STATIC dilemma

[annmcgowan]

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

[zaax]

My 6 years ends in March. I was under the impression that if it came back they put you back on it

[annmcgowan in reply to zaax]

Yes they do it is a pause rather than stop. Have you made a decision re your own future treatment?

Ann

Ann

[RogerPinner]

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.

Roger

[annmcgowan in reply to RogerPinner]

Thanks Roger, that’s a good question. I wouldn’t stop if I wasn’t on the trial. This was my gut reaction.

Your right we are all different so have to do what’s right for us.

I have discussed with my consultant who feels I will do well either way. So no real need to stop.

I am lucky to have a choice is how I feel but it’s not an easy one.

Ann

[RogerPinner in reply to annmcgowan]

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!!

Roger

[annmcgowan in reply to RogerPinner]

Thanks Roger I will research this.

Ann

[BeckyLUSA]

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.

[annmcgowan]

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.

Take care

Ann

[Graham64]

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.

[annmcgowan in reply to Graham64]

Hi Graham sorry to hear you have had Afib after so long on ibrutinib. Has it stopped since you came off your meds or will it continue?

I guess this is what the trial is all about. They need to know if coming off can prevent these side effects.

Some people who have replied have been off and bloods have remained stable for over 2 years, so that’s good news. I hope you have a long remission.

Good luck to you. Thank you for your reply.

Ann

[Graham64 in reply to annmcgowan]

Hi Ann. The Afib hasn't happened again, but I have been prescribed a blood thinner since it first happened, so it could be that keeping it in check.

I am hoping bloods will remain normal for a few years. I will update if anything changes.

Hope things go well for you. Kind regards. Graham

[annmcgowan]

Hi Graham that’s good news.

Good luck

Ann

[Bmv01]

Also in the same boat .. not sure if to discontinue Ibrutinib 140 or stick with it ...

[annmcgowan]

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.

Take care

Ann