I was diagnosed with cll just before Christmas 2017 and have just had the second appointment with my haematologist and am now borderline for starting treatment which if my bloods deteriorate further, will be starting after my July appointment I have been offered a Clinical trial called Flair which is running here in the U.K. Has anybody any experience of this trial? I listened to a radio program about it and results sound very promising. So any thoughts good or bad please share. Thank you
Flair Trial: I was diagnosed with cll just... - CLL Support
I'm in the FLAIR study and have been for 30 months and I would definitely recommend it.
If you don't go in the trial you will presumable get FCR chemotherapy which is still the gold standard treatment. In FLAIR you have a out of 4 chance of getting a novel, targeted treatment and even a combination of novel treatments. You will be randomly allocated one of four treatments which are - FCR (Fludarabine, Cyclophosphamide and Rituximab), Ibrutinib +Rituximab, Ibrutinib monotherapy and Ibrutinib + Venetoclax.
I was allocated Ibrutinib and Rituximab which has worked well for me.
You will have your CLL profile done (genetics, mutational status etc) and be well looked after in a clinical trial.
Others in this group will be able to tell you about their own experiences but, even though I developed hypertension, mine has been entirely positive.
Good luck and best wishes whatever you decide.
Go for it. in to my 3rd week for me, feel a lot better than I was 3 weeks ago.
It sounds like an exciting study. I like the four arms of the study. I really wish that ibrutinib was available Frontline for high risk CLL (including unmutated IGVH, 17p deletion, TP53, complex karyotype, etc.). The research I have seen has me convinced that FCR is not the optimal treatment for high risk CLL. But that is just my opinion, and it means nothing. I just hope individuals with CLL will have access to more options and more effective treatments soon. There are many new promising medications being studied now. There is hope.
In the UK it is, as FCR does not wotk if your 17p deleted its straight on to Ibrutinb.
I have been in the Flair trial for 7 months. I was randomised to the Ibrutinib arm, which is what I was hoping for as I had read a bit about it and it sounded the best option. I have not had any side effects to speak of, just the odd little muscle ache. My husband who also has CLL has been having a pretty rough time, trying different meds which have for one reason or another not been successful, our haematologist has indicated that she is hoping to start him on Ibrutinib when his latest set back is overcome, hopefully in the next few weeks.
I'm on the Flair trial. Got randomised to FCR and started chemo in April 2016. Achieved MRDneg and so far, so good. I'd suggest two reasons for participating if you're eligible. 1: You'll be taking part in something that will help more people than just yourself. 2: I suspect the trial is scheduling and paying for more tests and checkups than a standard NHS reatment cycle. But I'm not sure...
Hi I am 6 weeks into the FLAIR trial on Ibrutinib and rituximab. I am doing very well and would also recommend it.
Hi. I am 4 weeks into the Flair trial - randomised with lone Ibrutinib. Despite complications with my existing atrial fibrilation and anaemia problems, I am still grateful to have been given access to the Trial.
I have just finished six months of FCR treatment on the Flair Trial at Christie Hospital. I would strongly recommend you join this, as the care you will receive is more thorough than outside a Trial. You will be randomised for one of four treatments including the newer non chemo drugs, Ibrutinib and Venetoclax.
Best of luck,
Hi. I’ve written more about first line treatment options and why when I need treatment I will definitely consider flair here: healthunlocked.com/cllsuppo...
Hi,I have been on the flair trial for 8 months.I was randomised for the ibrutinib+ venetoclax arm.I have been able to carry on with everyday life as normal with very few side effects.I have a bone marrow biopsy in a couple of weeks time to see if I'm MRD negative.The care team that I have been under have looked after me well.Its well worth going onto the trial.
Best wishes for what ever you decide
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