Re: Leukemia Cure without medication

[Guest guest]

Oh, gosh have I EVER thought of it!

This has been studied, and folks who quit taking Gleevec (or other CML

drugs) often do well initially, but ultimately suffer a recurrence -- and

find they've developed an immunity to the drugs when they get back on them.

Luckily, there are other choices. I was a wreck on Gleevec. It was like

being on some kind of heavy narcotic. I asked my doc if I could go off

Gleevec he said nope -- like it or lump it. Oh, was I depressed.

Then I lost my insurance and started going to the clinic at UC San

Francisco. My new doctor was very supportive of a change and I bless him for

it. My life has definitely changed for the better! I changed to Sprycel, and

have fewer side effects but still struggle with that fatigue. So now I'm

making the jump to Tasigna, which many folks love because it doesn't seem to

induce the terrible fatigue that Gleevec or Sprycel can. Yippee!!!

Your quality of life matters. At one time we didn't have much choice, but we

do now. I hope you will ask about alternatives to Gleevec.

All the best to you -- let us know how it goes.

On Thu, Mar 11, 2010 at 3:51 PM, claudemirtavares <sito3@...> wrote:

>

>

> I have been taken gleevec since October 2007 and I am remission. I believe

> the bone marrow can reconstruct itself. I asked the doctor to see if I can

> stop taken Gleevec for awhile to see if my bone marrow is functioning normal

> again. He says I have to take Gleevec for the rest of my life. I know what

> is going to happen to my body eventually, I am going to die from all the

> toxic effects of Gleevec. I am thinking of stopping the medication for

> sometime, because the fatigue is too much for me. Has anyone of you thought

> about this, or has someone tried to stop? Your thoughts are appreciated, God

> bless you all.

>

>

>

[Guest guest]

The longer you take Gleevec the less side affects dx 12/23/04

________________________________

From: claudemirtavares <sito3@...>

Sent: Thu, March 11, 2010 5:51:11 PM

Subject: [ ] Leukemia Cure without medication

 

I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

[Guest guest]

Yes maybe that is correct but sometimes they last forever!!!! QOL is what is

important. I suffered for 9 months on Gleevec, went to Sprycell-got PE went

to Tasigna and have been a new person!!! No side effects. Not even the

tiredness.- been on it for two years and have been PCRU for two years. I

would ask my dr if I could switch to another medication if I were you.

_____

From: [mailto: ] On Behalf Of

Shipley

Sent: Thursday, March 11, 2010 5:10 PM

Subject: Re: [ ] Leukemia Cure without medication

The longer you take Gleevec the less side affects dx 12/23/04

________________________________

From: claudemirtavares <sito3hotmail (DOT) <mailto:sito3%40hotmail.com> com>

groups (DOT) <mailto:%40> com

Sent: Thu, March 11, 2010 5:51:11 PM

Subject: [ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

I lost my response being off the medication myself. I am not sure what the

answer is but it is definitely a risk.

From: claudemirtavares <sito3@...>

Subject: [ ] Leukemia Cure without medication

Date: Thursday, March 11, 2010, 3:51 PM

 

I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

[Guest guest]

Hi Claude,

I'm curious to know what evidence you've seen that would lead you to believe

that the bone marrow can reconstruct itself.

Would you stop breathing air because it's so polluted? That's the same way of

thinking as the thought that you should stop taking the Gleevec because of its

effects.

There is ample evidence of people losing their response after stopping treatment

and in doing so, there's a very real risk that the medication will no longer

work if a mutation develops during the drug break. I can't fathom why anyone

would want to take this risk.

Rather than play Russian Roulette, why don't you try another drug which you may

find easier to tolerate?

Tracey

dx Jan 2002

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

Dr. Erba (at U of M) explained it to me - this is what I heard: Gleevec

stops the bone marrow from making the bad cells, but take away the Gleevec

and it will start making bad cells again. I am starting a study (on Tuesday

actually) that will add Pegulated Interferon to the mix for 2 years. The

idea is that the interferon can reprogram the marrow to do what it is

supposed to.

I guess the point is that Gleevec alone cannot do it.

Tammy

_____

From: claudemirtavares [mailto:sito3@...]

Sent: Thursday, March 11, 2010 6:51 PM

Subject: [ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

Hi Claude,

You really have to think this out carefully.

First let me say ... a doctor who treats himself has a fool for a patient.

A patient who and get hisadvice treats himself doesn't even have a chance.

If you want to try and go off Gleevec then seek out a clinical trial that is

doing this.

If there are no trials available for you, then seek out a doctor who will go

along with your idea. There will have to be PCRs done monthly to monitor

your CML and a plan formulated on what to do if the CML starts appearing on

the tests.

What I think your problem is, is the severe fatigue side effect of Gleevec

and you are looking for a solution. Let the professionals figure out how to

resolve it. Switching to one of the other drugs hasan excellent chance of

resolving your problem.

