Pain

Walk away and taste the pain. Come again some other day
Taste The Pain - Red Hot Chili Peppers

No sooner had I predicted in my last blog post that I would have four or five months ahead of me before needing to begin new treatment, than things changed

With my blood counts deteriorating, last month we made the decision to change my treatment plan and start on a new set of drugs. I was due in clinic to kick off that process, but before we could even get that far I was overwhelmed with pain. I’m pretty good at dealing with pain (myeloma is a painful disease so I get plenty of practice), but it got really very bad this time. It’s hard to calibrate pain in order to describe it, but this was more than I could handle, and was no longer responding to painkillers, regardless of how many I took. I ended off calling an ambulance on a Monday morning, and I’ve spent the past two weeks in a hospital bed again. It’s all a bit grim. My myeloma has clearly relapsed very quickly. Faster than our ability to monitor with blood tests. A PET scan revealed what I had already worked out: that there were plasmacytomas in my pelvis, my hip and by my spine (fortunately, the neurologist told me, not actually on my spinal cord). These are myeloma tumours that have escaped from the bone marrow. I had some two years ago, and we should just assume they’re a characteristic of my disease now. Myeloma (d)evolves and gets worse, over time. The longer you live with it, the more opportunity it has to develop more problematic traits. Unwelcome as that may be. In my case the changes include plasmacytomas, and that it is becoming increasingly “non-secretory”, producing fewer light chains, thereby inhibiting our ability to monitor it with blood tests *.

I’ve had a five day course of radiotherapy to specifically deal with the tumour affecting my spine and my nerves, and the one inside my hip socket. The radiotherapy was at Guy’s - there’s no radiotherapy machines at King’s - and since I was not in a position to get there independently, I had to be transported back and forth on a stretcher between the hospitals each day. That was an awful process in and of itself. The actual treatment was ok. It takes only minutes and nothing appears to happen. Not very dignified, mind, lying there stark naked on the machine with the technician taping my genitals to my leg to minimise the risk of incidental burns. Let’s hope it works, because in the short term that’s what will determine my mobility and function. And I’ve started the new chemo regime - isatuximab and pomalidomide. Potent drugs, each an escalation from similar I’ve had in previous relapses. We can only wait to see if it works. Even if it does, these are likely to be short term solutions. I got almost two years out of elranatamab. It think it’s optimistic to imagine I’ll get that long from these, but who knows. Ongoing treatment will involve a day (likely overnight) in hospital every second week, and other pills that I must take daily for as long as they work. There’s a serious risk it exacerbates my immune suppression, and/or makes me dangerously anaemic or thrombocytopenic. Last time I took these classes of drugs - in 2019 - I ended off having a lot of blood transfusions (and they tell me this one is ten times as potent as the last one was!).

Being in hospital is always bad enough. It’s worse now than ever, with the NHS made derelict by callous tory bastards. It’s frightening and humiliating. You end off having to accept a lot you really shouldn’t have to, because the alternative would be not getting the treatment you need at all. I was discharged yesterday, and I’m taking it easy at home. I’m hoping I can at least be present with my family, with pain sufficiently managed that I have the mental bandwidth to enjoy their normal life around me. It’s not a big aspiration, but it’s as far as I dare dream. The last few weeks, looking back now, were too much. But in the moment it’s sometimes hard to know when to shout; how long to ignore/ put up with/ live with/ escalating symptoms.

All pretty shitty. I’m not at all happy about it. There’s no sugar coating, no upside, no way to brush it all off. From one treatment immediately on to the next, attempting to keep a step or two ahead of the disease. That’s how it will be. It would be nice to be able to make those transitions without experiencing it each time in the form of emergency and crisis. But that’s probably not a realistic expectation. It certainly isn’t how it panned out this time.

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* If you’ve followed this blog long enough you’ll have been used to me quoting light chain numbers as my default disease marker. And you might have noticed I’ve stopped doing so. Paraproteins and light chains are only ever a convenient proxy for myeloma - the easiest thing to monitor. They’re a bi-product of disease not the actual disease. How much of them you produce is individual to your own disease and so there’s no absolute meaning for any particular level. My rule of thumb has always been that, for me, KFLC = 500+ is the threshold that indicates imminent problems. But this time round we’d only got as far as KFLC = 120. The warning lights were only flashing. We thought we’d got more time.

My disease has always been “low-secreting”, in the spectrum of myelomas. It’s not unusual for people to have light chain scores in the 10,000s. And in 90% of cases, myeloma produces whole antibodies (paraproteins - PPs) as well, which mine has never done. It is perfectly possible to have “non-secretory” myeloma that doesn’t even produce any light chains, and mine is clearly heading in that direction. This becomes a problem for disease monitoring. I suspect I will in future need regular PET scans as part of my surveillance regime. Maybe if we’d scanned before Christmas, I could have been spared the worst of what has just happened. We might have seen the plasmacytomas before they got so bad. Maybe.