I've just been watching this, as posted across several CLL sites today, and by Kwenda on this site earlier today
It's brilliant to see such optimism, and to hear someone say that he can tell his CLL patients that they'll never need chemo...however, for those of us facing an imminent need for treatment now...those of us in clear and present danger that isn't going away while we wait until early 2014 in the UK to see if we can get a 50/50 chance of ibrutinib in the CLL10 phase 3 trial, I'm afraid it simply isn't true...
With a rapidly growing spleen, increasingly bulky nodes and anaemia/thrombocytopenia indicated by my blood tests, crashing fatigue and frequent infections, my 'choices' remain starkly limited. I could, against medical advice and the insistent warning signs from my own body, wait until early 2014 for that 50/50 chance, potentially missing the window of opportunity to start any treatment whilst I'm fit enough to respond well. Alternatively , I could get FCR now whilst I still stand some chance of getting a durable remission (given that there's a 50% chance that's what I'd end up with anyway).
After very lengthy discussions, and trading of research papers, current insights, and potential alternatives such as single agent rituximab (which is not advised for me due to the relatively shallow depth of remission in the face of increasingly aggressive disease, and the way it knocks other potential treatments out of the armoury down the line should they be needed), my Doctor and I both agree that in reality I don't have a viable alternative, so as it stands I'm due to start FCR the week after next.
Whilst I welcome the chance to feel better than I do now on the other side of chemo, I still find this frustrating beyond description, and made much harder to bear in the face of so many people talking about the brave new world of the future as if the present reality for many of us has just conveniently disappeared!
This is just my perspective from the 'squeezed middle' of the CLL community - those of us treatment naive patients, not quite in the past paradigm of treatment regimes, yet not in a position to participate in the future of small molecule front line therapy as our diseases demand that we are treated imminently. I know there are a few of around in the global networks at the moment.
I do not mean in any way to undermine the very real hope and excitement we all feel for the future, nor to dampen the spirits of those lucky enough to be involved in ibrutinib trials now or in the very near future. We will hopefully at least have them on the market for relapsed patients when the time comes for further treatment down the line. Nor is it to imply that FCR isn't a good treatment regime, with some excellent results in many patients. We are undoubtedly in a much better position than patients were a decade or so ago, and I am truly grateful for that. I think it clear though that most of us would prefer to avoid chemo if we could...
Rather it is to admit that this is a tough place to be right now, and to acknowledge that for anyone else in a similar position, and for those who may draw the FCR arm in the upcoming CLL10 trial. We will all need to find a way of making peace with, and retaining a positive attitude to our experiences with a treatment that is already being consigned by many to a rhetorical past , but that we must rely on to keep us alive in a present already overlapping with a future buzzing with hype and hope for another way...
Hope everyone is well?