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PCR report 17 months, what awaits me ????

Hello friends, I pass my PCR study follow-up report

DX 3/13/2018 58% (is) in 193,000 copies of ABL
03/05/2018 Start treatment with nilotinib 600 per day
8/21/2018 0.028% (is) in 151,000 copies ABL (3 months of treatment) MMR
07/02/2019 0.022% (is) in 85,000 copies of ABL (9 months treatment) MMR
06/06/2019 0.0098% (is) in 160,000 copies of ABL (13 months of treatment) MR 4.0
03/10/2019 0.0035 (is) in 165,000 copies of ABL (17 months of treatment) MR 4.0 (shortly missing)

At 17 months I almost reached MR 4.5, the truth is that I expected it, but well I see that the tendency is good and my adverse effects are few, I feel very good and my blood and liver counts are that of a healthy person (that I I consider). I will continue on this path or maybe I will consult for dose reduction, I will talk to my doctor, I will have a promising future ????? This is a path full of anxiety and uncertainty, I will travel in the best way as before.
I really hope someday to heal

Thank you, I read you and I inform you a lot are very helpful

Greetings and success for everyone
Sorry for my English
Damian

HI Damian, these are really good results, and CML is now very unlikely to have any significant impact on your life expectancy. Congratulations, you should celebrate in what ever way works for you.

Others know more about nilotinib than I do. At my last discussion on dose reduction and potentially trying for Treatment Free Remission with my consultant he suggested that starting reducing is probably something to think about if you are MR4 or better for a couple of years at least. Statistics suggested that TFR  success rates improved after 5 years.

Thank you very much for the answer, I have a question, how much are those 5 years counted? since the beginning of treatment or since RM 4.0 is reached? Given that I have 17 months of treatment with a good downward trend, could I consider dose reduction?

Thank you
Damian

Damian,

Beginning treatment free remission can usually begin after a minimum of two years "undetected", ideally after 5 years as Alastair pointed out above. You are not at that point since your CML is still detectable - but at a very low level which is excellent. You can certainly entertain lowering dose at this point to relieve any side effects you may feel (or even those you don't feel!) and will likely maintain response. You are a fast responder.

Any dose change should be monitored with PCR testing one month after adjustment to verify your response continues. Once your CML becomes "undetected", you can start the clock timer leading to treatment free testing.

Thank you very much for the answer, I never fully understood what is undetectable in this condition, I suggested that the answers 4.0 / 4.5 / 5 are levels of undetectable or complete molecular response, I know that I am in a good place, but I do not understand what of these levels Is the chromosome there or not? If someone could explain to me, I would be disappointed
Thank you
Damian

Hi Damian,

The explanation of this which worked for me was repeated at this year's UK patient day. The talks are on this link   If you scroll down to Prof Richard Clark's talk in the afternoon session, he talks about an inverted iceberg in the first few minutes which I could grasp. He led the Destiny trial in UK which was all about success in achieving TFR; you may find the whole talk of interest.

Damian, congratulations on your excellent reports in such a short period of time.

On another note, my oncologist's married name is Gabilondo. Her maiden name is Ferrari. She and her husband are both from Peru. It is a name with which I'm not familiar and as you apologized for your English, I wondered where you are from. BTW, never apologize for your English! Wherever you are from I promise you I can't begin to speak your language. This is a terrible failing of American education.

Good luck!

Hello I am from Argentina, the last name is of Spanish / French origin, there are not many with that last name, you must be a good person your oncologist hahaha.

Thank you, try to watch the videos, but since it is not subtitled or translated, I find it impossible to understand, I would love to see them all, they are surely of great help and with a lot of information, will there be any way to translate them into Spanish ???? the tool that youtube has does not allow it. it would be great to be able to do it

Thank you all, I follow you from Argentina, here there is no network with as much information as this. We're a little out of touch, but I know that an informed patient is worth two, that's why I follow them

I deeply believe that the cure will be found promptly and

Damian