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DESTINY - Updates from those enrolled on the trial

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Hi all, Just thought I would update how DESTINY was going for me. On Imatinib 200mg Diagnosed 2011, steady slowish fall over time to MMR ( just about hitting the goals back then which are actually quicker now, I mention to give a little positivity to those that are a little slower than others  ) and then onto a starting point of 0.012 IS Hammersmith at month 0.

Start - 0.012

Month 1 - 0.007 so lower !

Month 2 - 0.006

Month 3 - 0.036

Month 4 - 0.034

Month 5 - 0.042

Month 6 - 0.035​

Month 7 - 0.036

So nice and stable. Question for anyone on DESTINY that has stopped completely now, did you have similar numbers before stopping and see levels maintain afterwards around the same numbers, or rise - fail, or are we with detectable numbers still approaching the end of the 12 months 1/2 dose still. Seems from those I have seen here and on CML-UK Facebook that those coming off and doing well seems to have been undetectable at stopping point.

Month 8 to 10 - 0.04 basically for past 5 months,

Month 10 - 0.01 Great nice fall

Month 11 - 0.07 hummm

Month 12 - final PCR before stopping 0.12 Fail. so retest on Wednesday just gone, when this was the meeting to stop originally pencilled in. Result next week and then either a fail and full dose or stopping, quite a difference really on the basis of this result. So, here we go. Will post once hear.

 

DESTINY:    I'm hoping Sandy will pin a post so we can gather information at early stage and learn how drug de-escalation is working and see whether it's going to be a real possibility for those who have been on imatanib for a long time and achieved good results.   

Not just during the trial phase but after trial and beyond.   It would be most interesting to know if imatanib is a "cure" rather than a remission.    Well a cure as far as "detectable" can indicate with current testing and which sounds good to me.

I'm at hospital on Wednesday and anticipate/hope that following confirmation of my last result (which was taken last month) and an overall review that for the first time in over 15 years that I'll be off glivec.  :)   Then in the fullness of time I'll be able to answer your question fully.   It's one I want to know the answer to as well.

Prior to this trial I was in previous trials.  Lots of them!   But specifically for imatanib and for the blood tests and hence already having checkups frequently.    For nearly 15 years my results have always been bobbing around between "undectable" and 0.003.    

Then Since DESTINY

Month 1 - 0.003 

Month 2 - 0.000  (undectable)

Month 3 - 0.001

Month 4 - 0.000

Month 5 - 0.001

Month 6 - 0.001

Month 7 - 0.000

Month 8 - 0.001

Month 9 - 0.000

Month 10 - 0.000

Month 11 - 0.000

 

So put simply:   For me, so far there's been no difference whatsoever being on half dose than there was when I was on full dose.

In terms of "Case History" in the same spirit as the opening post.   Diagnosed 1995.  MUD bone marrow transplant 1996.   Then on clinical trial to develop the current blood testing with the polymerase chain reaction based qualitative test.   Then a few months with a "Oh heck! what does this mean" then on trial for the game changer - Imatanib     An immediate result in one month.  Bobbed between undectable and 0.001 for the first year.    Had discussion way back then with consultants managing the trial about "what next" and because in those days I was in the land of "no-one knows".     Decided to stay on the drug because:

  • I was doing well on it and having been diagnosed in the old days I'd had years of VERY poor health and months of hospitalisation and a lot of complications and opportunistic infections etc and some horrendous treatment.  Now I "just took a tablet"
  • It wasn't approved at that stage.   It sure as heck wasn't even considered let alone funded by the NHS.  Cancer and Leukaemia research had approved and funded it for me and we were concerned that if I came off then I might not get the opportunity to go back on it if my results changed
  • There was still a lot to be learned.  (about the pcr tests and also about the long term implication of staying on imatanib)  
  • The risks coming off outweighed the benefits of staying on.  

Edited to add more recent results:

Month 12 - 0.004

Month 13 - 0.000

Month 14 - 0.000

Month 15 - 0.000

Month 16 - undetectable :)

Month 17 = Undetectable

Month 18 = Undetectable

Month 19 = 0.001

Month 20 = 0.000

Month 21 = 0.003

Month 22 = undetectable

Month 23 = 0.001

Month 24 - undetectable

Month 25 - undetectable

Month 26 - undetectable
 

 

 

Hi Nigel and Darley

month 1 -0.019  

month 2 - 0.008  

month 3 -0.052  

month 4 - 0.057  

month 5 - 0.087  

month 6 -0.072  

month 7 - 0.154 retest- 0.052 

month 8 - 0.068

month 9 - 0.063

month 10 -0.17 retest 0.05

month 11 - 0.034

month 12 - 0.141 retest 0.091

Above are my IS results from Hammersmith on half dose Imatinib on DESTINY for the past 12 months. I have started Month 13 still on 200mgs. As you can see I've had 3 blips where it looked as if I'd lost MMR, but retests suggested otherwise. .not sure if my accident of 4 weeks ago when I broke my humerus will have any affect on the CML but my consultant and I decided that to come off meds would not be a good idea, so it looks as if I'll be withdrawing from DESTINY at the end of this month and staying on 200mgs. I just feel that if I stay on the trial and have to go back on 400mgs when I lose MMR with all the cramps etc I couldn't take the extra pain over and above my arm ( which the hospital think will take a year to function fully again- (it's a spiral fracture).

