Re: Who is #1

[Guest guest]

Hi Lottie, I went every month for almost 2 years.  In Dec. they said come back

in Feb. that was 2 months, and in Feb they said come back in May, this will be

the first 3 month visit.  Then I will go to 6 months.  I believe Hans went to

3 months much sooner but it is up to the hospital, the pharm.  co. does not

dictate the visits.  I would think in the phase 2 part they would let up on

those restrictions and start 3 mo. visits sooner.  Who knows?  Too bad they

don't consider the patient and travel and expenses.  Ever figure out how much

you spent to stay alive?  From 2000 to June of 2004 I went to Oregon for the

Gleevec trial every 3 months , and that does not include living there 2 months,

3 different times for 3 different trials.  In July of 2004 it was to Houston ,

live there 3 months, and return every month for 10 months til I reached CCR,

then every 3 months until the middle of 2006, when Dr. Talpaz went to MI.  From

then on it got less

expensive because I can drive it, but it has been every month since Feb. of

2008 until now.  Wow! I can't begin to comprehend the cost, wish I had kept

track. I have been most fortunate that I have been able to do this for 11 years,

11 years this month as a matter of fact.  And Lottie, I wish they would put you

on 15 mg. too, Dr. Talpaz changed Len's dose, I am sure, at least once.  And I

would surely put Len at #2, I know she and Ernie do not post here, but she has

been through more @#% & (thanks Shelag) than anyone I know and is still

smiling!  Bobby

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

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 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Lottie Duthu <lotajam@...>

Subject: [ ] Who is #1

" CML " < >

Date: Sunday, February 20, 2011, 1:26 AM

 

Hi Guy,

I don't think we have to take a poll, Skip will always be #1 on the roster. No

one has lived as long or has been more positive. Bobby is #2, she has had it

longer than me. Skip has so many stories locked up in his head, I wish he would

tell us more about his experiences. It is amazing that he is still able to do

the things he does. He no longer goes anywhere but to the hospital, because he

has little to no platets and no immune system. I'm not too far from that myself

(staying inside, that is).

I will probably will be back on Ariad on Monday, I received a call that my

platelets had gone up, but they were waiting for MDACC to give the signal and I

couldn't find anyone to answer the phone. Not kidding, no one I called answered

the phone and there was no way to leave a message - strange. I have some

emergency numbers to call, but I didn't consider it an emergency. I would like

to start on 15 mg. as Bobby did in Phase I and gradually work my way up the

ladder slowly, but that is not how they do it.

In my case, Phase II always started with the highest dose. I think age and the

number of years with CML should be an exception. No one asked me! Dag nab it,

help me out with some cuss words, Shelagh! She cusses like a Russian sailor. I

hope she doesn't have a parrot. LOL My sister's MIL had a mynah bird and he

imitated the screen door all day long. Sometimes he would say, " My name is

Joe " , then he would laugh just like the owner. When the bird died, we went all

over New Orleans looking for another one, but this one wouldn't talk, a total

misfit in comparison to the other bird.

Bobby, how long do you think I will be going every month? How long was it for

you?

xoxox

Lottie