Flair trial ends MRD negative : After 3 1/... - CLL Support

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Flair trial ends MRD negative

buzzybab profile image

After 3 1/2 years my flair trial on venetaclax and ibrutinib finally reached an end with MRD reached . Really pleased though a little apprehensive being back in watch and wait and wondering when cll will rear it’s head again,the consultant said she had no findings to go on this arm of the trial but hopefully will not need treatment for years so fingers crossed .

Looking back on my journey started just over 8yrs ago I can remember the GP telling me you have chronic lymphocytic leukaemia but not to worry my mother had it for years and didn’t need treatment (well she got that wrong) and sent me off with a print out saying you will get a appointment from the hospital soon to confirm it.I went home sobbed and sobbed waited for my husband to come home. But now after all the pills and hospital visits everything looks Rosie the side effects from the drugs for me were not too bad the one I found most annoying was the nausea but the anti sickness medication helped.

So I wish you all on the trial the same success take care fingers crossed they will find a cure.

34 Replies

An awesome result! Thanks for sharing!

Newdawn profile image
NewdawnAdministrator

Fantastic result Bab! I’m delighted for you and long may it last! 😊

Newdawn

Wonderful news and praying that's all you will have to tell us for years and years to come (maybe indefinite, who knows 🙂)❤

Fantastic news and it gives me great hope that my son will also hear this fantastic news in the not too distant future. Wishing you many, many years of watch and wait! 🤗

Fantastic news and I wish you a long and healthy remission.

Very good news indeed. Now go and enjoy life and put CLL out of your mind.

That mrd test was done only on peripheral blood? Also, was that done via Flow test or some other method?

Newdawn profile image
NewdawnAdministrator in reply to Justasheet1

The Flair trial normally does testing on both peripheral blood (by flow) and a BMB to very exacting levels Jeff. I wondered if the follow on BMB had been done. It looks to be 0.0043 in the blood that’s been achieved from the limited info I can see which is most certainly uMRD level 😊

Newdawn

buzzybab profile image
buzzybab in reply to Justasheet1

Hi yes sorry on bone marrow too the trial nurse gave me a copy of the test to keep

Justasheet1 profile image
Justasheet1 in reply to buzzybab

Well then, uMRD in blood and marrow!

Congrats is an understatement!

Well done fantastic result for you.Ann

Brilliant

Fantastic!

Congrats 🎉

You made it to the final stretch and with great success. Fantastic news! I hope the apprehension doesn't get in the way of celebrating your current status and your achievements. Think of watch and wait as watch and monitor if that helps.

🙂 im so happy for you may it last forever.

CLLerinOz profile image
CLLerinOzVolunteer

🎉🎉🎉

Great news! Wishing you a long remission.

Brilliant news!! xx

Great news.jenny uk

PaulaS profile image
PaulaSVolunteer

Great to hear that, Buzzybab. 😀 Rejoicing with you,

Paula

Thanks to everyone who joined that trial. The results will change the treatment and survival outcome for others currently on treatment and for those that are not. These trials will also help 100’s of thousands of people yet to be diagnosed.

Great news for you

Fab outcome for you! May you never need treatment again! 😊

Great news, good luck for the future

Just wonderful to hear. So pleased.

More good news, thank you! I hope it stays there. Cx

Woke up to this email & just want you to know you are thought of & prayed for and appreciated!!! Be well & thank you for sharing, it helps so many & most of all YAY!!!!

Big congrats to YOU !!! I made it over the finish line in my 2 yr I/V trial 6 months ago.My apprehension has tried to convince me I'm in W and Wait again also BUT thanks

to SamamthaJane's suggestion W and Monitor feels much better !!!!

So glad you can finally say goodbye to your I/V side effects. As they say

good riddance but this rubbish was GOOD STUFF Happy for you in your remission.

Catnap7

This was a great post to read this morning CONGRATULATIONS 👏 🥂🎉🍾

So happy to hear this! My husband is currently doing Venetoclax and Obinituzimab so it's nice to hear when someone has had a good outcome. He has two cycles of Obinituzimab left and then just Venetoclax. I wish you a LONG watch and wait and pray that you have peace and comfort and can enjoy this time with your family. Many blessings for you!!!

Good Show buzzybab!

JM

Hurray! That is wonderful!

That’s Great! Buzzybab enjoy life and forget about CLL. Have a wonderful summer! I believe that feeling happy, living healthy life ( food and activities that make your heart vibrant and full of joy and love ) can prevent relapse of disease ❤️ All the best! Temida

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