Hope this makes sense - am right handed but learning to use left hand!

Best

Chrissie

Very interesting and informative.   It's made me wonder whether or not the dose reduction made any difference to results as they were previously.  

I made mention that my results had always bobbed along and with some little variances.  I'm thinking because I was in trial and having regular counts and checks that I've in all liklihood got more results over a longer period to be able to track the significance or otherwise.

Since the dose reduction over time there's been no change to that status so far.    For me that's the important and reassuring thing because in non medical terms it means "no different on less of the drug".   

Since the dose reduction I've now got my sense of smell and taste come back.     I've not had that since before I was on imatanib and we all presumed as a consequence of either the industrial strength chemo and anti-rejection drugs post bmt or the total body irradiation.    That coming back was an absolutely unexpected consequence.   I thought perhaps coincidental but I understand there are others on DESTINY that have said the same occurred with them when they went to half dose.

I used to have constant cramping.   Despite learning to manage it better over time, it was a "several times a day" occurrence.    Since going on half dose I've had cramp twice!    Phew!  I don't miss that!

The only other thing that's happened to me is my blood pressure has raised significantly.   I've never had elevated blood pressure before and that happened in month 2.   Might be coincidental rather than consequential though.

Chrissie,   Just the thought of cramp AND a fracture sets me gritting my teeth!    I've not personally had a fractured elbow.   Lots of other things though!   Having orthopaedic knowledge and experience kind of goes with my territory as a horse trainer !   :/    My partner fractured both her elbows in a non horse related accident over 40 years ago.  Careless!  She was left handed and had additional complications with the left side and so changed to "right handed" way back then.   It's a complex joint and so it takes time and good physio to fully restore function.    Don't be impatient and do what they tell you.     

 

After 15 or so years, I'm no longer taking TKI's.    So far, so good.   (I've updated my results above and so they're all in one place for others who might be interested in tracking what's happening when there's drug reduction and withdrawal)

I've been trying to ascertain the metrics in relation to this trial.   I was told yesterday that "there's significant number who show increases in levels in months 3 and 4".   

Darley, Chrissie and Nigel,  thanks for posting your results - which are all fascinating and I am sure will be very helpful to all of us. Darley, I have noted your request for us to set up a specific page so people on Destiny can post and keep track their results/experiences over time. I will talk with the web designers asap about this and try to get it on this site. Prof. Apperley (of Imperial College/HH) asked me some months ago to set up a page for those outside of stopping trials to log their PCR results and monitoring schedules because she is quite concerned that some patients will try to reduce dose and/or stop without close monitoring- or without expert PCR testing. I promised we would do this when I spoke with her at the Patient Day so .... I hope we can set up one page for Destiny/Other Stopping Trials and another for those who are 'freelancing'. 

As soon as I have the discussion with the designers I will let you know when the pages are likely to be available. 

Best of luck to all of you,

Sandy

Thanks for that.  Even a "pinned post" might work.

Hey Darley, good luck. How does it feel being TF? Grapefruit to the fore?

I went back on full dose Imatinib on Oct 21 as my results on 200mgs Imatinib were up and down although the final result from HH suggested MMR again at 0.043. Now i'm off DESTINY it means that for the first time since dx my blood won't be tested at HH ( first time off a trial since dx) and Exeter is not on IS so am expecting confusing results. However having watched the video about PCRs from HH last w/end I was happy to hear Jane Apperley add that we should be looking at downward trends rather than the molecular count  if local labs aren't standardised. That really cheered me up as I'd been a little concerned as to how to know how I am doing now having found that my last result was tested in both labs giving 0.142( unconverted or raw count from HH) and 0.6 (unconverted count from Exeter) . My next visit to clinic is Dec 7th so will be interested to see what comes from then. Downward. I hope!

So, fingers crossed for you,

Best to all

Chrissie

ooooooooooooooooo   I'd forgotten about grapefruit.         Rushes to the shops.......    :)

OK... whilst we wait for the new page/s I will pin this thread. 

I should have said that my result from HH for Month 13 was 0.294%(IS) which is why my consultant phoned me on Oct 21st to advise me to go back onto 400mgs. 6 days later, after a retest at HH on 27 Oct, I got the result of 0.043%(IS). This seems to have been the pattern on several results - losing MMR but apparently regaining it on the retest.

Thankfully no bad side effects on the full dose - no cramps to date, touch wood. Hope to be out of the arm brace mid- Dec and am gradually getting more use back in the right hand despite all the swelling down the forearm and hand. I do wonder if all this had an affect on my CML,

 

Have a good w/end,

Best

Chrissie

Hi Nigel et al

Been on DESTINY since April 2014. V brief history - diagnosed May 2009; rare transcript so a bit unusual.  Excellent response to imatinib - undetecable within 6 months (from 83% at diagnosis).  Nothing other than 0.000 since November 2009.

