At the court of Emir Elranatamab

 

I was told that my new Myeloma drug sounded like the name of a Pasha or Emir or possibly a Satrap. Anyway, an exotic leader who would certainly not be called a king.

And here, as every 28 days, I am at the court of Emir Elranatamab, which is in fact the research ward up here at Addenbrokes Hospital in Cambridge. The photo is the view over my screen into the little ward where all of the patient-based drug research takes place here. I am on first-name terms with the four nursing staff who run the ward and make sure everything goes right. 

They have an interesting job, because as well as having to make sure that all the correct observations are taken while drugs are being administered, and having to watch out for any unexpected reactions that subjects have, they also have to record everything in meticulous detail (always double-checked when it comes to medicines) to that they can prove hand-on-heart that they have followed the 'protocol' of the particular trial they are administering.

I was lucky in my trial, which is called MagnetisMM-7 (snappy, huh) because it was an 'open' trial in the sense that you had two active real treatments to which you would be randomly assigned, and you would know which treatment you were on. Luckily I was assigned to the arm that uses an experimental drug (well in fact an experimental early use of a drug which is usually used much later) to try to extend the first remission I have with my Myeloma before the first relapse occurs (which it always does). Extending that first remission is a really good idea. 

So far the response has been very good, according to my consultant, and long may that continue. I'll be on here for another year and a half and then the drug stops, but apparently with many maintenance drugs the effect continues for quite some time. 

The thing that I have to wonder about is whether any of the patients in here are on 'double-blind' placebo trials, where a real treatment is compared against a non-functioning lookalike. I will see if I can find this out, because it must be a little odd to know that one of the drugs you are administering is completely effect-free. Well I suppose even placebo effect is an effect.

The ward is small and friendly, with only eight beds, but the occupancy varies a lot. Sometimes I have been in here on my own, with four staff to care for me. Other times, every bed has been full. But the staff are relaxed, even though they spend a lot of their time double-checking facts so as not to accidentally spavin an expensive trial. It is one of those interesting specialisms within nursing, and you feel you would only get into this work accidentally even if you find that you really enjoy it when you get here. 

And the payoff for them I'm sure, as well as making sure that all we subjects have a comfortable and well-informed stay here, is that their work might help people in the future who will now have improved and tested ways of pushing back their diseases and extending their lives. And of course that is something that I am much in favour of with Myeloma. And there was one very interesting and hopeful fact that the head nurse in the department passed on to me. I think she has been working in the unit for 10 or 15years; she said that when she started, there were hardly any trials conducted for Myeloma. But now she said Myeloma is probably the top cancer for which they conduct research. So it is a cancer where new developments and new approaches are coming up all the time. And even though I am not expecting a cure, an extension of life would be very nice indeed.