PCRU

[Guest guest]

Dear Esther,

I am one of those who has seen more than one doctor and I have never regretted

it; I did myself a favor. Having a bad doctor is like driving an old clunker;

now is a good time to junk it. Good for you in getting more starch in your

backbone and did something positive for yourself. Your post brings to mind that

not all doctors pass the sniff test.

I am also one of those who have never reached PCRU in 14 years, so Yipee to you.

I don't know how many others are in my shoes, as we have over 1,000 members, yet

they have not all chosen to reveal or share with us how they are doing. I am

sure there are other members who have never received their numbers from Zavie,

but if I was eligible, I would send my results to him via overnight UPS. LOL.

Kudos to you Esther for hanging in there and believing in yourself.

Hands & hearts,

Lottie Duthu

[Guest guest]

Right on, Lottie,.  My thoughts on all those numbers everyone is trying to

achieve, is, if you feel good, and can live a half way decent life, it is much

better than the alternative.  In my 14 yrs of cml I never thought I would ever

hit a low number, like .017. I think if you can hit on a drug that gives you

pretty good life style,  don't sweat the numbers, enjoy your life.  After having

been through the trauma of Interferon, wow! who wants to go there again?. and

after all the side effects of Gleevec, if you have any, I think if you can find

a drug that will let you live a pretty normal life, that's good.  It was just a

few years ago we didn't have all these options, we had one, and I think it was

who so poetically called it a " dirt nap "

I have always tried other drugs out of necessity, meaning

the one I was on was not working. In a perfect world we would not need any.  In

our imperfect world of cml, unless there are dire side effects, taking a pill

for the rest of our lives is a piece of cake. If I had to rely on Interferon, I

would have been " napping "   14 yrs ago!  Ugh!  that's a bad memory.

Everyone have a great weekend, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

09/08/09 - PCR 0.017

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: Lottie Duthu <lotajam@...>

Subject: [ ] PCRU

" CML " < >

Date: Friday, September 18, 2009, 12:03 PM

 

Dear Zavie,

I can understand Matt's frustration. It was pounded into our brains for so

long that we had to achieve PCRU by a few months or whatever if we wanted a long

lasting remission. All that was debunked later by Dr. Druker and others, but

that thought is still a lingering fear in our minds for many of us. When you

are young and have a family to support, you are on edge about losing your PCRU

and it leaves you feeling very insecue. He's had plenty on his plate, having to

change jobs and still had the same responsibilities. I'm glad things are

working out well with his new job, so that is some weight off his shoulders to

deal with. There is always that lingering fear that if you lose your PCRU, then

what is next?

I know it bothered me for a long time that I would never get there and everyone

was passing me by, it is not a good place to be mentally, because I experienced

it. Well I never got there and I am not bothered any more because people like

Bobby and me have proved you don't even have to be CCR. By the way, when is

your next garage sale???? LOL

Hands & hearts,

Lottie Duthu