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DESTINY results finally back

Hi All

I've started a new thread as the DESTINY one seemed rather long. After waiting 20 days I finally have my results back from HH/trial office and it seems my PCRs are down again to 0.07 (from 0.09) so I am staying on the trial on half dose meds. Well relieved as I had expected a rise again and a return to 400mgs IM. Kept my spirits up by remembering that a phone call would have been triggered from the trial office (Liverpool?) to my hospital if remission had been lost - and no phone call. Then I worried that maybe due to Easter and two Bank Holidays the blood had got lost in the post- Easter backlog.

Has anyone else had this long to wait ? The delay certainly wasn't our end as my research nurse has been very proactive in chasing it up. HH/trial office seems now to send the results without the mathematical calculation to bring the results onto IS. (Could you remind me of the multiplication factor please, Sandy?). Has anyone else had this happen ?- My hospital were a little confused as HH never used to do this (eg Spirit 2 trial) Or is it due to time pressure after Easter I wonder. I wouldn't have worried about the delay had the earlier results not started trending upwards.

Anyway, my consultant suggested having my blood tested in Exeter each month where the machine is on IS and also at HH for the trial so I at least know if I'm holding Log 3 MMR. more quickly . A good idea.

A relieved Chrissie

What a great bit of news. I know of another person who thought they had lost MMR but the subsequent PCR result proved like yours to be back on track at the half dose.

I am so glad for you Chrissie- and yes it is a good idea to have your bloods done at your local clinics lab just so you can be sure of your continued molecular response without the wait. Delay in getting results to your clinician could be for many reasons. I can give you the HH conversion factor here, although these are subject to change over time - but as far as I know it is still 2.22 - calculated by 1.0% (IS MMR) divided by the local lab MMR which for HH is 0.045%....so to find the CF divide 0.1% by 0.045% = 2.22 ) so multiply your latest result, 0.07% by 2.22 and you get 0.15% on the IS.
So on both the unconverted HH result and the IS converted result shows you are holding MMR on half the dose.

Hope this is clear! but anyway you should be pleased. You should always compare apples with apples so if you get your results not converted to IS then stick with them- HH lab is extremely sensitive and will pick up Bcr-Abl presence at as low as 5 logs. Don't stress about IS- as long as you results are generated by the same lab then you will be able to pick up any significant change.

Good luck for the remainder of the trial.... and thanks for starting a new Destiny thread.

Sandy

I'm still doing well too :)

Thanks to both Sandy and Darley for your support.

Best
Chrissie