sCR

They call me hell. They call me Stacey. They call me her. They call me Jane
That’s Not My Name - Ting Tings

Just a warning. They’ve put me back on the steroids. I’ve written a load, which I think more digestible if I split it into 3 posts. I get dosed, you get dosed! As always, you don’t have to read it all. Here’s Part One

Treatment response classification for myeloma is somewhat arcane. Because it’s quite difficult to know where you are, and because no matter how good things look, the assumption is that it will, one day, relapse. The basic classification often used is:

• PD - progressive disease. Things are actually getting worse
• SD - stable disease. It’s no longer getting worse, but not improving much either
• PR - partial response. Typically a 50%+ drop in paraproteins/ light chains
• VGPR - very good partial response. Typically a 90%+ drop in paraproteins/ light chains
• CR - complete response

Until now I’ve never achieved more than VGPR, and mostly only PR. That I’m still here after eleven years shows that these categorisations aren’t reliably prognostic. I was told, long ago, that the single most significant threshold, prognostically, is whether one achieves VGPR rather than mere PR, but it's not obvious you'd work that out from the category labels. And naturally people’s focus is at the sharp end. Everyone wants to be told they’ve responded as well as possible to treatment.

I try (often unsuccessfully) not to be cynical about other people’s labels for their mm. I roll my eyes when people tell me their personal myeloma is “high risk” - as though any myeloma is not. Seriously, if we're going to get competitive in how dangerous our cancers are, something else has gone wrong. Similarly I try not to rise to the slightly competitive subdivisions people make about the quality of their CR compared to other CRs. But then, I’ve never been in CR myself before. There’s a hierarchy within CR that goes something like this:

• CR - 100% reduction in paraprotein
• sCR - s for stringent. No myeloma detectable by immunohistochemistry or immunofluorescence
• MRD-negative - no myeloma residual disease detectable in flow cytometry of bone marrow biopsy

That isn’t even an exhaustive list. People talk about “molecular CR”, for example. I’m not sure what the testing threshold for that would actually be. The science isn’t settled on all of this. There isn’t consensus on what terms mean, how the different statuses are measured, or what distinctions really matter. Google this topic and you’ll end off reading more research papers than consumer facing websites. There’s even evidence that myeloma can be detectable on one less sensitive test, but simultaneously undetectable on a more sensitive one… which kind of undermines the entire premise of a hierarchy of response determined through increasingly sensitive tests.

But that’s the general gist: at what, increasingly precise testing level is your myeloma detectable, or not. As of today, my clinical trial team tell me that my status is now classified as sCR. I’m due a BoMB in a few weeks, to screen and make sure my repeated bouts of neutropenia don’t have a serious (more serious than myeloma, I mean) cause. I guess it will also enable them to tell me my MRD status.

Prognostically, better means better. So while I remain very sceptical of all these categories and of the importance patients attach to achieving specific response labels, I’m obviously delighted to be told my response is deep. That's what counts, whatever we choose to call it, however we measure it. Clearly the less easy it is to find evidence of myeloma in my blood and bone marrow, the less of it there must be. And less disease can do less damage. (That's my attempt to cut some clarity from all this complexity and wanton competitiveness.)

I’ve call elranatamab the wonder drug for good reason. I has hit my myeloma harder than everything that has gone before. As of this week I’ve restarted treatment, with a plan for at least another year of monthly jabs. I’m pretty optimistic the response will stay good - stringent, even. It’s just a matter of not getting dangerously ill with whatever respiratory infections I might encounter. To that extent the damage is done, regardless of the absence of active myeloma. It doesn't go away, even when it goes away.

We got out of London for Easter in Sussex. Finally getting to enjoy the renovations there. We practically had the house rebuilt, in the end, after I told the builders to strip back rotten sections of cladding as well as adding in the new. By the time they were done, every piece of external cladding, all the internal walls and half the roof had come out and off! It's a bit like my grandfather's spade, having had two new heads and three new handles. But that's inevitable for a venerable wooden building. It's nice to be able to just enjoy it, without seeing endless jobs still to do. My relapse somewhat delayed the finishing in 2022. The house still needs painting (though it looks quite fine without, no?) And, with the assistance of my parents and Ben, we built a couple of excellent sheds. Just don't tell my physiotherapist that's what I've been up to.