...with my haematologist this morning, face-to-face this time.
Paraproteins up from 6 to 10, light chain ratio up from 6 to 17, but that's still not enough to start another round of treatment. I had nothing in the way of new symptoms to offer, just the usual collection of more-or-less transient aches and pains, all of which might possibly be myeloma-related but none of them convincing enough. She thinks most can be explained by arthritis here and there, which is likely enough at my age...
We had a good and lengthy conversation about the current position. I am now "relapsing" but not yet relapsed - not until I can present some new lesions and associated bone pain, or signs of kidney damage, or other things I'd rather not get to. I'd like to get straight on with treatment but there are complications with NICE guidelines and NHS funding. One of the problems is with the dexamethasone and lenalidomide "consolidation" that I had privately after the stem cell transplant that never was back in 2020. My consultant then refused to call it "maintenance" (which, arguably, it was) and the reason is now obvious. If it had been maintenance it would have counted as second line (even though I hadn't relapsed, and as far as I've been aware new lines only begin with a relapse). And that would have meant that we would have lost the option to go back on either of those two drugs at a later stage. Such as now, or before too much longer. And if we can't do that it might mean going on to drugs not normally used until a stage or two further down the line, meaning that I might lose access to them when I really need them. Complicated.
She's working on ways to present my case to the funding authorities in a way that gets around these difficulties. So at the moment I'm in another sort of limbo, poised halfway between first line and second line, and I have to rely on her ability to find a good way through these tangles. I could help by developing a few good unarguable symptoms, so in essence I'm hoping for it get worse so that it can get better.
I hope that's clear. Or clearish, which is all it is to me. The alternative lies in those blood numbers. If the PPs get to 30, that could be grounds for starting a new line. Might be there in six months? Anyway, increasing the frequency of monitoring to six or eight weeks.
Bloods also show (corrected) calcium slightly above normal range. She thinks this is a hydration issue and I should drink more water (I freely admit I don't drink as much as perhaps I should) but I pointed out that it could also be a consequence of bone breakdown if new lesions are forming. But she doesn't want to do a scan to look for them without evidence of bone pain...
Ah well. It's back to watch'n'wait again.
On other things my walking is now back to normal after a few weeks of trouble with either my right foot or my right shoulder, And a beautiful sunny spring day in Chelmsford - 17C this afternoon after a 1C start this morning. Had a good walk into town and back through the park, with spring springing up all around. 9379 paces as I write, and will get that a long way beyond 10000 with Nordic corridor-walking later. And weight loss is also back on track after too many days of enforced reduced activity - now 13.8kg below my worst (2 stone and 2.4lbs). Over halfway to my ultimate goal.
