Tag Archives: leukaemia

Easingwold Leukaemia Survivor Urges Yorkshire Residents To Join Walk To Beat Blood Cancer

NEW PRESS RELEASE.

Easingwold leukaemia survivor Harvey Greenwood is urging people from across Yorkshire to step up for a five-kilometre sponsored walk through York to raise money for Leukaemia & Lymphoma Research.

The 39-year-old, who has walked hundreds of miles to support groundbreaking research into blood cancers, is inviting people of all ages to join him for the York Forget Me Not Walk on Sunday 3 October and help the charity find better treatments and cures for leukaemia, lymphoma and myeloma.

Harvey was diagnosed with chronic myeloid leukaemia (CML) in March 2001, a moment he describes as “the most frightening time of my life”. Fortunately, Harvey responded well to Imatinib, a drug developed through research, and is now able to manage the disease by taking daily medication.

Determined to ensure that other patients continue to have access to the best possible treatments, Harvey joined cricket legend Sir Ian Botham on his 25th Anniversary walk to beat childhood leukaemia earlier this year, and completed a gruelling 270-mile trek along the Pennine Way in June, raising a combined total of £7,500 for Leukaemia & Lymphoma Research.

Now Harvey is stepping out for the York Forget Me Not Walk on Sunday 3 October with his wife Fiona and daughters, and asking other families to join them in walking to beat blood cancers.

Harvey says: ”Every mile I’ve walked for Leukaemia & Lymphoma Research has been about giving something back and making sure other patients benefit from the chances I’ve had. It’s vital that everyone diagnosed with one of these diseases has access to the best possible treatments.

Sign up and join us for the York Forget Me Not Walk. Everyone is welcome; it’s not competitive, so you can take in the historic sites at your own pace, and help make a difference to the lives of patients and families touched by blood cancers.”

On the day, walkers will set out from the York Castle Museum at 10am at a leisurely pace. The five-kilometre route will take participants through the centre of the historic city passing the iconic Gothic Minster before returning to the museum, where walkers can collect a well-earned medal.

Those wishing to join in should contact James Wright on 020 7269 9006 or visit www.forgetmenotwalks.com. The entry fee is £7.50 for adults, £5 for children aged 12 or under, and just £20 for a family of 2 adults and 2 children. The fee includes a t-shirt and medal.

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Filed under chronic myeloid leukaemia, forget me not walk, fundraising, gleevec, glivec, imatinib, leukaemia, leukaemia & lymphoma research, leukaemia research, pennine way, sir ian botham

On BBC Radio York with Jonathan Cowap Today!

Catch up on my interview on Jonathan Cowap’s morning show at BBC Radio York today.

Starts 1 hour 6 minutes in to programme.

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One Week To Go For The Pennine Way Challenge!

The start of my Pennine Way challenge is fast approaching and with a hectic last few weeks of organisation and training walks things seem to be on track!

I am absolutely delighted to have Paul Courtney on board for the whole 265 mile walk.

Paul contacted me a few months ago after finding my group on Facebook when researching walking the Pennine Way for himself – like me a goal he has had for a few years!

Paul has been fantastic in supporting with training walks, kit lists and organisation and has been kind enough to join my fundraising activities for Leukaemia & Lymphoma Research for the challenge culminating in a piece in his local newspaper this week.

I am sure Paul will add his thoughts to the blog as we go – not least on how he is managing to put up with me day in, day out!

Paul Hinckley Times

Paul, Hinkley Times

My uncle, Ian, has also been instrumental with advice on plans, kit and fundraising activity. It is great to have family involved in the project.

The training walks for Paul and I have included full pack weight adventures around the areas we live and also enabled us to hook up for a look at the beginning of the Pennine Way from Edale a couple of weeks ago.

Harvey & Paul on Kinder Scout

Harvey & Paul on Kinder Scout

We conquered the original start route of the Pennine Way across the peat bogs of Kinder Scout, great practice of navigation skills for us both, so after we have done the first day next week we can proudly say we have done both Pennine Way starts after returning to Edale ‘southbound’ on our day of training!

Jacobs Ladder Pennine Way Southbound

Jacobs Ladder Pennine Way Southbound

Other practice days have taken me on part of the Pennine Way route from Hardraw up Great Shunner Fell with Ian and his friend Paul.

The main surprise from both these sections of the route was how dry the ground is. After the winter of snow I was expecting the ground to have held more water.

Hopefully a continued dry spell will keep the conditions underfoot in a dry state for us over the next four weeks – although for walking weather we are hoping for dry, but cloudy weather to avoid the heat whilst hiking!

Last night I was back in the BBC Radio York studios for a pre-record on my story with Jonathan Cowap for his weekday morning show which is due to be aired some time next week (watch this space!)

As well as the monetary fundraising it is also very important to me to raise the profile and awareness of Leukaemia & Lymphoma Research so any opportunity to share my experience and thoughts are always welcome.

