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CLL Support Association
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FLAIR Trial allocated Ibrutinib and Rituximab any advice?

Hi just heard I have been allocated the Ibrutinib and Rituximab arm on the FLAIR trial today. I will be starting very soon. Anyone out there been on this arm of the trial or are currently on it? I would welcome any advice from anyone.

Ann

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Are you pleased to have been selected for this arm of the trial Ann? Sorry I can’t help experientially but wanted to wish you well. I bet this feels quite real and scary now.

P.S. do you want to restrict your post to the community?

Newdawn

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Hi Newdawn thanks for the prompt reply and good wishes.

I wasn’t keen to have chemo because of the increased risk of other cancers so I am glad not to have received it.

I decided early on to get a second opinion if I needed treatment from Professor Hilman in Leeds. He recommended the Flair trial but was happy for me to receive chemo as I am 17p non deleted.

I decided to go for FLAIR and let the computer make the decision for me.

I feel fine about it just worried about side effects which I would have felt whatever treatment arm I received.

Just going to keep my fingers crossed and hope for the best outcome with as few side effects as possible.

It does feel real and scary but it has been on hold for so long now I just need to get on with it.

I will keep you updated.

Regards

Ann

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Yes it is very scary. The way I think is that lots of people have gone before and very few have fallen. BUt on the other hand your going to get very good medical care, and apparently more so as we're on a trial.

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I agree with you Zaax. I have changed hospitals since first being diagnosed in 2011. It was necessary as the trial was being run at my current hospital.

I feel very safe with my new CLL specialist who is running the trial which is so important to me. The added care due to being in a trial is also very welcome.

Ann

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I have have been on the Rituximab/ibrutinib arm of the FLAIR trial since June 2016. The first two days of rituximab treatment made me so tired that I slept most of the time, but the remaining treatments did not make me unduly tired. My lymph nodes pretty much returned to normal size after the first month pf treatment and I started to regain the weight I lost.

I initially had quite significant petechiae , but it even though it does still happen intermittently it is just mildl. Diarrhoea was an issue early on but this has subsided. I still have issues with splitting nails, finger tips and heels but find using gloves for most tasks around the home and garden helps along with, Bodyshop hemp hand cream, micropore around nails when breaking is bad (advised by trial nurse not to use nail hardners, as hygiene issues) and use "Gerwhol salve for cracked skin" on heels of feet. Have curly hair now (bit of snapping goes on) but I have embraced this new look. I have felt that the support that the trail nurse has given has been amazing and the monitoring by the trial very reassuring. I do not eat for 2 hours before I take Ibrutinib and I don't eat for half an hour after taking the pills, I find it best for me to take them before I have lunch. I have opted not to drink.

I feel very fortunate and happy that I am on this arm of the trial. Really hope you find the treatment both effective and find a routine that works best for yourself.

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I begin the same treatment tomorrow. Not a trial but prescribed by my oncologist. I'm apprehensive and my heart jumps sometimes at the thought, but I'm 90% bone marrow infiltrated. About time to move quickly. I'll keep checking your post here and see what I can learn. Oh boy!

Lauren

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Hi thank you for your reply which was so reassuring. Glad it is going well for you. Wishing you all the best. Will keep the community informed on how I go.

Regards

Ann

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Good luck Ann!

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Thank you so much.

Ann

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Good luck!

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Thank you.

Ann

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Hi Ann, I've been on the iR arm since August 2015, no reactions to rituximab infusions, need a good book though as quite a long time in the chair! bloods and nodes all normal, still have some aches and pains and fatigue, nails quite brittle, all manageable, hope all goes well for you on the trial, Terry

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Hi Terry,

May you give more details. Are you still on any medication and how often were the Rituximab infusions?

Thank you!

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Hi Paula, I've been taken off medication due to side effects, I can tell you that the rituximab infusions were every 28 days for 6 cycles, the first infusion can be spread over two days because of reaction to the medication, God bless, Terry

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Thanks Terry will start looking out that good book now. Good luck to you too.

Ann

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Hi there

I've been on IT arm of Flair trial since July 2016. No probs with rituximab infusions but they took most of the day. Take things to read and snacks and plenty of water. Mild side effects from Ibrutinib - heartburn, diarrea, occasional heart palpitations - but not too bad and have largely settled down. So far, so good. I didn't feel unwell before treatment but realise that I am now in better place and people tell me I look better which is encouraging. I hope your treatment goes well. Good luck and keep us posted with your progress.

Bw, Caroline

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Thanks Caroline very reassuring. I hope your treatment continues to go well. I will keep you posted. It will be nice to share notes.

Regards

Ann

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I am on a trial similar. Go for it!! You have the arm with the new targeted approach.

I find taking the Imbruvica before bed is the best to minimize side effects,

Mark

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Thanks hoffy good advice. I am happy not to have drawn chemo and will take Ibrutinib at night as suggested.

Good luck keep in touch,

Regards

Ann

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I am possibly going to start the Flair trial soon. Returning for my CT and bone marrow results on Wednesday. There is a complication because I have Atrial Fibrilation but will wait and se what they say.

Good luck.

Netty

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Thank you Netty. I hope you get what you want. Keep us me informed.

Regards

Ann

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Hi Ann,

I know from your previous posts that you are nervous about all of this. I can't add much to the previous good advice but I've been in this arm of the FLAIR trial since October 2015 and just wanted to let you know that most of the side effects wear off after the first few months so hang in there even if it gets a bit tough some days.

I found I slept through most of the rituximab infusions due to the antihistamine they give you which is to avoid a reaction to it. Please let the staff know immediately if you feel unwell in any way.

Joint pain will come and go within a few days if you get it but it's painful whilst it's there. One thing to look out for is hypertension and atrial fibrillation so if you feel light headed or have pounding in your chest please seek advice. Both are now well recognised side effects for a minority of patients and can be managed whilst you stay on Ibrutinib.

You'll be well looked after and monitored in a trial and with a targeted treatmen it's looking optimistic for you.

Please ask any questions as you go along, lots of us have experience with this treatment now. All the best!

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Thank you so much for the reassurance you have provided throughout and in particular today as I am about to start treatment.

I will be seeing my specialist on Tuesday with a view to starting treatment that day.

I am ready to go after such a long wait and have all fingers crossed re side effects.

Your experience has reassured and prepared me for Tuesday and beyond.

Thank you I will keep posting and good luck with your own recovery.

Ann

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