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'

29 comments:

Paul said...

Absolutely right Six, you can fight this. You've got a loving wife and family who will know when you need maximum support and when they need to ease back but still be there for you.

The internet can be a blessing and a pain in the arse, I know from personal experience the more you know the more you want to know and the more you do your head in.

It's very easy to think 'why me?' but once that initial phase has passed you need to be strong for yourself and those you care about - even though that won't always be easy.

I hope the move goes well and that you keep up your fitness regime as much as possible. As for the illness my thoughts are with you and your loved ones and with them you can beat this.

Lucy said...

Oh flippin heck Six.
I'm quite stunned.
But as your good Dr says treatments have really improved and I belive you will beat it.
Hugs, love and every good wish to you and yours.
x

Sarnia said...

I can only echo what Paul and Lucy have said.

You appear to have a marvellously positive attitude.

Good luck and very best wishes.

Six Years Late said...

Thank you all, I bloody well am going to fight it. Everyone's been extraordinarily supportive. I'm amazed by the generosity of my friends and family who've been brilliant.

Les Paul Junior said...

That's awful news, Six. I don't really know what to say.

I think you might know that my wife is a pharmacist. She has said on numerous occassions that the people who fare the best in these circumstances are the fighters who refuse to bow to the illness.

Nil illigitimum carborundum!

Don't let the bastard grind you down!

IsobelMagsBuchan said...

What a shock. I can honestly say that my heart skipped a beat when reading the first few lines of your blog. I am truly sorry that you and your family have to face this but admire your attitude immensely. To be honest Six, with the courage you seem to have, the support you do have and the total attitude that you have adopted, I don't think that the disease stands an earthly with you. It picked on the wrong one.

You have my thoughts, concern and a dollop of free love thrown in. They often say the cure can be more debilitatating than the disease, so hold on to that if/when the side effects of the treatment kick in because that light at the end of the tunnel is approaching ever nearer when you're feeling like pooh!

Dina Rabinovitch has some pretty interesting things to say about trials/experimental treatments when living with a cancer. You'll find her blog linked on mine.

I wish you power and patience in the fight ahead. Good luck Six.

Rupe said...

Six, I can only echo all the messages written here.
Your strength and family support and your move out of the smoke will help you, and I wish you a complete recovery. Good luck.

Anonymous said...

Imatinib wasn't around seven years ago. Who knows what will be around in seven years' time? You may not have this for life. Stay positive and I know you'll come through it.

Rosalind said...

All the very best to you and your family Six.

Thinking of you,
xx

David Citizen of the world said...

As you know my dad was diagnosed with cancer last year. He's treated it as a positive experience and interestingly for us he's gone from someone who was quietly slipping into senility to someone absolutely full of beans. The care he received was absolutely first rate - apparently UCH are the best in the world - and last week he got the all clear. I know you will too. Fight back at the bastard.

Six Years Late said...

Thank you one and all, I appreciate it. I will probably post quite a bit on here as I think I'll find it quite therapeutic, so bear with me.

The Great Gildersleeve said...

Six,
What a time for me to come backinto the reading and writing of blogs.

I echo all those before me have said. I know from my own illness I was torn as Paul says over whether the internet was a good thing as you can find a lot of good information but equally frighten yourself.

Case Notes on Radio 4 ran a programme on this illness only a few weeks ago(I think its still available on the BBC website)and it was very positive and said much as you did about the great strides they have made.

Thinking of you and your family.

G

Lucy said...

Oh we will do more than bear with you Six.
We'll have a laugh [a good black sense of humour always helps], maybe even a cross word or two but hey!

Six Years Late said...

Thank you TTG, I've had a look. Is it the progrmme that majored on Childhood Leukaemia? I've had a read of the manuscript and it does sound very similar.

Thank you Lucy, by the way what area iss your area of nursing speciality?

The Great Gildersleeve said...

I think it may be Six...what struck me was the programme was so positive and made it clear how things have improved and though children were featured, I remember the wife of a Dr was featured too.

Over production of White Blood Cells seems to cause so many medical problems.

In the last few days there is a new study that explains why people get high blood pressure and again as it develops the white blood cells increase.

And as you suggest...many conditions sneak up on us without warning because until the last minute we feel fine.

Even then a symptom seems to be nothing.

I very much advocate even a simple medical once in a while(if you have a good Dr)Blood pressure, urine test and a blood test can tell so much.

And my own Dr says blood tests cost so little, he has no objection to doing them because you may spot something that can be stopped before they develop into a problem.

But hey, if you feel well how many of us will trouble ourselves to go to a Dr, you go when you feel ill and often we wait because we think it will go away or get better in time. Trying to decide when is the right time is the hardest thing.

Kayfer Kettle said...

Hello Six.

Just wanted to send you all the best that my little prayers can muster.

With your lovely, positive attitude, and your good lady wife beside you, I reckon you've got the best foundations to face this.

Keep up the good work and don't let the bastard get you down.

K xx

raisins said...

Hello Six

Just to say that my thoughts are with you and your family. Stay strong. Stay brave.

xx

lucy said...

It was while ago now Six, mainly Surgical - orthopaedics and gynae. I did do a bit in the Community, all those perianal abscess dressings were fun!

lucy said...

Actually thinking about it again it was pilonidal sinus, not perianal that we used to dress, similar but not the same.

Curmy said...

Six, I've no doubt you'll come through this fine.
You've got completely the right attitude , a lovely family, supportive friends and workmates, and us rabble on here !
The best of luck Six, I'll be thinking about you a lot.(Hugs)

Span Ows said...

Hello Six...seems that like Gildy I picked a fine time to 'pop back in' to the blogs. As has been mentioned your attitude is spot on, I only hope that if I ever have to face something similar I have the courage to react as you have, however right now my mind can't shake the image of Lucy in a nurses's uniform :-/

Best wishes

lucy said...

Well I'm useless at bed baths Span but quite good with blood pressures...

Gavin Corder said...

Chin up Six! We really are all thinking of you.

The Great Gildersleeve said...

You probably caused a few raised blood pressures too, eh Lucy :-)

Lucy said...

Caused them in several ways and had a few myself too Gildy!
Its not for the faint hearted this medical lark.

Rupe said...

Six, how are you getting on?

Lucy said...

Is it a choice between chemo and translpant or the new drug therapy?

Six Years Late said...

Hi Lucy, The new drug treatment is the standard. they aim to achieve molecular remission at which point although it is still there it is completely under control and you live an entirely normal life. The easiest (although not entirely accurate) comparison, is to a diabetic recieving insulin. It means I'll be taking the drug long-term but that's a small price to pay

Six Years Late said...

Hello rupe,

Good thanks, you can see my update above.