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still not at ccr

Hi All

Bit disappointed today, went to get my results from my 12 monthly pcr and bma to find out that my pcr results got lost (post office fault not hospital) and bma was not brill i am still at 20% in my marrow was hoping for ccr by now. I have had another pcr done today now have to wait 3 months then i have to have another bma and if its still the same they will be changing me to nilotinib. So i'm a bit disappointed as i was hoping to join the zero club today but never mind.

I'm sure others have been here is it quite normal to take this long to get to ccr? and is it quite normal for imatinib to take this long or is my cml just being stubborn. I'm more disappointed that i feel really well and was really expecting some good news.

Never mind i'm sure i will get there eventually just hold of the celebrations for now ha ha.

Thanks Ni x

Hi Naomii,

sorry to hear about your pcr! You are obviously and understandably disappointed.

Re: bma result, given that this was from a sample taken 3 months ago(?) and you do not have a more up to date pcr result to compare it with (when was the sample for pcr taken?) -would it not be likely that your PH+ population might have come down further since you gave that sample from the bma?

Sandy

My PCR was done the same day as my BMA, but the results were lost, i now have to wait 3 months for the next result arrrgggghhhhh. never mind i'm sure the next result will bring me some good news and if not nilotinib here i come ha ha.

Happy bday Sandy and thanks for responding x

Hi Naomii,

I am not sure why you will have to wait for 3 months for a pcr.? It takes around 4 weeks for most of us to get results from a test done on a peripheral blood sample- rather than wait for the results of a bone marrow aspirate.
Your doctor could easily take another blood sample and send it off for PCR. I do not understand why you should be forced to wait for your bcr/abl status. If your PH+ cells are really still at 20% at one year, then your doctor should consider following the ELNet guidelines a little closer.
Nilotinib is no more expensive that imatinib- so I fail to see why he/she is delaying the decision for 3 months. Maybe I am missing something?

Best... Sandy

Hi Sandy,

I was told that it takes 3 months for the results to come back. What i am going to do is wait 4 weeks then give them a call to see if they are back. I think my doc wants me to wait another few months to see if i reach ccr on imatinib, does this seem right? or should i maybe ask to change sooner? sorry if i sound a bit dumb i'm still getting my head around it all.

Thanks for the advice always appreciative

Ni x

Hi Naomii,

I think it's a good idea to push for the PCR results after 4 or 5 weeks. PCR tests do not take 3 months to do. In a busy hospital lab like Hammersmith they usually have them back within 4 weeks. In fact the blood needs to be tested within 72 hours of the sample.

The current ELNet Guidelines are:
CHR- Complete Haematological Response by 3 months all blood cell counts return to normal ranges)

CCyR- Complete Cytogenetic Response by 12 months - PH+ cells reduced by around 100 times from level at diagnosis.
*FISH test would fail to show PH+ cells visible in marrow-
**a PCR result should read below 1.5% bcr/abl

MMR- Major Molecular Response by 18 months (bcr/abl is lowered by 1000 times from the level at diagnosis) which might be shown as a 3 log drop or 0.1% remaining bcr/abl.

CMR- Complete Molecular Response can be achieved before or after 18 months and is described as a 4 - 5 log reduction or >0.01% - 0.001% bcr/abl on the international scale (IS)

If you don't meet the goals you could discuss an increase in dose or a change to another TKI (currently nilotinib in 2nd line), although some people meet the goals later or earlier than others... the earlier you reach a goal the better it is thought to be.

I don't think you should be overly worried, and your doctor might well be right, you might find that in 3 months you have reached CCyR or lower, but the current thinking is that the earlier you reach CCyR the better it is for the longer term stability of your response.

There is currently no difference in price between nilotinib or imatinib so if you think you could manage the different administration regime (from one dose a day with food for imatinib - to 2 doses a day away from food for nilotinib) then I think it is a discussion worth having with your consultant.

Hope this is helpful,

Sandy