Hi, I would like to share my excitement with you all .I have been on Venetoclax and Ibrutanib for 18 months now and have just been told my bone marrow and blood are to normal and I should be off my drugs in November ,nice Christmas present I feel !.I have had a few side effects ,slight sickness ,terrible cramp and the bonus curly hair ! .
Excited : Hi, I would like to share my... - CLL Support
Brilliant news! Long may your remission last 😊
Well done and no doubt worth those minor side effects.
That’s great news.
Fabulous news! Congratulations 🎈🎊🎉
Well done 👍🏻
Where you on Full dose Ibruntnib and Venetoclax for entire 18 months ?
Stay safe and stay well
How sweet it is!!! Congratulations and wishing you a very, very long remission!!🥂
Congratulations 🎉🍾🎊🎈. Amazing news.
Great news. x
Wonderful news, very pleased for you.
Wonderful and inspiring good luck.
Congratulations and celebrations! ✌
thats good news.what a christmas present.
Fabulous News 🙏🏻💕👌🏼
Great news. Well done!. Were you on a trial? On my trial (same drugs) I believe I have to stay on the drugs after MRD for twice as long as I have been receiving treatment. Lovely for you to get off them sooner and so pleased for you.
Hi , yes I am on a trial and like you I was lead to believe the same but it is 2 years in November and I’m told that is ok ,so fingers crossed .Where are you ? Regards Sue
Are you on the Flair trial? I am based in Scotland.
Yes I am , I’m in Herefordshire
I am excited for you but also for me if the rules of the Flair trial may have changed so that it is no longer required to stay on the drugs for another year or two after getting the all clear. That would be such a bonus! Anyway, best wishes to you and hope it continues to go well for you.
🤞for you too , how long have you been on the trial and how are you doing ?
Sorry for the slow reply and hope all has gone well for you since our last conversation. I was diagnosed in Jan 2018 and started on the Flair trial (I & V) in Sept 2019 so have been on it for about 11 months. My blood test results have always been reported as being good so I was a bit disappointed when the 9 month test including the BMB did not come back to say I had reached MRD (or however you say this). I have another appointment with the consultant on 24th Sept so will hopefully find out more then as I was a bit taken aback last time so did not ask the questions I should have. For when I reach the point when I can come off the drugs, I wonder if there are any statistics on how many people stay healthy after this particular treatment? Perhaps the trial is still too new to be able to give any meaningful long term outcomes. Anyway, all the very best to you.
Brilliant!! Great to hear such positive news. Best wishes.
Fantastic news! Enjoy every moment!
Stay safe and well.
Curly hair rocks ! That is such uplifting news for you and all of us. So very happy for you . Onwards and upwards . Emer
I’ve also been on I&V for 18 months on the Flair Trial but my trial seems to have ground to a halt since March and no testing has been carried out. My last MRD testing (flow & BMB) was done last Nov and I was close to UMRD then. This must really skew up the trial results.
My blood results are normal but it’s very disappointing that formal trial testing has been suspended. I have no idea when it will be resumed and my haematology unit are not even conducting routine FBC’s. Mine are being done monthly at my GP surgery.
Hi , where are you based ?, I’m in Herefordshire but being treated in Gloucestershire ad it was the nearest place for the trial . I haven’t missed one blood test and I’ve also had my bone marrow test (ugh) my team are fantastic and so helpful , I do wish you all the luck
Wonderful news! It gives me hope!
So thrilled for you!!! Wishing you a very long and extremely uneventful remission!!!
So happy for you !!! 👍🎉😁
Having a drug free long remission is a dream comes through for all of us and your dream is coming in November 👍🏻🎉
Great news, excellent!
Wonderful news, gives us all hope. Keep giving us those good vibes of encouragement.
Congratulations.........that's proving to be a fantastic combination.
Great news!! 🎉
thanks for sharing.....we all need to hear good news....so very happy for you...stay well and stay safe
Curious to know if you are IGVH mutated or Unmutated?
Nice bonus. Good for you
Fabulous news! 💖😘
Terrific. Wonderful news.
Very happy for you. Congratulation!
Congratulations to you! Best wishes for continued good health!
Congratulations ! I'm on straight Venetoclax - not part of any trial - and have also had good results. Like you, looking forward to being drug-free.
Incredibly happy for you!!! Fantastic!!!! Cannot think of a better a Christmas gift than that!!!
Oh goodness I am so pleased to read this, gives us all hope and as you say, what better Christmas gift could you look forward to. Thank you for sharing.