like to know the answers on. I will ask them and

email

> it

> > > to the group. Anyway, I am still PCR positive and I wish so

much

> to

> > > reach the PCRU!! I am young and I always try to get best out of

> > > everything, so why can't I get the best possible result with

the

> > > CML? I try so hard... Even though I am tolerating this combo

> of

> > > medication very well, I am very tired. I can deal with it, but

I

> > hate

> > > it... Anyway, please wish me a good luck with this... Livia

> > >

> >

>

[Guest guest]

Carol,

thank you for the info it's so hard to pick a new Dr. Is he nice

and someone you can talk to because the one i have now is very cold.

Thanks again,

Esther

- In , " tcepugh " <tcepugh@...> wrote:

>

> Esther,

>

> My husband goes to JHU and he sees Dr. Gore. Dr. Gore has recently

> told my husband that he will be a good candidate for the trial.

> Although he said that he would be put in one of two groups, the

trial

> group or a group that would be on Interferon. We are still waiting

> for the go ahead and more info.

> Carol

>

>

> > > >

> > > > Hi , I am on IFN+Sargamostim+Gleevec trial now. It is

a

> > year

> > > > long trial and if I become PCRU, they are going to take me

off

> > the

> > > > medication... completely... I am on this trial at JHU with

Dr.

> > > .

> > > > I have recently spoken to them if anybody has reached PCRU on

> > this

> > > > combo trial and the answer was yes. They have the first

patient

> > who

> > > > has been off the medication for over 4 months and I believe

> > another

> > > > two patients are coming to this point. As far as me... my PCR

> was

> > > > 0.08 before I started the trial. The reason I started is that

I

> > > > wanted to go off the medication at least for several months,

> > years

> > > > possibly and try to have a baby. I would just feel more

> > comfortable

> > > > to conceive a child while being of the medication completely.

> > > Before

> > > > the trial I was on 600 mg of Gleevec and my PCR was very

> > > > stable, .01, .02, .04, then again .02, .08. I started this

> trial

> > > and

> > > > my PCR seems to be still very stable, but I haven't reached

> PCRU

> > > > yet... my blood work is o.k, however my white cells are a

> little

> > > bit

> > > > elevated around 8,000. My average WBC is around 5,000. Nobody

> > seems

> > > > to be concerned as it can be a side effect of the trial. My

> last

> > > PCR

> > > > was .04, so still very stable, but still there... and almost

> the

> > > same

> > > > as before the trial. I just pray and hope that these nasty

> cells

> > > that

> > > > still show on my PCR will disappear... I am tolerating IFN

> > very

> > > > well and I am glad to be the part of this study. I hear that

it

> > is

> > > > very promising, but I personally can't confirm anything

yet...

> > All

> > > of

> > > > the patients who are on this trial are receiving better

> results.

> > > > Their PCR is going down. I believe there was one person who

> > > couldn't

> > > > tolerate IFN, but I am not sure. I should ask more details on

> > this

> > > > trial and the results of the trial... so I can share it with

> you

> > > > guys... I will do it during my next visit. Please ask

questions

> > > that

> > > > you would like to know the answers on. I will ask them and

> email

> > it

> > > > to the group. Anyway, I am still PCR positive and I wish so

> much

> > to

> > > > reach the PCRU!! I am young and I always try to get best out

of

> > > > everything, so why can't I get the best possible result with

> the

> > > > CML? I try so hard... Even though I am tolerating this

combo

> > of

> > > > medication very well, I am very tired. I can deal with it,

but

> I

> > > hate

> > > > it... Anyway, please wish me a good luck with this... Livia

> > > >

> > >

> >

>

[Guest guest]

Hi Esther,

Dr. also accepts patients. I am not sure if U. of Michigan is doing the

trial that I am on, but I am sure that s Hopkins at Baltimore is not the

only place wehre the IFN+Gleevec trial is performed.

