Well, I’ve made it to the end of the 7-year FLAIR trial in the FCR chemoimmunotherapy arm (treated in 2014/2015)
I went to my last review in December at the Churchill hospital in Oxford with a somewhat feeling of dread that I’m about to fall off the end of the conveyor so to speak.
The Haematology is all still good. My Ig was not measured but I’m sure will still be on the low side, but functional as no significant infections last year that I can remember.
Anyhow to my great surprise, delight, and relief, the hospital is keeping me on as a patient for the time being, with periodic review.
So the things to concentrate on now are fixing my digestive system after taking Prophylactic Antibiotics for the insect bite back in September (I just need to be patient), and exercise without solidifying my lower legs.
Photo: I won’t be running with a gammy left knee from a lifting accident on site many years ago. I would prefer to walk, but hills are doing something nasty to my legs (vit D and CK tests to schedule). The path in the photo is the foot path that I don’t ride on. Just behind me is a single-track road (minimal very low speed traffic) that is ideal for cycling. The reservoir and road belong to Seven Trent Water who in a very enlightened way promote lots of activities to get us fit, as well as the gallons of drinking water:
For anyone wondering the bike is an MTB style gravel bike. All the gears on the back so I don't get confused. Light weight LOL just so I can lift it into the back of the car without putting my back out.
Best Wishes to All,
Ernest
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Good, positive news Ernest and hope you manage to get the other issues sorted.I had thought Flair was a 6 yr trial so a bit surprised you’re into year 7.
Yes my meds on the Flair trial finish in 4 weeks and I’ll then remain under Flair for another 3 years. After that I’ll receive my ongoing monitoring at that unit.
Hi Ernest, good to hear from you. Great that 7 years after FCR, your bloods are still OK. Nice that the hospital is still going to keep an eye on you even though FLAIR trial has finished.
Great to hear Ernest! FCR has become a relic for treatment in most countries so I’m happy to hear you are doing well after seven years. I completed FCR in Feb 2020 so I’m hoping for a nice long remission as well!
I did 3 rounds of FCR. Not sure i understand why you were on FCR for all those years. It's usually 6 rounds. I was lucky to be done so quickly. How did u tolerate it for 7 years- any issues?
Best wishes to you also Ernest! Thank you for sharing your journey. Bike is beautiful! Husband & I just got electric bikes last year. Looking forward to enjoying them more this year~ Take good care!
Congratulations Ernest. I'm following the same track as you, now 22 months since completing 6 x FCR in the Flair trial. Still severely Hypogamma, IgG <3 g/L, but as with you infections all minor.
Rightly or wrongly, I assumed the haematology unit would monitor me for the rest of my days.
How long did your white cells take to return to normal range? NB you can still lock this post.
My white cell total climbed to around 4 during 2017, although had been up and down a bit since. Lymphocytes currently 0.81 (so a little below normal) but seem to work ok. IgA/G/M remains low e.g. IgG = 2.13 g/L at last measure but seems to work ok.
Hey, Ernest, not familiar with this trial (or what FLAIR stands for) but bravo for you for participating in any clinical trial for 7 years, and great that you are good after it.
Congratulations, Ernest, in achieving this important milestone! Love the bike - it is a real beauty.Wishing you continued progress and all the best going forward!
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FCR + Ibrutinib trial
Choices, choices!! FCR or Trial...?
End of FLAIR. No more Ibrutinib. Great improvement!
