I update now and again and so thought would do so now as big step for me. Diagnosed in September 2011 and on Imatinib 400mg since, I have seen a steady decrease in my PCR’s reaching CCyR in 12 months and MMR in approximately 18 months, so not fast but on time, at that time, and subsequently falling to a steady 0.04 – 0.07 for the past 18 months, couple of little blips. I am seen at the Queen Elizabeth hospital Birmingham and attended clinic on Thursday of this week ( 0.05% ) and to my surprise have been offered the DESTINY trial as I have a log reduction of approximately 3.5. No side effects. per. They inform me that the trial has been opened out slightly to people in the range of a 3 to 4 log reduction as one category and then another category being 4 to 4.5 log reduction so as to see if the depth of response makes any difference. Whilst I have not absolutely made my mind up, I pretty sure I will join the trial. They confirm bloods will go to Hammersmith, monthly, BMB at start and another at month 37 or if have to come off due to levels rising. I will thenl be on 200mg Imatinib for 12 months, hoping my PCR does not increase I will then cease treatment, another BMB at 37 months or failure. So, before decide, to those on DESTINY can I ask how you are getting on. Has anyone had to go back on treatment, haven't spotted anyone on the 1/2 dose doing so. Any draw backs, cant seem to think of any ? All evidence is that restarting always works. Also, for info, IS scale, Queen Elizabeth Birmingham does not report on IS I was told yesterday. This is why the PCR tests go to Hammersmith apparently for standardisation ( Birmingham has a 1.1 multiple they said ) Not 100% sure my PCR levels are low enough really, but feel should try and for trial knowledge and given I feel sure resuming treatment will work, I think it is the way forward. Nigel
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Hi Nigel,
My PCRs have been around 0.04 - 0.07 for a number of years now so always Log 3, never Log 4 or better. I joined DESTINY in November on half dosage Imatinib and am holding it so far. In fact the last result I had was for December and that was 0.008 - the lowest ever.
For me the main advantages are that
1) the tablets are very small and therefore no hassle to take ( I'm hopeless at swallowing tablets and had a real fight with the 400mg Imatinib for all 5 years!)
2) no side effects after the first month. Even the face swelling round the eyes has gone. I also seem to have more energy.
Even if I can't hold remission medication free after one year, I will be happy to take 200mgs for the foreseeable future.
Good luck
Best
Chrissie
First numbers from starting DESTINY. Had my first PCR numbers today from starting point a month ago being 0.039 on Hammersmith readings, which the report says is 0.012 on the International scale. So very pleased, first one I have ever had on IS and just about MR4. (Dx Sept 2011 Imatinib 400mg )
Asked the conversion figure for Birmingham QE to IS and was told x1.1 for anyone treated there. Attended today 1st PCR after 1 month 1/2 dose. Will post when I know numbers. Keep well all.
I have received my month one DESTINY result today. On 200mg Imatinib ( Dx Sept 2011 Imatinib 400mg with a steady but not fast decline over 2-3 years, I mention so slower patients know speed is not everything in my view, quality of life and side effects are so important as well )
Start -- 0.012 IS
Month 1 -- 0.007 IS - my first 4 log reduction.
A great result, Nigel. The same thing happened to me. For 5+ years I'd also been around 0.03 -0.07 and then my first result on DESTINY half dose Imatinib was 0.008 -the lowest ever. After a wee blip in month 5 I'm back on 0.07 again. I guess at these levels it's a bit up and down - what my consultant refers to as "white noise". Fingers crossed for us all....
best
Chrissie
Month 2 of DESTINY completed, result back today 0.006, lowest yet, realise it is the same as last month in effect, but still nice to see a tiny fall, and no increase after 2 months 1/2 dose. What is going on with these falls on 1/2 dose, that's the question. Hopefully good news for many patients as we seem to be doing ok on lower doses once patient reach low levels. Time will tell but as you can see, upbeat.
I've just reported on one of the others that I've just had my month 8 tests and all remains absolutely spot on perfect.
Positive is that I've not had any cramps at all for over 3 months now. They started reducing within month one. Also I had lost all my sense of smell and taste and following chemo and a bone marrow transplant (pre imatanib). Now though it's returning. I reported that in month 2 and my hospital said they didn't know of a reason why but since then I've been told there's others reported the same positive outcome.
My treatment and testing etc is all managed at the specialist unit at Leeds Teaching Hospitals.