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UK Patient Seminar/meeting 22/09 Birmingham.

For those who are planning to attend this seminar on 22/09 (World CML Day) make sure you book your place soon as places are limited and going fast. See links below to view the days agenda, register and book your place/s.

This is a unique event and will give you direct access to some of the most eminent and respected CML clinicians in the UK. Don't miss out.

https://www.cmlsupport.org.uk/uk-cml-patient-conference-2018

Live video footage of the seminar will be broadcast on this site, starting Saturday morning at 10am.

https://www.cmlsupport.org.uk/uk-cml-patient-conference-2018

Many thanks for arranging for the seminar to be streamed. I watched  Prof Clarks' talk on Stopping treatment with great interest - I was one of the 9 patients to fail DESTINY right at the end of the dose reduction phase in Month 12 but have now been taking 300mgs imatinib since June 2017 and holding at MR4 so  intend stopping treatment next year. Prof Clark's very positive talk has reinforced that intention.

It's amazing how far we have come in the knowledge researchers now have about CML - even since I was dx 9 years ago.

Thanks again

Best

Chrissie 

Hi Everyone,

I watched the seminar on live stream this morning and it was very interesting. Unfortunately, I missed the afternoon session.

Just wondering if  a recording of the day seminar will be available on this forum to view.

Regards

Joanne.

Hi Joanne,

I am pleased you found it useful!

We will try to host the recording of the sessions, but if it is possible it will take a while to arrange as typically we'd want to split it out to smaller videos on each topic. I can't make any promised, but we will try.

David.

Thanks David. Will watch out for it.

Joanne.

Any suggestions on how we might be able to get a copy of the full statistical report on DESTINY.  I am particularly interested in the imatinib vs. nilotinib vs. dasatinib comparisons and any data behind the comment that waiting 7 years before stopping seems to provide the best outcome.

I will try and find out and let you know.

Sandy

Recordings of the presentations of the UK Patient Seminar 2018 are now available.

You can find them on our dedicated page for this seminar. They are also available in our Videos section of the site (Patient Info - Videos menu).

Please note that the break-out sessions are not available as these were more discussion based, rather than presentation based.

David.

I have just heard back from one of the investigators of the DESTINY trial regarding your question.

  • "The final DESTINY manuscript is still being written. Regarding how long patients should be in MR4 before attempting TFR, the longer the better, but it needs to be discussed on a patient-by-patient basis."

Final results of DESTINY study were presented at EHA  in June 2018.... https://learningcenter.ehaweb.org/eha/2018/stockholm/214524/richard.clark.final.results.of.the.destiny.study.of.de-escalation.and.stopping.html

"Methods: 174 patients (male 98; female 76) were recruited after giving informed consent from 20 UK centres. At entry, 148 patients were receiving imatinib, 16 nilotinib and 10 dasatinib, for a median duration of 6.8 years."

As far as I know there are no plans to re-present the findings at any upcoming meetings. Also there are currently no plans for a 'son/daughter' of the DESTINY study in the UK. This is because the study was very costly to fund.

Sandy

Thanks very much Sandy - I am also interested in the data that analyzes the impact on outcomes of length of treatment.  Hopefully the manuscript will delve into this as well.  

Hope you are doing well. I have settled into the "new normal" as we call it.  On 25% dose nilotinib (150 mg/day) and PCR <.003% for 15 months now. As you will recall, the dose reductions were very much inspired by your help and were a God send.

If you find out when the DESTINY manuscript will be published, I'd also like to know how I can access it - thanks

 

The audio is so clear on these presentations. I struggled greatly at the conference in hearing several of the presentations. I will now be able to listen again. Thank you, David, for putting these presentations up online. 

Stephen 

Sandy:

Trying not to beat a dead horse, but as the article you attached says: "however the duration of TKI treatment was an additional predictive factor (p = 0.047; HR 0.93), as shown in other studies." What I'd really like to know is the TFR success rate for those only on 3 years of treatment at entry versus 4 years versus 5 years etc if the data is broken down that way. Dr. Clark  mentioned in the conference that 7 years was the "sweet spot", yet my oncologist says it's 5 years and an LLS Webcast I listened to yesterday said 8 years.  At just 2 years into treatment, I realize I am jumping the gun, but if waiting longer than 3 years gives me a meaningful advantage for TFR, it would be nice to know this now before committing to extra pre-cessation testing.

As always, thanks - you guys are all the best

Well, different studies in different countries get different results depending on all sorts of things. One thing that is useful with a UK study is that you should have less adherence issues since there is not a cost burden with the TKIs (but maybe not, depending on the trial design).

You would likely need a decent meta-analysis to get the sort of figures you’re looking for because a trial design to answer that question is pretty much practically impossible.

However, that P value is quite low so is to be given some level of trust.

David.

You’re most welcome. Glad you find them useful.

David.

Thanks so much David.  I'm still not sure I understand why this data would not be available.  For each DESTINY participant, length of treatment prior to study and depth of response are both know, so it would be fairly easy to calculate TFR success rates for those in the MR4 group with 3 years of treatment vs. 4 years vs 5 versus 6 and so forth.  Sample size for each year might be a challenge, but certainly the TFR rates weren't 72% for all.  72% is for the entire cohort.  For expample, did the group with less than 5 years of TKI treatment have a lower TFR rate than the group with greater than 7 years of treatment? 

Any way I can contact those who ran the trial directly? Thanks 

Jax, if you are able to obtain this information, would you be so kind as to share it? I'm also interested in knowing if the amount of years on treatment before weaning to TFR requires full dose versus partial dose or half dose as acceptable.

I'd imagine the only way to get that information would be to email Richard Clark (DESTINY chief investigator) and ask.

https://www.liverpool.ac.uk/translational-medicine/staff/richard-clark/

David.

Thanks very much David - I will email Prof Clark and see if he responds