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7 years since diagnosis

Hi everyone,

As I sat this evening with the family I began to wonder just how far I will manage to get from that dreadful day of diagnosis. So far 7 years feels like a pretty good milestone to reach.

On Sept 6th 2001 I saw a hematologist for the first time, and had my first bone marrow biopsy - I will always remember that day I was given the news that I might have leukeamia. It wasn't until 5 days later I found out I had CML. Sept 11th 2001. What a day to discover my world was about to fall apart.

Well here I am 7 long, fruitful and wonderful years later. That previous life of mine is gone forever and I live a new and fantastic one everyday.

Each morning I wake thanking all the CML experts, all the friends and helpers I have met through the internet, all the doctors and staff at the hospital, and my wonderful family who have walked this road with me.

It's been a bummy ride and sometimes I have hit the depression button, other times the 'head in the sand' switch but mostly it's been a journey of discovery and exploration.

New treatments and trials, the possibility of cure seem possible in the future. This is such a different senario to that of 2001. Then the prognosis was terrifying, and seemed to be a certain death sentence. Now there are treatments that work and keep us CMLers in a fair state of health for the main.

I am on Tasigna now, after 5 and a half years on Gleevec. My results are not the wonderful wished for zero, but I get close, 2 log reduction not 3. Zero appeared twice, but disappeared again just as quickly as it arrived. Side effects on Gleevec got worst over time, and I switched drugs early this year. Tasigna seems to suit me and I feel really well on it, the dreadful edema I had on Gleevec is gone, and the pain levels are far less. And 'gleevec botty' is GONE - wonders.

So celebrate with me as I begin the next stage of this long and interesting journey.

Healing thoughts for all

Pennie.

Congratulations Pennie!

7 years and counting - here's to many more!! And I hope those zeros return for more lengthy stays as well.

Hugs, Janet

Thank you Pennie for your post. I'm about three years behind you and I have found your post very encouraging. I also found it very interesting that you changed to Tasigna after 5 years of Glivec.

So far, I am one of the lucky ones in that I have been in the zero club for the last 18 months or so and have only a few minor gastric side effects from my 400 mg of Glivec. But it is good to hear such a positive message from someone who is much further down the road than I am, especially as that road seems to be a bit rougher than mine.

Well done.

John

Hi Pennie,
Your post is very encouraging indeed and it is obvious that Tasigna has made a big difference to your quality of life. I am really happy to hear that you are responding to this 2nd generation TKI and that all the side effects you experienced with Glivec have disappeared. Wishing you many more zero's with this new therapy.

best to you and Bill,
Sandy