Re: PCR result

February 18, 2008

Congratulations !! That's very good news.

I'm not sure why your doctor wants you to increase your dose though.

You're responding very well so I'm baffled as to his reasoning. If

you weren't responding then of course I could see the need to

increase but if you're responding the way you should, what's the

point of increasing side effects and for what gain?

For me personally, there's no way I would increase my dose unless

there was clear evidence that I needed to (and even then, I think I'd

try a new drug before I'd increase my dose of Gleevec). I have never

seen anything in any medical journals that has supported the idea of

increasing doses just for the heck of it, especially if the patient

is hitting the desired targets of response. On the contrary, I've

seen lots of reports of patients having to decrease their dose

because of side effects that become unmanageable.

Tracey

>

> Hi everyone,

>

> Well after being dx in July last year and commencing Glivec at the

end of

> September with a few short breaks in between due to side effects, I

got the

> result of my first Q- PCR.

>

> On diagnosis: 6,000% and after 3 months of Glivec is now down to

13.01%

> which is just over a 2 log reduction, needless to say my haem/t and

I are

> both very happy. All my blood work is perfect...his words " good

enough to

> get into NASA " LOL!

>

> In Australia for some reason the specialists tend to be more

aggressive and

> want their pts on 600mg + and he is keen for me to go to this level

> next.....I'll wait and see as I am still getting migraines roughly

once a

> month, which we feel may be hormone linked as I used to get these

when I was

> a teenager and Glivec as we know certainly seems to upset us

ladies! Hip hip

> horray I have had a hysterectomy.

>

> Regards,

>

> Australia

>

February 18, 2008

I second Tracey. You have a a very good response with 400mg and

there's nothing published that calls for increasing the dose. The next

time marker will be to be at -3 log at 18 months (you are at 2.6). It

looks pretty good. With the level of remission you already have at 3

months the latest study (IRIS 6 years update) shows you odds of

relapsing in the next 6 years are pretty much nil. The amount of drug

that gets into the blood, and then into the cml cells, varies a lot

from one patient to another, so 400mg is too much for some people, not

enough for some, good for the majority.

Marcos.

On Feb 18, 2008 10:17 AM, Tracey <traceyincanada@...> wrote:

>

> Congratulations !! That's very good news.

>

> I'm not sure why your doctor wants you to increase your dose though.

> You're responding very well so I'm baffled as to his reasoning. If

> you weren't responding then of course I could see the need to

> increase but if you're responding the way you should, what's the

> point of increasing side effects and for what gain?

>

> For me personally, there's no way I would increase my dose unless

> there was clear evidence that I needed to (and even then, I think I'd

> try a new drug before I'd increase my dose of Gleevec). I have never

> seen anything in any medical journals that has supported the idea of

> increasing doses just for the heck of it, especially if the patient

> is hitting the desired targets of response. On the contrary, I've

> seen lots of reports of patients having to decrease their dose

> because of side effects that become unmanageable.

>

> Tracey

>

> >

> > Hi everyone,

> >

> > Well after being dx in July last year and commencing Glivec at the

> end of

> > September with a few short breaks in between due to side effects, I

> got the

> > result of my first Q- PCR.

> >

> > On diagnosis: 6,000% and after 3 months of Glivec is now down to

> 13.01%

> > which is just over a 2 log reduction, needless to say my haem/t and

> I are

> > both very happy. All my blood work is perfect...his words " good

> enough to

> > get into NASA " LOL!

> >

> > In Australia for some reason the specialists tend to be more

> aggressive and

> > want their pts on 600mg + and he is keen for me to go to this level

> > next.....I'll wait and see as I am still getting migraines roughly

> once a

> > month, which we feel may be hormone linked as I used to get these

> when I was

> > a teenager and Glivec as we know certainly seems to upset us

> ladies! Hip hip

> > horray I have had a hysterectomy.

> >

> > Regards,

> >

> > Australia

> >

February 19, 2008

O!!! YIPPEEE!!!

Number 1149 in the Zero Club

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Malseed

Sent: February 18, 2008 3:31 AM

Subject: [ ] PCR result

Hi everyone,

Well after being dx in July last year and commencing Glivec at the end of

September with a few short breaks in between due to side effects, I got the

result of my first Q- PCR.

On diagnosis: 6,000% and after 3 months of Glivec is now down to 13.01%

which is just over a 2 log reduction, needless to say my haem/t and I are

both very happy. All my blood work is perfect...his words " good enough to

get into NASA " LOL!

In Australia for some reason the specialists tend to be more aggressive and

want their pts on 600mg + and he is keen for me to go to this level

next.....I'll wait and see as I am still getting migraines roughly once a

month, which we feel may be hormone linked as I used to get these when I was

a teenager and Glivec as we know certainly seems to upset us ladies! Hip hip

horray I have had a hysterectomy.

Regards,

Australia

February 19, 2008

Hi Marcos and Tracey,

Thank you for your kind words and words of wisdom I like you will question

further if I am to up my dose rate - I think the main reason is that by not

increasing the dose, it may be possible to get mutations down the track? As

I said the Australian way seems to be to keep upping the dose to 800mg. I'm

positive I will never cope with this.

