RE: Need a little moral support

[Guest guest]

Hi Martha:  Happy New Year to you too.  I think your questions are certainly

legitimate, and I would talk to the doctor.  I can only tell you what I have

experienced on my Gleevec 400MG which I have been on since Oct. of 2000.  I did

not reach a PCRU for 9 months, but my counts were all good and I was seeing a

physician in NY, as I was in the clinical trial at that time.  I still get the

puffy eyes, nausea, fatigue, foot spasms, etc.  You could ask to be put back on

the 400mg. for a few months to see if you get to your remission.  This is just

my opinion, but I do agree with you.  I hope everything gets adjusted for you.

Suzzie

From: meteomartha <meteomartha@...>

Subject: [ ] Need a little moral support

Date: Friday, January 2, 2009, 6:21 PM

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

[Guest guest]

Y A H O O O !!! Y I P P E E E !!!

Number 1237 in the Zero Club

Zavie

Hi Martha,

My suggestion to you would be to find another doctor . Preferably someone

who follows the treatment procedures of the top CML specialists.

You have had an outstanding response to 400 mg of Gleevec and I do not know

of one CML expert that would even hint at increasing your dose. Achieving a

3 log reduction (MMR) guarantees that you will never relapse with your CML.

Getting to PCRU (CMR) does nothing to improve your outlook.

What is your doctor's name? I will check the literature to see if he has

published anything that contradicts messers Druker, Talpaz, Goldman,

Kantarjian, Cotez, Hochhaus, etc, etc.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

meteomartha

Sent: January 2, 2009 6:22 PM

Subject: [ ] Need a little moral support

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

[Guest guest]

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

>

[Guest guest]

Hi Martha

I am an Aussie CMLer on 600mg

PCRU and continue to do so

In my experience I have the same negative side effects when I have been on 400mg

as on 600mg

mostly skin problems - bleeding problems

The worst side effects that I had - which may surprise all was when I was on

200mg -

- just terrible - vomiting - whole body sickness - hives all over - bone aches -

all at same time

- would rather be on the higher dose than the lower dose -

It was very early days and scientific reasons obvioulsy why this happended but

200mg never again.

- Must of scared my mind - medicos just laugh, more a smirk really.

then went on 400mg and all other side effects went away and then slowly the main

side

effects appeared - which come and go but can be managed. The best management

that I did was change my diet - to exclude dairy - stopped all the vomiting and

queeziness -

more solid foods and going on a salt reduced eating plan named salt skip program

www.saltmatters.org This eleviated the issue of having diuretics and another

drug to take.

- I started on 100mg for 2 weeks - then 200mg for 2 weeks - then 400mg for a

month

- then 600mg current dose. Went off glivec when I was in hospital in 2008 for

14 days

on return to glivec commenced again on 400mg for 2 weeks before going up to

600mg

current dose again.

You haven't been on glivec a year as yet - May 2009 so still early days -

my main side effects did not disappear until perhaps the 18 month mark and still

have side

effects so I still think you are in the early days of glivec still doing its

main combating cycle.

The positive side effect is that I am PCRU on 600mg and continue to be as well

as I am able

Speak to your medical team again on the side effect issues - they maybe able to

support you

in other ways.

Sue