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Latest results for destiny

End of destiny trial for me.
I at month 14 in the trial, I completed 12 months at half 200mg Imatinib. Then 6 weeks without any imatinib.
My last pcr results came in at 0.0221
I am to go for another test next week, before going back on to full dose imatinib.
Whilst the news is not the best, I feel privileged to have been part of the trial. The team have been excellent and continue to support.
Good luck to everyone who is on the trial and keep positive.

Bad luck, Stuart. I commiserate.

I have been on DESTINY taking 200mgs Imatinib since early November and had a wobble over March's result of 0.09. However. the blood taken on April 7th showed 0.07 PCR so felt relieved.

I've just had a call from the hospital to say that the results are back from HH for blood taken April 27th and I'm now at 0.15. (And yes, this is after mathematical computations onto IS- I asked). Back to the hospital on Monday for another lot of blood to see if this result holds - in which case I'll be back on 400mgs. Boo hoo. Still, we are all so lucky with the choice of TKIs now available that I remain positive.

Best to all
Chrissie

Well said Chrissie
The options, care and alternative TKI's available really make a difference.
I feel slightly disappointed, but in a strange way relieved.
The team I have around me are excellent and reassuring in their ability to manage the treatments
I trust them to make the right decisions and feel so lucky.

Thanks again Chrissie.

Kindest regards

Stuart

Many thanks for the update, really sorry to hear the news. All the best for restarting and a very quick PCR fall no doubt. Likewise if you do need to restart Chrissie, hope the retest is lower and you stay on DESTINY. Nigel

Hi Stuart... while this must be a disappointment for you, I think that you can take some positivity from the fact that you held your MR whilst on the half dose. Remember, there have been a couple of people on DESTINY who have seen 'blips' in their results, then gone on to achieve lower results again.

Hopefully when all the data is in and the study if finished, all those who did hold their molecular response on the reduced dose will be able to try that again.

I think this study will get us closer to understanding the 'biological picture' of those patients who successfully hold a stable MMR orlower over the longer term after stopping - i.e those who achieve TFR.
As the STIM trials have shown- most patients - approx. 60%- will see a molecular relapse at some point after stopping, and around 40% will hold TFR. Finding the reasons why this is the case is the really interesting challenge for clinicians and researchers.

I hope that those who have held their MMR on 1/2 dose even if they cannot stop altogether, will be given the opportunity to try to reduce again. I am sure most of us would welcome that.

Thanks for keeping us updated and let us know if you change your TKI or if you can reduce your dose again at some point in the future.

Best as always,
Sandy

I talked to my consultant about the Destiny trial, which is not available to me in Edinburgh. He offered me a place on Ernest, which I declined because of the difficulty of taking nilotinib (it's not just me who has a drug schedule in our house, and the fasting would make life even more constricted that it is already). However, he has decreased my dose of imatinib to 300 mg to see how I manage on that. After a month I have less puffiness round my eyes, more energy, and - I think, fingers crossed - fewer night cramps. If I do have to go back on the full dose it will be annoying, but I expect I'll cope. Meanwhile, I'm enjoying the benefits!
Perhaps some of you who have not managed to stop completely may think of asking about doing something similar?

Good luck!
Olivia

High Olivia,
I was talking about DESTINY with my doctor today and she said that due to the trial closing she feels that many patients who are aware of it will want to try at least a reduction in dose - if the molecular response is low enough and stable enough-. I think this is what clinicians already do with their patients, on an ad hoc basis, because of intolerance issues and to try and give some relief to side effects which even if considered to be of low grade can affect quality of life over the long term.
She is worried however, that monitoring of Bcr-Abl % may not be frequent enough to ensure safety on either dose reduction or in fact stopping - outside of a clinical study.

I wondered if your doctor will give you more frequent PCRs while you are taking the reduced dose?

Glad to hear you are already seeing some benefit re: side effects.

Best... Sandy

As you will see from my response to your Question 4, I am still on 3-monthly monitoring. Still early days, though!

Hi Sandy.
Had a second blood test today. Results are due back early next week.
Expected to be in Alert status more than the 0.01 level required from destiny, my last were at 0.0221.
A provisional appointment has been made to see professor next Friday.
I will keep you all informed as to progress and outcome from appointment.

Good luck to all on the trial and stay positive..

Looks like we are in the same boat.
Like you say, plenty of options positivity is the operative word.
Keep us informed as to how things go.

Good luck with your treatments.

Stuart

As I posted below, I expected to have to go back onto full dose Imatinib after 6 months on half dose on DESTINY. My results seem to be all over the place:

March 4th -0.09
April 7 - 0.07
April 27th (clinic day) - 0.15
May 11th - 0.053

So, despite the result of April 27th it appears I will stay on half dose for now. I was not expecting this result and had even bought a tablet cutter to help with swallowing 400mgs!

Has anyone else had these fluctuations - I do appreciate that at MMR and lower, such things happen, but this is new to me. The test is done at HH.

Best to all
A surprised Chrissie

Chrissie... firstly, great you are still on the trial.
Secondly, I think there are others who have seen such fluctuations after de-escalation and then seen the PCRs stabilize again. Maybe this is is something to do with ...... no, I am not even going to try and guess, but it is still good news. I am sure many things will be learned about how the immune system/response behaves to very low molecular levels achieved after TKI therapy- and now I will venture a guess, maybe it could be that your immune response has been re-educated to recognise and exert some kind of control over Bcr-Abl1 at such low molecular levels?

Anyway- congratulations on your reprieve!

Sandy

I've just completed month 8 on half dose.

Sorry to hear your counts haven't been stable now you've further reduced. I'd be most interested to know what happens now and if and when you increase the dose again if your results go back to being good and stable.

I wonder why they put you back to full dose rather than half dose where you were o.k. I thought that at least this trial might indicate that for some patients half dose is not detrimental and keeps things stable.