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what am I aiming for? what does good look like?

Hi everyone I hope you are all doing good.

I'm sorry to bug but after my 1st pcr results I'm now starting to feel a bit more brave and want to try and understand more, so I'm sorry if I'm asking daft questions, but here goes.....
After dx July this year 3 months on imatinib my 1st pcr was 0.444% which I'm told is a very good response.

Can I ask please what the key milestones I should be hitting are and at what point in my treatment. I have tried to read up lots but find some of the info a bit over my head and hard to understand.

If my pcr never changed and stayed at 0.444% would I still live a long life? Sorry again if that sounds a stupid question.

My consultant doesn't know what my pcr % was at dx as these bloods have been lost?? But the nurse said they basically class everyone at 100% at dx anyway. She did also say that while my 1st pcr is good it could go up? What would cause that? And why should I not worry?

Sorry again to bug and ask daft questions.

Thank u everyone for ur support xx

Your  pcr sounds very good indeed - it took me a year to get that low.  There may indeed be blips, as the pcr result can vary for a lot of reasons.  The time taken for the sample to get from you to the lab, for instance, even, I believe, the time of day when the sample was taken.  Congratulations, and I'm glad you are feeling a bit less anxious.

It's sounds good to me too.   But then it took me 6 years to get to that stage.   Plus a mass of awful treatment including twice daily interferon injections and matched unrelated bone marrow transplant.   It was only after going on imatanib that I got there. 

 

Approaching 21 years for me :)

Hi Moirah,

Many congratulations on your extremely good response to therapy within the first 3 months. European Leukaemia Net recommendations are as follows:

Optimal Response

3  mths:  < 10% Bcr-Abl1

6  mths:  <  1% Bcr-Abl1 and/or Ph+ 0% (CCyR - complete cytogenetic response)

12 mths: < 0.1% (MMR- also known as MR3 or a 3 log reduction from baseline 100% Ph+)

Then at any time after, stable PCR at MMR or lower.

The following link is to the ELNet Pocket Card which outlines all the recommendations for various responses to therapy.

http://www.leukemia-net.org/content/leukemias/cml/recommendations/e8078/...

As Olivia mentioned, PCR tests can and do vary over time- I am sure you will continue to respond well and see further drops in Bcr-Abl %. Keep asking questions about anything you do not understand too clearly, It can be very confusing - certainly at first- but you will find you become more familiar with technical terms as times go on. 

Sandy