Tuesday, April 17, 2007

This may be a little bit early...

...But I'm going to post this anyway.

Wednesday before last- so that would be 5th April 2007 - I was diagnosed with Chronic Myeloid Leukaemia. It's not something you expect to find out at 34 really.

The Thursday before that I'd gone to my GP and complained of nightsweats. I'm not talking a little bit of moisture here I'm talking soak the duvet through from top to bottom. At first he said that this was something that could be completely random and unexplainable, but after discussing what I might be able to prevent them from happening he suggested I come in for some blood tests.

So up I rocked and had the routine tests and then at 7pm that evening I got a rather panicky phone call from my GP.

'Errr errr you've got to go to St Thomas's tomorrow at 9.30am they're expecting you. You've got a very, very high White Blood Cell count'

'Ummm Ok, what does that mean then?'

'Well they think you have leukaemia. So they need to test you again. Do you have any questions?'

Now I've since found out the GPs are likely to come across about 5 cases of leukaemia in their entire career so this phone call isn't the most common they make during their working life, nevertheless I can't imagine how she could possibly have handled it any worse other then screaming 'you're going to die, you're going to die, oh pity your children, you're going to diiiiiiiiieeeeeeeeeeeeeee'

Anyway my response was stunned silence followed by 'No not really, I have no idea what to ask'

'Errr ok, well if you have any questions I'm sure they'll be able to answer them tomorrow'

'Erm OK right, bye'

I came off the phone numb, my mind a complete blank and then when Nicky came down from putting the boys to bed I burst into tears. My next response was to ring my Dad who understandably was rather shocked and then I got on to the Internet. My searching lasted for about 5 minutes, at which point I realised that I could probably surf all night and still not come up with any answers based on the scant information I'd been given by my inept GP and so I waited. I slept well, but then I always sleep well regardless of what's going on in my life and the next morning I trooped off to St Thomas's with Nicky.

At 9.30 I sat down with a Registrar and she delivered the news. From the blood sample they had analysed they were 99% certain that I had Chronic Myeloid Leukaemia. My White Blood Cell count was 145 and it should be somewhere between 4 and 8. She then went on to say that they were going to run a whole raft of additional tests, more bloods, a bone marrow sample and bone trefanning which is taking a piece of bone from my hip for analysis in order to confirm diagnosis and also determine which treatment options were open. She then said, 'I'll admit if you'd presented 10 years ago we'd be telling you that you had 5 years, but things have moved on so rapidly that we're very confident we can tackle this very effectively. We've made fantastic strides and there are drugs now available that are proving extraordinarily successful in the fight against the disease'

The day flew by in an absolute whirr. I had a very uncomfortable procedure under local to take the bone, had half my blood drained and met my consultant who I can comfortably say is one of the most amazing people I've met in my life. She explained exactly what was happening. Basically (and some of this may be inaccurate and very brief as I'm new to this) two of my chromosomes have swapped to create what is called a Philadelphia Chromosome - basically it's a mutant. This Philidelphia Chromosome is in turn creating an enzyme which in it's turn is stimulating the creation of additional White Blood Cells. In itself having a huge amount of White blood cells is not the problem, it is more to do with the maturation of those cells or lack of in fact. Although she doesn't know she suspects I've probably had the condition for approximately 6 months judging by the number of non-maturing cells which are relatively few at this stage.

What that meams is that I'm in the first stage of three i.e. the Chronic phase - typically untreated this would last between 3 and 7 years, this would then turn in to the acute phase which could last between a year and 3 years and then finally it would transform into what is known as the 'Blast phase' which is around 6-9 months.

Now for the good news. 7 years ago NICE passed a drug for use in the UK going by the brand name Gleevac, the drug itself is Imatinib. It's effectively the first drug that has been developed to target the root cause of a cancer. What it does is aim to switch off the signal from the Philidelphia chromosome and thereby halt the over-production of White Blood Cells and eventually reduce the count back to normal i.e. between 4 and 8. At this point you can be counted as in remission and they can say they have achieved 'molecular cure'. That doesn't mean the cancer's gone but it does mean it is no longer having any effect. So if a patient in remission comes off the drug they will end up with the White Blood cell count going back up.

The stats I was given are thus. The drug can be used by those sufferers that are Philidelphia Chromosome positive of which 95% are. I've subsequently found out that I am one of those 95% and of those 95% - 80 to 90% are in full remission, this is based on the 5 years of data that they have available since the drug was introduced. I have to say if I had to have cancer I don't mind those odds, they're pretty fucking good. What they can't tell me obviously is whether those patients will remain in remission, however, they have said there is no reason to think that this trend won't continue and that is certainly how our mindset should be.

At the end of the day I was put on to a drug called Hydroxycarbamide, this was the drug that pre-dated Imatinib and is a much more generic drug - effectively it aims at reducing the White Blood Cell count by blasting the cells but does not have the molecular changing properties of Gleevac (again this is a desperately basic description of what iot does). I will be going on to Gleevac after a couple of things are cleared up. First, I have to make a sperm donation as the Imitnab will make my sperm toxic and second I have to make a decision about whether to enter an ongoing international trial - which I'm not going to expand on just now - but basically I have to decide how many side effects I'm willing to put up with.

As it stands 2 weeks later I'm in pretty fine fettle under the circumstances - I had 6 days away with friends over Easter which really helped to clear the head, I'm at work (who have been very supportive), I'm still cycling - at least until the side affects of the drugs kick in (which will be a rough ride for up to 3 months by all accounts), the kids are good, Nicky's sister and parents are down for a week and a half so she has a lot of support, my step mother has decided to put off her search for a new job to be available whenever we need her until we find our feet and on and on.

I have to say I'm very glad I'm in this situation having got myself thin and fit and without the hassle of running my own company anymore. Any time in the previous 8 years I would have been in a far worse state. We're also 2 months off moving out of London. So alot of the traditional 'where's my life going' thoughts have been negated because we're in the middle of changing it for what we believe will be a far better life for us and the boys.

All in all if shit like this was going to strike it couldn't have done it at a better time and as I said to my dad the day I was fully diagnosed 'Actually you know what, Bollocks to it, I'm not having it, I've got too much on'