Re: New to group --- question regarding hospitalization & symptoms

[Guest guest]

I suffer the exact same things and am stil in remission. I am on Gleevec

800mg and am in the hospital frequently with dehydration due to diarrhea. I

have

all of the systoms you could possible have with Gleevec. Extreme fatigue,

bone pain constantly, low counts, nausea and vomiting, ALL of my hair on my body

has gone to white. I used to be strawberry blonde. I also have loss the

pigmentation in my face so I look ghostly white/Pale.

I take it day by day. I keep my Zofran next to me at all times. I take a

hot bath every morning to help alleviate the bone pain in my legs so I can

function in the morning.

***What my doctor and I decided to try starting last week in that once a week

to every other week, depending on how I am feeling, I go into the infusion

center and he " tanks me up " with a bag of fluids. I also get procrit injections

to help me feel alittle more alive. The fluids, we are playing by ear, just

depending on how I feel. i will tell you that when you are running low on

fluids and are dry, everythign is misearable. The pain is worse, the fatigue is

awful and you just get yourself into an emtional rut. Small things are blown

out of porportion and its so hard to focus. My memory is also bad with

Gleevec but worse when I am dehydrate. My doctor calls me the poster child of

dehydration. I have been there many times and spent many a nights admitted to

the

hospital. Hopefully our plan now will asssist me with staying out of the

hospital.

Hope that helps- Keep your chin up and keep the fluids in!

age 34

CML 5/13/05

Gleevec 800mg

3 children (11,7,5)

[Guest guest]

Isn't that interesting. I find that I do not tolerate high sugar as well,

but I have no problem with dairy, which is supposed to be bad on your stomach

after taking your daily dosage.

I am surprised that you are on such a low dose, so early in your diagnosis.

How are you responding and what is your latest PCR numbers?

Matt

In a message dated 11/11/2006 3:47:27 P.M. Eastern Standard Time,

paulorkay@... writes:

new to group diagnosed 12 23 05 great present, I'm on 400 gleevec

and from your symptoms doing good. Found that a meal of high sugar

like pancakes I have no problems generally. I'm 65 married in

central tn

[Guest guest]

new to group diagnosed 12 23 05 great present, I'm on 400 gleevec

and from your symptoms doing good. Found that a meal of high sugar

like pancakes I have no problems generally. I'm 65 married in

central tn

[Guest guest]

>> I am surprised that you are on such a low dose, so early in your

diagnosis.

> How are you responding and what is your latest PCR numbers?

>

> Matt

>*****************************************

Hi Matt,

Actually 400mg is the standard dose for newly diagnosed patients in

chronic phase. It's not considered to be a low dose and there are many

of us who have been on 400mg for our entire CML career... some are even

PCRU. I've been on 400mg since Feb 2002 and I've achived a 3.5 log

reduction.

Take care,

Tracey

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

> In a message dated 11/11/2006 3:47:27 P.M. Eastern Standard Time,

> paulorkay@... writes:

>

>

>

>

> new to group diagnosed 12 23 05 great present, I'm on 400 gleevec

> and from your symptoms doing good. Found that a meal of high sugar

> like pancakes I have no problems generally. I'm 65 married in

> central tn

>

>

>

>

>

>

>

>

>

[Guest guest]

jen it you are in remission why still on 800.Mt self i was only on 800

first 2 weeks since 400 nov went to 0 for fish test,I read where one

went 2 years on nothing then the big L came back.A lot of data not

revealed

[Guest guest]

Tracey:

Thanks for your note. Like most things with Leukemia, you can ask different

doctors and get different recommendations. I was told by MD ,

Shands Cancer Center and the LLS that 400 mg was not an appropriate initial

dosage

and that 800 mg was the proper dosage for the newly diagnosed if they can

tolerate it. In fact, when I was first prescribed 400 mg, the LLS sent the

local representative from Novartis to the oncologist that prescribed me that

amount to tell him that this is not the optimal dose for newly diagnosed CML

patients.

