I know its very bad karma to wish cancer upon others but selfishly for the sake of my children I wish Bill Gates would get my type of KRAS mutated colon cancer. Just briefly and then obviously cure it and cascade that knowledge to the rest of us lowlier and less affluent cancer victims

The tools are here to cure it right now – its just a case of someone really rich getting it and then throwing ridiculous amounts of money, time and experts at it. My great white hope lies in immunotherapy. For decades it was scorned by conventional medics as a “snake oil” medicine – a panacea that does nothing.

However last week immunotherapy officially became mainstream with the NOBEL PRIZE being awarded to two immunologists for their game changing work in harnessing the immune system to fight cancer.
It works by helping the body’s immune system to get rid of cancer cells and it is being predicted that many different types of cancer will disappear in the next few years because of immunotherapy. Already it has transformed the survival outcomes of metastatic melanoma. This type of skin cancer used to be a quick death sentence – Liam’s dad died of it in 2001 – but now a third of patients are still alive and perhaps even cured years after their prognosis ran out.

Here is a beautiful picture of immunotherapy in action. The big yellow ball is the cancer cell being attacked by immune cells.
I’m convinced that immunotherapy is where my salvation lies.
My colon cancer idol is a middle aged mother of 5 from Michigan, USA called Celine Ryan. She was one of the first people in the world to receive a new type of immunotherapy for her metastatic colon cancer (thats what i have too). It was called TIL therapy.
Celine was admitted to the National Cancer Institute in Bethesda, Maryland and what then happened to her is the stuff of science fiction novels. Her white blood cells were harvested from the tumour and “Tumour Infiltrating Lymphocytes” or TILs – a type of highly specific immune cell – were removed and grown into a vast fighting force in a petri dish. They were then infused back into Celine’s body – 100 billion of them – a veritable army of focused cancer fighting cells. Over the next few weeks and months 6 out of 7 of her tumours just dissolved under the onslaught of the cancer killer cells. The last tumour had mutated again – which was why the army couldn’t take it out – but it was surgically removed. Her doctors won’t call her cured yet as its still early days but she remains cancer free more than 2 years on. She is a shining beacon of hope to people all over the world with my type of cancer. Here is her most recent blog post:
http://cancerriot.blogspot.com/2018/02/follow-up-13.html
So to summarise – modern science can make a medicine out of your own immune cells that will beat cancer (well in some people anyway).

So how do I get myself distilled into medicine? Well I emailed the National Cancer Institute in Bethesda, Maryland. They got back to me to say that if I was the same cancer mutation and tissue type as Celine then I could be considered for their trial.
And I’m half way there because Celine and I do share the same genetic mutation in our cancerous cells.
This isn’t actually that much of a surprise. In fact the “KRAS mutation” as this little b*astard is enigmatically called is THE most common cancer causing mutation. It is also one of the most intractable.

Described as “undruggable” by eminent immunotherapist Prof. Carl June, (incidentally whose colleague in arms just won the Nobel prize) he goes on to say: “mutant KRAS genes have one of the most dismal outcomes of all solid tumours and present an unsolved problem in cancer medicine.”
It really is a bad card to get. But two and a half years later Celine is, dare i say it, “cured”? She is one of only a handful of people that i’ve heard of who have been cured of their stage 4 colon cancer. Though her clinicians won’t use the “c” word (cure) till many more years have passed.
I’ve looked at her photo an awful lot as I’ve read and reread about her in several articles and medical reports. This sounds crazy but I think I look a bit like her:


She’s got glasses and fair hair with a pleasant mumsy /librarian look to her. I think we look like we could be related which I reckon (in a very optimistic and unscientific leap of faith) means there is a good chance we share the same tissue type. And if I have the same tissue type then I too could get this amazing cancer zapping treatment. Liam thinks i’m stalking her. Stalking to a whole new cellular level.
And so this is where I am today. And my belief in the forthcoming immuno-revolution is one of the reasons why I’m not letting my very depressing situation get me down. I just hope the revolution hurries up.
I’ll let you know the outcome of the tissue typing in my next blog. I’m not staking all my hopes on being Celine Ryan’s long lost sister though. It is really a bit unlikely. I am staking my hopes on finding myself somewhere to get me made into medicine. And thanks to my amazing friends who are raising money for me to be able to afford this very expensive medicine I am getting ever closer to this goal wherever it may be…
NOTE TO THE FUTURE: even if this KRAS mutant takes me out I maintain that there exists right now the means and powers and capability to cure my cancer (and others) through immunotherapy.
Dear Claire, so in awe of your positivity and your beautifully witty, amazingly informative and very moving blog. I’m so sorry you’re having to go through this shitty time, but what you’re doing is super inspiring and I know you can do this! I’ve been thinking of you so much over the last few months and will cough up lots of dough to send you off for immunology! Lots of love to you, Liam and the kids. Xx
Dear Clare, my wife and I just spent three nights with Moya and Arthur in the Mill @ Muchalls. We’re close friends of John Berkahn who introduced us all. We were knocked out with the hospitality and also the amount of love that is generated in your families. We wish you well on the road to the cure and will be following you on your journey. Hope we meet sooner rather than later.
Best regards Karol and Clare Cioma
To write such an informative and witty blog in your circumstance is testament to your very special personality and talents. Go Claire and keep on stalking!