From one Barb to another

[Guest guest]

Dear Barbara

I am so happy to see your post. This is a wonderful group of people who

really have what I call, pure intentions. I hope you enjoy it as much

as I do. It is good to see a fellow comrad here that I have come to

admire. You have a lot to give and I am so happy you found the courage

to post again.

Welcome, be well and blessings

Barb

Hello all, Ive finally made up my

mind to post after a lot of

> hesitation. I'd promised myself never to post again on CML support

> groups after all the in fighting that went on in a couple of other

groups.

> Zavie has assured me that this group is above all that & is really

> here for helping & supporting patients.

> Let me introduce myself : Barbara meunier, 42 years old, mother of 3

> children, aged 15, 11 & 8.

> I found out that I had CML when I went to give blood 4 years ago.

> Initial tests at a local laboratory said that I had 29% blasts & I was

> told to prepare myself for a BMT, subsequent tests at hospital showed

> me to be firmly in chronic phase.

> July 1st was 4 years since I took my first Glivec pill. I am part of

> the Spirit trial here in France, I was on the Glivec & Ara c arm, but

> after 3 disastrous attempts with the Ara-c injections, my Dr said that

> I was allergic to it & told me to stop taking it.

> I got to CCR after 6 months & am number 805 in Zavie's Zero Club.

> I have been PCR-U more or less continously since July 2006, just 2

> minor positives in my PCRs, my Glivec concentration level is spot on

> at 1000.

> Just one little cloud on the horizon : some of my ph neg cells have

> trisomy 8 - around 60% of them a couple of years ago, but this was

> down to just 10% at my last BMT in Nov. 2007.

> I can honestly say that having CML doesn't affect me in the slightest

> - I'm one of the lucky ones with just minor side effects (nausea &

> diarrhea from time to time); I have however put on 13kg since taking

> glivec; I lead a very busy life with my 3 children, keeping the

> papers for my husband's carpentry business, the parents teacher

> association at my kids' school & am also a local councillor here in my

> little french village since March of this year.

> I am treated for my CML by Dr Franck Nicolini, a lovely & caring man,

> he spoke at last years UK CML meeting & is one of the leading european

> experts on CML, he's always available for advice & help, even to

> patients from other countries.

> Well I'll close for now, I think that about sums things up. I am fully

> aware of how lucky I am to be one of those who tolerate & responds

> well to Glivec,

> best wishes to everyone,

> Barbara

> PS I have been following a lot of CML blogs for a long time now, but

> the one that touches me the most is the one kept by a british man

> called Sudbury - type " Baldy's Blog " into your search motor &

> you'll see what I mean.

>

>

>

>

>

>

> 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)

>

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