Wednesday 5 October 2022


Have you come here for forgiveness? Have you come to raise the dead?
One - U2

… KFLC = 1 …

The good news first. My light chain result last week was 1. Even now I’m struggling to believe it. This is not just normal, it is far below normal - meaning treatment has not only wiped out my myeloma, it has wiped out all my normal plasma cells too (the drug can’t tell the difference).

Given that I’m neutropenic as well, this is all very bad news from the point of view of my immune system, which is struggling on all fronts. I’ve had some kind of respiratory virus, and been unable to shake it off, for more than a month now. In fact I’ve been positive for one virus or another for several months. Consequently I'm kept in segregation when I visit the hospital. They've a portacabin in the car park for me - I kid you not - and when I go in for treatment I'm treated by someone who introduced herself to me as "the dirty nurse". More seriously, I’m a little fearful of my risk from covid or flu as autumn moves towards winter. 

But from the very narrow perspective of killing myeloma cells, it’s amazing. It’s a better response than I’ve had at any point in the last ten years - deeper than I got from two stem cell transplants or ten different types of chemo. Give the wonder drug some credit. With a bit of assistance from radiotherapy, it has destroyed my various plasmacytomas, too, I'm pleased to say. I haven't enjoyed living with a lump on my head.

I had treatment this week for the first time in more than a month, the dose having been repeatedly delayed by one thing or another: anaemia, neutropenia, various infections, or combinations of these. The drug leaves its mark even over that timescale - that’s why I’m neutropenic and anaemic in the first place, after all. But the side effects are far more acute in the c.10 days immediately after a dose, when I just want to curl up in a ball and die. So I’m ambivalent now, at missing doses. With no myeloma to attack, all the drugs offer is side effect misery. My consultant is clear though that this isn’t a cure - if we don’t keep hitting it, the bloody thing will just come back.

I asked my consultant, last week, whether in future, when they’re inventing wonder drugs, they could maybe try to invent ones that don’t make you feel like shit. My relationship with elranatamab has proved far more challenging than I’d anticipated. I don’t think this relapse has been as bad as the last one - 2018 was a truly awful year - but it has plumbed some depths of its own. Myeloma tests you in new and horrible ways on each encounter. Partly because the disease behaves so unpredictably, and partly because each time the treatment is noxious in new ways.

The last few months have really knocked me back. I feel as though I have a deep hole to climb back out of, again. I’ve become so accustomed to being housebound and bedridden that there’s a big psychological adjustment needed now too. It will be a slow road to recovery - and I feel that I’m recovering from the treatment as much as, if not more than, from the disease. And if the treatment doses continue - as planned - for the next 18 months, I fear I may keep being pushed into the hole as fast as I’m able to get out of it.

This week is really the first time I’m having a dose while feeling relatively well, meaning this dose will give me a clear eyed view of exactly what the ongoing side effect are, separate from all the other stuff I’ve been dealing with up until now: my myeloma, plasmacytomas, infections, anaemia, radiotherapy and so on. If the side effects continue to be as gruelling as things have been, I’ll have to think hard about whether I can hack another 18 months of this. In the end there’s a balance about quality as well as quantity of life. But maybe (I can hope), it will turn out the side effects too, are easier, now I’m feeling, in the round, better. (One positive detail though - the feared peripheral neuropathy was diagnosed as actually being carpal tunnel syndrome, and whatever the equivalent is when you get it in your elbows as well as your wrists. The nerve doctor - he had a savage little machine for testing nerves by applying electric current - had no idea why it has chosen to manifest now, and there are a couple of things we could do about it, if it got bad enough to make it worth the hassle. I can live with that.)

Reading back through this, I feel I should be happier. In all these years, and so much chemo, we’ve never got anything like this level of response from my myeloma. These wonder drugs are remarkable. I have a couple of friends who have been treated with similar, but different, drugs and I think we all report broadly similar: outcome good, side effects bad. And, as a drunk friend put it to me at a party, not so long ago,
“You’ve lasted much longer than we thought you would”.

Right now, light chains or none, I’m still in the hole. I’ve still got to keep visiting the hospital, for periodic doses of elranatamab. I live in trepidation of that.

So I guess I should let out a little whoop whoop. That said - and I don’t want to sound ungrateful - being kept alive isn’t, on its own, enough.

What follows is a load of steroid induced wordy nerdery about light chains. You really don't need to read this! Some of you will know much of it already, and can award yourselves a gold star

Light chains are not myeloma, they're a consequence of it. They're used as a proxy measure because they can be detected with blood tests, whereas myeloma cells, residing in the bone marrow, are more difficult (let's be honest: painful) to reach. Myeloma is the cancer you get from mutation of a type of cell called plasma cells, which are a differentiated form of a cell type called B-cells. Plasma cells should normally produce antibodies - immunoglobulins. These are the body's memories of previous infections. They're the reason we fight the same disease better on second and subsequent exposure. Myeloma cells, rather than producing relevant antibodies in conjunction with the rest of the immune system and in response to the presence of infection, as a normal plasma cell would, just pump out whatever they're pumping out, unregulated. Typically that's a whole immunoglobulin, a protein made useless by not being relevant to the body's need: so referred to often as a paraprotein. Paraprotein measurement is the normal way to detect myeloma. It shows up as a massive spike of just one immunoglobulin being produced to excess. But about 10% of myelomas - including mine - don't produce whole antibodies, but just one bit of them, called a light chain. Again it's the vastly abnormal quantity of these that is what we're measuring. Light chains occur in the blood anyway, as part of the natural breakdown of antibodies. In low concentrations they're not of themselves a problem, but in excess they can bung up the kidneys causing irreparable kidney damage. A normal serum free light chain reading for kappa light chains is around 20. (It's even more complicated than I'm telling you here! There are five types of immunoglobulin, IgA, IgD, IgE, IgG and IgM, and two types of light chain, kappa and lamda, and you can have tumours secreting any of them, though some are very rare. Mostly they're symptomatically indistinguishable and all considered myeloma. But Waldenström's Macroglobulinemia, for example, caused by mutated plasma cells secreting IgM, has distinctly different symptoms.) At diagnosis, and again at the start of treatment, my light chains were up to 1,300. The actual number is irrelevant. Some people's myeloma cells are more prolific than others, so for the same tumour load some people will get a much higher light chain score. But other than the kidney risk, it's the tumour load, not the light chain load, that we're most worried about. So the score has to be calibrated to the individual. Some people have scores ten times mine. Others secrete almost nothing at all. For me previously (this could change in future), things have tended to get bad, symptom wise, once it has hit around 500. My light chains have never previously scored below 60, meaning there's always been some myeloma detectable, never a complete response. So the most recent result came as a surprise. Scoring just 1 means not only is there almost no myeloma, but there are almost no antibodies breaking down, and therefore no normal plasma cells producing them, either. This is not surprising, since elranatamab attacks myeloma cells by attaching to a surface protein called "B-cell maturation antigen" (BCMA) which, as its name suggests, is expressed by B-cells. It's incredibly potent. I get just over 100mg each dose, so I've had a gram or so in total, and it's wiped out all my myeloma, and more. It's a lot more discriminating than most of my previous chemos, some of which couldn't tell the difference between a myeloma cell and a hair follicle! But that's little consolation for my plasma cell population, which is a key component of the immune system. So... my light chain score is remarkable. It never occurred to me I'd get a response like this. I didn't believe them when they told me. And I guess I'll find out what it will mean to live permanently with such depleted immune system, because while I continue taking elranatamab, my plasma cell population will not be able to recover.