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Molecular remission (now posted in the right place)

Hi all,

I have just had it confirmed today during my routine 3 monthly appointment with my consultant that my latest test results of 0.0000% mean I have achieved molecular remission after having "plateaud" at just over 0.3% for a few months. I guess the tricky bit now is to stay there but I also wondered what percentage of CML patients eventually reach molecular remission. I seem to recall reading the figure at some point but can't find where. I also wonder whether most people who do get there, remain at that level or is a relapse at some future point likely?
Thanks in anticipation (and feeling pretty smug today).

Regards,

Colin

Congratulations Colin

Crack the bubbly - you have a right to feel elated.

Sandy or others will be able to give you more technical
information about relapses but the basic is just
Keep taking your medication - that is what is keeping those
leuk guys at bay and having regular blood tests so your haem
can monitor.

Sue

Hi Colin...... many congratulations, you have a right to feel smug! CMR is a great place to be....especially after you were stuck at 0.3% for a while.
As you know we are always told to look at the 'trend' rather than one pcr result, so hopefully you will get another negative resultfrom your next pcr test. If you maintain CMR or MMR over time you can be pretty sure you are in a safe place for the long term ;o)

Take a look at Prof. FX Mahon's STIM (stopping imatinib)study.. the link is under 'newswire' on the right of this page. DEC 19th.
He shows that it is possible for some patients who maintain CMR for at least 2 years then stop imatinib* are able to remain in CMR over time. It seems that the patients who responded best were those who had some previous therapy with interferon. The study is ongoing.
*Stopping imatinib (or any therapy) should only be done within a trial stetting)
I have a friend who was in CMR for over 2 years and is now maintaining MMR/CMR levels with just low dose PegInf (I think with one injection every 2 weeks) and has a really good quality of life.
However I don't think pegIFN is available in the UK outside clinical trials...see the SPIRIT trial data also under newswire DEC 19th.

Also
If you go to the main menu and click on Seminars and Conferences... then 'other conferences' you will find the link to the ASH Education Booklet which has all the abstracts from last Decembers ASH Conf.
You will also find a summary of the ASH conf. highlights written (ans shared with us) by Jan Geissler of the German CML Group.
go to www.cmladvocates.net (of which I am a co-founder)for more info on ASH 2008.

Meanwhile, enjoy your newly found negative status.... and long may it last.
Sandy

Hi Sandy,

thankyou very much for your detailed reply. I am trying not to get too carried away over a single result, as you say it is the trend which matters most. I had already read the STIM study and it seems to me that there needs to be much more research into the possibility of stopping the medication. Personally I am happy to continue on the glivec as normal if it means things continue to stay under control.
Thanks once again,
Colin