Henry Winter
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Nigel Deekes’ story

Henry Winter
Posted by
26 Jun 2013

“I was diagnosed with chronic myeloid leukaemia (CML) on 21 September 2011. I was 45, with a wife and two children and I had no indication that I was ill.

My wife had commented on some weight loss and I had noticed a little lump under my ribs, which turned out to be an enlarged spleen due to my high white blood cell count.  But otherwise I was very health and playing squash three times a week.

I had had a detached retina some years ago and so when I had some “flashers”, I took myself off to the eye hospital. I had several tests, including a blood test and two hours later I was told, “Get up to the hospital at 9am tomorrow”.

So there I am at 9am the next day with an excellent doctor, who is telling me I’m dying… well I would have been if I had been diagnosed before new wonder drugs, known as tyrosine-kinase inhibitors (TKI), had been discovered. The future is now actually very good for 95% of us.

The prognosis for CML was certain death in three to five years without a bone marrow transplant prior to the early 2000’s. However along came imatinib, the TKI wonder drug. 10 years of evidence has now led to the belief that patients can have a normal life span. Wow! Imagine being told that you have leukaemia, then told that this is the best one to have. What a difference!

Those first few days weren’t great, but a fantastic specialist nurse help put my mind at rest a little. I stopped playing squash for a few weeks while my spleen reduced, then I was back on court.

When I first started treatment with imatinib, I underwent a bone marrow biopsy and my results showed I had 95% Philadelphia chromosome-positive (Ph+) cells. Here I am 18 months later and tests can detect no Ph+ cells - that’s a complete cytogenetic response. I now have a BCR-ABL score of 0.4%. My aim is 0.1%, so I’m nearly there.

Life is completely normal - I work full time, play squash three to four times a week and have a lovely family. My journey has been good so far and hopefully if you are reading this yours will be as well. There are now three TKI drugs available and two more approved.

We CML’ers are lucky, if having leukaemia is lucky. We have the real prospect of a normal life span. Sadly not all do so well for various reasons and the side effects for some are hard. The work of Leukaemia & Lymphoma Research and others is so important to raise money to find a cure or effective cure for any and all types of leukaemia.

CML UK is a Facebook group I set up on the first anniversary of my diagnosis. Today, nine months on, we have 250 members - a really good, friendly, community. We help each other and give a lot of support, particularly to newbies when all is so scary. Join us - it’s a closed group so you can talk freely without family and friends seeing posts.  CML UK Facebook page

On a final note, the picture – I look healthy don’t I? It’s my favourite picture. It makes me smile - I look fit, well and happy. The real story is that it was taken three weeks before my diagnosis and so I was actually really quite poorly. Who says pictures can’t lie?”