But then again, that is what they are telling me. What do I really know,

other than what I read on the Novartis site and what MD says is the

proper protocol.

But yes, I realize that a number of people are on 400 mg or even less. And

yes, I realize that opinions differ as to what dosage is appropriate. I

think the bottom line is that if you are responding to your dosage at the level

you are at, then it is the appropriate dose for you.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/11/2006 9:27:26 P.M. Eastern Standard Time,

traceyincanada@... writes:

Hi Matt,

Actually 400mg is the standard dose for newly diagnosed patients in

chronic phase. It's not considered to be a low dose and there are many

of us who have been on 400mg for our entire CML career... some are even

PCRU. I've been on 400mg since Feb 2002 and I've achived a 3.5 log

reduction.

Take care,

Tracey

[Guest guest]

Tracey:

The article on the web site from Novartis says that people on 800 mg achieve

a much better response than people on 400 mg. In fact, I have been told

that those who achieve a complete molecular response in the first twelve

months,

have a much better long term prognosis. That is why I opted for a higher

dose my first year and then dropped down to the lower therapeutic dose after my

first year.

Here is that article from the Novartis site. There are others I have read,

but this is the first one I came across.

_Click here: New Gleevec Data_

(http://www.pharma.us.novartis.com/newsroom/pressReleases/releaseDetail.jsp?PRID\

=1425)

So I guess I erred on it being the " standard dose " and should have probably

inserted " optimal dose " . However, the staff at MD that treat me,

feel that 800 mg is the best starting dose, if you can stand it. My local

oncologist feels that whatever level you can stand above 400 mg is find with

him.

So like I said, opinions differ.

I started out at 600 mg, however when I went to my first appointment in

Houston, I increased it to 800 mg and left it there for several months till I

just could not stand it anymore and reduced down to 700 mg. After my first

year

of treatment, I reduced down to the level of 400 mg.

But I am with you, the lowest possible dose is best.

Hope this was helpful. By the way, I did not reach molecular remission in

my first year on the higher dose, but I did reach a major molecular response.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

_mtmaynor@..._ (mailto:mtmaynor@...)

In a message dated 11/13/2006 9:13:09 A.M. Eastern Standard Time,

traceyincanada@... writes:

Hi Matt,

Can you tell us where on the Novartis site you read that 800mg is

the standard dose for chronic phase patients?

All the Novartis prescribing information that I've read, clearly

states that 400mg is the standard dose for chronic phase patients.

_http://www.pharma.http://www.phttp://www.phttp://www.pharhttp://w_

(http://www.pharma.us.novartis.com/product/pi/pdf/gleevec_tabs.pdf)

The dosing is on page 26.

My personal feeling is that if I can get a good response from 400mg,

then I can't see any reason to tax my body with a dose of 800mg,

especially knowing that I'm going to be on this drug for the rest of

my life.

Take care,

Tracey

[Guest guest]

Tracey:

Thanks you have just invalidated my whole first year of treatment. I was

led to believe that during your first year, you should tolerate the highest

dose you can. And now, that has all gone up in smoke.

To think I could have been on a lower dose this whole time, without eye

bleeds, without nausea and vomiting, without etc..

Sheesh.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/13/2006 12:32:46 P.M. Eastern Standard Time,

traceyincanada@... writes:

Hi Matt,

I've always read that it was the response that was important (a 3

log reduction) and that the dose didn't matter, as long as the

patient was able to achive the 3 log reduction.

I'm aware that 800mg has shown to give faster responses but I

believe that Dr. Druker has stated that it didn't matter how fast

you got there, as long as you got there.

I found this from Dr. Mauro which shows that even the top doctors

are not convinced of the merits of an 800mg dose.