Since starting DESTINY I had (apparently) one 0.005 while on half dose, and a couple of very small (0.001 and 0.002) positives since stopping completely. Those were consequtive results so I wondered if something might be going on. I know they ave very small results - and may not even be "real" but when you've had nothing but 0.000 for about 5 years anything might mean something.  Anyway, most recent result was 0.000 again so who knows. Seeing my consultant in 3 weeks so will ask about it but other than that, enjoying being off the drugs. Though I didn't really notice being on them when half dose to be honest.

Good luck to all others on the trial. Anyone know what happens when it finishes, if one is still doing well? 

Richard

PS Sandy if you read this there is a spam post on this thread which someone probably should cull.

Good update Richard.

My results have more or less been "undetectable" and then with an occasional pop up to as "high" as 0.004.   Been that way for 14 years and so even when I was on full dose.   Frankly I wouldn't even have known had I been on say quarterly testing but because I was in trial it's been rare I've missed a monthly regime.

I discussed that with my Consultant way back when and initially we were all in the land of "No-one knows"  and then for the past 10 years I've been told "insignificant".    Though I'd come to that conclusion by myself.  

Hence for me the pattern on DESTINY half dose has been the same as it was on full dose.    So for me I've taken "no difference" to mean "insignificant".    On completion of half dose phase I saw my consultant and he confirmed that prior to endorsing coming off altogether.

Incidentally I was wheedled in to DESTINY because strictly speaking I didn't meet the trial criteria because I'd had a load of stuff pre imatabinib era and including a bone marrow transplant.  But I'm here and so far, so good :)

Because it's clinical trial really none of the consultants know, or are able to let you know the high level metrics about whether people are doing well or not.   They can speak in broad terms about the people that they've put through but no-one knows the whole picture yet.    That's clinical trial criteria.   

What I do know is that my consultant put through 12 patients.   100 will have completed de-escalation this month.   Analysis will be shared with all Consultants by March.

That's why in the meantime I thought this forum was such a good opportunity to find out straight from the horse's mouth.

I now have my readings for month 20 on the Destiny trial at Hammersmith - 0.000.

My reading have fluctuated a little over time from 0.000 to 0. 021 but mostly at 0,000

The only thing I have noticed over the period of de-escalation and stopping altogether

has been  an increasing degree of joint pain in knuckles, shoulders and feet. 

I have been told that some 10% of those stopping Imatanib experience this 

change and that I should perhaps see a rheumatologist .

It may just be that I am 72 years old next month and such aches and pains would have come my way anyway at this age.

It is , however, good not to be putting the daily bullet into my system !

Good luck to all others on the trial 

Barry 

Hi Barry... re pains you are experiencing... it seems from data collected from the various European stopping trials that there is such a thing as 'withdrawal syndrome' for some patients. Prof. Obrien talks about this phenomenon in his summary of this years ASH meeting. So maybe a trip to the 'Rheumatologist' would be a waste of your time? It seems that the median onset for pain is 21 days and it can last for some months.

I have just put his summary on one of the 'featured articles' box on the home page: see first box with orange border. 

Well done on the continuation of zeros ;o)

Sandy

 

Had another monthly check up last week.  Still "undetectable".  No problems either.  Sense of smell and taste continues to improve.   Still reduction in cramps.

Great news, Darley.

I am finally out of my arm brace now  and have managed to avoid all cramps after going back on 400mgs Imatinib. My PCRs are going down (now measured at Exeter  rather than Hammersmith and not on IS as not on a trial so don't know if I'm back in MMR or not ) so all is good here, My haemo and my "boneman" are both sure the rise had nothing to do with my accident which is interesting and confirms that going back on 400mgs was the right move.

Have a great Christmas and enjoy the food and drink with your improved taste,

Seasonal greetings  to everyone

Chrissie

Good News for you Darley - and as Chrissie says a renewed sense of smell makes for a more tasty festive lunch/dinner. I lost my sense of smell after diagnosis and TKI therapy but it came back after I had fully recovered from my transplant. It meant a lot to me to get that back at least.

Well done and good luck for maintaining your TFR!

Sandy

I lost mine after transplant.  Not sure if it was chemo, total body irradiation or the host of problems and drugs post transplant.      I went on imatanib about 4/5 years post transplant.   No difference at all though to senses for the past 20 years.    I was somewhat surprised that reducing imatanib to half dose would see that consequential or is it coincidental effect.

When I asked my consultant if it was associated I got a "not heard that one before" but then a couple of months later was told that there'd been others making same mention.    Not sure if it's going to be significant or if it's just a coincidence.

None the less it means I'm not tasting "weird" when I try to do it from memory.   Smelling stuff means I no longer have an excuse for asking someone else to go sniff revolting stuff to see what it smells like though ;)

I went right off the taste of all alcohol post transplant and I still can't cope with that.  I was a huge fan of good whiskey and wine and it still looks so tempting.  Every now and then I stick my finger in to give it a try but bleugh :  makes me shudder!    Still if I never have a drink again I've likely had more than my fair share.

Seasons greetings to everyone.  Stay well.  Be happy.  Enjoy family and friends and good company.  Be grateful for what we have and take a moment to think about those who are not so fortunate.   

