RE: Dr. Druker

September 28, 2008

Lotti

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

But I must remember one thing...it is keeping me alive. (Tasigna) Gleevec

kept me alive also and it is a miracle drug and I wish that I could tolerate

it..

Now I am worried a fter reading all these latest posts about organs shutting

down on Tasigna. How could that happen if we are monitored so closely????

Don't you think that they would catch the problem before it got that bad???

I am depressed and upset after reading all of this.

although I am PCRU and may stay PCRU---the medication may kill me sooner

then the CML..Isn't that how it always is???????

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Lottie

Duthu

Sent: Saturday, September 27, 2008 9:50 PM

CML

Subject: [ ] Dr. Druker

A small slice of Dr. Druker's opinion on CML.

http://su2c. <http://su2c.standup2cancer.org/sutv?sid=0 & vid=2469>

standup2cancer.org/sutv?sid=0 & vid=2469

Good viewing,

Lottie

September 28, 2008

Hi Sharon,

Nothing to be confused about. Gleevec works really well for 85% of CML

patients. Let's not argue about the percentage.

The remaining 15% don't do very well on Gleevec. It is unfortunate that you

are one of these patients.

The good news is that there are many new drugs that work where Gleevec

doesn't. The trick is to find the right one for you.

Let us look to the future. With all the research activity going on in the

CML world, we can expect a cure within 15 years. If we can find a way to

keep our disease stable for this long, then we have it made.

The latest thinking from Dr. Druker is that all you need to do to keep the

CML in check long term is to maintain CCR. Don't worry about losing your

PCRU. Just concentrate on staying at CCR. Find a medication and dose that

will keep you in CCR without being toxic to your system.

The medications will save your life.

Please look at the bright side.

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

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 Sharon

& Denny

Sent: September 28, 2008 1:29 AM

Subject: RE: [ ] Dr. Druker

Lotti

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

But I must remember one thing...it is keeping me alive. (Tasigna) Gleevec

kept me alive also and it is a miracle drug and I wish that I could tolerate

it..

Now I am worried a fter reading all these latest posts about organs shutting

down on Tasigna. How could that happen if we are monitored so closely????

Don't you think that they would catch the problem before it got that bad???

I am depressed and upset after reading all of this.

although I am PCRU and may stay PCRU---the medication may kill me sooner

then the CML..Isn't that how it always is???????

Aloha Sharon

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Lottie

Duthu

Sent: Saturday, September 27, 2008 9:50 PM

CML

Subject: [ ] Dr. Druker

A small slice of Dr. Druker's opinion on CML.

http://su2c. <http://su2c.

<http://su2c.standup2cancer.org/sutv?sid=0 & vid=2469>

standup2cancer.org/sutv?sid=0 & vid=2469>

standup2cancer.org/sutv?sid=0 & vid=2469

Good viewing,

Lottie

September 28, 2008

Sharon,

Zavie, as usual, covered your question well! I am 50, just this past week. I

started Gleevec over 5 years ago. It has worked well for me. By some lab

reports I am PCRU and by others I show minimal residual disease.

Day to day I have some side effects. Yesterday I had some cramps in my legs and

periodically I get a rash on my body and arms. But that is it. This morning I

will be out playing touch football and next week I will be playing basketball.

Gleevec has let me live my normal life for over 5 years now. It is a wonder

drug for me.

Most importantly there is a wonder drug for you too! There are least 2 other

options out there now and many more to come. Stay focused (and keep your Dr

focused) on finding your winner!

Good Luck,

(if I only had a little pad..... in Hawaii .... < >)

From: Sharon & Denny <onthewtr@...>

Subject: RE: [ ] Dr. Druker

Date: Sunday, September 28, 2008, 1:29 AM

Lotti

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

But I must remember one thing...it is keeping me alive. (Tasigna) Gleevec

kept me alive also and it is a miracle drug and I wish that I could tolerate

it..

Now I am worried a fter reading all these latest posts about organs shutting

down on Tasigna. How could that happen if we are monitored so closely????

Don't you think that they would catch the problem before it got that bad???

I am depressed and upset after reading all of this.

although I am PCRU and may stay PCRU---the medication may kill me sooner

then the CML..Isn't that how it always is???????

Aloha Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lottie

Duthu

Sent: Saturday, September 27, 2008 9:50 PM

CML

Subject: [ ] Dr. Druker

A small slice of Dr. Druker's opinion on CML.

http://su2c. <http://su2c. standup2cancer. org/sutv? sid=0 & vid= 2469>

standup2cancer. org/sutv? sid=0 & vid= 2469

Good viewing,

Lottie

September 28, 2008

Dear and Zavie

Thank you for your post. I have a wonderful drug now. Tasigna and it is

working in every way. I was PCRU with Gleevec and sprycel also but the side

effects were horrendous and I had to stop. But they both worked the other

way.

I am 65years old but feel 50. I am a grandmother of 11 and another on the

way. I am very healthy in every way. I take no other medications at all.

I am active, I read a lot, I boat a lot, I jet ski a lot. I hike a lot. I am

an active 65 yr. old. And I could kick myself for worrying about what the

medication will eventually do to me because we do not know that. My Dr.

watches me closely. Blood tests every month.

I will try to stay focused!!!!

I have a wonderful caring husband and 5 wonderful children that all care

about me. I am very thankful for all that I have and I know that if it was

not for Dr. Druker I would not be here.