As always, once you get home you have more questions to ask and this group

is so helpful. My haem/t also brought up that as I am doing so well and so

young still at 50 <huge grin, I love that man> that I should also give

thought to going down the donor track....now that is something I am not at

all keen about and very risky, while we have these excellent drugs coming

along.

To top my good week off, my daughter had her 2nd baby a little boy, so it

has been lovely babysitting my nearly 2 year old grand daughter and visiting

mum and bub in hospital.

Regards,

_____

February 19, 2008

> I think the main reason is that by not

> increasing the dose, it may be possible to get mutations down the

track?

*******************************************

Hi ,

I've never heard or seen anything in the medical journals to suggest

this. It's true that some people who have been on very low dose

Gleevec have developed resistance but these doses were all below

300mg. 400mg is the standard dose that MANY of us (if not most of

us) have been on for years with no incidence of mutations.

Some doctors believe that the people who have mutations, had them

prior to treatment so the treatment has nothing to do with it. Most

mutations show up fairly early in treatment so this theory is not

hard to believe.

The other thing that can sometimes lead to resistance or mutations is

when patients skip days of their medication regularly or have to take

frequent breaks from treatment due to side effects.

In my view, there's actually more arguments for staying on the

standard dose than the higher dose where the side effects could

become a problem causing the patient to interrupt their treatment.

From my own personal observations with patients over the years, I've

seen far more patients on the higher doses with mutations than on the

standard 400mg dose.

Tracey

February 20, 2008

Excellent point Marcos. I can't help but question the motives of a

doctor who is going to suggest a treatment that has a less than 70%

survival rate (BMT) over a treatment that has a better than 90%

survival rate after 6 years (Gleevec).

ly, I think it's actually quite ludicrous to suggest a BMT to

someone who is responding so well to drug therapy. I was only 31 when

I was diagnosed and even at that age, I felt I was too old to go

through a BMT. After watching several of our list mates die from

BMT's during that first year (who were my age or younger), it just

confirmed to me that I had made the right decision. My doctor at the

time didn't like that I refused to have a transplant and as a result,

I had to change doctors.

Tracey

> >

> > Hi Marcos and Tracey,

> >

> > Thank you for your kind words and words of wisdom I like you will

question

> > further if I am to up my dose rate - I think the main reason is

that by not

> > increasing the dose, it may be possible to get mutations down the

track? As

> > I said the Australian way seems to be to keep upping the dose to

800mg. I'm

> > positive I will never cope with this.

> >

> > As always, once you get home you have more questions to ask and

this group

> > is so helpful. My haem/t also brought up that as I am doing so

well and so

> > young still at 50 <huge grin, I love that man> that I should also

give

> > thought to going down the donor track....now that is something I

am not at

> > all keen about and very risky, while we have these excellent

drugs coming

> > along.

> >

> > To top my good week off, my daughter had her 2nd baby a little

boy, so it

> > has been lovely babysitting my nearly 2 year old grand daughter

and visiting

> > mum and bub in hospital.

> >

> > Regards,

> >

> > _____

> >

July 11, 2008

Marcos

Another Kaiser member. Where do you live?

I live in Northern Calif and I am very happy with Kaiser and how t hey have

treated me.

Sharon T

_____

From: [mailto: ] On Behalf Of Marcos

Perreau Guimaraes

Sent: Thursday, July 10, 2008 6:53 PM

Subject: [ ] PCR result

Hi Everybody,

I got my latest PCR result. Last time I said I was PCRU, actually

taking a closer look with the dr to the 4 month old test report (and

at the definition of PCRU) it was positive but too low to measure

(signal fall below the linear model of the assay, for the exact

phrasing), what is I am guessing about a 5 log reduction with

Stanford's lab precision. That's ok, still a lot better than a year

ago. Same thing today with the new result, too low to give a number.

On another subject, I scrapped myself on the shin, climbing a week ago

and the wound was looking nasty (after I went to the swimming pool)

and I had a bit of a fever yesterday (100F), so I called Kaiser and

got an appointment right away. It's not too bad, but still a 100F

fever. I am on antibiotic for 10 days. No swimming for a week, but I

can climb if I feel like it. I am still hoping to dive Saturday (I

have a dry suit), I ll see if the fever goes away by tomorrow.

Cheers,

Marcos.

July 11, 2008

I hate to be a mother but please don't mess around with the fever. Do not dive

please until your temp returns to normal. Fever is one of our best indicators

that we are in trouble. 10 days my friend- stay on dry land please the oceans

are ancient...they will still be there in 10 days.

--- On Thu, 7/10/08, Marcos Perreau Guimaraes <montereyunderwater@...>

wrote:

From: Marcos Perreau Guimaraes <montereyunderwater@...>

Subject: [ ] PCR result

" " < >

Date: Thursday, July 10, 2008, 6:52 PM