My best advice to you is to meet with a very experienced CML doctor and try

one of newer drugs.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

Tel in FL: 561-429-5507

_____

From: [mailto: ] On Behalf Of

claudemirtavares

Sent: March-11-10 6:51 PM

Subject: [ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

hello

i am taking glivec for more than 9 years now. i became pcr negative after 1 year

of treatment with glivec. i did a one patient trial withy my dr to try and see

if i am cured. after 2 months without treatment i became pcr positive, and that

was the end of my stopping glivec trial.

you must understand that today there are many trials across the world to stop

glivec. you can try to stop ONLY if you do it in the context of very closely

monitored clinical trial. i have not heard of anyone who has died from the toxic

side effects of glivec but i know of patients whose desease advanced because

they stopped glivec.

remember that cml is a very deadly desease, and teh only thing that can hold it

from killing you is the glivec and the other new second generation drugs.

god bless you too

giora

[ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

__________ Information from ESET Smart Security, version of virus signature

database 4937 (20100311) __________

The message was checked by ESET Smart Security.

http://www.eset.com

[Guest guest]

Claude I agree with Zavie and Tammy. From my experience after being PCRU on

Gleevec for 6 years my doc reduce my dosage and in 6 month I lost 1 log

reduction and my leukemia cells start to increase. Stopping Gleevec is not a

good idea changing meds could be a good solution or trial same what Zavie

suggested. I just went to share w y my experience

T

Dxd 2/2003

400 mg Gleevec

Zero club#764

Sent from my Verizon Wireless BlackBerry

[ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

HI CLAUDE, MAYBE YOU COULD USE A COMPARISON IN DRUGS.  ASK YOUR DOCTOR TO PUT

YOU ON INTERFERON, ONCE IT WAS THE ONLY TREATMENT FOR CML.  AFTER A MONTH  ON

INTERFERON, IT COULD BE YOU WOULD WELCOME THE FATIGUE OF GLEEVEC. INTERFERON,

FOR MOST PEOPLE WAS THE TREATMENT FROM HELL!  I ONLY TOOK IT FOR 9 WEEKS AND

TOLD MY DOCTOR I WOULD RATHER DIE.  AND WHEN IT WAS TIME TO DIE, I ENTERED THE

GLEEVEC TRIAL AND NO MATTER HOW BAD THE SIDE EFFECTS WERE, THEY WERE BETTER THAN

BEING ON INTERFERON.  IF YOU CAN GIVE YOURSELF THE TIME, TRY AND GET USED TO

GLEEVEC, MOST PEOPLE  DO ADAPT TO THE SIDE EFFECTS.  BUT LISTEN TO THE GOOD

ADVICE OF THE OTHERS, DO NOT STOP ALL DRUGS.  TRY ONE OF THE OTHERS, SPRYCEL,

OR TASIGNA, AND REMEMBER, IF IT WERE NOT FOR GLEEVEC, MOST OF US WRITING TO YOU,

WOULD NOT BE HERE TO DO SO.

AS ONE OF OUR MEMBERS PUT IT, THE SIDE EFFECTS MAY BE BAD, BUT IT IS BETTER THAN

THE ALTERNATIVE, A VERY LONG DIRT NAP!!!  BOBBY

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: mtadros9@... <mtadros9@...>

Subject: Re: [ ] Leukemia Cure without medication

" CML Group " < >

Date: Friday, March 12, 2010, 8:07 AM

 

Claude I agree with Zavie and Tammy. From my experience after being PCRU

on Gleevec for 6 years my doc reduce my dosage and in 6 month I lost 1 log

reduction and my leukemia cells start to increase. Stopping Gleevec is not a

good idea changing meds could be a good solution or trial same what Zavie

suggested. I just went to share w y my experience

T

Dxd 2/2003

400 mg Gleevec

Zero club#764

Sent from my Verizon Wireless BlackBerry

[ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

Hi: I have been on Gleevec since Oct. of 2000, and to be at PCRU and still

doing good on my original dose of 400mg. a day is a miracle to me.

I believe in the old expression If It Ain't Broke Don't Fix It!!

I do go through all the side effects after all this time, but starting my 12th

year living with CML is a blessing to me.

I personally will continue to take my Gleevec as prescribed as long as its doing

its job. I would not risk stopping it to see what happens.

I also do not choose to switch to any of the other drugs unless the Gleevec were

to stop doing its job. Think it all through before you choose to stop it. Read

all the other posts to help you decide.

A.

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

All- & nbsp;

There is a lot of good info in this chain and in this group! & nbsp;I'd like to

add to Claude's original email with my own concerns... & nbsp;

While the Gleevec and other drugs are amazing and we couldn't get by without

them, I wonder what's happening on the inside. & nbsp;Liver toxcicity is a real

problem with this stuff. & nbsp;We're told this will provide us with a more

" normal " life, but I'm 26 years old and am seriously concerned about what my

health will be like 20 plus years down the road because of the meds... That's my

2 cents.

