Newly DX Liverpool

Hello Moirah,

I'm sorry to hear of your recent diagnosis, but the good news is CML is very treatable and has an excellent outcome for most patients. I know the last few weeks will have been an utter whirlwind - in retrospect I was shocked and dazed for months but didn't realize it until later.

It might be useful if you tell us a little about yourself, how your CML was discovered and what treatment plan/medication you are on.

I was diagnosed at 32 and five years later I'm going strong; mountain biking, climbing and working a busy job as a senior manager. I take my tablets each day, have a blood test every few months and that's it.

As CML patients we are very fortunate to have a range of medications available to us and this makes our disease very treatable.

Please do tell us more about yourself and I'm sure one of us will be able to answer any questions you may have.

Chris

Hi,

It's early days so far and every slight change or unusual occurrence will set your mind into a state of mild panic. Over time this will settle down - as you have more blood tests you should start to see the medication doing its thing and your levels of BCR-ABL coming down to very low percentages. This will start to give you confidence the medication is working.

Imatinib has been around now for over 15 years and has brought many many people down to a good and sustained level of remission - in short it is an excellent and well proven medication. However, should imatinib not work optimally for you there are other highly effective medications your consultant can try you on. Think positive in that imatinib has worked well for thousands of people, but you have excellent second and third options, so don't panic.

It sounds like your side effects are at a manageable level - I recommend regular exercise, a good diet and drinking lots of water to help with the side effects. Also, strict adherence to your tablet regime is really important - never be tempted to miss a dose or become complacent with the regime.

All things being equal you will settle into your new normal and quickly adapt to life as a CML patient (only my boss at work knows and nobody else has a clue - true for many CML patients).

Chris

You will still be going through an emotional roller coaster. But indulge yourself. Get it over and done with and then take deep breaths and consider that as you were diagnosed merely through a routine blood test that you're fortunate and there's nothing different about today than before you knew you even had early stage cml. Easy to say and takes a little practice to do but try not to worry about what you can't control and effect and for sure forget even thinking about "might be" and "could be".

I'm one of the longest survivors. Diagnosed 21 years ago bi (before imatanib) and when treatment options weren't great... that is an understatement.

I was "lucky" and managed to survive long enough to have a matched unrelated bone marrow transplant and then to start on clinical trials of imatanib. I'm well.

Way back when and after the initial shock of diagnosis which in those days did not come with a favourable outcome I thought "sod it, I'm damned if I'm going to let cancer define me and have me and dictate what I do every day"

Now though with the advant of the TKI's I don't even remember I have cml.

Indeed I only joined this forum because I'm on the (stupidly named) DESTINY trial to reduce dose and hopefully come off imatanib after nearly 15 years on it.

All the very best and we're here when you want to vent, unload of ask questions