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PCR 9 months doubts

Hi, I'm looking for some comment, since I do not have a reference. I have been diagnosed since March 2018, PCR 58%, on 5/3/2018 I began my Tasigna treatment 600 x day, few adverse effects, my PCR of August 2018 was% 0.028, which excited me a lot, today they gave me the result of My PCR of February 2019% 0.022, the truth is that I expected a better result and I am a little disappointed, I know there are many experts here, can any one explain me because it does not diminish with as much speed as at the beginning?
Thank you so much

Hi there.

Achieving 0.028% after less than 6 months is an exceptionally good result. An “optimal” result (cf. European Leukaemia Net) would be 0.1% at that time, so you have blown that one out of the water.

It’s understandable you want that result to be lower and lower each time, but as you’ll see from so many of us here you tend to find that results bobble up and down a bit.

So you are pretty much at 0.022% after a year. That’s a really excellent result, well in the “safe zone” and if your results were never any better you would live a long and healthy life.

Perhaps your initial stellar response has given you (understandably) very high expectations, that didn’t quite pan out. But you are a few cells in a test off an MR4 result which after only a year really is stupendously good.

Here’s my take: look where you are, and how you are doing today. Which is great. Don’t worry too much about how you could have been because you had a very quick initial response. If you had just said that you are a patient a year from diagnosis with a PCR of 0.022% everyone would say that is an incredible result. And it is.

David.

Thank you very much for the prompt response, I hope to go ahead and reach 4.5 at some point to try TFR that is my personal goal and that of my doctor at some point, having found 0.028 PCR at three months gave me high hopes of achieving it , but I know it will cost but I will not lower my arms. I thank you again and we will keep in touch

Damian as David says your progress is great. Trials have shown that sustained period on TKI therapy improves the chance of successfully achieving TFR. First step when you and your oncologist are satisfied that you are stable and hopefully at log 4.5 is to look at dose reduction. There were some nilotinib patients on the Destiny Trial which Prof Clarke presented at the UK patient day. Suggest you have a look at his talk (link from the homepage).     

Thank you very much Alastair, the truth is that I should be happy about the results, but I let myself be carried away by anxiety, I should be more attentive to this, my oncologist told me that I would be more than calm and that we continue on this path that we are doing well. The response at 3 months was excellent and probably now it will cost a little more time to download some more logarithm, we will continue with those results. You can pass me the link of Dr. Clarke what I find, thank you very much again, always very useful information
Damian