The story so far...

I was diagnosed with Chronic Myeloid Leukaemia (CML) on the 09/09/09 after an initial diagnosis of shingles, a spleen the size of an unborn baby, a swollen stomach and a subsequent blood test showing a white blood count of 245 (a normal persons WBC is between 4-11).

Leukaemia might kill me; then again, it might not. But it’s certainly not the kind of prospect I thought I would be pondering in my early 30s.

Until my diagnosis, I hadn’t really thought of death. Well at 29, why would you? I was at an age where I thought I was getting somewhere, I was creating my future. Death was something that happened to older people or sick people on the news. I exercise, I eat well. This death malarkey won’t be relevant to me for a very long time, so let’s deal with that then. Let’s get on with life.

Then BAM!, overnight I became one of those sick people.

My life will never be what it was before. I guess that’s a really important thing that people have to deal with when they find out they have cancer – that no matter what happens, they can’t go back to the carefree feeling they had before. I have a new intimidating reality that involves measuring the amount of mutant BCR ABL Philadelphia Chromosone (CML) genes that threaten my body. But as people with CML say, life becomes a ‘new normal’. I still do and enjoy all the things I did before, I work, I go out with friends, I play netball, damn, I have even completed in a triathlon since my diagnosis. But life has got a bit busier, I also now attend hospital appointments for regular check-ups, I have become obsessed with blood levels, scared of bone marrow biopsies, I have become good at listening to my body, resting when I need to, recognising the signs of Neutropenia and injecting myself with GCSF growth factor. But most importantly I have become a good listener and made some very dear CML friends.

As they say in Thailand: same same, but different.

Now my response to treatment thus far hasn’t been ‘textbook’ to say the least. I failed the 1st line maintenance therapy drug (TKI) Imatinib, with a bone marrow biopsy showing 100% cells leukemic after a considerable period on the drug. (The aim is to get to 0% on a biopsy.) I then moved onto a stronger 2nd generation drug, Dasatinib, again my biopsy showed 95% of my cells as leukemic. I just couldn’t seem to shake this CML. In addition, I am not known to have any other mutation that would render the drugs useless.
I figured that that this CML was created by me, I am as stubborn as mule, so why wouldn’t my CML show the same traits. Trying to turn this light switch off with a finger wasn’t working, so now let’s try with a sledgehammer...

In December 2010, the decision was made to move to a reduced intensity allograft bone marrow transplant. I have a 10 out of 10 non-related match identified in the USA and we were moving forward with a mini transplant for April 2011.

To add to my ever increasing list of things you shouldn’t have to do before your 30, because the transplant will most likely render me infertile, my husband Chris and I decided to undergo the first half of the IVF procedure. We moved forward with the treatment and dropped off 12 embryos at the ice rink. We will pick them up one day, we promise lads. Well actually, on second thoughts, maybe not all of you...

However, there is another twist in this tale, a new 3rd generation TKI has come to the UK in phase 2 trials. The ARIAD trial: AP-24534. Ponatinib. And I have had the chance to be one of the first people in the UK to try the drug. It’s shown great promise in Phase 1 trials in the USA and I am eager to see what all the fuss is about. I figure that at its worst this drug keeps me out of hospital to enjoy the summer before a transplant in Autumn, but at it’s best I will finally get to see some reduction in my bad genes and pave the way for others in this new pioneering treatment.

So as all good lab rats discover, documenting the journey is all part of the trial. I hope this diary will help others dealing with CML. So, join this lab rat on her journey into unknown and fingers crossed I don’t grow a third ear on my back...