A follow up to the Sir Ian walk in the local newspapers has helped raise the profile locally and with more activities in the community planned my conversations tend to be greeted with ‘How are plans going for your walk?’ which can only be a good thing for the charity.

So, we are down to final plans this week and looking forward to some dry weather!

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New Press Release – Easingwold Leukaemia Patient Going The Extra Mile To Beat Blood Cancer

An Easingwald leukaemia patient, who joined Sir Ian Botham on the cricket legend’s walk for Leukaemia & Lymphoma Research earlier this month, is preparing to take his fundraising for the blood cancer charity a step further.

Harvey Greenwood, 39, has challenged himself to walking The Pennine Way, to ensure that blood cancer patients continue to have access to the best possible treatments.

“It was great to meet Sir Ian and spend some time with him, he’s an inspiration”, says Harvey, who was diagnosed with chronic myeloid leukaemia (CML) in March 2001 and is able to manage the disease by taking daily medication.

“Without the research I may not be here today, so walking with Beefy and taking on The Pennine Way seemed like perfect opportunities to give something back”.

Setting out on 30 May, Harvey is aiming to complete his exhausting journey in less than three weeks by walking an average of 15 miles a day.

Undaunted by the gruelling 270-mile trek, which will take him from Edale in Derbyshire to Kirk Yetholm in Scotland, the-father-of-two is determined to help Leukaemia & Lymphoma Research get closer to a cure.

Thanks to the support of friends and family, he has already raised a fantastic total of £2,000 to help the charity fund further groundbreaking research into leukaemia.

“Being told I had leukaemia was the most frightening time of my life”, says Harvey. “The doctors were amazed that I had walked through the door at all. I’ve been very lucky and I’m proof that the research works, but there’s still more to be done. I want everyone touched by leukaemia to have the chances I’ve had”.

Kate White, Director of Fundraising at Leukaemia & Lymphoma Research says: “It’s fantastic that Harvey is doing so much to support Leukaemia & Lymphoma Research and we wish him the best of luck with his walk – it sounds like the challenge of a lifetime!

All the money raised will help Leukaemia & Lymphoma Research invest in vital research into new treatments and cures for leukaemia, lymphoma and myeloma.

Leukaemia & Lymphoma Research was previously known as Leukaemia Research. The charity, which celebrates its 50th anniversary in 2010, has changed its name to raise awareness of its longstanding commitment to research into all the blood cancers, including lymphoma and myeloma – not just leukaemia.

You can support Harvey by visiting www.justgiving.com/harveygreenwood

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Filed under chronic myeloid leukaemia, fundraising, gleevec, glivec, imatinib, leukaemia, leukaemia & lymphoma research, leukaemia research, pennine way, sir ian botham

NICE deny Leukaemia Patients Life Saving Cancer Drugs

NICE (National Institute for Health and Clinical Excellence) have recently returned their provisional results on Nilotinib and Dasatinib as alternative therapy for Imatinib (Glivec / Gleevec) intolerant patients. Basically they are denying these patients a chance of life on what I can see as purely a cost issue.

The CML Support Group has set up an Online Petition against this which I implore you to sign.

A representative of the CML Support Group said ‘Patients are angry, frightened and very frustrated by the provisional recommendation by the NICE appraisal committee- a recommendation that seems to us to have much more to do with cost cutting than with a rational appraisal of two highly effective and innovative therapies.

If the recommendation is upheld, and NHS funding of these therapies is refused in cases of imatinib intolerance, it will undoubtedly cost lives. It is a shocking prospect that UK citizens, who prove to be intolerant to standard dose imatinib (Glivec) will be denied access to such effective and life-saving alternatives. Clinicians will find themselves unable to offer these therapies to their patients in the knowledge that expert clinicians in Germany, France, the Netherlands and other EU countries, will continue to treat CML patients with these life-saving therapies. NICE have clearly acknowledged that both nilotinib (Tasigna) and dasatinib (Sprycel) are clinically effective and very well tolerated oral therapies.

It is difficult to understand why NICE have singled out imatinib (Glivec) intolerant patients in chronic or accelerated phase CML (but not blast phase) for a provisional recommendation that they alone should be denied access to these life-saving therapies. As a consequence, this group of patients, who currently represent around 30-40 British citizens of all ages, will suffer an appalling injustice that puts them at great risk of dying from acute (blast) phase CML.

We call upon the Secretary of State for Health to ensure all CML patients intolerant of Glivec (imatinib) have equality of access to these life-saving drugs.

This reminds me of the issues I had back in 2001 when trying to get Glivec. You can read the outcome on My Leukaemia Story.

It is difficult to put into words how this makes you feel as a patient. Jed’s story on the video below sum’s up the issues and feelings and I strongly recommend watching the short clip.

This also has potential significance for me personally. If I was to become intolerant to Glivec then I would effectively be denied the opportunity to try what is showing to be a successful alternative. For me it is my Plan B.

