Friday, 15 June 2018


The wind is low. The birds will sing, that you are part of everything. Dear Prudence, won't you open up your eyes?
Dear Prudence - The Beatles *

... KFLC = 436 @ 6th June ... 368 @ 24th May ...

If you want just the short update here, it's extremely simple: I'm still taking my chemo. I'm feeling much better than a month ago, though still pretty fragile. But while I'm still able to pop my pills, we are at least in some kind of rhythm at last. I daren't do much for fear of provoking another crisis and disrupting my treatment plan again. For it would be pretty disastrous if that were to happen again now. So, I'm living quietly, cautiously. It's a bit dull, and quite frustrating, but it is leagues better than my quality of life for most of the year so far. Barring any major drama, I'm hoping I will continue like this - popping pills and laying low - until the end of August.

What follows may be of interest to some... though there's a possibility it is entirely DEX talk.

My myeloma is only measurable through light chains. Most people's myeloma is also measurable through Ig paraproteins. It's mostly a nerdy distinction - only relevant to us patients as we swap statistics. But it does have a couple of real world consequences for the experience of being treated for, and living with, the disease. The light chain ("SFLC") test is very volatile. You could test today, and repeat tomorrow, and get a significantly different result. It jumps about. It's noisy data. Added to this is the complication that light chain tests take several days. So one is always working with old data. We never know the situation as of now. (If one had Ig paraproteins, detectable via a "SPEP" test, one would have neither of these issues.)

My myeloma is also, I've learned as I've lived with it, slow, stubborn and indecisive. Some people have a cycle or two of chemo and their numbers plummet. Not me. This isn't necessarily a bad thing - the prof told me long ago that some myelomas are faster moving than others, but faster on the way down can equal faster on the way up too. And overall, if he's right (and I believe he is), then I'm more than happy to have slow-to-remit, if the pay off is, as it has seemed to be, slow-to-relapse.

But, it does make it frustrating to live with. Only 3 weeks ago, armed with my results from two cycles of treatment (and a month out of treatment while I spluttered with infection), one of my consultants, was talking pessimistically about abandoning my chemo entirely, on the basis that it wasn't really working. We'd been going for 4 months, and my light chains had dropped from 750 to 550 - a response which merely qualifies as "stable disease". All that grief, for not much result! He was seriously exploring with  me whether or not to simply rush me to transplant.

Twelve days later, with one more result available, and sitting with my other consultant, we were in much more optimistic mood. (For reasons I can't be bothered to explain, I've managed to get myself in the complicated situation of being under the care of two experts at once, right now.) Now the headline was 368, which, being a >50% reduction from our January "baseline", counted as "Partial Response" ("PR"). He was telling me that emerging evidence suggests ixazomib's response profile may be slower at the start than some other treatments. That, combined with my myeloma's known stubbornness... would all explain why it was just taking time. But finally, 3 cycles in, it appears it is responding. This narrative ties in nicely with the fact that I've been feeling a lot better. And it puts us back on the pathway of continuing my chemo regime until the end of August.

So, it would have been nice, when the next result came in, for it to confirm this trend, to back up this story, to give us a bit more certainty. But here's the bit where my personal variant of myeloma does what it always does: fails to be conclusive. It's foolish to await a light chain test with a number in one's head. Foolish, but inevitable. The number in my head most certainly was not 468. That is a jump back up, which no longer even qualifies as a "response". I suppose, having lived with it so long now, having had so so many inconclusive results, I should really have anticipated this. Instead, I found myself thrown back in to uncertainty. Is the chemo even working?

I've calmed down again now. Despite the noisy data, one thing we can say with absolute confidence is that all three cycles of chemo I have completed so far, have finished with fewer light chains than they started. In that sense, the chemo is most certainly working, and we should clearly carry on. (I'm probably tempting fate by saying this... and cycle 4 will inconclusively move in the other direction. I really wouldn't put it beyond my myeloma to do that.)

So... a lot of angst later for me, and we are where we were already - popping pills and laying low. Mentally, though, it's one hell of an endless ordeal.

* I could probably do with a bit of Pru Farrow's meditative zeal, right now.


Ed (Blog Adminstrator) said...

Shouldn’t you be getting a bone marrow biopsy to confirm the state of your disease rather than trying to interpret the conflicting
Light chain data?

Alex Bicknell said...

I’ll have one soon enough, when the chemo is complete. I don’t fancy the idea of having biopsies cycle by cycle. Though presumably there are people with non-secretory disease who do have to do that. (Bring on liquid biopsies...)

I’m not sure whether a biopsy is a more or less effective measure of disease load than a blood test - inevitably, it measures just one site. Interesting question.

Glad to read your most recent instalment (and good hat). Stay strong.

Anonymous said...

Have you considered taking 40 mg Dex again? Maybe the lower dose is not that effective for you

Alex Bicknell said...

You’ve even less basis for making that judgement than I have!

I go with the doctors on these decisions - none of them has suggested that the dex has any significance. Cycle 3 (less dex) delivered a much bigger response - as measured by the light chains - than Cycle 1 (more dex).

My point was that it is quite difficult to ascertain what the response is, let alone what drives it. The same, sadly, is true of side effects.

Anonymous said...

How is your back doing - will it need further work?


Anonymous said...

Sorry, I did not mean it as criticism. Just that in my case 40mg Dex was required for the myeloma drugs to work and when we lowered it to 20mg they stopped working.

Alex Bicknell said...

That's interesting to hear. How long was it before you worked that out? There's definitely not enough data on me to make any conclusion about the role of the dex. Only 4 cycles done; only results from 3; 2 with dex; 1 without; a hundred other factors; not to mention the volatility of light chains... Even after 6 cycles we still won't be able to see if the dex played a role, one way or the other.

My consultant has given me the impression he thinks the contribution of dex to the efficacy of the protocol is pretty low, and that its inclusion is as much about smoothing side effects as anything.

As a consequence I've been working on the basis that if one struggles with the effects of steroids, maybe they're doing more harm than good. But - if there's evidence that they really do drive efficacy, I'd be wrong. So I'd be interested to know more.

(As for my response to criticism... I was on DEX when I wrote that reply!!!)

Alex Bicknell said...

I don't know if it will need more work - or even what's possible. I don't think there have been any more breaks, but my posture is not good. I've begun to wonder if I will end off needing a brace. I certainly don't think I have the kind of pain that will be helped by any more vertebroplasty.

Most of my problems at the moment are with my ribs. Very painful, when they pop. Again, as far as I'm aware, not a lot can be done about it.

Anonymous said...

In my case the difference was clear, when we lowered the Dex dose the drugs stopped working straight away, I insisted going back on the higher dose and the drugs started working again. It is known that Dex combined to other myeloma drugs makes the other drugs work better, and if used in HIGH enough dose can kill myeloma cells even on its own. Could you tolerate it a few cycles and give it a go?