Off Gleevec

[Guest guest]

Hi Susie,

Glad you are feeling better taking this break and also glad to hear

that your doctor knows what you are doing. While I would not

advocate this for anyone, I take scheduled breaks from IM due to

severe side effects. I am being closely monitored. However, I have

been PCRU for quite a long time now. Actually, I was even PCRU on

IFN at a very low dose prior to the availability of IM. So, I know

that I am very sensitive to treatment.

The good news is that it will take a while for your side effects to

return and additionally, you may even find that some of them never

return, or if they do they will be greatly diminished.

After being at ASH and hearing all the positive news, my hope is

that in the not too distant future information will be available

that will help us all live better while on this drug therapy.

Please do not hesitate to write me if you would like additional

informaiton.

Cheers,

Cheryl-Anne

>

> Hi guys, i posted three weeks ago that i was going off Gleevec to

give

> my body some time to recover from my side effects. I feel

absolutely

> wonderful. I'm walking again in the mornings, i can even run. no

more

> throwing up, no joint pain, im cleaning house...walls, ovens and

even

> on top of my ceiling fans. I wake up and i jump out of bed and go

for

> my walk first thing. I almost can forget that ive got cml. Lifes

great,

> the sad thing is i know its gonna come to a end. The doctor has

given

> me till the end of the month before i have to go on them

again...im

> gonna try another month..maybe. Im gonna see what my results are

like.

> But just wanted to let you know that all is well and going strong.

Ive

> had two bruises come up so im just keeping a eye on them ...

thanks for

> everyones support through this time.. ill keep in touch..

>

> susie dx nov 02

> at present off Gleevec due to side effects.

>

[Guest guest]

How many cml'ers out there take IM breaks? sanctioned by your doctor

or not? Lately I have been experiencing lots of " typical " side

effects - diareaha (sp), bloating, gas, blurred vision, itchy rash.

I have been on IM since 3/02 and PCR undectable since 6/02. Never

had these side effects before, or at least all of them at the same

time, and for more than 2 months.

How long is the typical IM break?

> >

> > Hi guys, i posted three weeks ago that i was going off Gleevec

to

> give

> > my body some time to recover from my side effects. I feel

> absolutely

> > wonderful. I'm walking again in the mornings, i can even run. no

> more

> > throwing up, no joint pain, im cleaning house...walls, ovens and

> even

> > on top of my ceiling fans. I wake up and i jump out of bed and

go

> for

> > my walk first thing. I almost can forget that ive got cml. Lifes

> great,

> > the sad thing is i know its gonna come to a end. The doctor has

> given

> > me till the end of the month before i have to go on them

> again...im

> > gonna try another month..maybe. Im gonna see what my results are

> like.

> > But just wanted to let you know that all is well and going

strong.

> Ive

> > had two bruises come up so im just keeping a eye on them ...

> thanks for

> > everyones support through this time.. ill keep in touch..

> >

> > susie dx nov 02

> > at present off Gleevec due to side effects.

> >

>

[Guest guest]

Hi " Dantzigr " ,

I just wanted to caution you that there are no doctors out there who

are of the opinion that it is safe to take Gleevec breaks yet.

Those who do take breaks, do so on their own and admittedly take a

risk when they do.

There have been several members who have taken breaks and relapsed

soon after so the risk is very real. Some of these people were able

to regain their response, while others were not.

While I understand that the side effects can become too much for

some people to bare, thereby necessitating the break, I really want

you to understand the risk, so that you can make an informed

decision whether or not this is something you want to do.

Take care,

Tracey

[Guest guest]

I had a Gleevec break not of my choosing because of an interruption in my

medical

coverage. By the time I start getting it again, I will have been off for a

month.

I do feel a LOT better -- so much more energetic! -- but it's nerve-wracking. My

doctor echoes what you said, Tracey, that no one has successfully gone off

Gleevec for very long. My new mail-order pharmacy has promised to deliver

tomorrow, although they've been stringing me out for weeks. Here's hoping.

Tracey wrote:

> Hi " Dantzigr " ,

>

> I just wanted to caution you that there are no doctors out there who

> are of the opinion that it is safe to take Gleevec breaks yet.

> Those who do take breaks, do so on their own and admittedly take a

> risk when they do.

>

> There have been several members who have taken breaks and relapsed

> soon after so the risk is very real. Some of these people were able

> to regain their response, while others were not.

