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

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: I wasn’t born yesterday

Leukaemia Care has published this outstanding report, it’s well worth a read. As a trustee of Leukaemia Care and a CML patient, I’m incredibly proud of the hard work that has gone into publishing this. Thank you. Kris
What’s the problem?
Research from sources such as Macmillan and Public Health England has shown that cancer survival worsens with increasing age. Older patients (those aged 65 and over) make up just under two-thirds of all leukaemia cases (64%). However, this group accounts for 81% of all leukaemia related deaths. The new report ‘Leukaemia: I wasn’t born yesterday’ looks at the challenges faced by older patients and makes recommendations for improvements.

What this means for patients
As part of our report, we undertook a survey of over 1,300 leukaemia patients, to uncover the inequalities that are impacting on cancer survival and patient experience.

Based on what you told us, we have made the following recommendations:
1. Improved awareness of the signs and symptoms of leukaemia, amongst the public and healthcare professionals, including the link between leukaemia and age.
2. Access to a clinical nurse specialist from diagnosis onwards for all patients.
3. Tailored information and support for patients, based on their individual need, not age. This should include guidance on finding accurate information online.
4. Equal access to clinical trials for patients of all ages, to ensure that robust evidence is available on the most appropriate treatment

What can you do to help?
1. Download a copy of the report (PDF)
2. Share the report on social media to help spread the word
3. If you’re aged 65 and over and have been affected by leukaemia, get in touch with us to share your story by emailing advocacy@leukaemiacare.org.uk or calling 01905 755977
4. Keep up to date with our campaigns by signing up to receive email communications from LC.

Meeting Colleen Fletcher MP

Meeting members of the newly formed All Party Parliamentary Group (APPG) on blood cancer is a little like collecting Pokemon. Stick with me. You see, you have to be patient but when you meet them it’s always a deeply fulfilling experience; I’ve yet to find a Zubat (an ultimately useless Pokemon).

The APPG on blood cancer was formed last year. 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. Bloodwise will provide the secretariat to the group.

I’ve been fortunate to meet three of the founding officers in the past: Jim Shannon, DUP MP for Strangford, Henry Smith, Conservative MP for Crawley and Jess Phillips, Labour MP for Birmingham, Yardley. Today I met the final member of the founding group, Colleen Fletcher, the Labour MP for Coventry North East.

The founders that I’ve already met have all been touched, in some way, by blood cancer. They are all driven, passionate and keen to make a difference to the lives of blood cancer patients. Colleen Fletcher is no different and her experiences are incredibly raw. Her husband faced a gruelling battle with Acute Myeloid Leukaemia in 2014 which resulted in a stem cell transplant; he is now free of leukaemia.

I was struck by her steely determination, her blunt honesty and her deep knowledge of blood cancer issues. We discussed many things including gardening therapy which she swears helped her husband get through his ordeal, the importance of early diagnosis, importance too of after-care, the inequality of cancer drugs including the issues with getting ponatinib to patients and the advent of patient power.

I’ve been mightily impressed by all four members of the group, Colleen is exceptional. She’s personable and has a voice that oozes confidence and strength; she’s a huge asset to patients and I trust her, absolutely, to represent us fairly and with passion. The group is a perfect storm and the members compliment each other perfectly. It’s good to be taken seriously and I believe that this APPG is a huge advance for blood cancer patients. I applaud all of those involved and offer my support in whatever action they take.

Thanks to Bloodwise for supporting the APPG and for all those involved in pushing the agenda for blood cancer patients.

Kris

Kris Griffin with Colleen Fletcher MP

It’s a cancer lottery!

Do you think that access to effective blood cancer treatment should be available to patients throughout the whole of the UK?

The ‪#‎CancerLottery‬ campaign from Leukaemia Care is calling for the Government to do more to ensure fair and equal access to potentially lifesaving treatment for blood cancer patients.

On July 1st, the way cancer drugs are funded for NHS patients in England will change, meaning existing and newly diagnosed blood cancer patients could miss out on the most effective treatments.

The proposed changes to the appraisal process could mean:

• Access to many blood cancer drugs could be reduced.
• Inequalities in access to rarer cancer treatment throughout the UK.

Leukaemia Care need your help and I’m happy to lend my voice to this campaign:

Sign this petition – https://www.change.org/p/david-cameron-mp-stop-unequal-access-to-cancer-treatment
and
Join the Thunderclap –  https://www.thunderclap.it/projects/42710-unfair-access-to-treatment?locale=en

No patient should be part of a #CancerLottery.

In this campaign video I talk open and honestly about what the changes to the Cancer Drugs fund mean for blood cancer patients (and other rarer cancers) and why we need to put pressure on the Government to do more to ensure it’s a fair system for all.

