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Oh no.

I've just returned from my 6 month appointment with my consultant and my PCR has gone up.

I was diagnosed in October with a PCR reading of 71.8%.  At 3 months I was down to 9.8% but I've now gone up to 13.2%.  He has said it could just be a blip but is waiting to get results back from todays sample before making any clear decisions.

Obviously the NICE decision is going to have a big impact, as if these latest tests continue to show an increase, I'll quickly need to move onto Nilotinib or Dasatinib.

Has anyone else experienced a blip like this in their results and if so what happened next?

I'll be writing to NICE and my MP later today!

Thanks for any help you can give.

It looks like you might need to change therapy as you would have expected your pcr to reduce a little more from the 3 moths one of 9.8%- it could well be a 'blip' as your consultant says- but given the situation with NICE and just in case the next pcr confirms this result then I suggest you have a good talk to your doctor. Of course you still have time- the final appraisal determination (FAD) will be decided on June 9th and if they don't change there minds you will have a couple of weeks before they publish. But better to expect little movement and not be disappointed than relay on all being well with NICE. 

If I were you I wouldwant to push for a change... but fingers crossed your pcr will drop further.

where are you treated?

Sandy

Thanks for the reply Sandy, I'm being treated at Wansbeck General Hospital in Ashington, Northumberland.  My consultant is trying to push through the test to get news before the deadline incase I do need to move.  My three month PCR at 9.8% I was led to believe was ahead of the target of 10%, can you confirm where patients are expected to be?

Also, if I do need to move, which is the best drug Nilotinib or Dasatinib and how does their performance compare against Imatinib?

I was speaking to somebody from Leukaemia and Lymphoma Research who is involved in the science side of things and was explaining that the PCR test is what they called a Green Finger Test, which in short, means that it is very difficult to control thae variables and results can vary significantly from one week to the next, although the overall trend should of course always be down.  I'm clinging to the hope that it is a blip but I was just trying to gauge if many others had experienced similar.

After the most stressful three weeks of my life I received a fantastic phone call from my doctor on Friday. The PCR has dropped to 3.78% and I don't need to swap drugs...standard Imatinib is indeed working! Thank the lord!

PCR results have now gone:
Diagnosis - 71.8%
3 months - 9.8%
5 months - 13.2%
7 months - 3.78%

The blip can't be explained...but...I don't care! Get in!

Thats one issue gone, now lets hope for the best re: NICE....starting this Thursday!

Brilliant news!!
Well done..
Vickie

Thanks Vickie!