FLAIR trial. What comes next?: the FLAIR trial... - CLL Support

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FLAIR trial. What comes next?

Flabal profile image
6 Replies

the FLAIR trial lasts for 6 years. I’m currently on my 5th year and although it hasn’t been perfect I’d rather continue my medication once my trial time is over. Have any of you finished your 6 year period. If so how has been the transition? If you were on ibrutinib successfully were you able to continue taking it? Starting to feel a little anxious about this so any input will be most appreciated. Thank you.

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Flabal
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Jm954 profile image
Jm954Administrator

Hi,

my story is probably very different to most but I developed 7cm nodes under my arms within 5 days of stopping it and it would appear that I was already starting to relapse as I had two BTKi mutations when they tested for them. Had surgery to exclude Richters, then two other unsuccessful treatments before starting V+R.

It appears that most people are fine for a couple of years and are then, when their lymph counts start to rise again, able to restart Ibrutinib or another BTKi successfully so try not to worry.

The follow on trial, called STATIC is now opening up around the country and I'll do a post on that very soon.

Jackie

KrisBren01 profile image
KrisBren01 in reply to Jm954

Good morning Jackie,Just noticed you have been on V +R how was that? I'm due to start on that in the next few weeks and I am rather apprehensive. I was originally on the flair trial which came to an end in January 21 after 6 years. I was originally told I would be eligible for the Static trial but now I'm not as my CLL as become active again. I am worried that if V+R failed or my CLL became active again what other treatment options would be available. This will only be my 2nd treatment. Sorry to be a nervous Nellie.

Regards

Sue x

annmcgowan profile image
annmcgowan

Hi I am in the same position as you 4.9 year on Flair and Ibrutinib. I spoke with my haematologist last week and he said that the Static trial was starting up in my area and they expect me to go onto that. 🤞all goes well until then for us both. I would discuss static with your haematologist it would help to reassure you.

Ann

Jm954 profile image
Jm954Administrator in reply to annmcgowan

Ann, see my STATIC post that I've just put up

Jackie

annmcgowan profile image
annmcgowan

Thanks Jackie very helpful.

Take care

Ann

chillsome profile image
chillsome

Please can I ask which drugs you were/are on in Flair trial?

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