Kris Griffin

Trial: Discontinuation of dasatinib

The results of this trial represent an incredible leap forward for CML patients who, like me, are on dasatinib (sprycel). For the patients in this trial, nearly 50% who stopped dasatinib maintained a deep molecular response. The other 50% started taking tablets again and all regained a deep molecular response.

This represents a huge benefit for the patient who could, effectively, remain drug-free but it also represent an economic benefit. What was once considered an expensive drug could soon be considered a drug-for-life for only half of the patients who take it. This could be enough to present a new case to NHS England over funding.

Thanks, Kris

Taken from The Lancet haematology

Summary
Background
First-line imatinib treatment can be successfully discontinued in patients with chronic myeloid leukaemia after deep molecular response has been sustained for at least 2 years. We investigated the safety and efficacy of discontinuing second-line or subsequent dasatinib after at least 1 year of deep molecular response.

Methods
The Dasatinib Discontinuation trial was a prospective multicentre trial done in Japan. Eligible patients taking dasatinib and with confirmed stable deep molecular response were enrolled between April 1, 2011, and March 31, 2012. All patients received dasatinib consolidation therapy for at least 1 year. In those with sustained deep molecular response, dasatinib was discontinued. Patients were followed up every month in year 1 (clinical cutoff), every 3 months in year 2, and every 6 months in year 3 for deep molecular response and immunological profiles. The primary endpoint was the proportion of patients with treatment-free remission at 6 months after discontinuation. Molecular relapse was defined as loss of deep molecular response at any assessment. This study is registered, number UMIN000005130.

Findings
88 patients were enrolled in the consolidation phase, 24 were excluded from the discontinuation phase due to fluctuations in BCR-ABL1 transcript levels. One patient was excluded because of positive expression of major and minor BCR-ABL1 transcripts in chronic myeloid leukaemia cells and the detection of minor BCR-ABL1 transcripts during consolidation. Thus, 63 patients discontinued dasatinib treatment. The 25 patients who were excluded from discontinuation continued to receive dasatinib and none showed disease progression. Median follow-up was 20·0 months (IQR 16·5–24·0). Of the 63 patients who discontinued and were not excluded, 30 patients maintained deep molecular response while 33 patients had molecular relapses, all within the first 7 months after discontinuation. The estimated overall treatment-free remission was 49% (95% CI 36–61) at 6 months. No severe treatment-related toxic effects were seen. Treatment was restarted in the 33 patients with relapse; rapid molecular responses were seen in all 33 patients, of whom 29 (88%) regained deep molecular response within 3 months, as did the remaining four by 6 months.

Interpretation
Dasatinib discontinuation after sustained deep molecular response for more than 1 year is feasible.

Funding
Epidemiological and Clinical Research Information Network (ECRIN).

Update: MPs debate availability of cancer medicines

Following my previous blog post about Tuesday’s Westminster Hall Debate on the availability of cancer medicines, here’s an update on what happened.

A number of MPs from different political parties participated in the debate, sought by Jim Shannon, an MP committed to improving patient access to cancer drugs. This included two MPs I am scheduled to meet with on my next Westminster day in November, Mark Durkan and Nic Dakin, so it’s great to see they already have a good grasp of the issues we face.

Other MPs contributing to the debate included:

• Philip Hollobone, Conservative MP for Kettering
• Margaret Ritchie, SDLP MP for South Down
• Lady Hermon, Independent MP for North Down
• David Simpson, DUP MP for Upper Bann
• Gavin Robinson, DUP MP for Belfast East
• Sir Oliver Heald QC MP, Conservative MP for North East Hertfordshire
• Nick Thomas-Symonds, Labour MP for Torfaen
• Andrew Smith, Labour MP for Oxford East
• Andrew Gwynne, Labour MP for Denton and Reddish
• Marion Fellows, SNP MP for Motherwell and Wishaw
• Mark Tami, Labour MP for Alyn and Deeside

The debate focussed on the general inequity of access to cancer medicines which patients face, and the recent delisting of drugs from the Cancer Drugs Fund (which included a number of drugs for CML). Jim Shannon highlighted the need to develop a long-term, sustainable solution to the issue of the evaluation and funding of cancer medicines, in order to benefit patients.

Life Sciences Minister, George Freeman MP, responded to the debate on behalf on the Government and cited the commitment NHS England has made to implementing the Cancer Taskforce recommendations, which is encouraging. His view was very much that if NICE has recommended a medicine then NHS England has a duty to fund it, which brings into question drugs which NICE has chosen not to even consider appraising due to small patient numbers – such as ponatinib for CML and ALL. He also mentioned the Government’s Accelerated Access Review (AAR), which was due to report this September, but has now been postponed until 2016. Time will tell if the recommendations of the AAR live up to the Minister’s promises but an accelerated scheme that has consistently been delayed doesn’t fill me with great confidence.