Yes a little pad in Hawaii would be nice!!!! I return as often as I can. I

was born on Kauai.

Thank you both

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Mr

Stickel

Sent: Sunday, September 28, 2008 4:53 AM

Subject: RE: [ ] Dr. Druker

Sharon,

Zavie, as usual, covered your question well! I am 50, just this past week.

I started Gleevec over 5 years ago. It has worked well for me. By some

lab reports I am PCRU and by others I show minimal residual disease.

Day to day I have some side effects. Yesterday I had some cramps in my legs

and periodically I get a rash on my body and arms. But that is it. This

morning I will be out playing touch football and next week I will be playing

basketball. Gleevec has let me live my normal life for over 5 years now.

It is a wonder drug for me.

Most importantly there is a wonder drug for you too! There are least 2

other options out there now and many more to come. Stay focused (and keep

your Dr focused) on finding your winner!

Good Luck,

(if I only had a little pad..... in Hawaii .... < >)

From: Sharon & Denny <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net>

net>

Subject: RE: [ ] Dr. Druker

groups (DOT) <mailto:%40> com

Date: Sunday, September 28, 2008, 1:29 AM

Lotti

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

But I must remember one thing...it is keeping me alive. (Tasigna) Gleevec

kept me alive also and it is a miracle drug and I wish that I could tolerate

it..

Now I am worried a fter reading all these latest posts about organs shutting

down on Tasigna. How could that happen if we are monitored so closely????

Don't you think that they would catch the problem before it got that bad???

I am depressed and upset after reading all of this.

although I am PCRU and may stay PCRU---the medication may kill me sooner

then the CML..Isn't that how it always is???????

Aloha Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Lottie

Duthu

Sent: Saturday, September 27, 2008 9:50 PM

CML

Subject: [ ] Dr. Druker

A small slice of Dr. Druker's opinion on CML.

http://su2c. <http://su2c. standup2cancer. org/sutv? sid=0 & vid= 2469>

standup2cancer. org/sutv? sid=0 & vid= 2469

Good viewing,

Lottie

September 28, 2008

Hi all,

Gleevec worked for me for about 4 years.

It's funny how that little cancer cell can find it's way around in you blood

stream. I didn't like Gleevec when I took it; I had every side effect you

can think of and some that weren't listed, but I took the pill with faith that

it would keep me going. I think that is what we have to do with all the meds

we have to take. My onc was telling me what could happen on Tasiga, and then

he said people dye from Tylenol. So I am taking it with faith that it will

keep me going. Hang in there Warriors; who know when the cure will show up.

Blessings,

Jeanie<3

In a message dated 9/28/2008 11:37:04 A.M. Pacific Daylight Time,

ncogan@... writes:

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

_____________________

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

September 28, 2008

In a message dated 9/28/2008 12:13:53 P.M. Pacific Daylight Time,

onthewtr@... writes:

Hi Oloha Sharon,

Don't feel alone; I know all of us have the same thoughts you have at times.

I am so tired of being sick and tired.

Just keep fighting and keep the faith.

Jeanie<3

Thank you ,

I agree with everything you have said. If you read my other posts you would

see that. I am sorry if I upset anyone by t hinking that Gleevec was not a

good drug. Hey-it saved my life too. But I suffered a lot. But yes you are

right to say that if not for Gleevec the other drugs would not be around.

Tasigna may be the drug for me and I hope I remain as well as I am. I try

to live day to day but sometimes I get down as we all do. I am sorry if I

upset anyone. I have emailed Dr. Druker and gotten ans in the past about

medications that I was on. He is a wonderful human being and I in no way

meant to belittle him or Gleevec. I remember the day I was diagnosed and my

Dr. said " good news and bad news-you have CML but there is a new medication

that will save your life " I will never forget that. Maybe I did not give

gleevec more of a chance to work. Like I said I was PCRU but my quality of

life was horrible. I do not want to go into what it was like. I have posted

before.

God Bless us all.

Thank you .

Aloha Sharon

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

September 28, 2008

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

_____________________

Hi Sharon,

Gleevec is an amazing drug.......the most successful new cancer drug ever!

90+% of newly diagnosed in chronic phase will go into a 'remission' and

tolerate the drug with acceptable side effects. Before Gleevec, cml was

mostly a fatal disease.....unless you survived a BMT. There is still a %

that Gleevec does not work well for, or they do not tolerate the

drug.....all these newer drugs would not even be here if it was not for

Gleevec (they are the sons/daughters of Gleevec!)

Gleevec kept me alive until a more potent drug came along. I was on Gleevec

(mostly 800mg) for over 5 years....I have now been on Sprycel for 3 years

and this drug brought me to CCR.....but I still would not say that Gleevec

was not a great drug (even though it was not the complete answer for me).

There are very few drugs that have the success rate that Gleevec has....and

it is still considered to be front line treatment for cml.

You can combat many of the side effects and other problems related to

taking a drug like this long term by working with a naturopath and

complementary medical care. Much of this is not in the realm of traditional

medicine or your local oncolgist. Dr. Druker is my primary onc and he has

no problem at all with me working with a naturopath and running her

suggestions by him and his pharmacist.....and the alternative care has been

beneficial.

Some people do struggle more than others to find the best treatment for

themselves....we have 2 such cml warriors on this list.....Bobbie and

Lottie....but their fighting spirit will keep them with us. The goal (per

Rockefeller, a fellow cmler) is to die from something other than cml!!

C.

September 28, 2008