We have of course made our donations to Bloodwise and bought cards from them as always and I always encourage others to do the same

I've further updated my results in my opening post.  Another month "undetectable"  :)

I was told when I went last week that there's a couple who have had to go back on and that it's seeming from what they know with their cohort of patients that if it's going to fail that you see signs within first 2 to 4 months.    Fingers crossed.  I've just had month 16 and so far so good.

Magic. Great start to 2016, Darley. If anyone deserves a break after what they've gone through over the past years, it's you. Fingers crossed it stays like this.

How's the grapefruit??

 

Best

Chrissie

As far as I'm concerned life is bleeding marvellous and amazing.   When I was diagnosed my consultant said the best hope would be for 3 to 5 years.... that was AFTER a previous "alert/prediction" that I'd likely be gone within the month.   I love to see him and tell him I'm delighted that he's wrong.  He always calls me his "star patient".

You know I've still not had grapefruit.  Not even thought about it!  That may well come at some point on hotel breakfast.  At home I tend to fuel up on stuff for breakfast with good slow energy release and particularly cereals such as oats and bananas.   But I continue to have improved sense of smell and taste.  I'm sure I'll get round to grapefruit.

Well month 11 finished. So after 4-5 months at a stable 0.04 I have had a 0.012 at month 10 and just had month 11 result and increased to 0.07 my highest since starting DESTINY. I have my month 12 test coming in a couple of weeks, then if still under MMR stop when the result comes back 10 days later. Expressed my concern last appointment that with level so "high" - close to MMR how stopping can work for me.....Time will tell. Am having second thoughts on stopping as seems pointless, but feel I should try, for me and for us all as this data is important. So will see where the next result comes in but I seem to be in Chrissie's camp.

Really well done to those who have stopped and doing well, the data I have seen / heard from other trials seems to be get past 6 months stopping and things look good for long term, go Darley and others.  

Good luck, Nigel. You seem to have been more stable than me throughout the year, so hopefully you can at least get to try stopping. An interesting thing I've found since going back on full dose IM in October is that I've had no side effects - not even puffy eyes. Now I wasn't expecting it to be so easy. PCR counts have gone down, though I'm not tested at Hammersmith now I'm off the trial and Exeter isn't on IS so not too sure where I am countwise ( was 0.6 but down to 0.25 in Dec both in the Exeter lab), but going down is all I really care about right now. Next clinic appt end Feb so will see if the decrease continues.

Both my haematologist and bone specialist say my accident had no effect on my PCRs which went up at that time.

Anyway, lots of luck as stopping appears on the horizon

Best

Chrissie

I understand where you're coming from when you say "having second thoughts on stopping as seems pointless, but feel I should try, for me and for us all as this data is important"

My initial instinct was "but I'm o.k. as I am and it's just taking a tablet".   But all along the 20 years I've taken part in one trial or another and I know that it's trials that advance treatment knowledge.

I also know that when I first went on the trial for blood testing of bcr that was a little scarey.  (under statement!)  Ignorance is bliss!    I was post transplant and thought to be fine and well.  Appreciate that at that time it was believed that transplant was the cure and there was nowhere else to go after that.   So imagine what a shock it was to discover that the blood test was indeed accurate and it did actually mean I still had CML and it was back with a vengeance!   

Then came the good news and I was introduced to Mr GlyvecUK by my consultant and we agreed in the blink of an eye that I was going on trial of this new potential wonder drug. When I had positive results on it very quickly we all sat down doing a "who'da thought that then" and "what now"..... reduce dose... come off it... what would happen if I did either of those?  what would happen if I stayed on?   I was genuinely in the land of "no one knows".   We all agreed "Stay on.  Stay on the same dose" and that went on to be the best practice treatment model.

So though I had second thoughts on stopping it did seem really important to at least see what happened.   I was reassured by getting information about others either in previous trials elsewhere or who had taken in on themselves for reasons of intolerance or non compliance to reduce or stop.   It seemed to me that this was the first trial I was about to go on where I wasn't trail blazing and already there'd been a very encouraging story to tell.  That IF my results showed a return that it seemed it was a case of "just go back on the tablets and the results will recover again".  

So I went for it for exactly the same reason.   As I said in an earlier post on this thread I was weedled in because I didn't strictly meet the trial criteria having had masses of other treatment before imatanib came on the scene but it was generally agreed by all that I was a peculiar case anyway so "get in there".

IF it means that going forward we begin to know what optimum duration and dose is as the norm then that's got to be good.  I've always been blasé about modern treatment and "just taking a tablet" but I do appreciate that's because I had such a rough time of it with prolonged periods of illness.   In reality I do appreciate that it's still a huge shock of a diagnosis and a big lifestyle change and that the contraindications and even effectiveness isn't always great.    So IF we discover people can take less or even stop after a while or have a break, that's got to be good.

So I wish you all the best and a good measure of good luck.
 

Just a further update from me..

Seems some of the "mini positives" I've had were not real.  Something to do with the way the tests are done and the fact they include testing for the more common transcripts as well as the peculiar one I have/had.  The mini positives were all for the more common one, which I didn't have, and only one out of the three runs each time anyway. 

