You are here

Updates on DESTINY trial- Thomas

latest update
Submitted by Thomaskk on Mon, 28/04/2014 - 12:22.
Hi
Has anyone got latest update on the trail ?
Thomas
-----------------------------------------------------------
Hi Thomas,

I have started a new thread for this as the original is getting rather long and it is difficult to find newer posts like yours when they are buried in the thread.
I think that as the trial has currently recruited only 28 it will be quite a while before we see how people react to the lower doses. Some of the trial sites are not yet open (I have been told that Birmingham trial site will not open for approx 2-3 months) so I assume we will see more 'recruits' when all the sites are up and running. Liverpool Royal is the central recruitment hub and all details go through them so if you keep an eye on this link you will at least be able to keep up with the numbers if not the detail.
http://www.lctu.org.uk/trial/trial_info.asp?id=101&tgcode=5&menuid=30

Hopefully as we go along over the next 6 months those who are members of this forum will update us as to their progress. Good luck to everyone who is either on the trial or is considering joining it.

Sandy

hi all

just back from the royal 2nd month check up on trial, and feeling normal again, recruit number 22 was in for sign up at liverpool. no info on numbers at other sites,

tommy c

Hi Tommy,
Thanks for updating. I assume that all your counts are as normal even with the reduced dose at 2 months?....... or maybe you don't have the pcr result yet.
When you say feeling normal again do you mean that the side effects have reduced or even disappeared on the reduced dose?

Good luck with it all,
Sandy

It is good to see that there are now 29 people signed up to Destiny at Liverpool. The trouble is, a lot of patients with CML know little about it. I admit, 7 years on, I do not know enough. At the beginning we did not want to know, it was too much of a shock.We have learned a little more with the help of people in the same situation on this site but we both work full time and don't have much time for research although we will have a delve for information when we come across a concern. At first, I thought the numbers of people signing up for Destiny were a bit low but I have been talking to Sandy, who has done some number crunching for me and considering how few people are actually eligible for this trial in the North West, the numbers now make much more sense. We have not yet signed up for the trial but we are still seriously considering it. We have doubts; some resolved and some still to be resolved. Sandy agrees it might be an idea to share a few of the thoughts we have had about the trial to open up the discussion. It's a big subject so I'll try breaking it down into separate threads. If anyone thinks of a new area for discussion on the trial please start a new thread. Sandy, could I please ask you to keep an eye on the progression of the threads? - thank you.

Regards Lydia

hi all

I believe the total recruits nationally are 29 - as Liverpool is co-ordinating the trial, the numbers given on the website Sandy has given the link to above are for all participating centres - ie not just Liverpool.

They are slowly climbing ....

Richard

Hello All

Been for my check up after 3 months and thankfully everything still okay! No problems to report and definitely feeling better in myself. Asked how others were doing on the trial and was told everyone doing really well which is brilliant news. Will update after next check up on 27th May.

Take care everyone x

Julie

Hi Julie, really pleased to hear you are a.feeling better with reduced dose and b. everyone else on the trial is doing well too.

Although it's very early days, the rationale for this study hinges on de-escalation of a TKI therapy rather than an abrupt stop, and this is what appeals to me.
As I've said before, this is a different approach to try to get as many people as possible into TFR, but even if it turns out that only the same percentage shown in Twister and STIM studies achieve stable TFR (approx 40%), a further group may be able to keep a stab;e MR on a reduced dose and this of course has a number of important benefits- not least hopefully a reduction in side effects. Even if side effects are 'only' at grade 1 or 2, over the longer term this is difficult for patients who have to live with a reduced quality of life.
If it turns out that it is possible to keep people in MR either without any treatment or with a reduced dose then that will be an amazing achievement for UK CML clinicians.

Thanks for keeping us updated. Roger (our website tech guy) will set up a dedicated DESTINY trial page so that all of us, and especially those on the study, can keep track. Hopefully this will be set up within a few weeks.

Good luck Julie,
Sandy

Hi Sandy

Thank you so much for your kind words and encouragement . As you say even if we can maintain a stable response on the reduced dose with less side effects it will be a huge improvement. Will be exciting to see what the results of the trial will mean for everyone in the future.

