Monday, 23 November 2009

It's AML

I spent the weekend in Durham with close friends and did everything in my power to forget the unknown. The fact was that I knew nothing - they had done some tests and there was a chance I had something nasty, but ... I knew nothing. Therefore there was no point worrying about it. That was the idea anyway..... I did reasonably well until I kept feeling the soreness of where the bone marrow biopsy was done. That brought it back until I calmed myself down.

But it is Tuesday today and I had an appointment with Hillingdon for the results of the biopsy. As soon as I arrived, I met some of the nurses I had met during the tests and everyone and everything felt very familiar. They did another blood test and then I went to see the Haemotologist Consultant with my parents.

"You have AML". I heard the words and remained calm. I don't know why I was calm. Shock probably. However, in a way it was what I suspected and it was just a play playing out in mind for which I already, somehow, knew the plot. The Consultant explained up front that nowadays they aim for 'Cure' not just for treatment but was honest about the prognosis. The words "this is a life changing event" rung in my ears....

Those who know me well know that I use planning and process to reduce stress and solve problems. Therefore we jumped straight into planning mode to put a structure around the next days and steps and to stop me concentrating on this 'life changing event'.

Weird thing was that I still felt absolutely fine. It was only when I was in Durham that I felt some breathlessness and I'm pretty sure that was largely psychosomatic. It's hard to accept you have something really really wrong with you when you feel ok. There are a lot of leap of faiths ahead, I guess.

The Consultant explained that there is a trial started for AML sufferers which is looking at 'cutting-edge' treatments - AML-17. AML-17 offers the current Gold Standard chemotherapy regimes but adds in a couple of new drugs (in my case, Mylotarg and an m-TOR inhibitor) for some patients to understand the effectiveness of these new drugs.

Therefore, two big decisions to come - do I go on the trial and potentially get the new drugs (eg 80% of trial participants will get Mylotarg) and do I go private or stay with the NHS?

In either case, I've been told I will need 4 rounds of chemotherapy that will take 4-6 months of mainly hospital time and that I shouldn't go back to work this week due to the risk of picking up an infection on the tube or in the office. Chemotherapy aims to kill fast multiplying white blood cells, such as leukemia cells. Unfortunately it also kills normal white blood cells, red cells and platelets (i.e. pretty much everthing). Each round of chemo takes about 1-1.5 weeks to administer, then a week whilst my counts continue to drop. Finally, my counts should start to improve and when my white blood count gets to a survivable amount, I can leave the hospital for a break before coming back in for the next round.

4 months seems like a long time .... can't really get my head around that right now....

(written retrospectively)

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