So, the mini positives I had in Sept, Oct and Dec were not real are all now reported in my notes as "undetectable".  As was my result for January.  So I've been completely off imatinib for 8 months, and holding steady at 0.000. I'm very grateful to all those who have got me there, and very aware of how lucky I have been.

Good luck to all. 

Richard 

Fantastic news, Richard. After 8 months they say it's unlikely you will relapse. Keep us all posted,

best

Chrissie

regarding why some people can stop and achieve TFR and others can't maintain molecular response without their daily dose of TKI - we might be getting closer to finding out why that is. See an article I have just posted - I have featured it on our Home page. 

Sandy

I've just read that before coming here to post my results from yesterday:   So far, so good and still undetectable :)

Just hoping I've got the "why I can stop gene"

 

Destiny update. So, 4 weeks ago I reached 12 months, and so my last PCR before stopping. The result came back 10days later at 0.17 and so a fail. So rather than stopping it’s a retest and keep taking my 200mg Imatinib. How do I feel, well always felt this wasn’t going to work for me as detectable, but worth a try. Now: well I feel what’s the point in stopping, as if levels are going to rise, lets cut out the middle man and not bother stopping as I will be on drug again in a few weeks, but maybe, unlikely stopping will work…..

So two weeks later now, retest is back 0.08 so below MMR @ 0.1 and maybe back on for stopping. The maybe is my Dr, who is great, needs to check the protocol here, as close to MMR and failure should I be stopping ? The answer I feel sure will be yes, as below 0.1 again, back to clinic Wednesday as scheduled and he will know then.

How do I feel, well almost think would have been better for second over 0.1 and fail then that’s that. I am lucky and have no side effects, so am ok with taking a pill, never been an issue for me.

I am seriously thinking of saying no if they ask me to stop, as what’s the point, clearly I will go over 0.1 again, and as mentioned above, it cuts the few weeks out of stopping, and more to the point any, all be it, and I truly believe this, absolutely minute risk of mutation whilst stopped.

So, not really asking for an answer, more an update to those watching destiny. Will let you know.

Nigel

Ps: you know what, having typed this, bet I try if offered  !

 

^ That's all something I thought and talked about.  

Because I'd been so ill pre imatanib and then as far as I was concerned having tried everything else and had it fail, I was REALLY reluctant to even consider trying to reduce it.  

It's difficult to know what you'll do when actually faced with choices but I know that when I first went on it in clinical trial phase and got good results my consultants and I had big discussion then about "what now then?"     We all agreed that best was to "just keeping taking the darned tablets and at the dose I was on.   Appreciate that as this was in trial there was a lot of unknown.     So I've done precisely that and for about 15 or so years!

Then when I started on half dose it was always in the back of my mind that I might not be the one it worked for and particularly because everything previously, including a matched unrelated bone marrow transplant just hadn't worked.  

I only went on DESTINY with the strict proviso that IF I decided that half dose was where I was going to be ok that I could stick at that and if for any reason I decided I just didn't want to risk the next stage of stopping altogether that I could.    No matter what my results said.   My consultants were reassuring me with "if you stop and the results aren't good then you can go straight back on".   For me that didn't cut it and because of my experience of being so ill.   So we agreed that I might stick on half dose.  

I kind of had to get an exemption pass to get on the trial in the first place.   I didn't strictly speaking meet the criteria because of all the previous treatment I'd had but kind of got in under the auspices of being such an interesting case and about the longest survivor and the longest on imatanib.

I can't help feeling that with what you've described I'd be asking for longer period on half dose and to confirm a trend of stable good results before I stopped.

But I know what it's like and I've made decisions in the past with other trials to "just go for it".    I did that when I went on imatanib and it was the best thing I ever did.  I'm now not on anything and so far so good.  I've got my head round "IF" results change I just go back on the tablets.        

I guess we just all need a whacking big prescription of hindsight.

All the best with whatever you decide. 

I posted recently that my latest results showed a blip on month 12 with an increase in bcr-abl percentage to 0.109 IS, so just over MMR  A re-test followed coming in at 0.089 and so beneath MMR. Accordingly I visited the hospital yesterday and have made the decision to continue with Destiny albeit I think it is unlikely to succeed for me as I have said before given my levels.

So yesterday was my last Imatinib for hopefully the rest of my life, but more realistically a few weeks or months.

Whilst this may seem negative that I think I am going to fail, I am not, I am very positive about my CML. I am just what I feel is realistic. However nothing ventured nothing gained, from both a personal point of view and for the wider cml knowledge, that's what trials are there for.  I truly believe stopping under supervised conditions is safe and therefore feel I have to try otherwise "I" will never know. Thanks for your note Darley yesterday, it crossed with mine here.

Nigel

 

 

^  I entirely get what you've said.   During the course of my treatment I too have chosen to do stuff because of progressing science.   I guess for me I have now reached the stage where having gone through so much I'd just rather not go back there.

I don't think you're being negative.   I think it's kind of what I do.  I try to manage my expectations and hope with a bit of stark reality.   I wish you all the very best with knobs on.

