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We were born with nothing and we sure as hell have nothing now
Things We Lost In The Fire - Bastille

Dosing day today. More importantly … MRD- …

Today I got my BoMB result from the other week. There were no detectable myeloma cells. If there’s anything there at all - and realistically, we assume there is - it’s at a level below the sensitivity of the tests. (By comparison, at their worst, previous BoMB results have shown myeloma to constitute up to 80% of my bone marrow.) My remission continues. Alongside blood results, urine tests and my latest PET scans, this confirms not only complete response (CR) but stringent complete response (sCR) and even that I’m “minimal residual disease negative” (MRD-), the best possible status. Caveat that by noting that my doctors put little significance on these distinctions and would have told me merely that I continue in CR, if I hadn’t asked specifically about MRD. I think their scepticism is because the criteria for the different statuses aren’t entirely standardised; because it’s not completely clear what the prognostic significance is; and probably because CR is the key indicator measured by the clinical trial.

Still, you don’t need a medical degree to understand that a better response is a better response. And even though I’m sniffy about these distinctions when it feels like other people boasting, I’m not entirely averse to a bit of crowing myself. Eleven years on from being told I have a fatal, incurable disease with a median life expectancy of five years… it’s nice to know we have the upper hand right now. More poignantly, having lived through several periods where my test results stubbornly refused to offer up good news, seesawing better and worse from week to week, and so depriving me of any confidence in my treatment or prognosis (in 2018-2019 we got through three lines of treatment in quick succession with “progressive disease” (PD) the officially recorded outcome of each)… it’s kind of cool to be in a different place. For now, I’ll bask in this.

It also validates my decision to participate in the elranatamab trial (MagnetisMM-9). I’ve participated in several clinical trials over the years, with mixed results. One (PADIMAC) got me access to a drug that worked, though my response fell below the threshold for the next part of the trial. One (Myeloma XII ACCoRd) didn’t work at all, and just gave me horrible side effects. And those were both efficacy trials (“phase III”) where this is a toxicity trial (“phase I/II”), meaning we started this time with very little empirical evidence that the drug works at all. Despite a few anxious months at the beginning when my light chain results stubbornly refused to move in the right direction (and each dose hospitalised me), we’ve conclusively proved now that elranatamab works for me.

My life is not as normal as my blood, but it’s got increasing amounts of normal in it. Last night we went to “Kew the music” at Kew Gardens, to see Bastille. It was billed as a “picnic concert”, which is kind of the perfect gig for me because it means you can take a chair and sit down when you want to.

Yay for summer evenings, live music, and healthy bone marrow.