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Three months since being diagnosed. On Nilotinib.

Hi everyone. Great news for me today. Was diagnosed three months ago. On Nilotnib. Had my appointment with consultant today, very pleased with my bloods and don't want to see me for three months. Should also add that I'm being treated at Colchester and the care and treatment I get is 1st class. All the very best to everyone. Joe.

Hi Joe, well that is good news. Do you have any results that you can share?

Sandy

Hi Joe,

Welcome to the club nobody wants to join. That's two bits of good news: first that you're having a good response and second that you're on Nilotinib as a first line treatment. It's an excellent drug (all of them are really) but the efficacy is really good and has a low side effects profile. I think the most promising bit is your hospital opting to use it as first line treatment and bypassing gleevec, showing progress in thinking toward treating CML in the UK.

My advice for you is to make a point of finding out and understanding your PCR number and keeping track of it over time. This will probably help you monitor your progress in the long run.

Good news on your initial response and best wishes.

Chris

Hi Sandy. The only results I have are the blood test results each time I have been to see consultant, they are in the copy letter that I get when they send the results to my GP. Not sure if these are what you mean

Hi Chris thank you for the advice.
Joe.

Hi Sandy. The only results I have are the blood test results I get each time I have seen the consultant. In the copy letter they send to my GP. Not sure if these are what you mean.
Joe.

Hi Joe

I am also being treated at Colchester and I am now taking Nilotinib.. How are you finding the drugs, "touch wood" I am getting on well with them jacqui

Just over three months and feeling good. Had some side efects at first, but mostly gone now, also lost stone and a half, but eating more now, and putting a bit back on. Saw consultant couple of weeks ago and dont want to see me for three months. Just hope things carry on like that. Hope you keep well and all the very best to you. Joe.