" We have some studies that are ongoing which are exploring whether

higher doses of Gleevec are better than standard doses of Gleevec,

and the answer really isn't clear there. We've also had studies

looking at using Gleevec in combination with standard agents, older

agents used in CML such as interferon and cytarabine. And we have

some hints that they may be at least as good or possibly better. And

we clearly have some hints that higher doses of Gleevec should be

aggressively studied because it might be a way to take care of

probably a smaller number of patients who aren't likely to respond

fully. In the bigger picture for the whole population of patients

with CML, we may be treating all patients to benefit some, but

studies are ongoing to answer that question, to see what the

ultimate benefit is. And at this point we still recommend standard

400 milligram dosing of Gleevec for patients with chronic phase

disease and higher doses such as 600 or 800 milligrams for patients

who have advanced CML or who don't respond at critical time points

with chronic phase CML. "

_http://www.leukemiah_ (http://www.leukemia-/)

lymphoma.org/lymphoma.lymphoma.lymphoma.olymphoma.org/<WBlympho

To my knowledge, there aren't any other top doctors (outside of

MDACC) who recomend 800mg as a starting dose to newly diagnosed

chronic phase patients.

Take care,

Tracey

[Guest guest]

Hi Matt,

Can you tell us where on the Novartis site you read that 800mg is

the standard dose for chronic phase patients?

All the Novartis prescribing information that I've read, clearly

states that 400mg is the standard dose for chronic phase patients.

http://www.pharma.us.novartis.com/product/pi/pdf/gleevec_tabs.pdf

The dosing is on page 26.

My personal feeling is that if I can get a good response from 400mg,

then I can't see any reason to tax my body with a dose of 800mg,

especially knowing that I'm going to be on this drug for the rest of

my life.

Take care,

Tracey

> I was told by MD ,

> Shands Cancer Center and the LLS that 400 mg was not an

appropriate initial dosage

> and that 800 mg was the proper dosage for the newly diagnosed if

they can

> tolerate it. In fact, when I was first prescribed 400 mg, the

LLS sent the

> local representative from Novartis to the oncologist that

prescribed me that

> amount to tell him that this is not the optimal dose for newly

diagnosed CML

> patients.

>

> But then again, that is what they are telling me. What do I

really know,

> other than what I read on the Novartis site and what MD

says is the

> proper protocol.

>

> But yes, I realize that a number of people are on 400 mg or even

less. And

> yes, I realize that opinions differ as to what dosage is

appropriate. I

> think the bottom line is that if you are responding to your

dosage at the level

> you are at, then it is the appropriate dose for you.

>

> With warm regards,

> Matt

> ville, FL

> DX January of 2005

> Gleevec Since May 2005

> Father of 3

> mtmaynor@...

> In a message dated 11/11/2006 9:27:26 P.M. Eastern Standard Time,

> traceyincanada@... writes:

>

> Hi Matt,

>

> Actually 400mg is the standard dose for newly diagnosed patients

in

> chronic phase. It's not considered to be a low dose and there are

many

> of us who have been on 400mg for our entire CML career... some

are even

> PCRU. I've been on 400mg since Feb 2002 and I've achived a 3.5 log

> reduction.

>

> Take care,

> Tracey

>

>

>

>

>

>

>

>

>

[Guest guest]

Tracey:

There is no blame to anyone. There is just a very different opinion that

each clinic, hospital and even doctors in the same clinic seem to have. I had

it in my mind that I had a one year goal and that I would tolerate the

highest dose I could for that one year. This was based on the articles like

the

one I linked to from Novartis and from consultations with three doctors at MD

.

I realize that MD is very aggressive in their treatment protocols

and at first I was going to go to Dana Farber in Boston where a good friend of

mine is on staff in Neurosurgery, however my oncologist had close connections

the MDCC, so there I went. I even remember Lance Armstrong mentioning MDCC

(not by name) in his book, It is Not About the Bike. He said a well known

cancer clinic in Texas, known for being aggressive, said that after treatment

he would never race again. He ended up going somewhere where they thought

they could race again, with a less aggressive treatment and hence went on to

win the Tour de France a record number of times.

Another reason for being aggressive is that my first oncologist said to not

take Gleevec, but instead get a BMT. During my testing at the BMT center,

they said that those who get a BMT in the first year have drastically better

results than if you wait and do it one or more years after you are first

diagnosed. The percentages were astounding.

