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.

Tom Watson MP joins our cause!

I’m still trying to get my head around today! It may just be the most amazing thing to happen to the AccessCMLDrugs campaign to date. Tom Watson who is the Member of Parliament for West Bromwich East, Deputy Chair of the Labour Party and the Labour Party’s Campaign Co-ordinator has agreed to support our cause!

We met this afternoon in West Bromwich and spent some time going over the issues affecting CML patients, namely the unavailability of dasatinib. We discussed, in detail, the STOP trial data, the effectiveness of dasatinib, what the TKI (tyrosine kinase inhibitor) drugs mean to CML patients, survival rates and the cancer drug fund. I told him about our campaign so far and how hard it is get our voice heard, especially by NICE, the pharmaceuticals and his own party. He agreed that it is important to ensure that all CML drugs are available to patients, free at the point of delivery. He has told me that he will do all he can to support us, he looked me in the eye and he told me that he believed in what we are trying to do.

To say I was blown away is an understatement. Tom is one of the most powerful men in politics today and I’d gone prepared; I’d even taken my box of dasatinib to show him what this is all about. He was sharp, working out quickly how much the NHS could save if the STOP trials findings are conclusive and adopted in England. These being the ongoing trials where 40% of patients who achieve CMR (Complete Molecular Remission) over a period of time come off their drugs and don’t need them again. The other 60% take the drugs again and the leukaemia goes back into remission. Hopefully you never tire of me writing about this as a cure for cancer.

So that’s it in a nutshell. Tom wants me to put a report together and propose how I want him to help out. He was sincere, friendly and genuinely interested in leukaemia and blood cancer patients. I sat in my car for 20 minutes afterwards just taking everything in, it was emotional. The implication on what we are trying to achieve is huge and having someone like Tom behind us is simply fantastic (sadly that doesn’t feel like a big enough word).

I need to start gathering research and writing up that report but in the meantime I’m sure you will join me in thanking Tom for taking an interest in a handful of poorly people and their little fight to stop a big disease. Thank you.

Kris

Tom Watson, Member of Parliament (MP) for West Bromwich East, Deputy Chair of the Labour Party and the Labour Party’s Campaign Co-ordinator, with CML campaigner and patient Kris Griffin

Speaking and remission

I had some good news recently. My CML is still on the retreat and currently at 0.005% – on the verge of being undetectable – this has taken 5 years. As well as my brilliant support network I have to very grateful for dasatinib and all of the other TKIs that are giving people their lives back. It spurs me on…

I’m very humbled to have been asked to speak at various events this year and I’ll keep you up-to-date with where I am and when. If you find yourself in the same place please come and say hi – you’ll find me looking somewhat bewildered wondering why on earth people want to hear me talk 🙂

12 March 2013 – Medical Management Services – Melanoma workshop – London – DETAILS

20 March 2013 – Medical Management Services – Melanoma workshop – Warrington – DETAILS

11 April 2013 – Leukaemia Care – Leukaemia Support Group – Worcester

13 April 2013 – Leukaemia and Lymphoma Research – Impact Day – London

25 April 2013 – Leukaemia Care – East Midlands CML Support Group – Leicester

3-5 May 2013 – CML Horizons (11th International) – Expert Marketplace: Using the Internet in advocacy – Prague, Czech Republic – DETAILS

15 June 2013 – Leukaemia Care – Annual Conference – Worcester

All my best wishes,

Kris

6 year follow up data on dasatinib

Another study showing positive results for patients on dasatinib after 6 years who were resistant or intolerant to Glivec (imatinib). Yet more evidence showing that we need dasatinib to offer patients a complete range of treatment.

The original press release can be found here.

PARIS, June 15, 2012 /PRNewswire/

Results Presented at 17^th Congress of the European Hematology Association

Bristol-Myers Squibb Company (NYSE:BMY) and Otsuka Pharmaceutical Europe Ltd., today announced six-year follow-up results from a Phase 3 randomised, open-label, dose-optimisation study of SPRYCEL^® (dasatinib) in Philadelphia chromosome-positive (Ph+) chronic-phase chronic myeloid leukaemia (CP-CML) adult patients resistant or intolerant to Glivec^® (imatinib).