I just had my blood work done and CBC looks good, but I am waiting for my PCR

results now. Please wish me a good luck, keep me in your prayers... Livia

>

> Lot's of LUCK...sounds very exciting. HMMM life without pills... I

> hope you do well and sorry that you are so tired.

>

>

> >

> > Hi , I am on IFN+Sargamostim+ Gleevec trial now. It is a

year

> > long trial and if I become PCRU, they are going to take me off

the

> > medication.. . completely.. . I am on this trial at JHU with Dr.

> .

> > I have recently spoken to them if anybody has reached PCRU on

this

> > combo trial and the answer was yes. They have the first patient

who

> > has been off the medication for over 4 months and I believe

another

> > two patients are coming to this point. As far as me... my PCR was

> > 0.08 before I started the trial. The reason I started is that I

> > wanted to go off the medication at least for several months,

years

> > possibly and try to have a baby. I would just feel more

comfortable

> > to conceive a child while being of the medication completely.

> Before

> > the trial I was on 600 mg of Gleevec and my PCR was very

> > stable, .01, .02, .04, then again .02, .08. I started this trial

> and

> > my PCR seems to be still very stable, but I haven't reached PCRU

> > yet... my blood work is o.k, however my white cells are a little

> bit

> > elevated around 8,000. My average WBC is around 5,000. Nobody

seems

> > to be concerned as it can be a side effect of the trial. My last

> PCR

> > was .04, so still very stable, but still there... and almost the

> same

> > as before the trial. I just pray and hope that these nasty cells

> that

> > still show on my PCR will disappear... I am tolerating IFN

very

> > well and I am glad to be the part of this study. I hear that it

is

> > very promising, but I personally can't confirm anything yet...

All

> of

> > the patients who are on this trial are receiving better results.

> > Their PCR is going down. I believe there was one person who

> couldn't

> > tolerate IFN, but I am not sure. I should ask more details on

this

> > trial and the results of the trial... so I can share it with you

> > guys... I will do it during my next visit. Please ask questions

> that

> > you would like to know the answers on. I will ask them and email

it

> > to the group. Anyway, I am still PCR positive and I wish so much

to

> > reach the PCRU!! I am young and I always try to get best out of

> > everything, so why can't I get the best possible result with the

> > CML? I try so hard... Even though I am tolerating this combo

of

> > medication very well, I am very tired. I can deal with it, but I

> hate

> > it... Anyway, please wish me a good luck with this... Livia

> >

>

[Guest guest]

Thank you. There is the first person in JHU who is off the medication after

completing the IFN+Gleevec trial.  He or she has been off the medication for 4

months now... so far PCRU.  A very exciting news! Livia

From: marri35 <tmtip@...>

Subject: [ ] Re: Trial

Date: Tuesday, October 21, 2008, 11:31 PM

Lot's of LUCK...sounds very exciting. HMMM life without pills... I

hope you do well and sorry that you are so tired.

>

> Hi , I am on IFN+Sargamostim+ Gleevec trial now. It is a year

> long trial and if I become PCRU, they are going to take me off the

> medication.. . completely.. . I am on this trial at JHU with Dr.

.

> I have recently spoken to them if anybody has reached PCRU on this

> combo trial and the answer was yes. They have the first patient who

> has been off the medication for over 4 months and I believe another

> two patients are coming to this point. As far as me... my PCR was

> 0.08 before I started the trial. The reason I started is that I

> wanted to go off the medication at least for several months, years

> possibly and try to have a baby. I would just feel more comfortable

> to conceive a child while being of the medication completely.