So maybe I just had it in my head that I wanted to go all out the first year

and fight as much as I could. Who knows whether the course I chose was

right or not. Only time will tell.

Regardless, you did not invalidate anything. I was just joking. I will say

that life is much more pleasant on 400 mg than it was on 800 mg.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/13/2006 3:15:37 P.M. Eastern Standard Time,

traceyincanada@... writes:

Matt, I have just copied and pasted what some of the experts have

said so if you feel that you have been invalidated, please blame

them and not me. I'm sorry you had such a difficult first year on

Gleevec.

Tracey

[Guest guest]

Hi Matt,

I've always read that it was the response that was important (a 3

log reduction) and that the dose didn't matter, as long as the

patient was able to achive the 3 log reduction.

I'm aware that 800mg has shown to give faster responses but I

believe that Dr. Druker has stated that it didn't matter how fast

you got there, as long as you got there.

I found this from Dr. Mauro which shows that even the top doctors

are not convinced of the merits of an 800mg dose.

" We have some studies that are ongoing which are exploring whether

higher doses of Gleevec are better than standard doses of Gleevec,

and the answer really isn't clear there. We've also had studies

looking at using Gleevec in combination with standard agents, older

agents used in CML such as interferon and cytarabine. And we have

some hints that they may be at least as good or possibly better. And

we clearly have some hints that higher doses of Gleevec should be

aggressively studied because it might be a way to take care of

probably a smaller number of patients who aren't likely to respond

fully. In the bigger picture for the whole population of patients

with CML, we may be treating all patients to benefit some, but

studies are ongoing to answer that question, to see what the

ultimate benefit is. And at this point we still recommend standard

400 milligram dosing of Gleevec for patients with chronic phase

disease and higher doses such as 600 or 800 milligrams for patients

who have advanced CML or who don't respond at critical time points

with chronic phase CML. "

http://www.leukemia-

lymphoma.org/graphics/National/Dr.Mauro2.23.06Transcription.pdf

To my knowledge, there aren't any other top doctors (outside of

MDACC) who recomend 800mg as a starting dose to newly diagnosed

chronic phase patients.

Take care,

Tracey

>

>

> Tracey:

>

> The article on the web site from Novartis says that people on 800

mg achieve

> a much better response than people on 400 mg. In fact, I have

been told

> that those who achieve a complete molecular response in the first

twelve months,

> have a much better long term prognosis. That is why I opted for

a higher

> dose my first year and then dropped down to the lower therapeutic

dose after my

> first year.

>

> Here is that article from the Novartis site. There are others I

have read,

> but this is the first one I came across.

>

> _Click here: New Gleevec Data_

>

(http://www.pharma.us.novartis.com/newsroom/pressReleases/releaseDeta

il.jsp?PRID=1425)

>

> So I guess I erred on it being the " standard dose " and should have

probably

> inserted " optimal dose " . However, the staff at MD that

treat me,

> feel that 800 mg is the best starting dose, if you can stand it.

My local

> oncologist feels that whatever level you can stand above 400 mg is

find with him.

> So like I said, opinions differ.

>

> I started out at 600 mg, however when I went to my first

appointment in

> Houston, I increased it to 800 mg and left it there for several

months till I

> just could not stand it anymore and reduced down to 700 mg. After

my first year

> of treatment, I reduced down to the level of 400 mg.

>

> But I am with you, the lowest possible dose is best.

>

> Hope this was helpful. By the way, I did not reach molecular

remission in

> my first year on the higher dose, but I did reach a major

molecular response.

>

> With warm regards,

> Matt

> ville, FL

> DX January of 2005

> Gleevec Since May 2005

> Father of 3

> _mtmaynor@..._ (mailto:mtmaynor@...)