From what I've been given to understand IF there's a relapse then once you go back on it seems that things do go back to o.k.   IF I'd not been reassured on that, then I'm not sure I'd ever have commenced DESTINY.    

I hate that name! Someone just have a slap on the back of the head for naming it that!   Just sayin ;)

Just a brief update from me.  Two more results - 0.004 in February then 0.000 in March.  Makes me think the February result was a phantom (they do say at that level it may not be real).  So anyway, still going ok for me.  Hope you can continue, Nigel.

Richard

That's brilliant news Richard.

I've just updated my thead with latest results ... undetectable :)

Many congratulations to you both, Richard and Darley. What great results.

Lnng may they continue!

 

All the best

Chrissie

Just updated my results.... Month 19 and still all good

Wow that is fantastic, Darley. Might they be using the "cure" word soon? Do you feel any different being off the TKI for so long?

Great news,

Best

Chrissie

I won't personally be using that word.  Particularly as I'd been "cured" by having a matched unrelated BMT yonks ago.  :/

Cramps are a thing of the past and my sense of smell and taste are coming back. 

 

Maybe you could use the term... functionally cured... which is how the clinicians describe it. I am absolutely with you on your reluctance to use the work 'cure' though, as I had my tx in 2003 and according to my pcr results over the last 2 years there is still some residual disease present- even though at very low molecular levels. I suppose if you look hard enough you will find!

Nevertheless... this is great news for you Darley and I am sure getting your sense of smell (and therefore taste) back is a real bonus. Congratulations on maintaining TFR.

Sandy

 

So that's me off DESTINY. One month drug free and a 0.012 so a fail, retest 0.190 and I'm off as of today. Worth a try, and good data from DESTINY for us all for the future.

That's a shame for you Nigel, but as you say it adds to the data bank and will benefit patients down the line.

Did you feel any different off medication? I'm always interested in people's experience when drug free and if they feel any different physically.

Sorry to hear that mate.    Will you go back on "full dose" or "half dose"? 

Thanks for the replies, firstly no absolutely no different. As I have said before I am lucky they never really affected me other than the odd eye bleed. Also, yes full dose 400mg Imatinib. Will post in a couple of months with an update on numbers, hopefully fall quickly.

Fingers crossed for you. 

I thought one of the objectives of DESTINY was to see if patients could manage on half dose?   Are they just putting you back on full to whack it on the head and then to see if it can be lowered or will you stay on that dose?  Or don't you know till you get there?

I understand all that fail will go back on full dose, I will then be monitored until MMR, say a month or two hopefully then off the trial completely and back to normal 3 or 6 monthly clinic. Whether to go to half dose after will be down to a normal clinic and decision with anyones own Dr. The only issue I see is on 1/2 dose you get a monthly PCR to check all is ok, this will not happen at normal clinic and so if 1/2 dose did not work it would be 3 months minimum to find out. Perhaps a little unsafe, saying that as you say isn't that part of what DESTINY was about, certainty for me it was, knowledge.

I saw levels fall then rise slowly on 1/2 dose and so for me maybe 1/2 dose will do the trick, or not it seems longer term for me. But, and this is a big but, it seems that 1/2 dose FOR ME could have been an alternative if I had bad side effects ( which I don't ) say for a month or two, this is perhaps invaluable information gained if this was the case for others on DESTINY  as well, as longer term for those that were not on DESTINY may find that the evidence is half dose is an option to help with side effects ( I know many do this already, but more so with other harder hitting TKI's )

I now have to have a bone marrow test -

11.5.16   Just to update, marrow test done today. Here's to my first restart PCR

This all sounds very familiar, Nigel! I managed to escape the end of trial bone marrow aspirate as I had my broken arm in a brace and couldn't lie down. Doing a BMA with a patient standing up wasn't an option!

Regarding having another try at half dose Imatinib, I put this to my haem "Can I have another go at half dose in a year or so, or is this asking for trouble?" The answer that came back made me chuckle " Yes, it probably is, but we can do it if you like"  Hmmm, my decision, then. Had a bad couple of months with lots of different side effects recently after no problem for the first 3 months or so. Strange, but thankfully things seem to be getting back to normal (for me) again and the most important thing is that the drug is working.

With my experience, and reading about yours I am led to conclude that maybe our PCRs weren't low enough when we started. Most people who seem to succeed are those with at least 0.00 before the figure (I've never got that low) , and not just 0.0.

Anyway, good luck and I'm sure it will bring you quickly back into the"safe zone",

best

Chrissie

Just joined this forum! Have reached month 13 on Destiny and so far so good! Only problem now is severe aching in legs, arms, shoulders, knuckles. Saw it mentioned by others too? Started this week, 6 weeks since I went to zero medication. Is it just case of painkillers and patience?

I understand that the bone marrow test was a control clinical trial criteria that was put on by the NHS and that the consultants didn't necessarily agree it was necessary.

My consultant said once you're on the trial you can always refuse to give consent at the end.  ;)

Very brief update from me.  Latest PCR (April) still zero so now two years on DESTINY are up for me I'm moving to PCR/blood every 2 months rather than 1.  Fingers crossed no late relapse.  best to all.  Richard

Hi Richard

 

What amazing news. Congratulations. Another CMLer with a "functional cure".

