A question I’ve wanted to ask you all for a long time:
How long should we wait for trials and new treatments, and how to decide that the time is right to sign up, or not to wait any longer for what isn’t quite yet available?
As I’m at the end of round 6 FCR (more of that later) the penny drops that if things go well I am, under current best knowledge, hopefully returning to the status of a “Watch and Wait” patient. I’ll be very happy though if at some point I’m told “no, we think now with the improved tests we now have, that your FCR might be a cure”.
So that gets me back to the realisation that at some point I may well be a 2nd line patient looking at CLL treatments and trials again.
I now understand that the UK is a great centre for trials, so that is the likely way for those located here to access the best current treatments.
In turn that makes me consider with hindsight, was my decision to wait for FLAIR the right thing to do, and more significantly now, if I was faced with that sort of question again, how might I make a better job of deciding when the time is right to start treatment?
The snag is, there is always the temptation of a better trial or treatment around the corner, and we have to accept that predicted dates for such things are often going to be a moving target due to the complexity involved in setting up trials.
You can make a decision say that “I’ll wait for another couple of months but no more”, but that time soon goes by and it’s always just too tempting to try to hang on a little while longer, “just another month”.
We have to decide of course how urgent is our need for treatment, and assess the risks of waiting, and of course accept that we may not ever know if we made the right decision afterwards.
How do you classify how urgent you are?
- Critical, time to start treatment
- Very Urgent
- Urgent – is that too risky to wait any longer ?
- Ready for treatment
- Ready to think about treatment
It is just too easy to change your view on each of the above as you slide from one to the next (and I’m not a gambler, perhaps too careful if anything)
So some may say “Ah, you’re spoiled for choice then”, but that doesn’t seem to help much when you are in the thick of it.
I really hope that nothing changes to make me regret that I waited for FLAIR, when I ended up on FCR. The way I look at it with my prognostics, is that I’m going to need something like Ibrutinib or its successors in very approximately 5 or so years’ time, so thank you all for helping try out and understand these new therapies.
I hope I’ve got some time to think about all that, but it would be helpful (and very much appreciated) if anyone would share their decision making process on how long to wait for trials and new treatments.
Apologies I haven’t posted yet on the Round 6 FCR but I think there is a little way to go. The taking of the Chemotherapy and Immunotherapy are thankfully over, but remember it stays in your system for some while (6->8 weeks as best I know) and I’m still suffering from falling red blood cell count and Neutrophils, so I will hopefully be in for a red blood cell transfusion later this week.
Best wishes to all,
P.S. The above is a repeat of the question I raised in response to a great post "Treatment dilemmas - the waiting game" from Paula, and much following good discussion, all well worth a read: