Flair trial end after 6 years.

[annsathome]

Hi, haven’t posted in a while. My husband has been on the Flair trial taking Ibrutinib after an initial round of Rituximab. His part in the trial has now finished after 6years. He has tolerated the Ibrutinib very well with very few problems. Bloods all good and MRD very low. He would have liked to have stayed on Ibrutinib but there have apparently been heart and blood pressure problems with people on the drug long term. ( he does have a defibrillator fitted as he has an irregular rhythm but nothing to do with the lbrutinib) He now has a CT scan booked in a few weeks and will have another a month after. So back on watch and wait which is a bit daunting after so many good years. If or when needed his next option will be Rituximab again then Ventoclax.

Would be very interested to know if anyone is in a similar position.

Luckily we have every faith in his Consultant at Bournemouth hospital.

Ann

[lankisterguy Volunteer]

Hi annsathome,

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Len

[fapumpkin]

Thank you for writing your post. I was thinking of writing a post asking about those who have been on the Flair trial a longtime. I will have been on the same arm of the trial as your partner for 5 years next June. Fingers crossed I have not had any cardiology issues. My last haematologist (just retired) said that I would be kept on Ibrutinib at the end of the trial if it was still effective treatment for myself, if not then I would be treated with what your partner has been offered but no return to w&w was mentioned.

[annmcgowan in reply to fapumpkin]

Hi fapumpkin I am 2.5 years into Ibrutinib in the flair trial. I asked the same question as you and received the same answer. Like you so far 🤞I have had no cardiac issues.

Ann

[Jm954 Administrator]

Hi,

Are you saying that his Ibrutinib has been stopped and he's not on anything at all now?

Jackie

[annsathome in reply to Jm954]

Hi Jackie, yes, his Ibrutinib has stopped. (We actually thought the trial was 7years so had no idea when went in for his appointment last week ) His Consultant explained about the long term effects and said it was not the best idea to stay on the Ibrutinib and that Ventoclax was a better option if needed and that he could take that for 2 years. She is one of the “authors “ of the trial and was telling us about other trials starting soon with newer drugs which she described as “the son of” of the ones out now. She has always called Ibrutinib a wonder drug. Sorry l’m rambling on.

He still takes an antibiotic every day and aciclover. So everything crossed he will stay well .Luckily he doesn’t worry, as long as he can play golf, l worry for him.😁

Ann

[Jm954 Administrator in reply to annsathome]

Thanks Ann, you're not rambling at all. I think I'm surprised and disappointed that they have stopped his Ibrutinib as it has been working so well for him.

[zaax]

I was told (last year) that after the end of the trial NICE had said I would be kept on Ibrutinib.

There are better BTK inhibitors like Acalabrutinib ,which reportable are less problematic

[gogscll]

Thanks for posting this, Ann. My dad (71) is in a similar situation; his six years will be up in February. He is planning to ask about this at his telephone appointment in November. I’m hoping he will be kept on ibrutinib, although he has had some cardiac issues, so I’m wondering what the outcome will be.

[KAS8]

I was on ibruitinib but it failed after about 7 months and was lucky to get venetoclax. That got my levels low very quickly which enabled me to have a stem cell transplant. I found venetoclax easier than ibruitinib with less side effects.

[Test_Tech in reply to KAS8]

Hi KAS8,

Was the stem cell treatment for your CLL?

[KAS8 in reply to Test_Tech]

Yes. I had TP53 and 17p deletion so high risk CLL. Was only 47 and chemo naive so considered young and healthy enough to cope with the treatment