Hi I am coming up to year 6 on the Flair trial, on the ibrutinib and rituximab arm.
Ibrutinib has worked very well for me with none of the major side effects, but many irritating minor side effects.
I am moving to the Static trial where I will be off or on ibrutinib through choice or randomisation.
All patients on ibrutinib can choose to stay on it and still enter the trial on the on ibrutinib arm.
This is my dilemma do I stick with what I know works for me or do I go and take the 50% risk of being allocated to the off ibrutinib arm.
There are pros and cons to both arms of the trial. On ibrutinib can over time lead to resistance, but may not!! Off ibrutinib could reduce resistance or may not. This is the purpose of the trial to see if drug holidays reduce the risks of ibrutinib resistance.
I feel blessed to have been on the Flair trial and finding a drug that worked for me, first time around.
I feel doubly blessed on entering the Static trial where I will be part of learning about how ibrutinib would be best administered in the future.
I am pleased to have a choice but just don’t know which choice to make.
If there are others out there trying to make the same choice, have already made it, or are already on the trial I would appreciate their views and experiences.
Ann
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annmcgowan
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Ann, I didn't want to ignore your very legitimate (and difficult) question, but I have neither an answer or any meaningful advice. Because we are all different this has to be an individual choice. I suppose if I were in your position I might wonder, "if I wasn't on the trial, would I even consider stopping taking Ibrutinib?". As always It's probably best to talk it through with your consultant. Good luck.
Ann, slightly tongue in cheek, but have you considered asking AI. That is supposed to sift through all the published data and objectively reach a conclusion. Maybe that's what we will all be doing in a few years time!!
I think about this a lot. I too have been on Ibrutinib for 6 years. And I chose to stay on the Ibrutinib….but for one big reason. The static trial still pays for the drug. Having to pay for the drug, even with Medicare and my supplement would change our lifestyle. I sometimes worry about growing resistant to the drug, but there will probably be something else as good, or maybe even better by that time.
Thanks for your reply Becky. After the many replies I have received I can at least understand why I am struggling to make this decision. I would have made the same choice as you in your situation.
Hello Ann. I am at the same point as you. I was on the flair trial and coming up to 6 years in May 2024. However, after a first bout of Afib my ibrutinib was stopped last month, 6 months early. I am going to see how long things last before agreeing course of action with the trial docs, if/ when bloods start to deteriorate again. I have not been formally added to the Static trial though.
Hi Bmv01 I was about to post again as my team have told me I will not have to choose. They told me I would have choice in error. Choosing is only for those who would be vulnerable coming off. The computer will choose for me. If I had needed to choose I had decided I would stay on ibrutinib.
Good luck to you and any choices you may or may not have to make. Let us know.
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