RE: Zero Club and then some!

[Guest guest]

Hi everyone,

Most of you probably don't even know me for there are many many newbies now!!!

I haven't posted much lately but I do read ALL the posts and I honestly have to

put my " opinion and two cents in " , bear in mind it is only " my opinion " so

please no one take offence.

Yes Zavie started the Zero club which was in effect when I was diagnosed in

March 2003...can't believe it has been 4 years....I even got a number, but can't

remember it...lol...part of the gleevec side effects! I have to thank Zavie and

Cheryl, for when I was diagnosed I did go through every side effect you can

think of and bad times as well, with questions of " will i see my children

graduate, will i see them get married, the typical questions i guess when we get

sick and don't know what tomorrow brings " , and the both helping me along. I

made friends and even met two who passed through where I live " Cayman Islands "

on a cruise and we keep in touch!!! I noticed though when we post sometimes

things are taken the wrong way and then things get said and then the back and

forth arguments start....we are all fighting for our lives and each and everyone

of us take the disease in a different way. Some of us take it better then

others, some of us have worse side effects then

others, some not at all. I want to think I am in remission but I know all the

Gleevec is doing is " controlling " the disease, but if Gleevec is helping a

person and your white cells are holding at a normal level and all your blood

counts are good, why would you want to get a BMT? Look into it very deeply

before you consider it, do all your research, some do well, some don't. Again

this is my opinion and i know that there has been discussions on this so please

don't take it the wrong way. If you have no choice after trying all

alternatives (trials, medications, etc), then you have exactly that " no choice " .

As far as our appearance, believe me I am not a vain person, but yes we do like

to look nice and there is nothing wrong wtih feeling that way. I live in

Cayman, out in the sun all the time and i was told i wouldn't tan again.....well

i proved them wrong...i did tan again, i use sunblock and i am very careful with

the sun, but i do have colouring back, but again not

everyone will!!! I think alot of having CML is accepting it and going foward.

I have learned to live with being tired at times, I use to be on procrit - 40T

every 2 weeks, I haven't had a shot now for 6 mths, my Reds and Hemoglobins seem

to be holding up. Think positive and I know it is hard, but it does help. I

had the rash, boy did i have the rash, bad real bad that i think if my doctor

seen it she would have taken me off of gleevec but i was afraid to tell her

because i didn't want to go off of gleevec i was afraid that if i did i wouldn't

be able to get back on..stupid huh??? i was lucky the rash went away though.

Lets see, I had the rash, i had swallowing problems, diareeaha, water retention,

aches that i couldn't even move at times, but you know it did get better, my

hair (that was probably the worse) started falling out, which it wasn't suppose

to, i cut it real short, (it was down to my waist), vain yes i guess i was, but

now it is getting longer again and it is

actually curly, i never had a curl in my life!!! I was pale after a few

months of being on gleevec for fear of being in the sun and thought i looked

awful, and people would say well be glad u are alive!! I was and am, but again

there is nothing wrong with wanting to look nice!!!!..... I go to MD in

Houston Texas, put on the trial of 800mg of gleevec and am doing well.

We have to help each other through this and try to understand what each of us

is going through, it may not seem important to one person, but important to

another. And it would be great to see Zavie giving out numbers again!!!!! We

have to watch how we say things becuase it is an emotional rollar coaster for

all of us!!!!

Sorry to ramble, but it is very unfortunate that i don't see the people i use

to see on the posts and probably pretty close to when this board had started

because of bickering and not agreeing with each other. We all have a right to

our opinion without us getting upset with each other!!!!

Take care and good luck to all!!!!!!

Warm wishes (especially to those who are under all this snow)

Penny (from the Cayman Islands)

Zavie miller <zmiller@...> wrote:

Hi Sheila,

Let me first explain when I started the Zero Club and why.

Back in 2000 after I had failed in Interferon I was looking for something

else for my CML. A BMT was out of the question. The trials for Gleevec

(STI571) were showing excellent results. There were no trials in Canada, so

my quest (and that of many CML patients) was to get into a clinical trial

for Gleevec. Reading the lists and learning how many people were achieving

CCR I was very hopeful. I knew in my heart that if I could get Gleevec, I

would be fine. I was lucky to get a spot in the 113 trial at OHSU with Dr.

Druker and Dr. Mauro. I started taking Gleevec on March 27, 2001.

Starting on that day I began counting the number of patients that achieved

0/20 via a BMB. For myself it was the hope that I would reach that level of

remission that kept me going. In September 2001 I achieved 0/20 and became

number 102 in the Zero Club.

The Zero Club is a club of HOPE. It is especially helpful for the newbies

and for many of the turtles out there. My favorite turtle is Cogan.

Back then, I reserved number 300 for . She is still not there, but is

coming closer and closer to gaining entry in the Club. I also reserved

number 1000 for her. She can have any number that she wishes.

Now, we all know that being in CCR or PCRU doesn't free you from CML. In my

mind, what does it matter if you reach Zero via a BMB or the most sensitive

PCR test that is currently available ... you will still relapse if you don't

take medication for your CML. Sure there have been cases where the CML

hasn't returned after stopping medication, but these are pretty rare events.

Now to the FISH test. Because of the nature of the test, it always

overestimates the number of CML cells. Debending on the lab that your FISH

test is done at, this overestimate will range from 3 to 10%. Without knowing

the value for each of the labs, I arbitrarily set that number to 5%. If your

FISH test comes back with a value of 5% of less, you gain entry into the

Zero Club.

I realize that this is an overkill explanation, but it needs to be done

every once in a while.

And now for everyone who has achieved Zero and hasn't been enrolled into the

Zero Club, I urge you to post your story on this list and you will get the

next number in sequence.

For everyone who has achieved Zero, and hasn't sent a personal thank you

message to Dr. Druker via the appreciation album on Jerry's site, I urge you

to write one. To get there:

go to www.newcmldrug.com

click on THANK YOU in the left hand column

then click on " view the Appreciation Album "

then click on " view/sign the guest book "

Last night I read all the personal messages thanking Dr. Druker. What a

humbling and uplifting experience.

Zavie

[ ] Zero Club

Hello Zavie! I dopn't post too often but have in the past and have e-mailed

you directly. I was just curious how low you FISH has to be to get in the

zero club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic

and started 400mgs of gleevec. I have the problem of nutropenia and my

local hemo/onc started playing with my dose and by Christmas I was on 400

mgs every other day. By March my cells started rising they were at 28% and

Mayo clinic ordered another bmb. I then started taking 400 mgs every day

and repeated the FISH to show an increase in May to 68% so I stared taking

800 mgs (ordered by my Mayo doc) and have tolerated it very well, other than

the netropenia so I've had a few nulasta shots. Last FISH I had 2 weeks ago

showed 3.8% and I am due to have another draw Oct. 4. I'm just glad things

are going in the right direction again. In Nov. of last year my FISH showed

3.4% but that's when my local doc started messing with the dose.

THANKS! Sheila

dx 8/3/05

Zavie miller wrote:

Chat Reminder - Tuesday 9:00 PM

I'm back.

[Guest guest]

O!!! YIPPEEE!!!

Number 552 in the Zero Club

Zavie

Yes Zavie started the Zero club which was in effect when I was diagnosed

in March 2003...can't believe it has been 4 years....I even got a number,

but can't remember it...lol...part of the gleevec side effects!