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BCR/ABL after 4 years

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Hi all

its been a while since i looked for some advice so here goes...

Im coming up for 4 years since diagnosis. 

After 2 years on Imatinib I went resistant, I should have been changed to another drug way before as my bcr/able had never gone below 1.

however I was put on Dasatinib 100mg about 18 months ago (June 2018) my count went down below 1 but has not really gone much further since.

my readings are...

Aug 2018 - 0.825

Nov 2018 - 0.340

these two readings were on some other scale which has now been given to me on the international scale as follows...

Feb 2019 - 0.081

May 2019 - 0.211

Aug 2019 - 0.184

Nov 2019 - 0.179

my counts seem to be staying in this range and the Doctor has said its ok but if it goes up they will look at changing me to posatinib possibly ?

My question is … is there anyone on here who has been living long term with their count just below 1 quiet comfortably ?

I will add I feel OK and am reasonably fit and don't seem to be getting any side effects.

thanks 

Paul

Hi Paul,

There are quite a few forum members who took many years to reach MMR, and many others too who have got close but never quite got there. I recall a seminar with a CML specialist and his view was though 0.1% is the “magic number”, really (in his opinion) nothing is going to go terribly wrong once you are below 1%. 

Your progression with dasatinib might not be super fast, but it’s not in a bad place really and might chip away over time. 

Are you on 100mg of dasatinib? Do you take any other medication, prescribed or over the counter?

David. 

David 

Thanks for your quick response. I am on 100mg Dasatinib. I take no other medication prescribed or over the counter. I havent had a cold or flu for about 6 years. The only thing i have had is a flu jab because i was advised and its free.

I was just a bit concerned as i am just under 1 (MMR) and i went resistant on Imatinib before reaching MMR . (Hed consultant wasnt happy this had not been acted on sooner).

It wouldnt take much to go over the magic 0.1   Its a comfort to know others are living ok with similar results as i lost a bit of confidence with my Hospital after the Imatinib fiasco.

Once again thank you 

Paul