Hi all,
Just to add another story to the mix to remind us all again how individual (and unpredictable) it is. I was diagnosed stage 3, bone damage, kidney problems, hypercalcaemia, pneumonia, really very ill, just as I turned 33. I had 4 cycles of PAD, with a very rapid response: light chains in blood and urine both vanished to zero after just 1 cycle. (I never had paraproteins). My response was called Stringent Complete Remission (sCR) as no evidence of disease in bone marrow, light chain ratio normal etc. Did an MRD test of some sort on the trial and was MRD-negative i.e. really however hard you looked you couldn’t see any myeloma.
So, as has been said above: the idea is to get the best depth response, I got that. But it doesn’t necessarily correlate to the longest remission.
I didn’t do an SCT but did a harvest, so I’m one of those ‘what happens if you delay?’ guinea pigs. What happened is that I relapsed around a year after harvest. Obviously there’s no counterfactual i.e. an exact me who decided to do an SCT – so there’s no way of knowing what would have happened if I’d done one upfront. What I will find out is what happens when I do it later this year. I’m hoping for the added effect of an SCT to give me a longer remission this time. We shall see. I will let you know!
At my age, I don’t feel like waiting has added any morbidity. I’m in better shape this time around than last time actually, as I was so ill at first diagnosis whereas this time I’ve caught it while I’m still ‘well’, if you see what I mean. I’m otherwise healthy, all my bloods are bang on, etc etc etc. From my point of view, it was appealing at the time to get back to normal life sooner, see if I could get away with less treatment, not have to do the SCT (yet), not have issues of possible infertility etc which SCT brings. Obviously everyone has different things in terms of stage of life and quality of life.
Potentially there is a risk that more clones have developed and a theory that the SCT would have been more effective earlier on – but I think the jury is still out, at least enough for there to be views on both sides. Psychologically, I feel like I’ve still got an SCT (or two ore more SCTs, who knows) ‘up my sleeves’ which at this stage feels like a good thing.
Of course I do wonder what would have happened with an SCT upfront – maybe I’d have had a three year remission or something, which would have been nice. But maybe I’ll get that now anyway, and I just ‘bought’ myself a happy drug-free year on top of that. There’s just no way of knowing, and what’s done is done.
Beyond that, I suppose I’ve no idea what CDT would have done. Maybe velcade works fast but doesn’t give long remissions? Who knows?
For what it’s worth, I think I’m one of the ‘responds to treatment quickly, comes back quickly’ sub-types of myeloma which will no doubt have its own name in future… So probably lots of you have different experiences (slow fall, maybe never reach zero but plateau, slow rise or bob up and down) and in a way my experience isn’t that relevant to yours. But then again someone else out there reading this may be similar, so I hope it’s helpful to write up my experience.
Good luck with all of you at your various stages, and thanks for sharing all the thoughts – I find it interesting. I’ve also read a lot and done all my ‘due diligence’ but realise there’s a point beyond which it is indeed guesswork at this point. And that’s just how it is. I have great doctors and also had a second opinion very helpfully this time around. At this point I can’t see much more that could be done and I’m exceedingly grateful that finance doesn’t enter into the picture and remain a massive fan of the NHS – I can’t imagine having to deal with insurance companies etc and I hate the fact that in the US the average life expectancy statistics are so low, even when some people do amazingly well at specialist centres, i.e. there is such inequity (although I do realise we benefit from all the advanced drug development they do with those who can afford it). I do see one possible hitch currently that in the UK we seem to get either Velcade OR Revlimid rather than both together whereas RVD might be quite good to try, and that Carfilzomib is appealing as the newer velcade – but I am lucky not to suffer from PN so velcade seems fine for me, and in a way I’m just buying into the theory of ‘save the revlimid for later’. Obviously further down the line I may find more issues arising and get out on my campaigning horse to fight for new drugs or whatever with Myeloma UK, but at this relatively early stage I feel well catered for.
Helen
HelenR.
