FLAIR Trial - FCR for me

FLAIR Trial - FCR for me

Apologies first for the slowness of getting my post out here but thankfully the roller-coaster has just slowed down enough for a few words on my progress with the FLAIR trial.

As explained before FLAIR compares IR (Ibrutinib plus Rituximab) against FCR (Fludarabine, Cyclophosphamide and Rituximab):


The trial is coordinated by Leeds, and end of the week before last the computer in Leeds randomised me into the FCR arm of the trial.

So your first question might be was I disappointed with the computers choice of the traditional FCR choice in my case (it was the one I guessed I’d get).

Well I have to answer no for two reasons.

First would be my digestive system which isn’t the most robust, and isn’t finding FCR easy so the IR choice has always been a worry there (I can park that for the future now).

Second, I have to remember I’m a familial case of CLL, and if I wind the clock back to the late 1980’s we could only dream of treatments like FCR then. (That reminds me of a silly question: Anybody know when Fludarabine plus Cyclophosphamide was first trialled for CLL? I think addition of the Rituximab, which improved the treatment success, came later).

So the way I look at it with my prognostic factors (thought to be not properly mutated, but not yet proved) the FCR should sort me out for say 4-> 5 years, then hopefully the new treatments should be available.

I did have one worry before treatment that my 17p/p53 status test was a little late coming through, which I guess would have excluded me from the trial if I’d failed that one (and your status on that one can I believe change over time).

OK down to the practicalities of the 1st round of treatment this last week.

I’ll post my baseline bloods separately but with a high ALC of 282 I understand you have to be careful with the first round of the Rituximab infusion as there is so much work for it to do with a high ALC and reactions are more likely to occur. The “Ritux” was therefore split over x2 days with a small 100mg trial dose the first day and 600mg dose the second.

Fludarabine and Cyclophosphamide tablets also start at the same time as the Rituximab infusions and last for five days total. I’m real glad to have just completed those after feeling a bit green in the mornings for the last few days.

For the feelings of sickness during the Rituximab infusion I was very lucky and only got a very slight reaction about ½ hour in on the first day. Raising myself up nice and gently using the electric bed controls sorted that out.

The infusion technology these days includes a drip counting machine to control the rate of infusion. On day two about 6 different rates were setup, increasing the rate each time. The machine halts the infusion between each change of flow, to allow time for the treatment staff to perform safety checks for blood pressure, heart rate and temperature etc.

That reminds me of two blunders I made:

On the first day on arriving at hospital I probably didn’t drink enough, despite the fact I was early and had time available. My stupidity. I don’t travel well so don’t tend to drink lots before departing from home.

Second, the infusion machines are battery backed so you can take them with you to the loo. Make sure you unplug from the mains each time (that was close).

Well, how was the Rituximab feel after infusion? I have to say just great by the time I got home.

Normally after a day at work sitting at a desk I’m well glazed over, but felt much better after both the Rituximab infusion days.

What I’m not sure is if the feelings of sickness, worst in the mornings on days 3,4,5 and an upset stomach yesterday come from the Fludarabine and Cyclophosphamide tablets, or the Rituximab. Or some combination ? (no way to experiment on that)

Anyhow I’m feeling great now to sit here and write this post, and thanks for reading.

Other meds to go with the FCR include (Please excuse my simplified explanations):

-Co-Trimoxazole (Antibiotic)

-Allopurinol (Kidney Flushing)

-Metoclopramide (Anti-sickness)

-Odansetron (Anti-sickness)

-Zovirax Aciclovir (Antiviral)

For interest, I would like to understand the difference between the two anti-sickness agents a little better before round 2 (I’ll be taking them both though).

Last thought – how do you get home after treatment? (In my case the hospital is the other side of a city with busy Christmas traffic. On a good day it’s a 50 minute drive from home but over the last few weeks can take 2 hours. For treatment I decided to get there on the train, which was relaxing, and then make up the method to get home after the days treatment.)

Whilst I felt in a state where I could have driven home, I did a simple driving observation test on myself as my good lady wife drove me home. And I have to be totally honest and say I failed dismally on at least two occasions (even with self-assessment), so the answer to that question is now very clear in my mind.

And lastly I did have a truly great treatment team. I was amazed how many patients were in for treatment and all being kindly and efficiently looked after by the staff. All real professionals. Thank you.

Best wishes to all,


24 Replies

  • Hi Ernest,

    Thanks for that most interesting and very comprehensive report on your first FCR treatment and the lead up to it. I do hope that you continue to tolerate it well and do very well on it. There's an increasing number of patients that are having remissions of 10+ years on FCR. With all the interest in Ibrutinib, I'm pleased for you that you are satisfied to be on the FCR arm of FLAIR. It won't be long now and you'll be free of the FCR, while those in the other arm will need to stay on their medication :) .

