Excited : Hi, I would like to share my... - CLL Support

CLL Support

15,919 members25,705 posts

Excited

Workers
Workers

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 ! .

65 Replies
oldestnewest

Well done.

Ann

Amazing!!!🎊

Good news!🤗

Newdawn
NewdawnAdministrator

Brilliant news! Long may your remission last 😊

Newdawn

Well done and no doubt worth those minor side effects.

Colette

Workers
Workers in reply to mrsjsmith

For sure Colette 😊

That’s great news.

June

Fabulous news! Congratulations 🎈🎊🎉

Nan

Well done 👍🏻

Brilliant news

Excellent news

Where you on Full dose Ibruntnib and Venetoclax for entire 18 months ?

Stay safe and stay well

Workers
Workers in reply to Canuck901

Hi Canuck ,yes I was and still am hopefully stopping in November 😊

How sweet it is!!! Congratulations and wishing you a very, very long remission!!🥂

D.

Congratulations!!!!

Congratulations 🎉🍾🎊🎈. Amazing news.

Sally

Great news. x

Wonderful news, very pleased for you.

Wonderful and inspiring good luck.

Congratulations and celebrations! ✌

Fantastic news!

Fantastic news.

thats good news.what a christmas present.

jennyuk

Great news!

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.

Workers
Workers in reply to chillsome

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

chillsome
chillsome in reply to Workers

Are you on the Flair trial? I am based in Scotland.

Workers
Workers in reply to chillsome

Yes I am , I’m in Herefordshire

chillsome
chillsome in reply to Workers

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.

Workers
Workers in reply to chillsome

🤞for you too , how long have you been on the trial and how are you doing ?

chillsome
chillsome in reply to Workers

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.

Fran 😉

Curly hair rocks ! That is such uplifting news for you and all of us. So very happy for you . Onwards and upwards . Emer

Workers
Workers in reply to Emerfly

Thank you so much I will miss my curls 🤣🤣

Newdawn
NewdawnAdministrator

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.

Best wishes,

Newdawn

Workers
Workers in reply to Newdawn

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

Emerfly
Emerfly in reply to Newdawn

Oh Newdawn I am so disappointed for you to hear that . Another effect of this dreadful pandemic is all the patients with other serious conditions who have been left at sea .

Congratulations

Wonderful news! It gives me hope!

So thrilled for you!!! Wishing you a very long and extremely uneventful remission!!!

Best,

Sandy

So happy for you !!! 👍🎉😁

Catnap7

Congratulations 🥳.

Having a drug free long remission is a dream comes through for all of us and your dream is coming in November 👍🏻🎉

Dana

Workers
Workers in reply to studebaker

Sure is I can’t wait 😊

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.

Fantastic News.

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?

Workers
Workers in reply to Radarrick

Mutated ighv

Nice bonus. Good for you

Congratulations. Enjoy.

Great news!

Fabulous news! 💖😘

Shout it!

Nice Work.

JM

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.

Workers
Workers in reply to Sandywhatsit

🤞, pleased for you too 😊

Great news!!!!

Incredibly happy for you!!! Fantastic!!!! Cannot think of a better a Christmas gift than that!!!

Sandy

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.

You may also like...