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):
-Allopurinol (Kidney Flushing)
-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,