Long-term survival data

The six-year data shows progression-free survival of 49.3% and an overall survival of 71% for patients randomised to dasatinib 100 mg once daily (n=167), with 6% of patients (n=10) progressing to accelerated or blast phase on study at six years of follow-up.^[1]

Safety and tolerability data from patients randomized to the 100 mg arm during the six-year follow up are consistent with the previously reported safety profile of dasatinib 100 mg once daily. In this 100 mg QD arm, the most common grade 3/4 adverse events (AEs) were (cumulative 6 year occurrence): neutropenia (36%), thrombocytopaenia (24%), and anaemia (13%).^[1] The cumulative incidence rates of the most common non-haematological AEs of Grade 3/4 at six years of follow-up were: diarrhoea (4.3%), fatigue (4.3%), infections (6.1%) and pleural effusion (5.3%).^[2]

This is the longest reported follow-up of 2^nd generation Tyrosine Kinase Inhibitors for patients resistant or intolerant to imatinib.

Safety and Tolerability at Six Years

Safety and tolerability data from the six-year study are consistent with the previously reported safety profile of dasatinib 100 mg once daily. For full information on SPRYCEL (dasatinib) please refer to SmPC at http://www.ema.europa.eu/.

These data were presented today at the 17^th Congress of the European Hematology Association in Amsterdam. (Poster 0199).

About Study CA180-034

Study CA180-034 was designed to assess the efficacy and safety of dasatinib following intolerance or resistance to imatinib. The trial enrolled 670 CP-CML patients with resistance (n=497) or intolerance (n=173) to imatinibwho were randomised to one of four treatment arms: 100 mg once daily (n=167), 50 mg twice daily (n=168), 140 mg once daily (n=167) and 70 mg twice daily (n=168). In this pre-treated population, the median time from onset of CML to randomisation in patients on the 100 mg once daily arm was 55 months and 46% of these patients had more than three years of prior imatinib treatment. Data on the primary endpoint of the study, major cytogenetic response with a minimum follow up of 6 months in imatinib-resistant patients, have been previously reported. Thirty-one percent of patients randomised to receive dasatinib 100 mg once daily remained on treatment at 6 years.^[1]

About SPRYCEL^®

Discovered and developed by Bristol-Myers Squibb, dasatinib was initially approved by the FDA and the European Commission in 2006 as a treatment for adults for all phases of Ph+ CML (chronic, accelerated, or myeloid or lymphoid blast phase) with resistance or intolerance to prior therapy including imatinib and Philadelphia chromosome positive (Ph+) acute lymphoblastic leukaemia (ALL) intolerant or resistant to prior therapy. In the U.S., dasatinib received accelerated FDA approval for this indication. Since then, dasatinib has been approved for this indication in more than 60 countries worldwide.

In 2010, dasatinib 100 mg once daily was approved by the FDA and European Commission for the treatment of adult patients with newly diagnosed Ph+ CML in chronic phase. In the U.S., dasatinib received accelerated FDA approval for this indication. The effectiveness of dasatinib is based on cytogenetic response and major molecular response rates. The first-line trial (known as DASISION) is ongoing and further data will be required to determine long-term outcome. Now, more than 50 countries have approved dasatinib for this indication.

About Chronic Myeloid Leukemia

CML is a slow-growing type of leukaemia in which the body produces an uncontrolled number of abnormal white blood cells.^[3] CML accounts for 15% of all leukaemias.^[4] The incidence is estimated at 1-2 cases per 100,000.^[5]

CML occurs when pieces of two different chromosomes (9 and 22) break off and attach to each other. The new chromosome is called the Philadelphia-positive chromosome, which contains an abnormal gene called BCR-ABL that signals cells to make too many white blood cells. There is no known cause for the genetic change that causes CML.

About Bristol-Myers Squibb

Bristol-Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases.

About Otsuka Pharmaceutical Co., Ltd.

Founded in 1964, Otsuka Pharmaceutical Co., Ltd. is a global healthcare company with the corporate philosophy: ‘Otsuka-people creating new products for better health worldwide.’ Otsuka researches, develops, manufactures and markets innovative and original products, with a focus on pharmaceutical products for the treatment of diseases and consumer products for the maintenance of everyday health.

Otsuka Pharmaceutical Co., Ltd. is a wholly owned subsidiary of Otsuka Holdings Co., Ltd., the holding company for the Otsuka Group. The Otsuka Group has business operations in 23 countries and regions around the world.

Visit Otsuka Pharmaceutical Co., Ltd. at http://www.otsuka.co.jp/en.

References: 1. Rea, D., et al. Six-year follow-up of patients with imatinib-resistant or imatinib-intolerant chronic-phase chronic myeloid leukemia (CP-CML) receiving dasatinib. To be presented at: 17th Congress of the European Hematology Association (EHA); June 14-17, 2012; Amsterdam, The Netherlands. 2. Shah, N., et al. Six-year follow-up of patients with imatinib-resistant or -intolerant chronic-phase chronic myeloid leukemia (CML-CP) receiving dasatinib. Oral Presentation at: 2012 American Society of Clinical Oncology Annual Meeting. 3.Macmillan Cancer Support. Leukaemia Overview.   Available at: http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemia/Leukaemiaoverview.aspx. Last accessed April 2012. 4. National Comprehensive Cancer Network (NCCN). Chronic Myelogenous Leukemia – Clinical Practice Guidelines in Oncology – v.1.2007. 5. Baccarani, M. and Dreyling, M. Annals of Oncology. 2010;21:165-167.

UK job codes: 729UK12NP019 / OPUK/0612/SPC/2016, date of preparation June 2012

SOURCE  Bristol-Myers Squibb & Otsuka Pharmaceutical Europe Ltd.

My Story: Kris Griffin

When were you diagnosed with CML?

It was February 2008 and I was 32. I had recently started a new job in the education sector doing marketing and PR (Head of marketing & PR) for a not-for-profit academy sponsor.

How did the diagnosis come about?

The new job involved a longer commute and I was experiencing some pains in my back. I was also having night sweats and had lost a little weight which, quite frankly, felt totally insignificant. I had no idea that my body was sending out a distress signal. I went to the GP who prescribed paracetamol and wasn’t overly concerned. Still in pain I returned 4 weeks later and was tested for arthritis. The blood results returned a white blood count of 190+ and a diagnosis of CML.

What has happened since? (An outline chronology of events is fine)

After diagnosis I had a 3 day wait before seeing my consultant at Worcester hospital. My GP didn’t know anything about CML so was unable to advise what my future held; if I was going to live or die. I felt numb and then, ridiculously, proceeded to scare myself senseless on the Internet for 3 days looking at out-of-date, incorrect information. I walked in to the hospital expecting an immediate bone-marrow-transplant and a slim chance of survival and walked out with hope. My consultant spent a long time with my partner and I explaining what had happened and how we were going to treat it. He was marvellous.

I immediately made a conscious decision to be very open about my situation. Telling family was tough, telling friends, oddly, was worse. I was open with everyone about my diagnosis and encouraged people to ask questions – it seemed to help. My work was very supportive as was my partner but it felt like we were really all along for the ride. I was totally in the hands of the healthcare professionals.

To this end it appeared all I could do was cooperate, live more healthily, do what I was told and stay positive. So I got on with my life. Kelly and I got married just 7 months after diagnoses, we had been together for 12 years and the whole situation made me grow up a little. We discovered Italy after being priced out of our American holidays because the travel insurance was so expensive. We worked hard and we played hard.

In the first 3 years my body didn’t ever really take to the first line of treatment which was Glivec (Imatinib). Almost immediately I was put up to 600mg per day from the standard 400mg. Some of the side effects weren’t nice: constantly upset stomach, bone pains and tiredness. However if this drug was going to keep me alive I was going to keep at it. My consultant was brilliant, always patient, always willing to try something different or new.

Perhaps the worst part were the fairly regular bone marrow biopsies. I tend to call them a necessary evil. Marrow and bone is extracted using a long needle inserted at the top of the buttock. The flesh could be numbed using anaesthetic, the bone couldn’t. I found it extremely painful but adrenalin, good care and a 3 day recovery got me back on my feet. In the first 3 years I probably had around 12 of these. The results of these gave my consultants a birds-eye view how well I was doing on the drugs.

I didn’t spend a single night in hospital and never really considered myself sick, I was too busy getting on with things. We managed to reduce the % of Philadelphia Chromosome right down to 4% at one point but it was hard to stabilise and sometimes crept up. My consultants were determined that considering my young age, dashing good looks and general good health I really should be having a better reaction.

Under the guidance of the magnificent Professor (Charlie) Craddock at the Queen Elizabeth Hospital in Birmingham I was taken off Glivec and put on Sprycel (Dasatinib). The was a newer drug with excellent results but Glivec was my safely net and I felt very nervous. There was a chance these new drugs may not work and I’d potentially I’d be looking at a transplant.

It was just before this happened that Kelly and I decided to have a baby. My consultant had sent me off to the sperm bank 3 years previously as they were unsure what affect the Glivec would have on my sperm. We went through ICSI treatment at the Women’s Hospital at the Queen Elizabeth in Birmingham and Kelly found out she was pregnant around the same time I was switching tablets.

