Consultant meeting update, and more good news

 

I had my monthly chemo treatment and the meeting with my consultant last week, but wanted to wait for confirmation before passing on the news, which is actually quite good.

The way that they measure the activity and level of your Myeloma (which is a cancer of the plasma cells in your blood) is by measuring something called paraproteins. These are like proteins but are in fact functionless zombie proteins (hence 'paraprotein') which are thrown off into your blood by the cancerous cells. They are a good proxy for how much cancer remains active in your body, so the paraprotein level in grams per litre of blood is what you hear people talking about if you log onto Myeloma support sites. 

When I was first diagnosed my pp level was about 30g per litre (and that is about an ounce of these dud cells in every litre of blood). That is a reasonably high level, and that is one reason they usually prescribe blood thinners as the zombies can make your blood thicken and cause physiological problems. But some people end up being diagnosed at 80g or even 100g (which is 10% of your whole blood body!). And in many cases the higher levels start to cause circulatory problems and often liver damage. I was lucky enough to escape all these.

During my first round of chemo (called DVTD for the four drugs involved) they got my pp level down to about 12g. After the Stem Cell Transplant in December 2024 it came down further to about 5g and then during the drug trial on Elranatamab it has consistently come up as 'less than 2g'. The standard test can just say it is less than that level but not exactly where it is. Then two months ago that standard test could no longer find pp traces at all, so a more sensitive test was used that could detect down to 0.2g. When that test also drew a blank, my consultant ordered one final urine test which also came back with 'undetectable'.

So my official level of paraprotein is now zero and I am officially in 'stringent remission', which is very good news and I did not realise that this was a possiblity, with the genetic variant of my myeloma. It means that in practice it is as if I don't have myeloma, and I have certainly had no symptoms related to it for about a year. Even the treatment has been very free of side-effects.

The thing to be clear about is that this is not 'cured', because you are never cured of myeloma. There are still cells hiding away in my bones which will eventually decide to return. But it may be a long time now, and longer than I expected. And even when they do return there are several other treatments that can take over from good old Elranatamab. By the way, I checked the cost of this drug in the US. There the treatment costs $40,000 a month. But as I am in a trial by the drug company itself, it is free to me and to the NHS researchers. But thanks NHS anyway!

And the other very good news is that the consultant thinks that the trial rubric indicates that when I get down to 'complete response' it may mean that I only need treatment every six months instead of every month. Which would be great.

The drinks are on me!