Hi all, I have my first test this week since Dx 4 nearly months ago, 3 months on Imatinib. Two questions the first is roughly how long do the results take, I’m guessing couple of weeks ?
Also I gather I have a blood test as well, of which a PCR test is done, I am unsure if this is right as I thought PCR is only done when you get below 1 or 2 % but if so where do the 10% or 20% etc figures come from that fellow early CMLers refer to in these posts
Thanks Nigel
Hi Nigel
I'm also due for my 3 month test this month in about 2 weeks time...is the bone marrow test a routine thing? I'm on the SPIRIT trial but I was told I will be having bone marrow test annually? I was also told I'm having a PCR test but I thought it was by FISH i.e blood test from what I have read on this website which is what is done until the L cells are no longer detected in this manner then its onto more sensitive testing? Anyway my consultant didn't mention I had to do anything different ( i.e usual blood test at appointment) and then its about a 2 week wait as they have to send it off....must say I'm a bit jittery reading the previous postings refering to new benchmark of 10% at 3 mths ...... Jo ;)
Hi Nigel,
most people should expect to wait 4-6 weeks in general for PCR results. That might be less for privately treated patients.
Regarding 'how low is a low enough' response at 3 months. The current ELNet and other guidelines are that for an you should expect to see a reduction from base line Ph+ (say 100% at diagnosis).
Preferably you want an optimal response but that does not mean you have to see that- it is a general guideline and you must remember that one size does not fit all. It might be that some indviduals take longer to see such optimal responses.
The 10% figure you are reading about must be taken in the context of the recent meeting at HH where Prof. Goldman was asked specifically for his veiw on one case.
As I was not present at that meeting I cannot interpret or contextualise his comments but I would urge that they do not be taken out of context.
I believe this figure is taken from new research (Marin et al) and is really to do with whether to treat from the outset with 2nd generation drugs to see an optimal response. This does not mean that those who are currently treated with imatinib are doomed if they do not exhibit 'optimal' cytogenetic responses or take longer than the general guideline to do so.
I also suggest that you might take time to read the CML FAQ then the sub-section on testing.....I have recently uploaded the ELNet guidelines produced in patient friendly version by a CML work group.... see a snippet below.
At 3 months the current (2009) ELNet guidelines indicate an optimal response to 400mg imatinib would be
CHR - complete haematological response AND a ratio of < (less than) 66% Ph+ cells to normal cells.
At 6 months, optimal response is considered to be < 36% ratio of Ph+ cells.
at 12 months, CCyR (complete cytogenetic response) i.e ratio < 1.5- 2% Ph+ cells
then ongoing Major Molecular Response (MMR) towards 3 log reduction (0.003%) which is deemed to be CMR (complete) on the International Scale.
I understand that the ELNet guidelines are due to be updated in July this year.
I hope this doesn't confuse further. Good luck with your consultation.
Sandy
Hi guys
i'm not sure on what the guidelines say but, i have a bmb every 12 months only ever had 1 at dx due my 2nd end of the month. I have a pcr test done every time i go to the centre which is usually between 2-3 months. I then have an agonising wait for about 5-6wks to get my results. Don't know if this helps
Thanks
Naomii x
Yes will be in touch Nigel- fingers crossed for a good start this year hey . Thanks also to Sandy for clarifying the 10% thing - think being a newbie I'm still working through putting all the info into context especially as this site keeps abreast on all updates so feel a bit more clear re: measurements. Re: results it sounds like its going to be a longer wait than I was told from what Sandy and Naomi say ( think I do recall my consultant saying he would have them by my Feb appointment he did also mention it took about a fortnight ( or maybe he said at least a fortnight? I will check at appointment). I keep notes as suggested by fellow CML peeps but may have translated it wrong! No didn't go to HH - did you? Sounds like it would have been a useful meeting for those who had specific queries on their treatment. Jo ;)
I have a PCR every 3 months, and get the results on my next visit - so I wait 3 months for the result. I don't know if it would be better to get the result earlier, but at least when they tell me, I can ask any questions. I'm on the Spirit2 trial as well - I have a bone marrow test every year, and also had one at 3 months.
