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My Diagnosis back on August 18th 2004

Hi
Today is exactly 9 years since I was diagnosed with CML. An achievement I thought I would never see.
At my local hospital they told me all about CML and that I would have to go to the Hammersmith 2 days latter to have my white bloods cells cleaned from my body. Carol asked what the prognosis was and we were told 3-5 years. We looked at each other and stayed silent. What we did not know was that was the prognosis without treatment. You can imagine our relief when we got to the Hammersmith and was told by Dr David Marin what my options were.
Several choices but I had choices.. I was started on Imatinib right away and have not looked back since.
Im intolerant of the drugs but they all work and now I'm on 400mg of Nilotinib daily and have a PCR of 0.011 as of last month.
Yes I will try the new drugs as they come on stream to see if I have less side effects.
Im extremely grateful to my current consultant who says I should have a normal life expectancy Im so glad Im being treated at one of the centre of excellence in this country.

Best wishes to you all.
Steven 47+9

Hi Steven, another milestone for you.... well done. Regarding your mention of trying other drugs in the hope of reducing side effects- I don't think you were at the National Patient Day last year but Prof. Clark did talked about the Destiny trial- I believe it will be opening in the UK within the next few months. As your PCR is so consistently low it might well be something for you to think about enrolling in.

Best wishes,
Sandy

Thank you Sandy.

I must have missed that one. I not heard of it. Do you have anymore details.

Many thanks Regards

Steven

Hi Steven

I am interested in this one and awaiting the go ahead.

Best
Chrissie

Hi Steven, you can find details on the patient day overview at the top of the page- in red.
this is the paragraph on DESTINY:

DESTINY – a UK study using dose de-escalation for those with sustained deep molecular
responses of MR4 and lower.
Rather than replicate STIM, the DESTINY study will try to discover how to help a larger percentage of
stable molecular responders to stop and maintain stable MR4 and lower without therapy.

Chrissie, I have been asked not to put the link on the forum as the trial is not yet ready to start- although it will be soon.
I will post more details as soon as I am allowed to.
Thanks and best wishes,

Sandy

Congratulations Steven, really pleased for you. Angela