Consultant Meeting April 2nd 2025

 

I wonder if they do any consultant meetings before noon on 1st April. The temptation must be almost irresistible for the consultant. But luckily they are all serious-minded and caring people, as was my consultant today.

I am coming to the end of the two months of 'Consolidation Chemotherapy' which they give you after a stem cell transplant (hereafter SCT), in order to squash down as many as possible of the cancerous little traitor plasma cells that caused this problem in the first place. I asked how I was doing and the best way to check this is by looking at the number of grams of 'paraprotein' in a litre of my blood. 

For those who missed the introduction back in July, the 'paraprotein' is a completely useless and functionless product (like a kind of zombie protein) that is pushed out in large numbers by the cancerous plasma cells in your bone marrow. It goes around your bloodstream messing things up. One thing it does is to actually thicken your blood so much that they have to give you blood thinners to keep it all from jamming up. I have been on Apixaban for many months. It can also make some of your organs struggle, so it is important to attack the source in the plasma cells and reduce the levels.

When I was first diagnosed in July 2024 I had about 30g of paraproteins in each litre of blood. Which seemed to me like a heck of a lot because in the old money that is about an ounce in every litre. Or another way of looking at it is that 3%  of all of my blood was made up of these zombie cells. But the four months of 4-drug chemotherapy from July to December pressed hard on the myeloma so that by the end of the four months I was down to 11g per litre. Still a lot, but much better. Then in December when I had the SCT, the paraproteins were pressed down even further (and I was pressed down quite a lot too, ending up with neutropenic sepsis for five days). But the result was that when I left hospital the paraproteins were down to 5g, which is only 0.5%.

The two months of consolidation chemotherapy have brought it down further and today it was standing at 3g. And apparently, the normal tests of the NHS only distinguish down to 2g because below that you have to use much more specialised equipment to measure the real paraprotein level

So I have the cancer left in me, but it has been pushed back a lot. And whether I have the Elranatamab trial in Cambridge or another SCT in either Cambridge or Ipswich, I have hope of a further squashing of the baddies.

And I have always stuck to the emotionally uncharged expectation for my own life by looking at the current average survival time from diagnosis. It was 5 years and 1 month when I was diagnosed in July 2024, so I would get through to August 2029 if averages were real life. But as all Oncologists correctly say "People are not statistics, they are people", to which, usually under my breath, I reply "But they are statistics when they eventually die". 

But the consultant today seemed happy to consider other outcomes which might well occur, saying things like 'ten years would be quite possible if you respond well to the treatment'. Which rather set me back in a way. I have quite enjoyed the certainty that I have to fill my boots as much as I can because my boots are time-limited. Maybe I will just have to fill my boots for longer. There is no point stopping what you have started.

And I see the Cambridge consultant on 17th April. Can't wait!