With great relief, I have just signed up to the FLAIR trial:
ukctg.nihr.ac.uk/trialdetai...
Baseline testing (CT, BMB, Bloods etc.) should now go ahead over the next 4 weeks.
After that a few days for the computerized randomization process to decide which arm of the trial I'm in (FCR or IR) and then the treatment can start.
Hopefully my spleen can rest a bit easy now, knowing that help is on the way 
Best Wishes to All,
Ernest
Hi Ernie,
Good news .
I hope you get a good roll of the dice and get the IR arm
Best Wishes,
Mike
Many thanks Mike.
I'll be really happy with either arm, and either could get interesting. I'm thinking IR is perhaps the more unpredictable in my case.
I was really interested to read back through your blood test results you have posted to see how things improved whilst you have been on Ibrutinib.
So here are my current FBC baseline figures before treatment (from early Oct):
Hg 11.4 g/dL
WBC 234 10^9/L
RBC 4.02 10^12
ALC 227 10^9/L
Platelets 89 10^9/L
Neutrophils <test failure so go back to July for those: 1.96 10^9/L >
So not in normal range but all workable figures. Not sure if I have to thank the spleen for that (need to do more reading there).
I will be interested what the Neutrophils are doing now as my activity levels have gone up recently which I've seen boost them in the past.
Aside: Guess you have different units on the Hg as I seem to be a power of x10 out (Don't think my Hg is not that bad )
Assume I'll get an update on the baseline FBC so I'll post those when I get them.
Best Regards to All,
Ernest
Hi Ernie,
Hg units changed back in 2012 (I found on my spreadsheet) from g/deciLitres to g/Litre, so, e.g. from 10.7 to 107. That was my Hg at screening in September 2013. Other readings then were WBC 122, RBC 3.03, ALC ~100, Platelets 83 and neutrophils 3.1.
I had a heavy tumour burden in abdomen, chest and on my spine, such that it was thought I might have a high grade lymphoma/RT. A PET scan showed that it was not, fortunately. I was warned to be prepared to have CHOP chemo and that, in that case, I would not be able to enroll in the Resonate-2 study.
Ask also about your LDH and B2M on your next blood draw and also your GFR. Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working.
I also had an ECG (Atrial fibrillation is a side effect of Ibrutinib) as part of the screening and a bone marrow biopsy. That's if you are on the Ibrutinib R arm, of course.
Best wishes again,
Mike
Many thanks Mike for all the information.
Last lot of bloods I got were first I've had on a computer printout for a while. A shame that NHS never got the computer systems standardised, that must still be worth doing. I can look forward then at some point to my Hg going up by x10 when the units get standardised to g/L
I do need to spend some time looking at the Kidney function and understanding all that, so many thanks for the reminder. I do know (by accident from scans) that I've got one slightly physically damaged kidney, but I believe all the functioning is fine
Looking forward to an ECG, which I think is a baseline test for FLAIR. I have to remember as a thin person (the heart tends to sink with thin people I'm told) and very long in the back, the pads need to be put on lower down in a non-standard position to get proper readings (Years ago I was thought to have a minor heart issue, but the cause of that was just the pads in "standard positions")
Best Regards,
Ernest
Great news Ernie. Hope all goes well for you.
Sue
Many thanks Sue.
I always think of it as a roller coaster ride (not that I'm keen on those - I did survive the Blackpool "Wild Mouse" as a child).
I've bought my ticket, got on (and can't get off), and now just have to sit back and enjoy the ride (guess I'll be feeling a bit queasy at times also)
Ernest
Your relief indicates you are delighted with this offer. It's always helpful when you feel comfortable with your treatment plan. All the very best.
Noticed from your profile that you recently had your tonsils out largely because of the cll - I did too - best thing I ever did despite long recovery - (I was about 60 years old!)
Yes - had them removed early 2013 if my memory is working correctly (seems a long time ago now).
It was a big relief at the time as I could hardly eat beforehand.
And like you say the recovery is not as quick as for the "young ones", but well worthwhile.
The biopsy did indicate they contained CLL, although I wouldn't blame them for the CLL. Would have been nice to have had them removed a few years earlier though.
Ernest.
Onwards and upwards very soon then Ernest. As always, I am wishing you, and everyone facing treatment all the very best.
Look forward to progress reports when you feel up to it.
Bub
Many thanks Bub, I'll be reporting in due course.
Random typing at a computer (what I do for a living writing software) is something I hope I'll be able to do.
Ernest.
Very best of luck, sounds like you are very relieved to be part of the trial, hope it all goes well for you.
Good luck indeed. I hope you get the IR arm but, even if not, you can rest assured that the FCR is tried and trusted.
Many thanks Graham.
I'm a familial case, so if I could wind the clock back to the 1980's when my father had CLL we could only dream of treatments like FCR then (perhaps some was on trials somewhere then - have to consult the history books)
Ernest
Good luck. Please keep us updated on your journey and fingers crossed you get IR.
Will do.
But if my posting get's too much for everyone, just let me know - somebody can PM me
Ernest
Right decision? FCR vs. trial 
Flair trial
Flair Trial Completed
FLAIR Trial 2018 update
