So you may think I am crazy and at times I did wonder why the hell I wanted to know so much about my very scary illness but, I needed to know the facts to help me process it all.
While I was in hospital having my treatment my husband kept telling me that I didn’t realise how ill I was and what I have got. At the time I thought ‘yea I do, its Acute Myeloid Leukemia’ but I didn’t know exactly what that meant, cancer of the blood and at the time that’s all I needed to know. The treatment was so brutal that I couldn’t think about anything else. Once I had been out of hospital for around a month I started to feel curious. Over the next few weeks I spent a lot of time researching on the internet and I learnt a hell of a lot. I’ve always loved learning new things and in way I really enjoyed teaching myself about it but at times my heart would sink to my stomach when I read something particularly negative,
As part of my research I looked through all of my discharge summaries which did bring back all the trauma of it all as I re-visited it. I noticed a couple of phrases which I had read about on the internet, NPM1 and FLT3. These are genes that mutate in AML and from what I read if you have NPM1 you have a more positive prognosis and if you have FLT3 a much less favourable prognosis. Heamatology and oncology put patients into three categories, favourable risk, intermediate risk and poor depending the which genes are found in bone marrow aspirations.
When I saw my consultant last week I asked him about this and he confirmed that I did have the NPM1 gene but none of the FLT3! I was so happy, this was such good news as it puts me in the favourable risk category. Basically the genes that mutated in my bone marrow were the best of a bad bunch! Strange thing to say when talking about cancer but if you are going to have cancer cells mutating these are the ones you want!! I am still at risk of relapse, but less risk than some other poor patients! I’ve got to try to take this as a positive even though AML is still a very dangerous, scary disease that I am stuck with for the rest of my life!