It was quite an uncertain time and although very recently all feels a bit of a blur to me. After 3 months of being on the Dasatinib I had a bone marrow biopsy and just a few days after returning from a short holiday to Italy I received a phone call from my Worcester consultant Mark. He was very pleased with my progress and the results showed I had achieved major molecular remission, just one step away from the best result possible which is complete molecular remission. Needless to say I am hoping I’ll hit this target after the next biopsy.

To all intents and purposes I have very little to worry about. The likelihood is that Leukaemia will not kill me. The unknown has never been so welcome to top it all off baby Luca Arthur Francesco Griffin arrived in October 2011

How have you managed to cope with CML?

Quite frankly you aren’t left with a huge choice. I was determined it wouldn’t scar me psychologically or let it define me. That’s why I told people so early. I believe the only thing you can do is look for the positives and let your survival instincts kick in. Believe it or not there are many positives.

The support and advice I received at Worcester, Kidderminster and Birmingham hospitals was amazing and still is. I was exposed to a world of care filled with many wonderful people. I stopped searching the Internet for stories about Leukaemia and got my work/life balance just right. I tried being the best person I could possibly be. The CML became secondary, I let the medical professionals worry about my treatment. I’m a fit strong 36-year-old guy with a lovely wife and 2 cats. I’m learning Italian and enjoy writing film scripts. I’ve discovered that I’m strong enough to deal with CML so it isn’t important anymore. In my mind this reduces the effectiveness of the condition.

There are many people worse off than me. People diagnosed with cancer and other horrific diseases every day. On a grand scale I am lucky. I’m still here and I tell myself that every day.

I honestly believe I am a better person because of my experience, it has made me more mature, more considered, patient and understanding towards the needs of others.

What has been the impact of CML on your life?

Before diagnosis I knew very little about Leukaemia. To me it seemed to be the worst form of cancer. I was aware that Ian Botham walked to raise money for it and Geoff Thomas had it but was OK now. It made me understand mortality, at 32, very sobering.

I’m not the impact on my life is that important, as I said before I’m along for the ride. I think it was tough for my family and friends, I know that they felt pretty helpless about what I was going through but they did all they can to support me.

I tried to avoid the highs and the lows. I didn’t sob or get depressed upon diagnosis and I didn’t celebrate remission. I took, and take, everything in my stride. I’ve tried not to let myself get caught up in emotion.

The impact on my life: I got married, I’m having a son, I discovered a new country that I love (and a football team in AS Roma) and I’ve learnt valuable life lessons. It hasn’t all been a bed of roses, of course, but I believe in hope and positivity and that’s what I’ll take from this experience.

What do you hope for the future of CML research and awareness, and what needs to change?

Doing charity work is important for those of us that can. Society should be defined by how we look after those in need. I’m in a position where I am happy to appear on TV, radio or in print and tell people to support me in my charity efforts because I have Leukaemia. It’s the least they can do. I am happy to push any emotional button I can to ensure the fundraising and awareness continues.

The anti-cancer drugs that I take are revolutionising treatment for CML. In 2001 Glivec made the cover of Time magazine as the “magic bullet” to cure cancer. I believe that this revolution will continue on to treat other forms of cancers. Haven’t we been talking about a “cure for cancer” for decades, well here it is!

What needs to change is the bureaucratic process of healthcare, government departments that are incapable of making decisions and clueless national institutes that profess to have the best interest of health at heart but in reality are simply Government puppets designed to make unpopular decisions.

Assuming we are this close to the cure shouldn’t we be saying to people like Professor Craddock in Birmingham and his medical colleagues; what do you need? How much do you need? There should not be a price on life, these decisions should not come down to budgets and spreadsheets. These are the people who will improve our lives, be remembered for truly great things. They look after our health and we must do all we can to support them. Seeing them struggle for budget and campaign for the implementation of procedure that will save lives is plain and simply wrong and this needs to change.

We owe Doctors, Nurses and Scientists everything for dedicating their lives to health-care and for looking after us, if that isn’t inspiring I don’t know what is.

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Quote from comedian Bill Hicks: “The world is like a ride in an amusement park, and when you choose to go on it you think it’s real because that’s how powerful our minds are. The ride goes up and down, around and around, it has thrills and chills, and it’s very brightly coloured, and it’s very loud, and it’s fun for a while. Many people have been on the ride a long time, and they begin to wonder, “Hey, is this real, or is this just a ride?” And other people have remembered, and they come back to us and say, “Hey, don’t worry; don’t be afraid, ever, because this is just a ride.” And we can change it any time we want. It’s only a choice. No effort, no work, no job, no savings of money. Just a simple choice, right now, between fear and love.”

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