Roman Reigns & Me vs Leukaemia

When I got up this morning, trending on my Twitter feed was the news that the WWE (World Wrestling Entertainment) superstar, Roman Reigns (real name Joe Anoa’i), was in remission from leukaemia. In was in October 2018, in front of a packed arena, holding the Universal Championship belt, that he told the world that he needed to take time away to face the disease.

Just five months later he’s back and we should be celebrating this. But some people aren’t. Some wrestling fans think this is a work. Just to bring you inside the business a little, a work is an act that manipulates an audience in order to elicit a desired response. This is not a work. And my first feeling toward the people who were saying this was to scoop them up, slam them down on the canvas and cover them for the 1-2-3.

But I won’t. You see, there’s a fundamental flaw in all of this, Roman’s remission appears to be too good to be true. Looking great with all of his hair, five months after diagnosis doesn’t fit in with the traditional narrative of a blood cancer patient. Cancer doesn’t work like that, does it?

Actually, yes, some blood cancers do. I’ve had a similar type of blood cancer to Roman called chronic myeloid leukaemia (CML)  for 11 years now. I take a small white tablet every morning called a tyrosine kinase inhibitor (TKI) and it puts my leukaemia back in its box on a molecular level. I’ve had bad days where I’ve felt tired or a bit sick but I’ve carried on. I work full time in education and haven’t taken a day off sick through anything related to the leukaemia. It took me about 9 months to reach a haematological level of remission, in that my blood looked OK. It took 6 years to get to a molecular level of remission and now my leukaemia is pretty much undetectable. I’ve never lost my hair and I’ve never had traditional chemotherapy.

You see where I’m going with this? Roman is an elite athlete and it might surprise you that I’m not. We’ve both fought our leukaemia in our own way and in our own timeframe. But there is one thing that I guarantee will annoy any leukaemia patient who is in remission, that’s someone saying, “well, you don’t look sick!” Right now, that’s happening online. Can’t we celebrate Roman looking great and happy or would we prefer him hooked up to a drip, pushed out in a wheelchair? That’s our traditional view and if our traditional view has been upended, it isn’t a lie.

The treatment that has given Roman and me our lives back was hailed in 2001 by Time Magazine as the magic bullet for cancer. Times are changing, we’re the trailblazers and millions of people are now living because of that little white tablet. They aren’t having devastating does of chemotherapy and in most cases, after taking the tablet they are able to go to work or smash someone around in a wrestling ring. It’s still not perfect, some people get side effects from the drugs but as the treatment improves, so will the quality of life.

We’re winning this battle and if we can win this one, we can win other battles against cancer. So take the time out to celebrate this, think of a world where we could treat cancer with a tablet; isn’t that what we’ve been wishing for? I’m living proof. Roman Reigns is living proof and so are millions of patients across the world.

But, let’s not forget, and Roman knows this all too well, leukaemia can relapse. We’re all living on a knife edge from appointment to appointment. My appointments are six months apart and I still get nervous, I’m sure that I always will. It’s a strange way to live…but it’s better than the alternative.

If Roman wants to make an even bigger difference he’ll tell his story. He’ll educate people, in detail, on the journey that he’s been through and he’ll tell them why, after five months of being diagnosed with blood cancer, he looks fantastic. Give people even more hope and help them understand that whilst we are a long way from winning the war, we are fighting back.

Please share this, it’s a great opportunity to educate people on blood cancer which is the third biggest cancer killer behind lung and bowel cancer in the UK.

Kris is 43 years old and lives in Kidderminster with his wife and young son. He is a trustee for Leukaemia Care and to celebrate his 10 years of diagnosis he raised £10,000 for the charity. If you are a wrestling fan (or just someone interested in this story) and want to get involved with the charity and raise money, please visit https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/blog/wrestling-fundraising-ideas/

Kris holding his leukaemia treatment in tablet form.

#Kris10, Mission Complete

I suppose that I should have written this before I hit the target but it felt a little presumptuous.

I now struggle to find the words to convey the joy and relief I feel in hitting the £10,000 #Kris10 target for Leukaemia Care this morning. Thank you is a good start.

It’s taken nearly 11 months and it’s been really, really difficult. The walk and the recent Big Finish auction pushed us hard towards the line but there have been plenty of moment where I felt that I’d bitten off more than I can chew. It’s hard not to take things personally especially when the cause is something so personal. I’ve developed some thicker skin and a newfound appreciation for professional fundraisers. In fact, I just don’t know how they do it, it’s an incredible skill.

Nearly 11 years ago I was diagnosed with leukaemia but you know that story. The story now is about supporting people who are diagnosed with a blood cancer today, tomorrow, next week… Treatment options are improving and we’re making inroads into earlier diagnosis. There is a huge psychological impact on the patient after diagnosis and the emotional impact leaves lots of damage. Leukaemia Care do an incredible job supporting patients and families with the seismic shift a diagnosis brings and this money will make a difference.

