Epside 3: Evil Phil

The cells that make up our bodies are just like us – they grow up, get jobs, have kids. The jobs vary from making hair or moving muscle to oxygen transport. Unlike us, they follow in their parent’s footsteps – if your parent was in the toenail manufacturing business then you will be too. As the generations pass, and as we get older, slight mishaps occur. A cell might still make hair, but it won’t be a nice shiny black hair but a bit grey. Some of these mishaps can have nasty consequences.

Cancer is one such consequence. The cell cycle goes wrong. Cells divide, but don’t get jobs or do their jobs properly. And they divide again and again and again.

With Chronic Myloid Leukaemia (CML), the cells that should be growing up into the myloid variety of white blood cells don’t. Instead they divide lots and your white blood cell count goes up. It takes a bit of energy to make so many cells so you feel tired. Your body tries to get rid of them and your spleen, whose job it is to remove trash from the blood, gets enlarged.

The actual CML mishap usually relates to a particular chromosome mutation creating the “Philadelphia Chromosome” – Evil Phil – formed when part of chromosome 9 (the abl gene) breaks off and attaches itself to part of chromosome 22 (the bcr gene).

I have Evil Phil in my body. Evil Phil’s signature bcr-abl (bee-sea-are-able) gene was measured at over 200 when I was first diagnosed. I’m not sure what it was 200 of, but it was not a good number.  It is now down to under 0.5 and has been bouncing around below one since February.  The aim is to get it to al level where it is undetectable.

Every month or so I travel down to hospital for another blood test to measure Evil Phil and a few other markers of my progress. Occasionally it is a bone marrow sample and I am soon going to celebrate one year since my treatment began with my third bone marrow biopsy.

The hardest part isn’t the needles extracting blood, or the big needle extracting bone marrow (that process is simple – I get zombied out and then it’s all over), it’s worrying about what this month’s number will be.

I have had the numbers go the wrong way. It was quite a shock. I was beginning to believe that all was well, the treatment was doing all it was meant to and the danger was over. Then the result came in with a bounce. Evil Phil was fighting back, maybe throwing another mutation into the mix? An analysis showed that it wasn’t a new mutation; just the drug losing effectiveness. Because I am on a trial, I was able to change medication and my numbers started dropping again.

Although my last test showed a small bounce – from 0.16 to 0.43 – my haematologist is happy with my progress so I wait for the next test and the next set of numbers to tell me what Evil Phil is up to.  

An electrospectromicrograph of the Philadelphia Chromosome, or Evil Phil.