Geoff Thomas and Cure Leukaemia Launch Biggest Fundraiser

Ultimately, it’s about curing cancer and if that doesn’t grab your attention then nothing will.

Last night was the launch of the biggest fundraiser in the history of Cure Leukaemia, the Birmingham based charity founded by Professor Charlie Craddock and Graham Hampson Silk.

Deloitte in Brindley Place hosted the event where former England footballer Geoff Thomas told the audience he will hold two major cycling events in 2015 to support the work of Cure Leukaemia and Professor Charlie Craddock in Birmingham. This comes ten years after going into remission from leukaemia himself.

In 2003 Geoff was diagnosed with chronic myeloid leukaemia (CML) and was given less than three months to live. Following treatment from Cure Leukaemia co-founder Professor Charlie Craddock, including a bone marrow transplant from his sister, Geoff has been in remission since January 2005. Geoff now aims to raise £2million in two years by holding two unique cycling events for an exlsuive number of participants.

Firstly, in June 2015 Geoff will lead a closed group of 300 cyclists on a four-day, 500 kilometre cycling challenge: ‘London 2 Paris: Inspiring the Revolution’. The event is built for both keen cyclists and beginners looking for a new challenge – every aspect of the ride is planned with precision and will be a professional event for amateur riders. It might sound like an event only fit for cycling’s elite, but with four different speed groups, this is something anyone can achieve. It also boasts itself as one of the ONLY events that offers rolling road closures throughout France.

Six months after Geoff’s treatment finished in 2005 and inspired by cancer survivor and pro-cyclist Lance Armstrong, Geoff set himself the challenge of cycling the Tour de France 2005 route two days ahead of the race. Geoff succeeded in his 2005 challenge and his second major cycling event will revisit the challenge of cycling all twenty-one stages of the Tour de France; this time, just one day ahead of Le Tour 2015. Along with a closed group of only twenty participants, this will be a once in a lifetime opportunity to join Geoff in completing one of the toughest physical challenges around.

The event was a huge success with many signing up on the evening, Geoff was more energised than I’ve seen him for a long time and Charlie, with ususal humility, had a steely resolve that suggested these extra funds for the charity could be a real game-changer. We’ve already seen the Centre for Clinical Haematology at the QE Hospital in Birmingham become one of the leading centre in the world for the development of new drug and transplant treatments for patients with blood cancers. These new approaches to clinical care are providing a new economic force for the city – in life sciences. The focus on ‘cure’ from everyone at the charity is to be commended and the leadership from CEO, James McLaughlin has been outstanding.

Please visit the links and consider signing up and supporting these events.

www.l2prevolution.com
www.beforethetour.com
www.cureleukaemia.co.uk

Anthony Nolan

It’s a little off-topic today but vitally important that I share something with you. As a CML patient you hope that the disease is kept under control through the wonderful new drugs constantly in development. However things don’t always go as well as planned and the conversation can soon turn to talk of a bone marrow, or stem-cell, transplant. Thankfully my drugs are working but my consultant took the belt-and-braces approaches of ensuring I had a “match”, especially as I have no siblings. But how does this process work, and where do these “matches” come from?

I’ve been able to visit the Anthony Nolan charity today. Primarily to talk about their 16+ donor programme but also to find out a little more about who they are and what they do.

“Anthony Nolan is a pioneering charity that saves the lives of people with blood cancer who need a blood stem cell, or bone marrow transplant. In 1974, Anthony Nolan’s mother, Shirley, set up the world’s first bone marrow register to match donors with people who desperately needed a transplant. Now, every day, we help two people in need of a lifesaving transplant by using our register to find remarkable donors who have matching stem cells, or bone marrow. We are a UK charity with international reach. We carry out world class research into stem cell matching and transplants to improve outcomes for all patients. For many people with blood cancer, a stem cell or bone marrow transplant is their last chance of life. For the transplant to be a success they need to find the right match. As the UK’s most successful stem cell register, we help them find that match.”

Anthony Nolan are very keen to connect with schools and academies who offer sixth form provision. Students aged 16, 17 and 18 need to be aware what fantastic work they do and that it is as important to find out about donating stem cells as it is to carry a donor card.

