“Science is sexy"
Liz Thomas was diagnosed with Chronic Myeloid Leukemia (CML) in December 2018. Today, on World CML Day, she's sharing her story with us.
In December of 2018 I was diagnosed with Chronic Myeloid Leukemia (CML).
Within a month of my diagnosis, I had a bone marrow biopsy and started treatment on a chemotherapy drug called TKIs. As you can imagine, it was a time of uncertainty and anxiety for both me and my family, involving many hard conversations.
But what I actually want to bring your attention to, is the options I had.
Science is sexy
In 2001, the 1st generation TKI drug, Imatinib, met FDA approval and was licenced in the UK, Europe and the US for use as treatment. Before this, a CML diagnosis came with an average life expectancy of 5 years.
The scientist behind it’s development received the Lasker-DeBakey Clinical Medical Research Award in 2009 for “converting a fatal cancer into a manageable chronic condition”. The development of this breakthrough targeted therapy has meant that now CML , more or less, has no impact on the life expectancy of a patient.
The continuous development into 2nd and 3rd generation of TKI drugs means that not only do you get to stay at the party, but the side effects one is left with have, over time, become more and more manageable - to the point I can live a life where people don’t even notice I’m in treatment.
In simple terms - back in December 2018 - it was serious, but it was never urgent. I always had time. I always had options!
Heartbreakingly, the same cannot always be said for other types of blood cancers. This constantly plays on my mind.
The Facts
Like many charities over the past few months, Blood Cancer UK has been hit massively by the effect of COVID-19. Resulting in a 38% loss in their fundraising income Expectation is it will take 4.5 years for this to recover to normal levels.
There is now a £1.8 million shortfall in available funds for medical research spending.
The simple truth is that less funding means less research and trials, which means fewer breakthroughs and therefore fewer new treatments. Sadly, in the first phase of the pandemic, for thousands of patients, clinical trials were paused, delayed or stopped altogether.
The Reason for Action
For me and my family, we get to experience the benefits from breakthrough research that was only made possible off the back of other people's generosity all those years ago. The benefit being, for better use of a phrase, my future.
I can’t even imagine how much harder the conversations would have been if I hadn't had those options that scientists and research gave me.
You might think I am trying to tug on your heartstrings to milk you for money. You are absolutely correct.
So, having never spoken about my diagnosis publicly before, for no other reason than I consider myself quite a private person - now feels like a good time to change that.
My aim is to find more ways to raise money for Blood Cancer UK for many years to come. But until life looks a little more normal, I'm doing the first thing that springs to mind.
I’m chopping my hair off… today.
As a good friend told me over a bottle of wine last week - if it wasn’t for my magic drugs, I’d have lost my hair anyway. So it’s time to give it away, and donate it to the Little Princess Trust whilst raising money for Blood Cancer UK.
If you'd like to support...
This past year has obviously affected people in many different ways. If you would like to donate some money to show your support, no matter how little, it would mean the world.
You can sponsor Liz today by heading to her Just Giving page: https://www.justgiving.com/fundraising/Liz-Thomas17
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