In my last post I mentioned that It looks likely that I will be starting treatment in June. IN the meanwhile, I have been in touch with the consultant who I went to for a second opinion just after diagnosis. He can see me next week with the possibility of starting a trial .... FLAIR.

I have read so many positive things about FCR that now I feel uncertain about a trail.

The other issue is we live at least two hours drive from the nearest hospital that will be taking part in the trial.

What advice can you all give me?

11 Replies

  • Bethan49,

    Have you had a FISH test done?


  • No but am going to ask about it..

    I have had a lymph node removed (nearly 10 months ago) and have a bone marrow biopsy in Tuesday so will ask about it at the next appt.

    What should I look for?

    thank you!

  • I would go into the trial and get tested, if you get randomized to the fludarabine, cyclophosphamide, rituxan (FCR) arm, them simply request to start treatment closer to home, if you want...

    Here is a good page about clinical trials...the video is from the patient perspective


  • Great Chris..that's the way I'm thinking. Thanks for the link x

  • Hi Bethan,

    Im on the Flair trial, started in February and drew the FCR arm. Currently had 4 treatments and on hold at the moment pending an increase in my neutrophils. Been hospitalised twice and put immediately on iv anti biotics.

    The way I viewed the Flair trial for me was a win situation i.e. if i didn't go on the trial I could only have FCR. By going on the trial, albeit I didn't draw Ibrutinib, I am monitored all times by the trials nurse and also the lymphoma nurse. The standard of care I am receiving is I feel second to none. You really have nothing to loose, as you can't get Ibrutinib as first line treatment at the moment.

    Hope this helps,


  • Thank you so much..there's just so much to consider. Will keep you posted. Good luck with your treatment x

  • Very best wishes to you.Please keep us posted Bethan.


  • Best wishes Bethan in your decision and treatment!


  • I'm signing the Flair forms in 3 weeks time, and I totally agree with your approach.

    You must go into this type of trial knowing that both arms have positive advantages. Either way I hope to be winning.


  • Good luck Andy. Let's get this thing beaten😊

  • Started flair trial last August and had no difficult side effects, given all clear in April, bit of tiredness and manageable aches and pains but otherwise well enough, good luck whatever you decide, Terry

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