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Long term IM therapy & results.

Hello everyone, it's been a long time since I came on here but I do keep up on the posts from time to time. Having said that, I thought it may help to let you know that I was diagnosed with CML in September 2003 at the age of 43, and took about two plus years to become Philadelphia Negative. I hit my 9 year anniversary next week. Increased to 600 mg Glivec in 2005, and then made it. Remained on this level with increased side effects until about a year ago, then reduced back to 400 mg on the advice of Prof Jane Apperley at the HH.

The good point is that I have been in stable remission for some years now, and the reduction to 400 mg did not cause me any problems. I have been at 0.06 for the last year or so, and my latest PCR was 0.04. I attend the HH every 3 months for checks ups & PCR, a small price to pay having been given a poor prognosis in 2003. I hope this adds to the support I have read given to others who naturally question slow responses.

In case it helps, when on 600 mg I had to split my dose into two, 300 mg day and night to stop frequent visits to the small room!

Kind regards to all,

Phil.

Fantastic story.

I started on 400mg Glivec this April, and reading this made me smile and think about how thankful i am that drugs like Glivec exist :)

Hi Phil,
good to hear that you continue to have a stable MMR. I am sure your experience will help others who are perhaps not achieving the published 'ideal' responses. We have to remind ourselves that we are individuals, no matter what and guidlines for optimal responses should always be put into this context.

For me the key message is to ensure blood samples for PCR are tested regularly at a specialist lab, and if treated by a general haematologist, they seek the advice regarding optimal care and monitoring of CML patients is with CML expert clinicians.

Best wishes,
Sandy