another view from the Major Lurker

[Guest guest]

As with parents of children these days who do not give a hoot about working

things out with their marriage, I personally view Gleevec this way. It is a

marriage. IF IT IS WORKING and you have side effects, find out from someone

what to do. Dr. Druker said to me once that there is not another person out

there in the universe like I was with the side effects. If you want to know

about them, read earlier posts in 2003 to 2004 from me or email me privately and

I will send you, if I can find it, a speech I was asked to give to ONS (Oncology

Nurse Society, I think that is what it is called)...I was asked to give this

because nurses viewed that CML patients did not need tender loving

care...Gleevec was a " cure " after all...we've have all been there and done that.

There was NOT a dry eye in the audience of about 75 hurses who swore to me that

their way of thinking totally changed after hearing my speech.

The number one drug for CML is Gleevec. Eventually that will change. This is

what I have been told consistenly...Sprycel/Tasgina and Nilotonib were developed

for those CML patients that developed mutations. The mutations, as once

thought, are caused by use BEFORE the use of Gleevec. Gleevec just causes them

toe " bare " themselves more openly.

All other drugs out there are for people who cannot get into remission. The

gold standard right now is still Gleevec. Because of this perception, the other

drugs are out there for patients to succeed in getting to remission, in whatever

stage they are deem as remission.

Yes, I know I am going to get flack for this post. If my post helps anyone, I

am truly happy and I have blessed someone out there.

On this topic, this is my last post before someone gets really upset with me.

My comments are only reflective of the great learning I have acheived since 2003

with Dr. Druker. It was Dr. Druker who called in his best of hematology

at OHSU to see me while I was out there for an appointment seeing Dr. Druker. I

was seriously the most pathetic looking patient and Gleevec was supposed to help

and not hurt you. This drug actually was working like a chemo drug on me. I

was losing my hair, I developed fragile skin, I bled very easily and bruised

extremely well. All I had to do was bump lightly into an object and I just

laughed because I knew that within one minute I would look like a purple mess.

I blew up like a balloon and finally had to take Lasix because the potassium

sparing one did not work.

MY LOCAL ONCOLOGIST believed in Dr. Druker. MOST doctors have such an ego that

they do not want to hear about any other doctor. My local oncologist after

watching me survive one torment after another, is now calling Dr. Druker asking

him what to do with some of his paitents.

Before Novartis agreed to do PK Gleevec levels, Dr. Druker with Novartis was

paying for the PK levels out of pocket for me to send my samples on dry ice to

Pittsburgh. Some of you on this group have a short memory of me. At the

beginning, I needed to keep this quiet. After about 4 months, Dr. Druker said

that I was breaking the usual pattern again and strongly urged me to tell others

about this testing. However, you had to have a doctor that had some type of

connections with wither Pittsburgh or Dr. Druker in order to have this test

performed. This is a very expensive test to run, so I have been told. Today,

it is done routinely especially if the doctor feels that their patient is not

being compliant.

Terry, thank you for trying to stick up for me. However, I can hold my own

occassionally. In my past experiences, I found out that I feel better if I can

just vent, get it off my chest and then let it go.

I know that what I have to say some people listen while others need to be right.

I do not need to be right---I am just trying to educate those around who want to

listen.

Hope this did not offend anyone. I do respect everyone's viewpoint at all

times. We are all in different shoes!!!

Hugs,

[Guest guest]

Hi ,

Please don't stop posting.

This group is blessed by having a direct line to Dr. Druker (, ,

etc) to answer some of the tough questions.

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

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Sent: April-26-09 8:45 PM

Subject: [ ] another view from the " Major Lurker "

As with parents of children these days who do not give a hoot about working

things out with their marriage, I personally view Gleevec this way. It is a

marriage. IF IT IS WORKING and you have side effects, find out from someone

what to do. Dr. Druker said to me once that there is not another person out

there in the universe like I was with the side effects. If you want to know

about them, read earlier posts in 2003 to 2004 from me or email me privately

and I will send you, if I can find it, a speech I was asked to give to ONS

(Oncology Nurse Society, I think that is what it is called)...I was asked to

give this because nurses viewed that CML patients did not need tender loving

care...Gleevec was a " cure " after all...we've have all been there and done

that. There was NOT a dry eye in the audience of about 75 hurses who swore

to me that their way of thinking totally changed after hearing my speech.

The number one drug for CML is Gleevec. Eventually that will change. This is

what I have been told consistenly...Sprycel/Tasgina and Nilotonib were

developed for those CML patients that developed mutations. The mutations, as

once thought, are caused by use BEFORE the use of Gleevec. Gleevec just

causes them toe " bare " themselves more openly.

All other drugs out there are for people who cannot get into remission. The

gold standard right now is still Gleevec. Because of this perception, the

other drugs are out there for patients to succeed in getting to remission,

in whatever stage they are deem as remission.

Yes, I know I am going to get flack for this post. If my post helps anyone,

I am truly happy and I have blessed someone out there.

On this topic, this is my last post before someone gets really upset with

me.

My comments are only reflective of the great learning I have acheived since

2003 with Dr. Druker. It was Dr. Druker who called in his best of

hematology at OHSU to see me while I was out there for an appointment seeing

Dr. Druker. I was seriously the most pathetic looking patient and Gleevec

was supposed to help and not hurt you. This drug actually was working like a

chemo drug on me. I was losing my hair, I developed fragile skin, I bled

very easily and bruised extremely well. All I had to do was bump lightly

into an object and I just laughed because I knew that within one minute I

would look like a purple mess. I blew up like a balloon and finally had to

take Lasix because the potassium sparing one did not work.

MY LOCAL ONCOLOGIST believed in Dr. Druker. MOST doctors have such an ego

that they do not want to hear about any other doctor. My local oncologist

after watching me survive one torment after another, is now calling Dr.

Druker asking him what to do with some of his paitents.

Before Novartis agreed to do PK Gleevec levels, Dr. Druker with Novartis was

paying for the PK levels out of pocket for me to send my samples on dry ice

to Pittsburgh. Some of you on this group have a short memory of me. At the

beginning, I needed to keep this quiet. After about 4 months, Dr. Druker

said that I was breaking the usual pattern again and strongly urged me to

tell others about this testing. However, you had to have a doctor that had

some type of connections with wither Pittsburgh or Dr. Druker in order to

have this test performed. This is a very expensive test to run, so I have

been told. Today, it is done routinely especially if the doctor feels that

their patient is not being compliant.

Terry, thank you for trying to stick up for me. However, I can hold my own

occassionally. In my past experiences, I found out that I feel better if I

can just vent, get it off my chest and then let it go.

I know that what I have to say some people listen while others need to be

right. I do not need to be right---I am just trying to educate those around

who want to listen.

Hope this did not offend anyone. I do respect everyone's viewpoint at all

times. We are all in different shoes!!!

Hugs,