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BCR Results - Help!

Hello everyone. I was just wondering if anyone can help with my BCR results. I started on Glivec when diagnosed and was on it for around 7 months then had to stop due to liver problems. I then had a short break and went onto Dasatinib which I have been on for nearly 2 years. Recently my results have started to climb and although they are not significant rises, they are still rises. My consultant doesn't seem worried but I am just wondering whether I should be more worried and if I will ever reach the zero club! Any help/ advice appreciated! K

 

Date of sample

BCR-ABL Ratio

 

 

28/03/2008

7.313

28/07/2008

2.502

22/08/2008

8.299

06/02/2009

3.504

16/06/2009

3.227

06/10/2009

2.024

27/11/2009

1.452

25/05/2010

1.945

24/08/2010

2.366

 

 

Hi Karen, I am surprised that your consultant has not talked with you about changing therapy. Given you have tried dasatinib for 2 years? now and although your results are lower than when you started - 7% ish down to 2% ish- bcr/abl it seems you are stuck at around 2 %. I think it might be worth asking for a second opinion/further tests/nilotinib?- would this be possible? 

I am sorry but I cannot remember where you are treated- but if it were me, I would feel happier if I could find out why the levels are sticking- you are not in CCR which is the recommended goal beyond 18 months from European Leukaemia Net.... so maybe you could start by quoting those guidelines.

Best wishes,

Sandy

 

 

Hi Sandy,

Thanks for your reply - I have been thinking of asking for shared care between Kent and Canterbury (where I am) and London but have put it off but maybe this will spur me on. I have my next appt on 31st Dec (and should get the results of another PCR) so will ask then.

Thank you again

Kx

Hi Karen - I asked for shared care after my PCR was stuck, a couple of years back. Do, do go for it!

I now have shared care with the Hammersmith and the advice and peace of mind you will get from being looked after by a centre of excellence is so much worth it.

Take care, Janet

Hi Janet

Thanks for that - what are your results like now, have they improved?

Kx

Hello again Karen - yes, they have improved. Once it was clear that my PCR had stuck, my local consultant was proactive, and decided to escalate my dose to 6oomg imatinib [there was not much likelihood of dasatinib or nilotinib at the time], and with a little 'encouragement' from me, decided to refer me to Hammersmith. Professor Apperley agreed that the dose escalation was a good idea. Shortly afterwards, my results started to slowly drop downwards and now, 4 years post diagnosis, I am at 0.03!

I'm really pleased and find the shared care arrangement wonderful. I get the reassurance of being cared for by the seriously knowledgeable haematologists at Hammersmith. My local consultant is also pleased with the way things are going, and has made it clear that we will do exactly as they advise. Couldn't be better really!

Hope this helps...

Take care, Janet

Hi Karen,

It is frustrating when everyone around you are achieving CCR and you haven't yet.

Although it is nice to get to CCR (my definition of entering the Zero Club) it is not necessary. As long as you remain stable on the drug you are taking without any debilitating side effects there is no need to switch drugs or increase the dosage of the drug you are taking. (This is not my opinion but the opinion of Dr. Druker).

Just hang in there.

Zavie

zmiller@sympatico.ca

I just wanted to say thank you for your replies, I will try and get shared care as I have been thinking about it for a while and I will also try not to worry (thanks Zavie) although my ambition is still to get that message from Zavie giving me my number for the zero club!!!