The Register & Be a Lifesaver (R&B) programme provides all the resources needed and although this is a relatively new initiative ten of thousands of students have already found out more. Volunteers go into 6th forms, colleges and clubs where they talk to young people about how they could one day save a life. Register & Be a Lifesaver.

How to be an Anthony Nolan bone marrow donor:

From what I’ve learnt today Anthony Nolan will dispel myths, council, support and enable students to make that positive decision to go on the donor register. The decision of someone today will last a lifetime and potentially save lives. If you are a student, teacher or work in education I urge you to contact the charity directly, or through me, and invite them in to present to your sixth form. Thank you. Kris

www.facebook.com/AnthonyNolan
www.twitter.com/AnthonyNolan
http://www.anthonynolan.org

What is my PCR?

I thought I would draw your attention to this excellent campaign to increase awareness of the need to monitor CML treatment and the right of every patient to know their test results. The campaign is a patient driven global awareness effort, carried out in partnership with a coalition of CML-focused organisations, with the goal of optimisation of clinical outcomes for people living with CML.

www.whatismypcr.org

PCR stands for “polymerase chain reaction”. It is a diagnostic and monitoring tool used in CML to measure the response to treatment. It is not only used in CML; PCR is also used in other conditions and is generally one of or the most sensitive ways to “detect” something; be it BCR-ABL in a person with CML, anthrax on a mailed letter, evidence of a specific virus in a person after bone marrow transplant, etc.

Every time the PCR is run the value is important, and conveniently can be compared to prior values. It often is the only test which gives someone an idea about the depth and stability of their response of treatment. A person with CML should always know their PCR level! PCR results should be explained to patients in as much depth as they can understand so they have a good sense about the response level, how this compares to where they should be, when the next test is due, and if any concern or risk has developed.

The website provides information about PCR, resources for patients, a way for organisations to partner in the campaign, and information about how to request a free “What is MY PCR?” badge.

The goals of the “What is MY PCR?” initiative are:

1. To increase patient awareness of the importance to monitor the level of residual disease.
2. To increase patient understanding of the milestones in CML treatment.
3. To increase patients’ involvement in their treatment.
4. To increase local community awareness of the needs of CML patients.

So order your badge and wear it on September 22, 2012 in honor of International CML Day and beyond!

Kris

Sample images of the What Is My PCR buttons.

Fiona Wild’s story

Fiona was very kind to share her CML story with us. She has been playing an active part in the campaign for access to drugs.

My DOG was actually responsible for the discovery that I had CML back in 2006. He walked up my front, as is his wont, and I felt an extraordinary sensation of rushing fluid and then forgot about it. A few hours later, I noticed a huge hard lump which turned out to be a bruise. I finally agreed, after months of infections, other funny bruises, stomach aches, swollen ankles, weight loss and exhaustion, to visit my GP and have a blood test. The diagnosis came the same day and my GP kept apologising for what she had to tell me. It was a double shock because my father had only died of Myeloma 4 years before. Basically she and I were expecting that I’d have to have a bone-marrow transplant and a haematologist’s appointment was duly arranged for a fortnight’s time. My husband and I had a holiday booked so as I thought it would be my last,I was determined to have it and put off seeing a consultant for a further week. We researched treatments on the net and discovered “Glivec” which is a “wonder-drug” if you happen to have the Philadelphia  chromosome and are not intolerant or resistant to it. I have been incredibly lucky as I not only achieved a major molecular response in about 2 years, but suffer no side-effects and am still on it.

I am deeply grateful to Prof. Druker for discovering the stuff, to the Haematology team at Cheltenham General Hospital and to my miniature poodle, funnily enough called Lukie(!) for the fact that I’m still here. But I’m only too aware that others are not so fortunate, develop resistance to CML drugs, and then need the next one along the line. It is totally wrong for NICE to deny these people Dasatinib as a first,second or third line of treatment on the NHS. They say it is available via regional cancer funds but some of these are more accessible than others, which leads to a post-code lottery as to who should have the treatment. It also means that consultants have to spend a lot of valuable time fighting for their patients to be able to have a drug which can give them a normal life and a normal lifespan as well.

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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