>

> In a message dated 11/13/2006 9:13:09 A.M. Eastern Standard Time,

> traceyincanada@... writes:

>

>

>

>

> Hi Matt,

>

> Can you tell us where on the Novartis site you read that 800mg is

> the standard dose for chronic phase patients?

>

> All the Novartis prescribing information that I've read, clearly

> states that 400mg is the standard dose for chronic phase

patients.

>

_http://www.pharma.http://www.phttp://www.phttp://www.pharhttp://w_

>

(http://www.pharma.us.novartis.com/product/pi/pdf/gleevec_tabs.pdf)

> The dosing is on page 26.

>

> My personal feeling is that if I can get a good response from

400mg,

> then I can't see any reason to tax my body with a dose of 800mg,

> especially knowing that I'm going to be on this drug for the rest

of

> my life.

>

> Take care,

> Tracey

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Matt, I have just copied and pasted what some of the experts have

said so if you feel that you have been invalidated, please blame

them and not me. I'm sorry you had such a difficult first year on

Gleevec.

Tracey

-- In , mtmaynor@... wrote:

>

>

> Tracey:

>

> Thanks you have just invalidated my whole first year of

treatment. I was

> led to believe that during your first year, you should tolerate

the highest

> dose you can. And now, that has all gone up in smoke.

>

> To think I could have been on a lower dose this whole time,

without eye

> bleeds, without nausea and vomiting, without etc..

>

> Sheesh.

>

> With warm regards,

> Matt

> ville, FL

> DX January of 2005

> Gleevec Since May 2005

> Father of 3

> mtmaynor@...

>

> In a message dated 11/13/2006 12:32:46 P.M. Eastern Standard

Time,

> traceyincanada@... writes:

>

> Hi Matt,

>

> I've always read that it was the response that was important (a 3

> log reduction) and that the dose didn't matter, as long as the

> patient was able to achive the 3 log reduction.

>

> I'm aware that 800mg has shown to give faster responses but I

> believe that Dr. Druker has stated that it didn't matter how fast

> you got there, as long as you got there.

>

> I found this from Dr. Mauro which shows that even the top doctors

> are not convinced of the merits of an 800mg dose.

>

> " We have some studies that are ongoing which are exploring

whether

> higher doses of Gleevec are better than standard doses of

Gleevec,

> and the answer really isn't clear there. We've also had studies

> looking at using Gleevec in combination with standard agents,

older

> agents used in CML such as interferon and cytarabine. And we have

> some hints that they may be at least as good or possibly better.

And

> we clearly have some hints that higher doses of Gleevec should be

> aggressively studied because it might be a way to take care of

> probably a smaller number of patients who aren't likely to

respond

> fully. In the bigger picture for the whole population of patients

> with CML, we may be treating all patients to benefit some, but

> studies are ongoing to answer that question, to see what the

> ultimate benefit is. And at this point we still recommend standard

> 400 milligram dosing of Gleevec for patients with chronic phase

> disease and higher doses such as 600 or 800 milligrams for

patients

> who have advanced CML or who don't respond at critical time

points

> with chronic phase CML. "

> _http://www.leukemiah_ (http://www.leukemia-/)

> lymphoma.org/lymphoma.lymphoma.lymphoma.olymphoma.org/<WBlympho

>

> To my knowledge, there aren't any other top doctors (outside of

> MDACC) who recomend 800mg as a starting dose to newly diagnosed

> chronic phase patients.

>

> Take care,

> Tracey

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Matt and Tracey,

And for my 2 cents.

I would listen to the doctor with the most experience in prescribing

Gleevec, Dr. Druker and the opinion from OHSU. They say that 400 mg is the

starting dose of Gleevec for chronic patients. They also maintain that a

person's Quality of Life is also very important.

It is too bad that after they started you on the 800 mg they did not reduce

the dose to improve your QOL.

I'm not so sure that Novartis is the best person to listen to in this

situation. Surely they will go along with the institution that prescribes

the higher dose.

This discussion has been very useful, especially for the newbies. It will

give them something to bring back to their doctor if they are having

intollerable side effects on the higher dose.

