After more than 5years on the I &V arm on the FLAIR TRIAL I was informed today that I have reached MRD NEG. I was so surprised, as was my consultant, as we didn't think that I would get there. He suspects that I may be one of the longest on treatment to achieve this and not quite sure what happens next as I started treatment on 31st October 2018.
Having a wee glass of bubbly tonight , definitely time to celebrate!
This is fantastic news Elizabeth as we were on the same arm of this trial during the same period. Yes it’s taken a while to get there but let’s hope it will be a durable remission as a result. It’s certainly given the opportunity to have a ‘thorough clear out’ and I was a bit longer in achieving uMRD than I’d hoped. It’s holding well however and I have my fingers crossed for us both 🤞
I’m honestly not sure what does happen next because the protocol is usually that you continue to take the meds for the same period as it took to reach uMRD but I’m not sure if there is a cut off point time wise. Your time on the trial will end in October at the 6 year point? Your trial co-ordinator will be able to advise on this.
For now, celebrate and I’ll bet you’ll be glad to see the end of the meds after all this time! 😉
Newdawn.
Bubbly is being consumed at the moment Newdawn! Thanks for all your support on my journey. X😘
🥂🥂🥂
Wow! Congrats and it must taste sweet!
Jeff
It really does Jeff!
Well done for hanging on in there and sticking with it. You did it! 🎉🥳🍾
Absolutely amazing! 5 years but all worth it! Enjoy the wonderful feeling 🎊🥳🎊
Congrats Elizabeth! That's wonderful news! Do you happen to know your genetic markers or mutational status? Obviously CLL is very heterogenous, but I'd be curious if you have that info and can add it to this remarkable post.
Unfortunately I don't have this information. Sorry.
Just curious. Sorry to be a nosy parker, but I always want to know everything about everybody's CLL 😀😀
Congratulations!🎉🎉🎉🎉🎉
Awesome news Elizabetha. I love the way you brits/irish/scottish string words together. You say a “having wee bit of bubbly”, whereas we might say “downing a case of diet beer”. Y’all definitely own the English language. Lol The phrase ,“wee bit of alcohol’’, appears nowhere in the Cajun language
I suspect, and admittedly have no proof of it, is that “wee bit of bubbly”, in your language means that you are well into your second, and well deserved, bottle of fizz.
Congrats on the good news.
My wee bit of bubbly was very enjoyable Cajunjeff! It was then followed by a "wee swally" It was a night to celebrate, thanks for your good wishes 🤗
❤️🧡❤️🧡❤️🧡 Congratulations!
Congratulations, great news 🥂 I hope you enjoyed the fizz. May yourMRD last for a long time.
Best to you, robin
I believe they have been running a trial on maintenance treatment or staying off treatment. Also, I know that in Flair they have been looking at protocols to continue treatment after MRD to push the disease into a deep remissions. There was some research on that published recently.
Yes, there is a new trial ,STATIC , which I asked about yesterday but at the moment my hospital isn't one of the centres which is involved. Consultant checking when they might be and I will get more information at my next appointment.
I expect they become a centre for STATIC when they have a patient on STATIC. The list of UK hospitals for FLAIR seems to be endless, nearly 100 out 259 UK hospital trusts.
They have reported 4 year results, 92.7% had reached uMRD4 in blood at 5 years. They will have to revise that up.
Anyone that didn't reach uMRD4 by 30 months would be on treatment for the full 6 years.
All patients on V+I or FCR were u-CLL or m-CLL without TP53/17p aberrations. m-CLL patients took longer to reach uMRD4 by 48 months, 60% m-CLL, 80% u-CLL. Median time on treamtent for u-CLL was 24 months (the minium), with a mean of 3 years. For m-CLL the median and mean was 4 years.
For m-CLL the results of FLAIR show no significant difference to the results of fixed duration 15 cycles, 60 week CAPTIVATE FD. For u-CLL the results appear to be very good, remarkably and unusually better than m-CLL but at the 4 year reporting 20% were still on treatment, 5% had stopped in the previous 12 months, 20% 1 year and 55% 2 years, against all patients 3 years off treatment for short duration therapies.
There is a separate arm that started in 2021 with 64 subjects that have TP53/17p aberrations split 32/32 between Ibrutinib mono or V+I.
fantastic news!!!
Well done. Definitely a day to celebrate 🥂.
Congratulations! Have 2 glasses if you want!
Great feeling, isn't it?? Congrats!
Yes, the reaction of my family was tears all around .😭😍
Elizabetha -
Congratulations! What a journey you've been on!
Did they say how much longer you would be on treatment?
=seymour=
Thanks Seymour. No ,unfortunately my consultant was going to have to check and get back to me as the trial drugs are usually given for double the time it takes to reach MRD negative. The expectation was that it could take up to 3years therefore the trial protocol was a duration of 6years. I have taken 5years to get to this point so he was scratching his head a little. We should know more at my next appointment however he seemed to think that I might stay on Ibrutinib and drop the Venetoclax.
He was very excited as he didn't think that I would get there and suspects that this might be the longest time to get to MRD negative.
I think he was more pleased than I was! 😂
Elizabetha -
Wasn't there an absolute limit of 6 years on the study?
=seymour=
Yes, so consultant not sure about what to do with me! It's the story of my life, always the awkward one 😂
Elizabetha -
I hope they can stop treatment. You have endured twice the drugs that most people get. If they numbers start going back up, they can restart one or both drugs in theory. But ask them directly.
=seymour=
That's fantastic news, Elizabetha. I'm so pleased for you. Hope the bubbly worked its magic!
Congratulations! Enjoy the bubbly. You earned it!
loved hearing about your success. You may be the awkward one but you have done it!!
fabulous!!!!!!! 🤗🎉🎉
Hello Elizabeth’s Glad to hear your treatment is going well. I haven’t been on this website for a very very long time but I do remember meeting you at a Glasgow conference several years ago. I’m still in my village between Perth and Dundee, and I’m still on W&W. I caught Covid in Australia last year. Fortunately, I was lucky that the symptoms were those of a bad cold. All good wishes. Tricia
Hi Tricia, such a long time ago. I am not posting very much as there hasn't really been much to say for last couple of years while on treatment. I remember meeting you at the Glasgow conference, I hope that you continue treatment free for a long time. Fingers crossed 😘
Just got MRD negative 🎉
MRD Negative - no sweeter words!
Flair trial ends MRD negative 
MRD testing 
MRD negative