    I'm sure your journey will be closely followed by our community

    Thanks for writing; may your remission be deep, long and trouble free,


  • I echo all that Neil says Ernie and wish you well for the remainder of your treatment. Thank you for such a helpful, comprehensive report...it's very informative for us pre-treated CLL'ers.

    Sounds like you are in very competent hands indeed.

    Warm regards,


  • Many thanks Neil and Newdawn.

    It is funny to think ahead now to future treatments, and reassuring to read everyone's posts on all the new combinations of inhibitors and mABs (and other ideas) being tried out at the moment.

    Key I guess will be to get everyone's prognostics clearly identified, now the more advanced genetic analysis is hopefully going to start to come on stream in the next year or so. We might know well then the best course to steer.

    Best wishes


  • Hi Ernest,

    It was VERY interesting to read about your first week on FCR. Thank you so much for writing in such vivid detail.

    I suppose it's too early for you to feel any reduction in your enlarged spleen yet?

    Wishing you all the best,


  • Hi Paula,

    Good question.

    First thing I notice is all my visible lymph nodes have now as good as disappeared (strangely in the last year or so they did reduce in size but were still very present). I'm surprised now that the width of my neck no-longer matches that of my head very (long time since I can remember it looking like that).

    For the spleen I'm still inclined to sleep on my LHS, but I think the discomfort has reduced. I have lost a bit more weight with the sickness though so there might be some interaction there. It certainly isn't getting any worse now.

    Today (day 8) of the treatment cycle was the first one where I didn't feel significantly sick and was able to start the day normally which was a big relief. Weighed myself this afternoon, and need to get busy again with the knife and fork :-)

    Best wishes,


  • Thanks for telling us about that, Ernest. It's interesting that your visible lymph nodes have disappeared after just one round of FCR :-) Must be great to have a "proper" neck back!

    You mention sleeping on your LHS because of your spleen... Funny that, because I'm much more comfortable on my RHS, and I'd thought that was because of my spleen being on the LHS (and therefore getting less squashed)... Maybe that was faulty logic - I'll have to think this through

    Anyway, the main thing is that the FCR is working for you, and the nausea has stopped now. I hope you're keeping busy with the knife and fork...

    Best wishes,


  • Hi Paula,

    Great to hear from you. Interesting which side is more comfortable. Perhaps depends if it is the spleen causing the discomfort, or (perhaps in my case) the weight of the spleen on the other internal organs causing them to complain. Now on day 11 I think I can clearly say the spleen is improving. I am quite flabbergasted at the improvements from just one round of treatment. Seems a shame we can't perhaps have just one round of treatment a year (but I'm sure that would not be a good idea) - interesting thought experiment though how that would effect Watch and Wait.

    Happily overdosing on cheese and anything with high fat content at the moment to get the weight back for round 2.

    Best Wishes ,


  • Good question, Ernest. (Is it the spleen itself feeling pain or the organs it might be squashing?). But whatever, I'm really glad it's improving for you. I wish my spleen would shrink a bit.. It's very tender and stopping me eating decent meals. But I can hang on till January...

    Yes it does seem amazing how much just one round of treatment has helped you. Sorry if you've mentioned it before and I've forgotten, but do you know what your FISH test results were? Are you in one of the groups considered to respond well to FCR?

    I agree that it would be great if we could just have one or two rounds of treatment, and that would be enough. Maybe for some people, it IS enough. I wonder how much research has been done, to see what the optimum number of treatments is, for different groups of people, and what difference it makes to length of remission. I suppose it all depends on people's exact genetic makeup/mutations etc... Stuff they don't know enough about, as yet...

    Glad you're able to overdose on cheese and all things fatty.. Not the usual dietary advice, but sounds more fun.

    Best wishes,


  • Hi Paula,

    Good to hear from you.

    I won't try to go into the details of prognostic tests (as I'll get that all wrong), but as best I know I'm thought to be not properly mutated (so at the moment probably not in the group of people for who FCR might be a cure for). Understand as I guessed very early that I had CLL (being a familial case) that original prognostic tests were done too early to get a good test result for IGHV mutation. At the moment my prognostics are mainly based on guesswork from time to treatment (about 4 years in my case). As part of the TRIAL both standard prognostic tests, and more advanced ones will be performed, so hopefully I'll get a better idea.

    Some posts from Chris (Cllcanada) on IGHV (make sure to read all of each thread to find all the bits on IGHV):




    I think there are more - need to keep searching.

    The cheese (and lots of other nice food) may be starting to do the trick.