Best

Chrissie

That's great news.   I hope to be following in your footsteps :)

Excellent well done, incidence of relapse after 6 months fall each month, and so at 12 months no treatment things are looking very good.

I've just updated results from my check up last week.   All still well and good.

Brief update - I was still zero at my May checkup.  Next one will be July now.  Apart from a couple of very low positives (0.005 the biggest - and the positives may not have been real apparently), I think that makes it 12 months since stopping and still basically zero. 

Best to all

Richard

Update. So after failing DESTINY after one month off treatment I have restarted. 6 weeks on full dose IMATINIB and had my first PCR back today. It was 0.19 at the fail point and today 0.213. Basically the same number however I am disappointed as I thought the TKI would kick in quicker and the number fall. Interested if others have seen this on destiny or other stopping basis when they restart ?  Nigel

 

 

Hi Nigel

MIne went up a smidgeon before falling back (Nov-Dec) . None of these PCRs are on IS, by the way....

Back on 400mgs Imatinib on   Oct 21st. with PCRs at  0.598,

Nov 9th  0.29

Dec 7th   0.3

Jan 21   0.04 (MMR)

Feb       0.03

May      0.02

I'm sure yours will show a good reduction in a couple of months,

Best

Chrissie

Nigel, I think on average it takes 2-3 months to see PCR's equal out to those you had previously enjoyed before stopping. I know it must be worrying but I am sure you will see your previously low numbers again. 

Sandy

Thanks Chrissie, and Sandy I am sure I will as well. When I went to half dose the following 2 months saw my level fall to the lowest ever, so the Imatinib took as we know time to leave my system, on that basis It will take a couple of months to fully build again. Thanks for the reply. Nigel

Another month and results determine that all is well  :)

 

Great news Darley .... long may your TFR continue.

Sandy

Wow is all I can say. So happy for you, Darley,

Best

Chrissie

So probably my personal final DESTINY post..  After getting to stop for one month I failed and restarted treatment. Went upto 0.2 at the fail point, end of 6 weeks on full dose and still 0.2, so a little disappointed, however needed the Imatinib to get back into the system and in blood levels up. So 4 weeks later, 10 weeks on full treatment and a nice big drop to 0.047, so nicely under MMR and on track. Thought would be good for others in a similar position of restarting treatment to hear.

Hi Nigel

Sounds very familiar - mine are continuing to fall and I would love another 0. Down to 0.02 now ( not IS). Hope you don't get bad side effects after over a year on no/lower dose. I'm just beginning to come through all my new ones now but it's been a long and rather unforeseen journey as I didn't have these before I went on DESTINY.

Good luck,

Chrissie

Month 23 just done and all remains very well.

It's such a shame that "drug free" isn't a viable option for all but I'm relieved to hear that Nigel and Chrissie are both going back in the right direction again.     As I'm sure are they. 

Whoopeedoo, Darley. Yes OK with me - back to 0.02 (not IS) last reading taken in June.

Best to all

Chrissie

Just been for month 24's check up and results.... undetectable  :)

Hey Darley

So what can I say?? Great news again. How long will they keep testing you monthly? Have you had any grapefruit yet?

Best

Chrissie

Clinical trial testing is 3 years. Not sure what happens after that.  I'll let you know when i get there.

Hi all,

 

As I'm on two monthly testing now I don't post often but latest results are still zero (undetectable).  Have begun to lose track of which month (number on trial) that is but two years and 5 months on trial, and one year/5months since stopping, I am still zero.  I should end the trial in April/May next year - and after that, not sure of the plan (as others say).  I imagine it will be continue as is but maybe three monthly testing? 

Best to everyone

Richard

Hi Richard,

great news for you and thanks for keeping us all informed. Looks like DESTINY has been a success for a significant few and not just those who were at MR4 or lower at the start of the trial but also for some who were at MR3 or lower.  Things are looking good, especially for those who remain in TFR but also for those who kept their molecular response at or below MR3 at half dose. This proves the principle that lower doses can maintain a molecular response that thus reduce side effects. 

Sandy

Hi Richard

 

What brilliant news. You must be delighted. Congratulations - very pleased for you.

Best

Chrissie

I've just dropped by to check the forum and to update months 25 and 26 test results.... Undetectable :)

So it looks like for Richard and I that it's so far, so good.   I also wouldn't remember how long I'd been in this trial if it weren't for the fact I've always updated my results.   Though I do get a full listing from the hospital each and every time I attend.

 

Congratulations, Darley.

I guess I'm not the only one wondering what it is in your physical make-up that gets you and a few others to this stage, while others of us don't.  Perhaps DESTINY may eventually provide some answers?

Olivia

Belated thanks to Chrissie and Sandy for the congratulations.  I have another test on Friday so we shall see what that reveals..

In answer to Olivia's question, obviously I have no idea - and my and Darley's histories are, it seems, quite different, although we had both had essentially undetectable levels of disease for some time before going on the trial. Hopefully the trial will reveal some secrets - apparently that's why they want marrows at the beginning and end: or at least, that is the reason I was given..

