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6 Years on
Steven,
Well done chap and keep it going :)
I was just wondering why you switched? Was it intolerance, resistance, side effects, wanted deeper remission?
Also how long did it take to get to 3 log reduction? What % did you start from? What were your 3 monthly readings?
Just wanted to compare my PCR results with someone who is a lot further on than me! I went from 68% at diagnosis and last reading after 8.5 months was 0.2% (2.5 log reduction). I have my 1 year PCR test on Nov 23rd and I hope I have 3 log reduction by then. Fingers crossed...
Manty thanks and keep up the good work!
Ian
Dear Steven,
you must be so pleased to get into deeper remission. I wonder too if your side effects have improved/disappeared and if
you have any from nilotinib?
Many many congratulations and best wishes,
Sandy
Hi Sandy Thanks for your good wishes. Carol and I are delighted by this extra zero although we know that going from 0.01 to 0.009 in the consultants eyes is not a big difference but to me psychologically it means a great deal. About a month after starting Nilotinib 600mg I had excruciating pains in my right arm. I was told to stop taking it for a week and then restart on 400mg. That did the trick and now back upto 600mg. All my other side effects from Glivec have subsided. No eye bleeds, less pain in my hip and no muscle cramps so I feel better for Nilotinib. HH have suggested that I might like to drop to 400mg which I will give some thought to when I see that I have a few PCR's with 2 zeros. Steven
Hi Ian Thanks for your congrats. I was 100% on dx back in August 2004 by beginning march 2005 it was 9.7 by pcr then end March 2.5.By August 2005it was 0.950 then kept going down then stabilising for 6 months then dropping again then stabilising then dropping till I got to 0.02 then 0.01 for the last 2 years and then yesterday finally the extra zero. I changed to Nilotinib because of intolerance although I could have lived with the side effects but my consultant suggested I could try. I could always go back to Glivec. So since March 2010 I have been feeling a lot better although I had hoped the switch would take away the 4 stone I put on whilst taking Glivec. To date no such luck but I live in hope. I am happy to chat to you if you want. Just email your phone number to me and I will call. Regards Steven. Steven.carol@ntlworld.com
Hi Angela
Thank you for your good wishes. It was really nice to see you again.
Could you email us privately with your email address as we seem have misplaced it.
Many thanks
Regards Steven.
Steven.carol@ntlworld.com