Re: Re: Need a little moral support

January 3, 2009

Hi Martha,

I second Zavie and Tracey. The only case where some of the cml drs would

advise starting at a higher dose than 400mg is when there are factors

worsening the prognostic like advanced phase, very poor sokal score,

presence of kinase mutations. If you reached 3 logs in that short a time

with 400mg, it is very unlikely you will need to change anything as long as

you can tolerate the gleevec. You should discuss it with your dr or as Zavie

suggested see one of cml specialist to have a 2nd opinion. On the PCRU issue

there is some debate on the possibility of discontinuing gleevec for

patients that have been PCRU for years, but so far it would concern at best

a very small fraction of patients. I haven't had as good a response as you

did, it took me over 2 years to get the magic 3 logs, but I stayed on 400mg

and now I am at 4 or 5 logs, positive (so no PCRU) but too low to be

measured.

Marcos.

On Fri, Jan 2, 2009 at 7:00 PM, Tracey <traceyincanada@...> wrote:

> Hi Martha,

>

> I recall Dr Druker saying in one of his recent teleconferences that

> he no longer worries about molecular responses as long as a patient

> achieves a CCR and maintains it.

>

> PCR's are a bit controversial and aren't standardized therefore

> drawing conclusions from them should be done with caution.

>

> Many of the experts have warned that PCRU is a bit of a misnomer

> because there are so many variables to take into consideration. You

> could easily be considered PCRU in one lab and yet in another lab

> barely have a 3 log reduction. This in fact has happened to many of

> us so how meaningful is PCRU then?

>

> The size of the blood sample, the quality of the sample, the time it

> takes to test the sample and the sensitivity of the tests are just

> some examples of variables that will effect the results.

>

> Having said all that, there is no data that I've seen that supports

> the goal of being PCRU, in fact, I've seen many studies that actually

> show the opposite, that there is in fact no advantage over being at a

> 3 log reduction. Here is just one example of one study I pulled up:

>

> http://tinyurl.com/9u25dl

> " Patients achieving a CCyR at 1 year had a better PFS and overall

> survival than those failing to reach CCyR, but achieving a MMR

> conferred no further advantage " .

>

> CCyR is a complete cytogenetic response so a 3 log reduction is even

> better than a CCyR.

>

> For me personally, I would never increase my dose just to get to PCRU.

>

> Tracey

>

> >

> > Happy New Year and good health to all. No more C-diff; no more

> kidney

> > stones; no more bad medication side effects!

> >

> > I wonder if any of you can suggest something for me when I go see

> the

> > hemonc on Jan 9 and have the next scheduled PCR. I was bumped up to

> > 600 mg Gleevec at the end of September, and am not liking it one

> bit.

> > The side effects that I was tolerating reasonably well on 400 mg are

> > all increased enough to make me moderately (but not severely)

> > miserable. Enough to make me cut back on what I do and how long I

> can

> > concentrate on my research (shortness of breath, some nausea almost

> > every day, eyes are puffier, more eye bleeds, more aches and muscle

> > cramps,....)

> >

> > Here's the history:

> > -Dx April 2008

> > -hydroxyurea and allopurinol for just long enough to bring those WBC

> > down into reasonable territory

> > -400 mg Gleevec starting in May 2008

> > -Blood counts all (boringly) normal since at least July

> > -PCR test in early September showed at 3-log reduction (Hooray!),

> but

> > not PCRU

> > -BMB in October " looked good " (I haven't actually seen the report

> yet).

> > -CBC in November showed no anemia; echocardiogram in December shows

> > normal heart function.

> >

> > But my hemonc is on an aggressive schedule here, and because I

> wasn't

> > PCRU in September, he upped the dosage to 600 mg based on the

> > September PCR, even before the BMB.

> >

> > I've done some literature searching, and I thought I was making good

> > progress, and wouldn't have been concerned unless there wasn't

> > continued good progress by the time of the 12-month check. I did

> find

> > a paper in the Blood journal about an Australian study that showed

> > better prospects with larger doses of Gleevec, but I didn't think

> that

> > the difference was statistically significant.

> >

> > I plan to ask for the dosage to be scaled back to the 400 mg that I

> > know I can handle. Is this a reasonable request? Is my understanding

> > about reasonable progress OK?

> >

> > Thank you all for all your encouragement!

> >

> > Martha B

> >

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

January 3, 2009

Hi Martha My first onc raised me from400 to 600 because my BCR/Abl went up a

fraction.He wanted 800 We got into a little tiff ,since I have found from my

2nd onc that was not necessary but now I

I must stay om 600 I am PCRU.Ride the bounce take 3 test before making a

decision.

________________________________

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

Sent: Friday, January 2, 2009 10:22:30 PM

Subject: Re: [ ] Re: Need a little moral support