Is there a better Christmas gift? We’ll save lives with this and given that you are reading this you are likely to have been part of this story and I genuinely can’t thank you enough for your support.

There’s always a long way to go; work like this will never end and our relentless commitment to making people’s lives better is worth it.

So, take the baton, run a marathon, jump out of a plane, fly down a zip wire or sit in a bath of beans. Go and write your own story. I’m done for now. It’s nap time. Happy Christmas.

www.justgiving.com/kris10

Birthday Thanks

Just a huge note of thanks to everyone who donated and sent birthday wishes. I raised £343 towards my #Kris10 campaign. That’s a lot of socks and pants.

We’re fast approaching £2,000 and we’ve taken a step closer to that HUGE £10,000 target.

Never too late to donate. www.justgiving.com/kris10

Big thanks. Kris.

Patient Experience Survey

The 2017 patient survey from Leukaemia CARE is now live and they need your help to improve the experience of blood cancer patients!

In 2016, Leukaemia CARE partnered with Quality Health to develop the 2016 blood cancer patient experience survey. 2,519 patients shared their experience of blood cancer from diagnosis through to living with and beyond cancer.

This survey has helped to provide evidence to the extent of issues faced by blood cancer patients in the UK and inform the work at Leukaemia CARE. The leukaemia-specific findings and subsequent recommendations for improvements were highlighted in the ‘Living with Leukaemia’ report – those relating to diagnosis were used to inform the #SpotLeukaemia campaign for blood cancer awareness month.

This year Leukaemia CARE’s patient survey is running again from September through to Saturday 16th December and I want you to share your blood cancer experience.

The 2017 patient survey aims to:

1. Provide a deeper understanding of the issues faced by blood cancer patients, particularly those diagnosed with rare types of blood cancer.

2. Give a greater picture of regional differences between patient experiences.

3. Understand which patient experience issues are getting worse by comparing results to those from 2016 – this will then prioritise the focus of future campaigns.

With your help, Leukaemia CARE will have a greater understanding of the issues faced by blood cancer patients. This will help direct their future work and bring about changes where they are most needed.

Share your experience. Inform the work. Improve the future experience of blood cancer patients.

TAKE THE SURVEY – CLICK HERE

If you would like to request a hard-copy of the survey, please call 01905 755977 or email advocacy@leukaemiacare.org.uk

Leukaemia CARE – Spot Leukaemia

This September for Blood Cancer Awareness Month (BCAM), Leukaemia CARE are working to improve public understanding of leukaemia and raise awareness of the most common symptoms patients experience before they are diagnosed.

In the UK, 38% of leukaemia patients are diagnosed via emergency presentation, compared to a cancer average of 22%. The key focus is driving earlier diagnosis of leukaemia, to improve patient experience and save lives.

Leukaemia Care has developed a campaign called Spot Leukaemia which encourages people to learn about leukaemia and the common symptoms. Leukaemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your GP sooner.

Leukaemia Care has also been contacting GPs to inform them of the campaign, so that they are aware of Spot Leukaemia and the messaging, in case patients ask them about symptoms they are experiencing.

The campaign is designed with one thing in mind: Awareness.

To this end, can you help Leukaemia Care raise awareness for this campaign by reading and sharing the information on this page and signing up for the Thunderclap?

www.leukaemiacare.org.uk/spot-leukaemia

Thanks.

Video: Taking blood

When I visited the hospital in October 2016 I decided to document my visit for the benefit of other Chronic Myeloid Leukaemia (CML) patients. The video does contain footage of blood being drawn.

I received my results early and my leukaemia continues to be undetectable. I hope that this video helps newly diagnosed patients or patients who have concerns about regular blood tests. Please contact me if you have any comments or questions.

Thanks for watching, Kris

MPs take action on blood cancers

There has been some great news for blood cancer patients coming from Parliament recently. Firstly, Henry Smith, the MP for Crawley (and someone I met with last year), has set up an All Party Parliamentary Group (APPG) specifically on blood cancer. The group will look into the key issues affecting patients with blood cancers, and is an acknowledgement that MPs understand that haematological cancers are very different to solid tumours – in the impact they have on patients as well as the need for different kinds of information, support and treatments to be available. MPs who will sit on the APPG include Jim Shannon, Colleen Fletcher and Birmingham Yardley MP Jess Phillips Bloodwise will provide the secretariat to the group. I hope to engage with the APPG soon, and will update you as to how I get on.