Zavie

(in sunny CA)

>From: mtmaynor@...

>Reply-

>

>Subject: Re: [ ] New to group --- question regarding hospitalization &

>symptoms

>Date: Mon, 13 Nov 2006 15:54:24 EST

>

>

>

>Tracey:

>

>There is no blame to anyone. There is just a very different opinion that

>each clinic, hospital and even doctors in the same clinic seem to have. I

>had

>it in my mind that I had a one year goal and that I would tolerate the

>highest dose I could for that one year. This was based on the articles

>like the

>one I linked to from Novartis and from consultations with three doctors at

>MD

>.

>

>I realize that MD is very aggressive in their treatment protocols

>and at first I was going to go to Dana Farber in Boston where a good friend

>of

>mine is on staff in Neurosurgery, however my oncologist had close

>connections

> the MDCC, so there I went. I even remember Lance Armstrong mentioning

>MDCC

>(not by name) in his book, It is Not About the Bike. He said a well known

>cancer clinic in Texas, known for being aggressive, said that after

>treatment

>he would never race again. He ended up going somewhere where they thought

>they could race again, with a less aggressive treatment and hence went on

>to

>win the Tour de France a record number of times.

>

>Another reason for being aggressive is that my first oncologist said to not

>take Gleevec, but instead get a BMT. During my testing at the BMT center,

>they said that those who get a BMT in the first year have drastically

>better

>results than if you wait and do it one or more years after you are first

>diagnosed. The percentages were astounding.

>

>So maybe I just had it in my head that I wanted to go all out the first

>year

>and fight as much as I could. Who knows whether the course I chose was

>right or not. Only time will tell.

>

>Regardless, you did not invalidate anything. I was just joking. I will

>say

>that life is much more pleasant on 400 mg than it was on 800 mg.

>

>With warm regards,

>Matt

>ville, FL

>DX January of 2005

>Gleevec Since May 2005

>Father of 3

>mtmaynor@...

>

>

>

>In a message dated 11/13/2006 3:15:37 P.M. Eastern Standard Time,

>traceyincanada@... writes:

>

>

>

>

>Matt, I have just copied and pasted what some of the experts have

>said so if you feel that you have been invalidated, please blame

>them and not me. I'm sorry you had such a difficult first year on

>Gleevec.

>Tracey

>

>

>

>

>

>

>

>

>

[Guest guest]

At 01:00 PM 11/13/06 -0500, you wrote:

>Thanks you have just invalidated my whole first year of treatment. I was

>led to believe that during your first year, you should tolerate the highest

>dose you can. And now, that has all gone up in smoke.

>

>To think I could have been on a lower dose this whole time, without eye

>bleeds, without nausea and vomiting, without etc..

Hi Matt,

As Tracey said, MDACC is the institution that has pushed high dose IM the

most....and had trials for it. They did the same actually with interferon.

Other places, like OHSU/Dr. Druker give different advice. I believe that

Dr. Druker still starts newly dx on 400mg to see how they respond. He uses

600mg if they have any indication at dx of not being in early stage

chronic. He also favored low dose interferon when that was standard Rx.

There is not an absolute standard Rx for cml and even the cml specialists

differ on some things.

Dr. Druker is my doctor (since 2000) and he just told me that the National

Cancer Institute will be running a trial for newly diagnosed cml

patients.....randomly put on either:

100mg Sprycel........or 400mg Gleevec

and they will see what the results are at the end of one years's treatment.

He thinks Sprycel will have a better response but more medically

significant side effects (the main concern is pulmonary edema). He

suggested to me that one day the protocol might be to put a newly dx

patient on Srpycel for a year, to get a good remission....then switch to

Gleevec????

So, this is all evolving.

C.

[Guest guest]

> Dr. Druker is my doctor (since 2000) and he just told me that the

National

> Cancer Institute will be running a trial for newly diagnosed cml

> patients.....randomly put on either:

> 100mg Sprycel........or 400mg Gleevec

> and they will see what the results are at the end of one years's

treatment.