Danny

-- Sent from my Palm Prē

On Mar 12, 2010 7:07 AM, mtadros9@... & lt;mtadros9@... & gt;

wrote:

& nbsp;

Claude I agree with Zavie and Tammy. From my experience after being PCRU on

Gleevec for 6 years my doc reduce my dosage and in 6 month I lost 1 log

reduction and my leukemia cells start to increase. Stopping Gleevec is not a

good idea changing meds could be a good solution or trial same what Zavie

suggested. I just went to share w y my experience

T

Dxd 2/2003

400 mg Gleevec

Zero club#764

Sent from my Verizon Wireless BlackBerry

[ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

Danny

No one knows what their lives will be like 20 years down the road. Shoot I

could be hit by a car tomorrow, or die from something totally not related to

the meds. But if we had an alternative we would choose it. We need this

medication to stay alive. That is the bottom line. I don’t know about you

but I am tested every two months for liver problems and for every other

organ in my body. If they see any problems they would take another route. I

have had CML for going on 6 years and I have a very normal healthy life.

No one would even know that I have CML.

Everyone should know their own body and know of any changes in their system.

Be alert.

I am so so thankful for Tasigna because I live a normal life because of it.

Live for today not 20 years down the road.

Of course I am much much older then you but I plan to be here for another 20

years.

Sharon T.

_____

From: [mailto: ] On Behalf Of Danny

Dobrzenski

Sent: Friday, March 12, 2010 6:11 PM

Subject: Re: [ ] Leukemia Cure without medication

All- & nbsp;

There is a lot of good info in this chain and in this group! & nbsp;I'd like

to add to Claude's original email with my own concerns... & nbsp;

While the Gleevec and other drugs are amazing and we couldn't get by without

them, I wonder what's happening on the inside. & nbsp;Liver toxcicity is a

real problem with this stuff. & nbsp;We're told this will provide us with a

more " normal " life, but I'm 26 years old and am seriously concerned about

what my health will be like 20 plus years down the road because of the

meds... That's my 2 cents.

Danny

-- Sent from my Palm Prç

On Mar 12, 2010 7:07 AM, mtadros9comcast (DOT) <mailto:mtadros9%40comcast.net>

net & lt;mtadros9comcast (DOT) <mailto:mtadros9%40comcast.net> net & gt; wrote:

& nbsp;

Claude I agree with Zavie and Tammy. From my experience after being PCRU on

Gleevec for 6 years my doc reduce my dosage and in 6 month I lost 1 log

reduction and my leukemia cells start to increase. Stopping Gleevec is not a

good idea changing meds could be a good solution or trial same what Zavie

suggested. I just went to share w y my experience

T

Dxd 2/2003

400 mg Gleevec

Zero club#764

Sent from my Verizon Wireless BlackBerry

[ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

Hi Danny, I've been on these cml drugs for 15 years, and so far, so good, no

problems with any other parts of the body.  Can't speak for the rest, but some

of us are going to have problems anyway, with or without the cml and the

drugs.  It's a catch 22, you die if you don't take them, and may die if you

do....

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: Danny Dobrzenski <ddobrzenski@...>

Subject: Re: [ ] Leukemia Cure without medication

" " < >

Date: Friday, March 12, 2010, 9:11 PM

 

All- & nbsp;

There is a lot of good info in this chain and in this group! & nbsp;I'd like to

add to Claude's original email with my own concerns... & nbsp;

While the Gleevec and other drugs are amazing and we couldn't get by without

them, I wonder what's happening on the inside. & nbsp;Liver toxcicity is a real

problem with this stuff. & nbsp;We're told this will provide us with a more

" normal " life, but I'm 26 years old and am seriously concerned about what my

health will be like 20 plus years down the road because of the meds... That's my

2 cents.

Danny

-- Sent from my Palm Prē

On Mar 12, 2010 7:07 AM, mtadros9comcast (DOT) net & lt;mtadros9comcast (DOT) net & gt;

wrote:

& nbsp;

Claude I agree with Zavie and Tammy. From my experience after being PCRU on

Gleevec for 6 years my doc reduce my dosage and in 6 month I lost 1 log

reduction and my leukemia cells start to increase. Stopping Gleevec is not a

good idea changing meds could be a good solution or trial same what Zavie

suggested. I just went to share w y my experience

T

Dxd 2/2003

400 mg Gleevec

Zero club#764

Sent from my Verizon Wireless BlackBerry

[ ] Leukemia Cure without medication

I have been taken gleevec since October 2007 and I am remission. I believe

the bone marrow can reconstruct itself. I asked the doctor to see if I can

stop taken Gleevec for awhile to see if my bone marrow is functioning normal

again. He says I have to take Gleevec for the rest of my life. I know what

is going to happen to my body eventually, I am going to die from all the

toxic effects of Gleevec. I am thinking of stopping the medication for

sometime, because the fatigue is too much for me. Has anyone of you thought

about this, or has someone tried to stop? Your thoughts are appreciated, God

bless you all.

[Guest guest]

Dear Claude,

Don't stop the Gleevec! My doctor says that stopping and restarting Gleevec can

cause resistance to the drug--that is it will stop working for you. So, please

stay on it and be patient. Yes, there are a few side-effects to cope with but

overall, the drug is a lifesaver and a healing drug that makes your life better,

not worse.

I'll be thinking of you--

Vicki

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>