In addition to this, Jim Shannon and Henry Smith hosted a debate in the House of Commons last week to discuss blood cancers and the Cancer Drugs Fund (CDF). The debate, which took place in Westminster Hall, saw a number of MPs from different political parties discuss issues relating to the diagnosis, management and treatment of different blood cancers. Many of the MPs had had personal experience of blood cancer and spoke about how their families had been affected and the need to improve patient access to vital, life-extending medicines. Improved awareness of the signs and symptoms of blood cancers for GPs was also noted as being crucial to improving diagnosis rates and earlier diagnosis.

Another topic repeatedly raised during the debate was the appraisal methods used by NICE which don’t work for blood cancer medicines, which generally treat very small numbers of patients and don’t fit the usual model by which NICE evaluates the “value” of a drug. The ‘postcode lottery’ which exists in terms of patient access to treatment was also covered, something which I have campaigned extensively on, particularly in the case of Khalid Younis who could only access treatment with ponatinib by moving to Wales as the drug is not approved in England.

The creation of the APPG and the debate are very positive steps towards getting improved recognition of blood cancer. Parliamentarians focussing on the key issues can only be a good thing for patients. Whether or not your local MP is on the list of people who attended the debate or not (below), I would encourage you to write to them to ask them to support the APPG and get involved in campaigning for improvements to the lives of anyone affected by blood cancer.

The MPs who contributed to the debate were:

• Jim Shannon, DUP MP for Strangford
• Henry Smith, Conservative MP for Crawley
• Colleen Fletcher, Labour MP for Coventry North East
• Maggie Throup, Conservative MP for Erewash
• Martyn Day, SNP MP for Linlithgow and East Falkirk
• Nigel Dodds, DUP MP for North Belfast
• Nic Dakin, Labour MP Scunthorpe
• Dianne Abbott, Labour MP for Hackney North; Shadow Health Secretary.
• George Freeman, Life Sciences Minister

Thanks, Kris

Kris Griffin and Henry Smith MP

A DNA Sequencer in Every Pocket

I was delighted to have been interviewed by Ed Yong for his article in The Atlantic magazine about the MinION DNA sequencer. I’ve been talking to the company, Oxford Nanopore Technologies, for quite some time now and I’m very excited by what these brilliant people might be able to achieve.

I’ve reproduced the extract where I’m featured, below, but if you visit the source link you can read the whole thing. I urge you to, it’s the future!

Thanks, Kris

Source: www.theatlantic.com/science/archive/2016/04/this-technology-will-allow-anyone-to-sequence-dna-anywhere/479625

Kris Griffin was 32 when he went to his doctor with a bad back, and came away with a diagnosis of chronic myeloid leukaemia. Thankfully, two drugs—first imatinib, and now dasatinib—have kept his cancer under control with minimal side effects. Eight years on, Griffin is doing well. He’s an education consultant based in Kidderminster, England; husband to a partner he married just after his diagnosis; and father to a four-year-old boy. “I live a normal life,” he says.

He isn’t cured, though. His disease is caused by the abnormal merger of two chromosomes, creating a chimeric gene called BCR-ABL that makes his blood cells divide uncontrollably. That’s what dasatinib inhibits. To check that the drug still works, Griffin has to visit a hospital several times a year, so his doctors can measure the number of cells that carry the fused gene. The trips eat into his days, and the results can take weeks to arrive. “And there’s no bigger reminder to someone that they’re doing poorly than walking through those doors,” Griffin says.

He has always dreamed of carrying out the tests himself in the comfort of his own home, in the same way that people with diabetes can monitor their own blood sugar levels. A year ago at a London conference, he “saw this chap on stage with this little device,” he recalls. That was Clive Brown.

Brown spoke about using nanopore sequencing on people, to analyze the bits of DNA that are released into our bloodstreams by our dying cells. To cancer researchers, this circulating DNA acts as a liquid biopsy, which can reveal whether tumors are progressing, responding to treatments, or evolving resistance to drugs. Many companies, Illumina included, are getting in on the action, and developing blood-based tools for cancer screening.

But Brown thinks that if MinION and VolTRAX become cheap and accurate enough, people could monitor their circulating DNA themselves. “We need to get the price down by an order of magnitude, but there’s no reason why you couldn’t take a daily snapshot of the contents of your blood,” he tells me. He wants to bridge the worlds of DNA sequencing and the quantified self. “My intention is to give people a tool where they can understand their own biology and make their own inferences about it.”

Griffin lit up when he heard Brown’s vision. Maybe he could eventually monitor his own BCR-ABL levels and just upload the data to his doctors. “The power it could give to patients … Psychologically, it feels so important,” he says. He has been liaising with Oxford Nanopore ever since, and even though they’ve assured him that the technology still needs work, he is undeterred. “I want to be the guinea pig—the first person with CML to monitor my blood at home. I think this will mean everything to so many people.”