>

> While I understand that the side effects can become too much for

> some people to bare, thereby necessitating the break, I really want

> you to understand the risk, so that you can make an informed

> decision whether or not this is something you want to do.

>

> Take care,

> Tracey

>

>

>

>

[Guest guest]

Hello Dantziger,

How many CMLers take breaks, well actually there are a few of us who

do. That is not to say that it is safe. Let's also be clear about

what I am saying when I say I take breaks. When I say I am taking

breaks I do not mean that I intend to stay off of Gleevec

indefinetely. When I take a break, it is exactly that - a break, and

I go back on Gleevec after a few weeks. But I only do that because

of side effects such as low hgb, intranasal ulcers etc. Some of the

side effects you are mentioning (while I do not mean to diminish them

at all) are managed with adjunctive therapy, such as immodium for the

bloating and gas, and there is something available for the itching

and other stuff you mention. I wouldn't say that those side effects

are worthy of taking the risk involved with breaks.

Tracey's post was referring to patients who stay off of Gleevec for a

longer length of time. In particular I think she was thinking about

Gangloff who posts here from time to time. She went off of

IM (Gleevec) after 3 months and relapsed. In most cases I would

think that anyone who goes off of IM for more than a month, might be

risking a relapse. However, there was some data at ASH that showed

that a few patients haven't relapsed after 30 months of stopping IM.

The doctor we spoke to ( R. and myself) said he had quite a

number of patients he will be reporting about in the near future.

So, it isn't a good idea to take breaks, if they can be avoided, but

if you do take breaks, make sure you are monitored.

Hopefully in the not too distant future we will hear about breaks, or

even switches in medications to allow us to recover from one set of

side effects versus another. It may be just what is needed to

encourage us all to be more adherent while science and medicine works

hard to find a cure.

Just my two cents,

Cheers,

Cheryl-Anne

> > >

> > > Hi guys, i posted three weeks ago that i was going off Gleevec

> to

> > give

> > > my body some time to recover from my side effects. I feel

> > absolutely

> > > wonderful. I'm walking again in the mornings, i can even run.

no

> > more

> > > throwing up, no joint pain, im cleaning house...walls, ovens

and

> > even

> > > on top of my ceiling fans. I wake up and i jump out of bed and

> go

> > for

> > > my walk first thing. I almost can forget that ive got cml.

Lifes

> > great,

> > > the sad thing is i know its gonna come to a end. The doctor has

> > given

> > > me till the end of the month before i have to go on them

> > again...im

> > > gonna try another month..maybe. Im gonna see what my results

are

> > like.

> > > But just wanted to let you know that all is well and going

> strong.

> > Ive

> > > had two bruises come up so im just keeping a eye on them ...

> > thanks for

> > > everyones support through this time.. ill keep in touch..

> > >

> > > susie dx nov 02

> > > at present off Gleevec due to side effects.

> > >

> >

>

[Guest guest]

Hi just a quick update on me being off gleevec. I spoke to Tim on

Thursday and he said my results are holding but he has said he wants

me on to still have regular blood test and wants me back on Gleevec in

a week as he thinks im to content..its like he could see the smile on

the otherside of the phone and told me off straight away..hehe.

so I said yes but since then ive decided to start on the 1st Feb as

then its easier to track. He did say i can go two months on and one

month off but personally im gonna try one month on and one month off.

keep you posted. Thanks heaps for your prayers and big thankyou to

Zavie for your support at this time.

Susie Dx Nov 2002

[Guest guest]

Thanks Lottie. Yes I do not recommend just going off any medication unless you

are being monitered by specialist that prescribed the medication. In my case I

am being monitered by my regular ONC and he is verifing the results with

MD. At one time the main consultant at MD is now Head of ONC at

University of Michigan. I feel blessed to have that type of quality specialists

consulting on my particular case.

. H.

>

> , I am happy that you are doing so well and enjoying your QOL.

> I know others are entertaining the thought of doing likewise, but I think

> you would advise them to think about it and talk to their doctors before

> embarking upon something without giving it a lot of forethought. I know

> you have done your homework and doing it with your doctor's blessing.

> I hope it is a lasting thing and as my local oncologist told me that I might

> want to consider it for a better QOL. I have not reached that point where

> I would be ready to do that, as I don't think my situation required it, but

> I would certainly exercise my options if I thought it would be better than

> what I am doing now, participating in a new trial.

> Wish you luck, old buddy, keep us informed and enjoy your newfound

> freedom.

> Carpe Diem,

> Lottie Duthu

>

>