Destiny trial

Hi Yvonne,

good to hear you are maintaining stable low molecular results on half dose.... and that your side effects have lessened. I believe that most if not all people on this trial have- so far- maintained MRs. It is a really important trial in my view, especially the potential to impact quality of life issues in the long term. As I've said before, even if the majority on the trial cannot achieve treatment free remission (TFR), being able to reduce the dose without losing MR will have an overall impact.
Sandy

Thanks for the update Julie and it is good to hear all is well on the reduced dose- hope for all those who are experiencing difficulties with side effects. Low level molecular responses held stable over time may well enable more people to reduce their dose if it is not possible to stop therapy entirely.

Best wishes and good luck,
Sandy

Hi Richard,
Really6 good news on maintaining a negative PCR on the reduced dose.... and that your side effects are less. Enjoy Xmas and have a great New Year.

Sandy

Thanks to all of you who have updated here about your responses to the dose reduction part of DESTINY trial. This looks like it may be a very important trial for the future- if most patients who have stable MMR can keep that level of response on a reduced dose of their particular TKI then the benefits are obvious. Some clinicians have suspected for some time that CML patients who respond well to TKI therapy may be being somewhat overtreated in terms of dose- DESTINY may prove to be the seminal stopping trial because of its unique protocol of using dose reduction before stopping.

Well done to all of you who have been fortunate enough to enrol on this trial.

Sandy

I'd not personally see it that way.

Having been one of the first on glyvec, and following loads of debilitating treatment including a mud bmt and then "relapsed", I'd say thank goodness we weren't pulled off an expensive drug that had outstanding success and minimal side effects.

I and my consultant discussed and agreed that the risks of coming off were greater than the benefits of staying on considering at that time so little was understood. It was a joint decision and I believe wholly right, proper and appropriate treatment.

I went on this drug in trial and before it was ever funded. Been on it now about 15 years I'm a survivor because of a mass of treatment that nearly killed me but kept me hanging in till imatanib came to trial.

I've had to think long and hard about reducing dose and trialling coming off.

Thanks for keeping us updated. Well done, you must feel so good to get such an improvement in your side effects.
The dose reduction part itself is a real step forward and may prove to be the answer for many in MMR (or lower) who would like to stop but can't maintain their MMR without therapy.
DESTINY is, so far, proving to be innovative! Well done to the UK CML clinicians for developing this unique trial.

Sandy

Good news re your MR remaining stable on the reduced dose..... and great that your cramp seems to have stopped altogether! That must certainly be a plus for you.

Sandy

Hi Richard,
this seems to have come around very quickly! but glad you have found the half dose easier to tolerate and still clinically effective.
Regarding anyone on the trial being at the stopping stage- Julie posted that she stopped in January this year- no update from her as yet. See her post further up this thread.

Good luck,
Sandy

And all remains well :)

I've had no sense of smell and little sense of taste for a long time now. I'd presumed it was as a consequence of total body irradiation or chemo prior to having my bone marrow transplant... but.... for the first time in over a decade I am starting to smell and taste things :)

Might be coincidental but for sure it's hugely so... anyone else???

Hi Sandy and everyone - have been to the Royal today for my check up - stopped taking Nilotinib in January so just beginning month 3. My results are still zero and I am feeling amazing - more energy and just feel a lot better in myself. Fingers crossed that this carries on x Hope that everyone else is doing well x. Take care will update after my next check up.

Kind Regards

Julie x

since my last post my results have dropped again this time to 0.00454
The hospital was a little excited with the drop and cannot explain why I am fluctuating so much. They seem to think that it is just me and will continue to watch my progress.
The good news is I am now on day 5 after stopping the 200mg of Imatinib.
I feel more alive than I have for a long time, I have more energy and generally feel well in myself.
the support team have been excellent and will continue supervise the trial. I will keep you all informed as to progress.

Hi Sandy
I hope you are keeping well.
Throughout the last 12 months the figures have been a little up and down. I am treated at Liverpool and the destiny bloods get sent to HH.
The last lot of bloods caused a bit of excitement with my team as you pointed out the possibility of relapse was expected, the team could not explain the reason behind the fluctuations. But seem to think that the sensitivity of the test may provide some explanation as to why it occurs. as a result each time they get the results back from HH they get scrutinised.

Either way they are not to concerned about things and continue to provide the support and guidance needed. I feel well and am happy about the whole experience.

I started on the trial in early November and this year my PCR results have been steadily climbing - in fact the results from HH for March showed PCRs of 0.094%. (Dec was 0.008, Jan 0.051, Feb 0.057). I await the dreaded phone call any time as I was at the hospital yesterday and I have a feeling yesterday's will hit the 0.1% mark so I'll be back on 400mgs.

Am I the first to lose remission on half dosage IM?

Disappointed,
Chrissie

Hi Chrissie,
looking at your monthly PCR results it is understandable why you fear your next result will show a loss of molecular response...... although 0.1% is MMR I assume it is the cut-off point for reintroduction of the standard dose? Looks like you are unlucky in being one of a group that may need to keep on with full dose imatinib to maintain MMR or lower.

I don't think you are the first to see a rise in Bcr-Abl1 % in the de-escalation phase, though it seems at the moment it is a small minority that need reintroduction of therapy in this 1st phase of the study. I have only heard of one... others may know of more.
Of course there will be a larger group who will not maintain MMR during the next stopping phase of the study.

Ultimately this and the other stopping studies will get us nearer to understanding why some individuals have a disease that is more susceptible to TKI therapy and which allows them to remain in TFR-Treatment Free Remission- yet others need continuous therapy. That may mean that additional cell signalling may need to be targeted, so maybe we will see a more precisely personalised treatment and changes to other 2G TKIs.

I am sorry to hear your news, it must be so disappointing for you....please update us on your next PCR result.

Sandy

Hi Sandy

Just to say although blood was taken for DESTINY on Tues Apr 7th and sent to HH, I am still awaiting the results. I have emailed and phoned the trial nurses at my hospital in Exeter, but they have nothing as yet,

Will update you asap as to whether I am still on the trial or not
In suspense,
Best
Chrissie

So far, so good

All remains well.

No cramps for 3 months now :)

Also my sense of smell and taste is most definitely returning :) Never expected that