Daily monitoring might also reveal signs of an infection before symptoms occur. And it might reveal answers to questions that haven’t been asked yet. “No one has systematically inventoried circulating DNA over a long period, even in just one person,” says Brown. “What’s the baseline? It’s unknown at the minute. But we can get the data.”

Khalid Younis – A Letter From Number 10

In October I wrote this letter to David Cameron, our Prime Minister.

Dear Prime Minister,

The photo below is of me with my new friend, his name is Khalid Younis. We both have a rare form of leukaemia called Chronic Myeloid Leukaemia (CML). Treatment for CML was revolutionised in 2001 when Time magazine hailed a drug called imatinib a magic bullet against cancer. Now, 14 years later, my friend cannot access a new, potentially life-saving drug called ponatinib because it hasn’t been appraised by NICE.

Khalid Younis and Kris Griffin

I don’t understand why the cancer drug fund process was closed alongside the appraisal process, we find ourselves falling through an administrative gap. Khalid’s situation has attracted nearly 8,000 signatures on a petition and the story has been featured in the Daily Mail, Daily Mirror and the local Birmingham newspapers. We’ve contacted Khalid’s MP, Roger Godsiff and my MP, Mark Garnier. Mark knows my work and has always been really supportive.

Whilst I realise you have many responsibilities and must receive many letters like this; if you have time to meet or discuss this issue and help us I would be extremely grateful.

Ponatinib offers the last real hope Khalid has, not being able to access it in England is devastating.

Yours sincerely,

Kris Griffin (Mr)

Last week I received this reply:

Of course I’m disappointed, I’m not sure if I ever thought he’d agree to a meeting and fix the problem. My issue with this letter is that the Department of Health is part of the problem. They’ve allowed this issue to manifest and within the space of two days (last week) I’ve managed to extract three different dates when they expect the appraisal process to be ready. Not ready for use…oh no..ready for it to be reviewed. In the meantime, we don’t have an appraisal process and by that point we won’t have a cancer drugs fund. I don’t want to write a ‘told you so’ letter to our PM.

So, I’ll be writing to Mr Cameron again, perhaps I’ll also include the 8,000 signatures on this petition and ask him what he thinks the Department of Health will do; because from where I’m sitting they are making the situation worse.

Kris Griffin – Access CML Drugs

Visiting Oxford Nanopore Technologies

In April 2015 I visited the Wired Health conference in London, I write the following about a product I saw called the MinION:

Clive G Brown, CTO of Nanopore Technologies, spoke about how his company’s USB stick-sized DNA sequencer will enable an “internet of living things”. He spoke of how he could see consumers using this medical device and having results go to the cloud for diagnosis. Old DNA sequencing machines cost hundreds of thousands of pounds and are huge, this device costs just £650. Clive has a vision for immediate results on a device that can be run anywhere, he used an analogy of building it into a toothbrush so your biology can be sequenced every morning and monitored for changes.

A device like this could be revolutionary in the field of testing epidemics, environmental monitoring and infectious disease control. It’s predictive and preemptive. It could allow general self quantification in the same way diabetes patients track their blood sugar. For any leukaemia patient, like me, who has to have regular blood tests or bone marrow biopsies, several narratives converged for me at this particular moment in time.

Imagine a device that meant we wouldn’t have to visit our consultant regularly but still allowed us to do regular blood tests. It would pick issues up sooner, share results, save the NHS lots of money and do away with bone marrow biopsies. Imagine a device that could track chromosome abnormalities and check immediately for the philadelphia chromosome. The device you see me holding in my hand could be the key to unlocking all of that. This could also be the key to mass screening and therefore the saving of many lives. No pressure there then.

Clive is clearly a man who wants to keep expectations in check but I can’t help but get excited. I spoke to the team during one of the breaks and we are going to talk. This is one to watch!

Last week I was invited to the Nanpore offices in Oxford to give a talk to their staff about self-quantification. The talk ultimately ended up being about the life of a CML patient and the things we go through on a daily basis. It was an emotional rollercoaster and I felt the 150-strong audience were with me every single step. My talks are hard work, I don’t spare any detail but I try and look at things in a light-hearted way. I’m happy to share in order to get people to understand. Understand the patient and the process becomes simple.

After the talk I was given a tour of the offices and laboratories. It’s an incredible organisation with a talented staff who care deeply about their work. It was very humbling to meet so many good people. The CEO, Dr Gordon Sanghera, is driven, intense and inspirational and made me feel very welcome.

This won’t be last you’ll hear from me about Nanopore, I have high hopes from them in 2016. No one ever does something that changes the World because it is easy……they do it to make a difference. I hope I was able to show them enough to see what that difference will make.    Kris Griffin

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