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help with results!

hello everyone i hope you are all ok.

 

i went for one of my check ups yesterday ( manchester royal )

i asked for my results and they are at 0.557%  the doc then went on to tell me my previous results.

at diagnosis in may 2010  32%

november 2010     2%

feb  2011     0.557%

 

please will anyone with more knowledge than myself tell me in simple terms what this means and is it good?

my doctor said he is happy so i was!  i can see that the levels are going down but i just would like some other advice!

take care

alison x

Hi Alison. This looks pretty good to me. In the FAQ section on PCR I think the quote below is important.

"as long as the PCR is stable or decreasing, IM is having disease control and there should be no worry"

This assumes you are taking Imatinib (Glivec), but the same primciples apply for the other TKIs.
 As long as the results keep trending down things are going well. How are you doing with side-effects?

Best Wishes

Alastair

Dear Alison,

I agree with Alistair that you have had a good response and should not worry as long as your results remain stable or preferably decrease further over the coming months. 

Your PCR tests results show a reduction of the white cells that are positive for the PH chromosome- these are the cells that show you have CML.

These PH+ cells are now at a very low level in your marrow. At 0.557% it means that you have achieved a CCyR- complete cytogenetic response well within 12 months from diagnosis. This is considered to be an optimal response to TKI therapy (imatinib/Glivec?) and you should certainly be happy.

Over the coming year your tests should show further zero's after the decimal point...i.e  0.557% might become 0.055% or 0.005% and so on. 

But you are looking for stable results and you should not focus too much on anything other than maintaining the zero - 0.%

Congratulations and best wishes,

Sandy

hi alastair and sandy and thank you for your replys.

I am on dasatinib and in the spirit 2 trial.

With regards to side effects, i still get the more common ones, headaches bone pain skin complaints etc but these seem to come and go, sometimes i feel quite 'rough' for a week or so then i have a few weeks when i feel great.  Is anyone else like this?

I didnt say in my first post, but these results are a 3 months behind, the more recent are from november so the ones i had done yesterday, i will get the results at the end of april.  So fingers crossed they will be even better 

I do want to also add that i found the liverpool seminar really good, i got talking to a few people and i found that helped me a lot.  I will be going to another one in the future!

take care

alison