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Hello,everyone.

I have been a survivor since Jan 2002.I was diagnosed with Leukemia in Nov of 2001 but it wasn't known what kind untill Dec.I had only gone to the doctor an routine check for my diabetes.Then the bad news came back with no mention at all about how my bloodsugar..This over rode that completely.I was alone in the office and just couldn't believe what I was hearing..No one to give support.The doctor appologized and said he hated to be the bearer of bad news,left and sent his nurse in...I drove home and that's where I fell apart.

A lot has happened in the ensueing years.I had a dosage decrease in Feb this year because the white cells were too low after all these years taking 400 mg gleevec.

I have been through every side effect known to Gleevec.Bone pain being the worse. I have puffy eyes and wear wigs.
There you have the story of survival...Who would have thought??!! Gleevec for CML was only about 6 months old when I was diagnosed.It costs roughly $3,000.00 here in the US.

I will be very happy to be a part of your group.
Freeda

Hi Freeda,

Its been a long time since you have posted anywhere. You are number # 441 in the Zero Club. I hope that you still maintaining CCR and that your side effects have diminished.

Zavie

Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
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
> 4 log reduction Nov/06
zmiller@sympatico.ca

Dear Freeda
Sounds like you are a Glivec success despite the side effects. Are you in CCR ? From Zavie's post I see you made it into the Zero Club.
I hope that your side effects are more manageable now.
I was dx in Feb 99 in London when Glivec was unheard of in the UK, I was about to have a BMT in October 99 when I heard about Glivec on the internet and decided to wait for it to be available in the UK - I eventually started on 6th December 2000 I had many problems staying on the drug, firstly major rash and had to restart with steroids and then crashing white counts so became a regular to GCSF injections, then low platelets cycling on and off the drug but my PCR was low and I was doing great until I acquired another leukaemia, it was a form of MDS which evolved into AML and then the big guns were out, chemo and then went for transplant - I had the reduced intensity sct which thankfully was very successful and I am now nearly two years post transplant and doing great.
CML Support was born out of the event of Glivec, I believe we went live in the spring of 2000. Sandy Craine who went to get Glivec from Dr Druker in Portland in Sept/Oct 99 and I set up the site with the help of another patient who was a web designer - we have moved on a lot since then and CML Support is what you see today. Glivec was the start to a revolution in the treatment of CML.
Welcome to CML Support - I am sure you will find us a friendly bunch.
With best wishes
Elizabeth