Flair Trial Phase 3

[Carpenters52]

Hello everyone,

I hope your all well?

Just a quick update, I am having. Ct, Bloods , and bone Marrow B next week.

And if all is well, I will be starting the Flair trial on the 13th of June!

So will keep you updated.

Perhaps any of you who have been taking part, would let me know how you are fairing!

Best regards to you all,

Kelly x

[terryI_uk]

4 months since finished the rituximab, still keeping with 3 x 140mg ibrutinib, bloods, ct and bmb all clear last month, some odd side effects other than regularly reported aches and pains, quite often get sore mouth and also sores under skin on fingers, (boils?), aches become manageable after a while but tiredness remains, hope your treatment goes well, Terry

[FlaKeys in reply to terryI_uk]

Hello! My husband started the FLAIR trial in December. He was randomized to the Ibrutinib arm. Cycle one of Ibrutinib was a little bit difficult for him. He got a rash that covered 90% of his body and severe joint and muscle cramps. The Ibrutinib was stopped for one week and the rash went away very quickly. He then restarted the Ibrutinib full dose. He got a very slight rash that was totally controlled by Benedryl. That was the last of the rash. Over the last 5 months, he has had occasional joint pain but a steroid dose pack eliminated the problem. Otherwise, he feels totally normal! Not much fatigue at all. No reactions from the Rituxan. All of his enlarged lymph nodes are now "normal" in size. His ALC was still high as he finished his 5th cycle a week ago but all rbc, platelet count, and hemoglobin are all improving. Dr says that the lymphocytosis caused by the Ibrutinib is normal and we should not worry about it. (I am getting better at not worrying!). In fact, the dr says that prolonged lymphocytosis occurs in some people and does not indicate a poor outcome.

My advice is this...Listen to your body and rest when you get fatigued.. Eat well and exercise. Talk with your dr about any side effects...they may be able to be controlled. Wash your hands often. Enjoy life! Ibrutinib has worked wonders for us!

Wishing you peace!

[Carpenters52 in reply to terryI_uk]

Dear Terry, many thanks for sharing you experience on the trial!

Glad to hear your doing okay!

We keep smiling don't we!

regards

Kelly

[Aklambert22]

I'm due to start the Flair trial next month, but I cannot help worrying that nearly everyone talks of tiredness and muscle pain on the Ibrutinib arm of the trial, and it seems to be accepted as the norm. I don't have either at the moment (don't have any of the other regular symptoms either), so, I'm actually thinking the FCR arm would be more beneficial.

Sorry Kelly, moan over. Hope you fair well.

Andy

[gardening-girl in reply to Aklambert22]

Hi Andy, I've been on 420 mg ibrutinib daily for 11 months and am experiencing no side effects other than brittle nails and curly hair. No tiredness and muscle pain, no joint pain, no more frequent than usual muscle cramps, no A-fib and no chemo brain, something I did experience 19 years ago with fludarabine.

You are likely to be just fine on the ibrutinib arm of the Flair trial!

Best Wishes,

GardeningGirl from Tennessee, USA

[Aklambert in reply to gardening-girl]

Great to hear that GG.

I've wondered if it is a case of those suffering will post while those not won't.

And curly hair? Someone who is folically challenge like me would love that!

Andy

[Hidden in reply to Aklambert]

> curly hair?

Yep. After a lifetime of "straight as a wire brush" I've now got some wave. Women ask me What I Use -- which is whatever bar of soap is by the tub.

Re joint pain. Rituxan is well known to cause muscle/joint pain. If they are giving it with ibrutinim it may be the culprit. I never noticed any increase in muscle or joint pains when starting ibrutinib.

[Carpenters52 in reply to Aklambert22]

Hi Andy,

Yes I must say its all a bit stomach churning isn't it.!

I feel like I am stopping the world & getting off for Six months.

Not looking forward to the Bone Marrow Biopsy next week!

Let me know how you are doing?

All the Best.

Kelly

[Aklambert22 in reply to Carpenters52]

Don't mentioned that Kelly!

I was about to start the Idesalisib trial that got cancelled a couple of months ago, and had already had my bone marrow aspirate, so got that to look forward to again....oh joy!

Having said that it wasn't too bad.

Andy