flair trial started today: Hi feeling positive... - CLL Support

CLL Support

22,477 members38,616 posts

flair trial started today

buzzybab profile image
12 Replies

Hi feeling positive after a 5 year w&w today I started my trial of inbrutinib and venetoclax for 1st line treatment here in uk On ibrutinib for 8 weeks then add venetoclax over a few weeks untill I reach higher dose . Been reading posts on treatment and Im hoping for a minimum side effect journey

Written by
buzzybab profile image
buzzybab
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Mosaicgigi profile image
Mosaicgigi

Best of luck!

Jam66 profile image
Jam66

I to am on the flair trial in the UK ,and also was very lucky to get ibrutinib and venetoclax .I have been on ibrutinib and the maximum dose of venetoclax now for 3 months .I have had an excellent response to this treatment with virtually no side effects.The most important thing is to keep well hydrated while taking them .Best of luck and hope you do well on this treatment.

Oleboyredw-uk profile image
Oleboyredw-uk

I hope things go well for you. I too am on Ibrutinib and Venetoclax, but in the Clarity trial. The arm of the Flair trial you are on is the same as the Clarity trial. I started on 15th Feb with my Ibrutinib and added Venetoclax in April.

Seems pretty good to me so far.

best, rob

I282much profile image
I282much

My husband started this combo in July and has had a fabulous response with no side effects to speak of!

Great way to start the new year!

North Carolina, USA

BJollie profile image
BJollie in reply to I282much

Great news! I’m in Apex, NC and hope to be on this combo soon. May I ask which doc your husband is seeing & are they in NC? Thx, Jollie

I282much profile image
I282much in reply to BJollie

Hi Jollie,

We see Dr Ghosh at Levine in Charlotte....I can’t say enough good things about the trial and Levine!

L

BJollie profile image
BJollie in reply to I282much

Thanks! Just sent you a message

Mosaicgigi profile image
Mosaicgigi

Best of luck! Keep us updated.

Daydawncres profile image
Daydawncres

Hi I have been on the same trial since June - started Venetoclax in October - the results are amazing and no noticeable side effects at all..good luck with it.

Emcee1 profile image
Emcee1

Started my I V trial a week ago. Not sure if I am drinking enough or too much worst side effect at this time is stomach bloating. Feel like I ate three meals all the time and also have soft stool. Good luck to all on these trials as we hopefully will lay the groundwork for those to come.

Workers profile image
Workers

Hi I started my treatment of ibrutinib yesterday ,then onto venetoclax ,have you had any side effects ? And how are you feeling ?

buzzybab profile image
buzzybab

Hi firstly good luck to you I hope your journey will be smooth like mine. After 9 months all my number's are within the normal range waiting for the results of bone marrow and scan on November 26th. I have not had many side affects just aches and pains in joints plus a bit of nausea odd bruises also mouth ulcers but nothing I can't cope with. Now back in full time work and feeling great.

You may also like...

No longer eligible for FLAIR trial

continue with the trial. There should have been a review of the genetics test before starting as...

Flair trial

trying different drug treatments - does that mean the nhs will change their treatment protocols and...

Flair trial

about it until i read the side effects which really scared me. Has anyone had any negative...

Flair Trial

borderline for starting treatment which if my bloods deteriorate further, will be starting after my...

Flair trial ends MRD negative

years my flair trial on venetaclax and ibrutinib finally reached an end with MRD reached . Really...