    Best Wishes,


  • Very well done... glad you are over the FCR speed bump...

    Metoclopramide is a kind of stomach settler...


    Odansetron is an anti nausea drug... it works very well, but take it

    even though you may not have nausea...


  • Thanks Chris for explanation of something that was not totally clear in my mind, as I'd not engaged my brain properly.

    So the Odanstron is more useful for the nausea feeling (in your head / motion sickness). You are asked to save a couple of pills there to take before your next Rituximab infusion session. I was lucky on that one.

    And as you say the Metoclopramide is for the different feeling that is definitely in the stomach (worst in the morning when the drug has run out). Tricky thing there is you get to take up to four doses a day, and with feeling sick first thing I never got in more than three in the day. I do tend to get up several times in the night to visit the bathroom, so for round 2 might experiment to see if I can handle a dose sometime in the early hours . . .

    Many thanks,


  • Great information Ernie ..thank you for sharing you experience with us.Being on watch and wait is quit stressfull so your info helps us understand whats going to happen down the track.Good luck with your treatment and take care.

  • Thanks Stollie. Glad it was helpful.

  • Hi, Stolliegirl, I find it stressful on watch and wait, too, but I was being considered recently for the FLAIR trial, and after much discussion by the professional group it was decided that I didn't need treatment yet. I'm pleased to be back on watch and wait, after all.

  • Hi Ernest, so pleased to hear that you tolerated your first round of FCR reasonably well. I had no sickness with Rituximab but was very nauseous with the chemo tablets. Anti-sickness medication helped a little but not completely.

    Last year I mentioned some practicalities to someone else just embarking on FCR eg. you can go to the loo and not be chained to the hospital bed whilst having the Rituximab, drink some water (before, during and after) and probably best not to drive home until you see how you fair following round one. But, I see you learned by experience!

    Hope your treatment journey continues well. Keep in touch when you feel able.

  • Thanks Fieldmedow - yes "Learning by doing"

    You are spot on - I am very behind on my reading.

    What I have managed to read though from all of you on HU has been tremendously helpful in getting me through it all.

    I just need to give up work and get properly educated. (Started again yesterday as project I'm currently on has I think gone a little somewhat pear shaped - thankfully have lots of help from others there so should be able to recover)

    Many thanks,


  • Hello Ernest .this is a good,informative report for those still awaiting any treatment. My FCR was 4 years ago but still fighting on after many infections. The consultant and team at Airedale hospital,which covers Skipton, always do their upmost for me. Stay Strong

    all the best Bob

  • Many thanks Bob.

  • What a brilliant and positive attitude to ending up on the FCR arm. I worried about that a lot when I was offered FLAIR but figured that, if there wasn't a trial at all, I'd be on FCR anyway - so it was no worse - and a 50/50 chance of something different. Anyway, I'm glad it's working for you so far - good luck.

  • Thanks Graham.

    Had same kind of thinking that trials such as FLAIR and ICICLLE/ICICLE can only move us all forward, so nothing to lose and all to gain.

  • Just wanted to wish you all the best with your treatment.

    . I am quite new to this world of forums although I did post a few weeks ago. My husband has SLL and was on W &W for only 1 year. He is now about 9 weeks into the Flair Trial after receiving the IR arm, he was quite prepared to receive the "tried and tested" FCR thinking that the Ibrutinib would be fully tested by the time he might need it in the future but was at the same time v happy to be part of the testing. His Consultant at Bournemouth Hospital has been v informative about the trial and we can't praise her enough.

    A few days after his first Rituximab Infusion, ( which went v well) he unfortunately contracted pneumonia and was in hospital for 10 days. Now all back on track taking 3 tabs of Ibrutinib a day and the 2nd Rituximab under his belt with so far no apparent side effects so far except for a "hot tongue". Lymph nodes all down and bloods going the right way. Although he is injecting himself with Granocyte to boost his Neutrophils which went down to 0. 3 but now up to 4.1. His real joy is being back on the golf course!! Our main concern now is trying to keep away from all the coughs and colds that the winter always brings without getting too paranoid !!

    Good luck from us both,


  • Hi Ann,

    Great to hear from fellow FLAIR trialers, also an SLL patient.

    Real sorry to hear about the pneumonia, but glad to see he is now back on his feet and on the golf course (that should be free of coughs and colds, just take care at the 18th).

    Best wishes,


  • Thank you Ernie, what a positive approach. I wish you as well for your other treatments still to come.

    Have a brilliant Christmas and New Year. Keep posting how it goes when you can.

    All the best


  • Many thanks Sue - will try to keep posting.

    Have a great Christmas everyone.


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