A brief reminder of my CML history: diagnosed May 2009 (aged 42). Complete chance - no symptoms at all: no spleen enlargement.  Only slightly raised white count (about 14 I think) but platelets three times normal and rising..  Unusual transcript (e14a3 - no more than 5% of patients have this one).  Not 100% Ph+ve at diagnosis (about 80%).  Very good and rapid response to imatinib - undetectable within 6 months and have stayed that way ever since...

My own theory is that in my own case it is a combination of (probably) early diagnosis, no symptoms (never had it given to me but I think my Sokal score was low) and possibly helped by the unusual transcript - ie not very aggressive CML.  In other words, quite a lot of luck.  Pure guesswork of course and there could well be some biological reason which maybe the trial will find.  They are certainly looking for markers and signposts so patients get the best treatment for them as early as possible. 

I've always been acutely aware of how lucky I am and how much I owe to many people: researchers, doctors (including my GP and all those I've seen at Hammersmith and West Middlesex), the nurses, pioneering patients.  It's a long list.  As a small effort to put something back I am running the Brighton Marathon in April for the Imperial College Healthcare Charity, specifically supporting the Blood Fund (the new fund at the Hammersmith which Sandy featured a few months ago and launches officially on Thursday). 

Best to all

Richard

My clinical history is VERY different.  I was diagnosed 23 years ago and seriously ill in blast crisis phase.   Blue lighted to hospital in Leeds.  This was in the old days when treatment options were limited and you name it, I've had it.  Been on one clinical trial or another ever since diagnosis.

I had a matched unrelated bone marrow transplant 22 years ago and then the new blood tests came about - another clinical trial I was on - and the bombshell news that I was not "cured" and my MMR was high and rapidly rising.   Then onto Imatanib in clinical trial and immediate good response and long period of stable results and undectable or neglible.

Who knows why some do well and some don't.  I'm just really glad that I seem to be one of the lucky ones and each stage of my illness when it's been critical and I've gone on a trial with a "Who knows, it might just work" it has   phew

Just a brief update - all still good and PCR for my November test was also zero.  Haven't got last week's results yet.  Trial will end for me at the end of April - at which point I believe it will probably be back to 3 monthly testing if all still zero then.  There will be data for the end of the second year of the trial (a year when people will have stopped taking imatinib) available soon and I understand that is likely to show very similar results to those of previous stopping studies - i.e. somewhere between 40 and 50% can stop and not have to go back on.

All the best

Richard

Congratulations!  I hope the latest test is good too.

Olivia

Latest news is that January and March PCRs are still zero.  DESTINY trial ends for me next month.  Has anyone here finished already and if so, what was the exit routine??  I have a doctor's appointment next week which roughly coincides with the end of the trial I think. 

Best

Richard

Well done Richard and congratulations on completing the study successfully! You might be interested in the ASH abstract 'Strategies for Stopping TKIs Growing Clearer"  which was presented by Prof. Mahon at last years ASH  - data from the Euro-ski (and other) stopping study. See highlighted box above.

Not sure about how you 'exit' Destiny but I imagine you go on as you are? I do know that they are looking at follow on study designs for the future. 

Sandy

Thanks Sandy.  I've read the article (very quickly).  The Euro-ski study report says there was a difference between those treated for less than 5.8 years, and those for longer.  I'm borderline I think - I was on full dose (imatinib) for 4 years 11 months; half dose for another year at which point I stopped completely (so a bit over 5.8 years treatment although one year was at half dose).  Will be interesting to see the DESTINY data in due course - I've heard it suggested that speed of response also helps - so maybe it's not just treatment time but also time at MMR or MMR 4.5 etc that is relevant.  My response was very quick so maybe that helped too. 

Seems you can be a hare or a tortoise and be able to stop but the longer you're treated (or have a very low/zero PCR) the better chance of staying off.  Either way, it's pretty amazing. I couldn't imagine for a second that I would ever be well and fit enough to run a marathon (which I'm doing on Sunday, for the Hammersmith) when diagnosed in 2009 - the efforts and advances in CML treatment in the last two/three decades have been simply amazing.  Richard.

So my final end of study appointment was yesterday - PCR was zero in March and no reason to think it will have been any different yesterday. 

I am now on three monthly appointments, and remain off imatinib.  The plan going forward is fluid - the appointment frequency may decrease but for now I am happy (and prefer) to be seen at least every three months. 

Are there any others who have finished? I am aware there was one just ahead of me at the Hammersmith.

Best to all

Richard

Such great news, Richard. I wonder if you are the first in the UK to be in TFR for so long. Long may it last!

Best

Chrissie

Congratulations - not just to you, but to all the people who have treated you over the years!  All the rest of us can have renewed hope (and various shades of jealous yellow...).

Olivia

Hi Richard,

It was lovely to meet you on Monday. It was me that finished DESTINY at Hammersmith just a couple of weeks before you and I hope that there will be many more following us.

The same as you I am on 3 monthly appointments from now on, with the possibility of going to every 4 months should we all feel confident to do so in the future.

All the best and maybe we'll bump into each other in the waiting room at some point in the future,

Lynn

 

 

Hi Lynn

Good to meet you too - all the best post-Destiny.

Richard