Hope all is well with you.

Will keep updating.

Kind Regards Julie

Hello All

Just to let you know now starting month 5 and still everything is fine. Definitely feeling a lot better on the reduced dose.

Been told today that there are now 25 people on the trial at Liverpool.

Hope everyone keeping well x

Will update next month with news.

Kind Regards

Julie

Well done Julie. It must be a relief to be feeling a significant benefit from a reduction in dose, without losing your MR.

I spoke with Prof. Clark this last weekend and he told me that things are going well- although it's early days- but also that so far only 4 sites have opened for recruitment. He said that if all 20 were open the study would probably be already full.

Thanks for keeping us updated. Last time I looked there were 39 enrolled altogether so L/pool has the majority for the moment.

Best of luck for a continued positive experience.
Sandy

Hi all

Been many years since my last post. Diagnosed April 2003.

Well 11 years on, ...(yes 11 years) I am now down to x1 nilotunib (150mg) tablet daily. Initially about 2 years ago I went on a reduced dose 300 mg dose 1 day & 150 alternate day for well over a year. The reduced dose was at my request.
My PCR readings have remained (dare I say) pretty steady at 0.002 taken at HH. I still work full time feel really good.

My cunning Plan... A further 6 months (if the current PCR remains), I am... (fingers crossed) going to come off altogether. I will be monitored with more frequent PCR tests. Yes,again my choice!!

I have now been monitored for about 2 years at HH.
God willing I will remain at this level or even 0.000000000, but to all of you newbies out there... Don`t ever give up!!

Sandy, Elizabeth and Margaret have been tireless in their help for us who simply did not know where to turn. We are all so lucky to have their input!!

I`ll keep you posted

Kind Regards

Simon

Hi all,
Hopefully I will start on the DESTINY trial 2nd July at st james hospital, leeds. I've signed all the paperwork, and I'm getting called in for a bmb 25th June. I'm on glivec. Currently have a CPR of 0.0014%.

Good luck David,

Just one comment. I know that the protocol of this trial requires that you have a bmb at the start and end of the study, however, when I asked about why this was needed Prof. Clark (lead investigator) said that it was at the insistence of the organisations/committees that badged the trial. He did say that although this requirement could not be waved, patients possible could ask for sedation before the each bmb and that he would try to make sure that the various sites are aware of this.
St. James is a pretty good centre and it might be worth you asking the study team if you can have sedation.... unless you are one of the brave ;o)

Hope all goes well for you on the reduced dose- your PCR is very low at MR5 -0.001% on the International Scale. Please keep us updated.

Sandy

Well done Simon for keeping a stable low MR on a reduced dose of nilotinib. It looks like you have done very well over the last 2 years, and hopefully you will be able to maintain an MR without treatment. Some on the STIM studies have maintained MRs even if at a little higher level than when they first enrolled on the trial. It seems as long as an MR is at or below MR3 (0.1%) it is still possible for some to remain in TFR (treatment free remission).

Good to hear that you are doing so well 11 years on from your initial TKI therapy,
Sandy

Thanks Sandy,
Even though they are not pleasant, I will give sedation a miss. I will definitely keep the website informed on my progress under the care of dr Graeme Smith.

Hi all, this is day 1 for me on the DESTINY trial. My dose of glivec has reduced from 400mg to 200mg. I'll keep you all updated on progress and side effect reductions.

Wishing you the best of luck- hopefully you will maintain you MR on the reduced dose without problems. Thanks for sharing your experience here, I look forward to hearing how you get on.

Sandy

Hi all, 2 weeks in and my side effects have pretty much disappeared on half dose of glivec. I feel much better mentally, more alert, no brain fog. No fatigue. I thought my side effects were pretty minimal, but now I remember what it was like before full dose tki's, and even before the run up to dx when I was getting gradually poorly with cml. Fingers crossed my pcr remains within safe limits! My next consultation/pcr test is on 30th July.

Hi David,

It's great that your side effects have 'pretty much disappeared' on the reduced dose of imatinib. My fingers are crossed too in the hope that the next PCR shows that your BCR-ABL1 transcripts continue to behave!

Thanks for the updates- I am sure they are much appreciated by many curious onlookers.

Sandy