Before

> the trial I was on 600 mg of Gleevec and my PCR was very

> stable, .01, .02, .04, then again .02, .08. I started this trial

and

> my PCR seems to be still very stable, but I haven't reached PCRU

> yet... my blood work is o.k, however my white cells are a little

bit

> elevated around 8,000. My average WBC is around 5,000. Nobody seems

> to be concerned as it can be a side effect of the trial. My last

PCR

> was .04, so still very stable, but still there... and almost the

same

> as before the trial. I just pray and hope that these nasty cells

that

> still show on my PCR will disappear... I am tolerating IFN very

> well and I am glad to be the part of this study. I hear that it is

> very promising, but I personally can't confirm anything yet... All

of

> the patients who are on this trial are receiving better results.

> Their PCR is going down. I believe there was one person who

couldn't

> tolerate IFN, but I am not sure. I should ask more details on this

> trial and the results of the trial... so I can share it with you

> guys... I will do it during my next visit. Please ask questions

that

> you would like to know the answers on. I will ask them and email it

> to the group. Anyway, I am still PCR positive and I wish so much to

> reach the PCRU!! I am young and I always try to get best out of

> everything, so why can't I get the best possible result with the

> CML? I try so hard... Even though I am tolerating this combo of

> medication very well, I am very tired. I can deal with it, but I

hate

> it... Anyway, please wish me a good luck with this... Livia

>

[Guest guest]

Hi Lilia.  I will definitely keep you guys updated. I am doing very well. I am

on 0.3 cc IFN with 250 mcg Sargamostim. Lately I am developing rash. It is not

fun, but I can stand it... I can sleep, but I am scratching myself as a dog:) I

am expecting to receive my PCR test results in a week, so I am waiting now....

This is the hard part... Livia

From: llokl_777 <llokl_777@...>

Subject: [ ] Re: Trial

Date: Tuesday, October 21, 2008, 3:14 PM

Hi Livia,

I was diagnosed with CML a couple of months ago and already had some

problems with side effects from Gleevec. I would be ready to suffer

from any side effects for some while if I would know that I will have

drug free remission after words. I wish you the best results on your

trial with less possible side effects. Keep us informed about your

progress.

Lilia.

>

> Hi , I am on IFN+Sargamostim+ Gleevec trial now. It is a year

> long trial and if I become PCRU, they are going to take me off the

> medication.. . completely.. . I am on this trial at JHU with Dr.

.

> I have recently spoken to them if anybody has reached PCRU on this

> combo trial and the answer was yes. They have the first patient who

> has been off the medication for over 4 months and I believe another

> two patients are coming to this point. As far as me... my PCR was

> 0.08 before I started the trial. The reason I started is that I

> wanted to go off the medication at least for several months, years

> possibly and try to have a baby. I would just feel more comfortable

> to conceive a child while being of the medication completely.

Before

> the trial I was on 600 mg of Gleevec and my PCR was very

> stable, .01, .02, .04, then again .02, .08. I started this trial

and

> my PCR seems to be still very stable, but I haven't reached PCRU

> yet... my blood work is o.k, however my white cells are a little

bit

> elevated around 8,000. My average WBC is around 5,000. Nobody seems

> to be concerned as it can be a side effect of the trial. My last

PCR

> was .04, so still very stable, but still there... and almost the

same

> as before the trial. I just pray and hope that these nasty cells

that

> still show on my PCR will disappear... I am tolerating IFN very

> well and I am glad to be the part of this study. I hear that it is

> very promising, but I personally can't confirm anything yet... All

of

> the patients who are on this trial are receiving better results.

> Their PCR is going down. I believe there was one person who

couldn't

> tolerate IFN, but I am not sure. I should ask more details on this

> trial and the results of the trial... so I can share it with you

> guys... I will do it during my next visit. Please ask questions

that

> you would like to know the answers on. I will ask them and email it

> to the group. Anyway, I am still PCR positive and I wish so much to

> reach the PCRU!! I am young and I always try to get best out of

> everything, so why can't I get the best possible result with the

> CML? I try so hard... Even though I am tolerating this combo of

> medication very well, I am very tired. I can deal with it, but I

hate

> it... Anyway, please wish me a good luck with this... Livia

>