> He thinks Sprycel will have a better response but more medically

> significant side effects (the main concern is pulmonary edema). He

> suggested to me that one day the protocol might be to put a newly

dx

> patient on Srpycel for a year, to get a good remission....then

switch to

> Gleevec????

>

> So, this is all evolving.

>

> C.

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

Hi ,

Thanks for updating us on the latest. We're living in exciting

times forsure. I can't wait to see how this trial evolves.

Take care,

Tracey

[Guest guest]

At 03:54 PM 11/13/06 -0500, you wrote:

>Another reason for being aggressive is that my first oncologist said to not

>take Gleevec, but instead get a BMT. During my testing at the BMT center,

>they said that those who get a BMT in the first year have drastically better

>results than if you wait and do it one or more years after you are first

>diagnosed. The percentages were astounding.

Matt,

This is also a pre-Gleevec concept. When the treatment was hydrea or

interferon, the disease was not well controlled....so it was more impt to

do the BMT early before these drugs (non specific) or the CML had resulted

in some deterioration in the body.

Now, even when someone is going to have a BMT, they usually use Gleevec to

get to a good level of response first, to lessen the leukemic load prior to

the BMT. I think that later studies have shown that treatment with Gleevec

first is recommended and it is not so impt to have the BMT in the first

year. Most of CML treatment shifted once Gleevec became a treatment option.

Also, the usual advice that you will get from a BMT center is that you

should go the BMT route!! Actually this has now changed at The Hutch, the

top BMT center in the US, now says that CMLers should treat with Gleevec

first and see what kind of response that they get. Even they have come

around because of the stats with Gleevec.

Like Zavie wrote, all of these discussions are things for newbies on the

list to consider.

C.

[Guest guest]

I am new to the Group and have been reading about pros and cons of Gleevec

and/or BMT. I would just like to tell you my experience.

I have been thru Leukemia twice, my son with AML and now me with CML.

I go to MD and have the same doctor that treated my son. I knew I had

Leukemia a yr. and a half before my diagnosis, but I wasnt at then and

couldnt get anyone to listen to me. So,by the time it became clear I was on the

way out the door. Without Gleevec and the agressive treatment I received at

I would have been gone in less than a year.

I went thru seven courses of hard chemo, which almost killed me, and I never

took the

eighth. I was on Gleevec from day one and have been on it since. This drug has

kept me alive for over four years now. My Annie was the 29th of Oct. and Im

still here!!

Personally I thank God, , and Novartis every day for Gleevec.

I was taking 600 units per day in the beginning and now take 400. I dont have

a lot of nausea, but some. I dont have the energy or strength I once did, but Im

alive and thats all I care about.

Denice

Cogan <ncogan@...> wrote:

At 03:54 PM 11/13/06 -0500, you wrote:

>Another reason for being aggressive is that my first oncologist said to not

>take Gleevec, but instead get a BMT. During my testing at the BMT center,

>they said that those who get a BMT in the first year have drastically better

>results than if you wait and do it one or more years after you are first

>diagnosed. The percentages were astounding.

Matt,

This is also a pre-Gleevec concept. When the treatment was hydrea or

interferon, the disease was not well controlled....so it was more impt to

do the BMT early before these drugs (non specific) or the CML had resulted

in some deterioration in the body.

Now, even when someone is going to have a BMT, they usually use Gleevec to

get to a good level of response first, to lessen the leukemic load prior to

the BMT. I think that later studies have shown that treatment with Gleevec

first is recommended and it is not so impt to have the BMT in the first

year. Most of CML treatment shifted once Gleevec became a treatment option.

Also, the usual advice that you will get from a BMT center is that you

should go the BMT route!! Actually this has now changed at The Hutch, the

top BMT center in the US, now says that CMLers should treat with Gleevec

first and see what kind of response that they get. Even they have come

around because of the stats with Gleevec.

Like Zavie wrote, all of these discussions are things for newbies on the

list to consider.

C.

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