Wednesday, 18 May 2022


Don't push too far, your dreams are china in your hand. Don't wish too hard because they may come true and you can't help them. You don't know what you might have set upon yourself
China In Your Hand - T'Pau *

Finally, I’m on the escalator

Last week was pretty frustrating. Since leaving hospital it has become increasing obvious that the plasmacytoma in my back is pushing on nerves that make it very hard for me to walk and stand. My first few days of  'freedom' were, in reality, just another form of confinement. One of the 'joys' of myeloma is it throws different experiences at you each time. This time, I got to experience having to climb the stairs on my hands and knees.

So when the hospital let slip over the phone that they’d decided not to escalate my dose for week 3, I wasn’t happy. The dose at which maximum effectiveness of elranatamab has been measured without problematic side effects, is 1,000μg/kg. The purpose of my trial is to see if cytokine release (CRS) can be minimised by starting on a lower dose and then escalating. So in week 1 my first dose was just 50μg/kg, and the second was 250μg. In week 2 it should have gone up to 1,000μg/kg but because I’d had some CRS and also some neutropenia, we kept it down to 250μg/kg, again. Last week, I was assuming and expecting we’d move up to full dose.

I had, by some margin, the bumpiest consultation I’ve ever had with a doctor. At one point I walked out, and had to go find a bench to sit on to review and compose myself. Their rationale was to continue on low dose due to neutropenia, and the doctor even indicated that if neutropenia continued to occur, I’d probably have to leave the trial. I was pretty upset that the decision had been taken before anyone had even examined me, because if they had they’d see that I’m in need of treatment, not delay. I told the doctor that if the trial was not going to prioritise me, and treating me, and factor my needs into the decisions, then I’d prefer to give up on it now, and start on a different course. I also told the doctor the reason I’ve chosen this trial rather than the regular “standard of care” is that I imagine that other route would only buy me months. With that as the alternative, I’m quite willing to risk a bit of neutropenia to find out if this route can take me to a different place.

Then my blood results came back and I was still too neutropenic to treat. So we delayed a few days, while I went home to pump myself up with G-CSF. The beneficial outcome of this delay was that by the time we came to dose, the trial people had reviewed their decision in light of my symptoms and my (strongly expressed) opinions, and agreed to give me the full dose. 

Part of the problem with clinical trials is you’re negotiating with a piece of paper, the protocol, which is completely fixed, inflexible and not open to discussion. It can be exasperating, and makes one feel as though the patient is not the priority. I’m glad, in the end, that I blew up last week. That’s the first time a trial protocol has bent to my will.

So I had week 3's dose on Thursday (8hrs sitting around in hospital for a single injection) and it has caused me no side effects at all. It also seems to be further reducing my plasmacytomas, and although my walking is still pretty poor, I’m optimistic that at some point the plasmacytoma will reduce sufficient to completely release the nerves, and I will be set free.

This week (Monday) was the last of cycle 1 (6hrs sitting around in hospital for a single injection). All was good - my neutrophil level was this time abnormally high, so I’m going to reduce the G-CSF routine to just a single shot before treatment day. Maybe in a few more weeks I’ll be able to stop it completely.

Next week, the start of cycle 2, doubles the dose again, but reduces the frequency to fortnightly injections. This dose is experimental, so they’re going to incarcerate me again for a few days to keep an eye on me, starting on Sunday. Ah well. Another couple of opportunities to eat salted caramel sponge and custard.

The good news for the trial is that I appear to be evidence in favour of dose escalation. I only had mild (stage 1) CRS, which is below the threshold the study is measuring. And the drug elranatamab, if it works (and I’m increasingly optimistic it does), could be the dawn of a whole new era, as it appears to have basically no side effects once the CRS has gone. If in 6 months time I’m being kept in remission by a monthly injection, it will be almost miraculous. Right now though we're still waiting for clear evidence of efficacy, and I'm still pretty immobile. We're not out of the woods just yet.

In amongst my frustrations, I spoke with my wonderful nurse, who is always good at making me see sense, and calming me down, when I’m frustrated with the process of being ill and having to interact with the hospital. She reminded me - and she’s right - that the start of myeloma treatment is always a bit bumpy, and takes a while to settle in and settle down. I just need to be patient for a few more weeks until we’re confident and comfortable that the plan is working and the routine is stable.

Here’s what all the fuss is about. It’s amazing so much potency can come from something so small. You can see in the enlarged image that the quantity being injected is tiny. Even on the full dose, it’s merely a 2ml subcutaneous (ie into the skin, not veins) injection. Nothing more remarkable than your covid jab. As Arthur C Clarke said, any sufficiently advanced technology is indistinguishable from magic.

* Hospital treatment rooms are a haven for 80s pop radio

1 comment:

Matt Allum said...

Good for you for standing up and pushing them. So glad that things seem to be working. Keep the faith and keep fighting.