Many readers of this blog sent me messages when we announced this Westminster Hall debate, they had written to their MP telling them about it and asking them to attend. If you did this and the name of your MP isn’t on the attendee list above please write to them again and ask why they didn’t attend; urge them to look into the issues surrounding the delisting of drugs from the Cancer Drugs Fund. I’d be happy to speak to them on your behalf or perhaps we can meet them together. It’s vitally important that as a small community we have a voice and are listened to.

Thanks, Kris

28/10/15 – ADDITION – you can watch a recording of the debate on Parliament Live TV here: http://parliamentlive.tv/event/index/6c473be6-564a-43d2-92e8-65aa6cec067d?in=09:30:00

Leukaemia Man – not exceptional (follow up)

This is turning into a rather extraordinary day and I hope that you don’t mind me publishing a brief update. I hope that you’ve seen my previous post regarding the situation Khalid Younis finds himself; he is unable to access ponatinib – a drug that is essentially his last resort.

The media have picked the story up. I’ve just been interviewed for ITV Central News, that’ll be going out this evening and I’ll be doing a live interview on BBC WM Drivetime around 1715. Please tune in if you are able and spread the word on social media.

The story has also been covered by the Daily Mail and the Daily Mirror, links below:

Mirror – Dying dad denied ‘life-saving cancer drug’ by NHS in postcode scandal is told his case ‘not exceptional’

Mail – Dying father-of-four is denied life-saving cancer drug by the NHS in postcode lottery scandal that’s outraged doctors

We’re breaking ground here and bringing, what is essentially a tiny disease, to public consciousness. We can and will make a difference. Khalid and his family deserve our support. Please help.

Cancer Drugs Fund Cuts CML Drugs (and what we can do about it)

Details from the recent announcement:

The Cancer Drugs Fund in England will no longer pay for 16 medicines, used in 23 separate cancer treatments.
All the drugs on the Cancer Drugs Fund list have been rejected by the NHS as a whole because they do not provide enough benefit for the amount they cost.
At the beginning of 2015, there were 84 funded therapies, but after a series of culls there are now just 41.
The fund was set up by Prime Minister David Cameron to provide access to such medication. However, NHS England announced that the fund was due to go £100m over budget in 2014-15.
The drugs will be formally removed on 4 November and the announcement will not affect patients currently receiving treatment through the fund.
Patients affected: Blood cancer – 1,759 patients.
The Rarer Cancers Foundation said the news was a “hammer blow” and estimated that 5,500 patients across a spectrum of cancers would miss out.

Source: Cancer drugs fund cuts 23 treatments from BBC News.
The official announcement from NHS England can be found here.

Before I start it is imperative to start that the announcement will not affect patients currently receiving treatment through the fund.

I’ve read a lot of things over the last few days. I’ve heard many opinions and chewed a lot of fat. Any way you look at this recent decision, it’s hard to take any positives from it; that’s clearly why emotions are running so high. But, let’s remember what Yoda taught us:

“Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.“

This is not a situation for finger-pointing or blaming people, countries or administrations we perceive to be at fault or guilty for a variety of suspected sins. One of the silliest suggestions I’ve read is that if that if we weren’t talking so many refugees in to the UK we would be able to afford the CML drugs. Not the case. Health economics doesn’t work like this. I’m not a fan of the Trident programme but I’m not daft enough to think that by scrapping it and saving billions we’d immediately be rewarded with the drugs we need. No, it’s more likely we’d get another station for High Speed 2. Joke. And for the record, I’m in favour of the UK playing our part and taking refugees.

We stand alone on this, fight our corner strategically and productively and make sure our voices are heard. Do I believe that campaigning hard will result in a reversal of this decision? No. But if we allow our voices to fall silent, when the day comes to start appraising drugs again, I want CML drugs to be at the front of people’s minds. I want people to understand that this is a poor decision about drugs that SAVE LIVES. I want the people responsible for the decisions to know that we are NOT faceless. I want them to know our names.

So what should we do? I believe there are two fundamental priorities to focus on:

1. To pressure the health administration groups in England to review decisions, open the appraisal process and ensure that we are part of the process moving forward – with respect to the reconfigured way of deciding which drugs to approve and which to reject.

2. To encourage pharmaceutical companies who manufacture our drugs to reduce their prices through Patient Access Schemes (PAS).

By playing this straight down the middle we position ourselves as the result of both health administration AND pharmaceutical company decisions. The decisions are unfair and unjust but that argument won’t win us any battles. A coordinated, strategic approach will. This means responding to requests for help with media enquiries, visiting Parliament to talk to MPs and writing letters to appropriate parties. It also means making yourself a more informed patient, understanding the process and contributing towards any changes. This is the only way we, as patients, will be part of any changes.

We’re doing this for our generation and the generation of patients that follow us. We’re doing this for the person diagnosed tomorrow who currently has fewer drugs available to them than when I was diagnosed 8 years ago. If that isn’t motivation enough to bring about change then I don’t know what is.

Thanks, Kris