I (and all other CML patients) would appreciate if you could show your support by signing the petition:

Sign The Online Petition By Clicking This Link!

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Filed under chronic myeloid leukaemia, gleevec, glivec, imatinib, leukaemia, NICE

Walking with Sir Ian Botham

The PR team have been in full swing with an article in the York Press on Thursday 18th February, page 16, titled ‘Striding Out With Beefy’.

As part of my fundraising I will be walking with Sir Ian in Manchester prior to my Pennine Way Challenge.

The full press release below:

‘A leukaemia survivor is preparing to join one of his childhood heroes, Sir Ian Botham, in Manchester on 10 April for the first leg of the cricketing legend’s walk for leading blood cancer charity Leukaemia & Lymphoma Research.

Harvey Greenwood, 39, was diagnosed with chronic myeloid leukaemia (CML) in March 2001. He will rendezvous with the former England all-rounder at Heaton Park for the final four miles of the day’s walk. Beefy’s walk will begin outside the Marks & Spencer’s store on Market Street and Sir Ian will then walk through the city before arriving at Heaton Park where people can join him in exchange for fundraising.

After visiting an optician nine years ago to investigate a problem with his vision, Harvey was advised to go to Southampton General Hospital for blood tests, which revealed he had had leukaemia for sometime: “It was the most frightening time of my life”, says Harvey, “the doctors were amazed that I had walked through the door at all – I was very lucky that the leukaemia hadn’t reached a more advanced stage”.

Although the next few months were a very stressful time for Harvey and his wife Fiona, thanks to the development of new drug treatments, he has been able to manage the disease by taking daily medication.

Recognising that he has been very fortunate, cricket fan Harvey is determined to help Leukaemia & Lymphoma Research get closer to a cure for all blood cancers: “After what I’ve been through beating blood cancers is very personal to me. I can’t wait to meet Beefy and get walking.”

Beefy will be walking through ten towns in ten days from 10-19 April. Setting out each day from a branch of event sponsor Marks & Spencer’s in the town centre, he will complete an approximate 10-mile route around the town, before making his way to a local park meet members of the public where they will join him for a sponsored walk.

Sir Ian says: “I never forget why I put myself through the pain and the blisters; I know it will mean in the future that every child and teenager diagnosed with leukaemia will survive. I won’t stop until we beat childhood leukaemia, but I need your help. Together we can make sure every child survives. Lets make this my best walk yet!”

If you would like to join Sir Ian on one of his walks please visit www.beefy25.com, email beefy25@lrf.org.uk or call Botham Walk Fundraising Coordinator David Blandford on 020 7685 5143. Or if you are unable to walk you can sponsor me at http://original.justgiving.com/harveygreenwood

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Filed under chronic myeloid leukaemia, fundraising, leukaemia, leukaemia & lymphoma research, leukaemia research, pennine way, sir ian botham

CML – NICE – epetition response – Dasatinib (DS) & Nilotinib (NL)

Just a quick post to show the reply to 10 Downing Street’s latest reply to the Dasatinib and Nilotinib petiton and challenge to acceptance as 2nd line therapy for resistant / intolerant Imatinib (aka Glivec, Gleevec).

I am not going to comment directly here at this stage, as in my opinion there are huge flaws in the study for the judgement, however we await the full reply and go from there.

Direct quote from 10 Downing Street:

We received a petition asking:

“We the undersigned petition the Prime Minister to overturn the decision by NICE to refuse 2nd generation life saving drugs to CML patients.”

Details of Petition:

“Chronic myeloid leukaemia is a form of blood cancer. The current treatment is Imatinib (IM).

Approx. 40% of individuals may display resistance to IM. Dasatinib (DS) & Nilotinib (NL) are licensed for the treatment of adults with chronic & accelerated phase CML with resistance or intolerance to IM.

DS is also effective for Blast Crisis CML. Both received approval by the FDA & EMEA.

NICE do not accept the evidence supplied in the initial report, as they consider open label, non blinded trial designs seriously flawed.

Cost of supply is the issue. We are urging NICE to reassess their decision NOT TO fund the use of these EFFECTIVE treatments on the basis of cost – without the need for 4 arm (DS, NL, high dose IM) double blind randomised studies including a control group receiving ‘best supportive care’ – allowing none of them to crossover and no dose escalations according to how they respond.

The NICE assumed average age for CML is 60. Would you accept such a trial would be morally/ethically correct if it was aimed at young children with CML? What if your National Insurance scheme now doesn’t treat you with the best drugs because the cost is considered too high?.”

Read the Government’s response

In response to the concerns that many people have about the availability of dasatinib and nilotinib for the treatment of chronic myeloid leukaemia, the Department of Health should stress that the National Institute for Health and Clinical Excellence (NICE) has not yet published final guidance on the use of dasatinib and nilotinib.

NICE has recently issued draft guidance that does not recommend the use of dasatinib and nilotinib for the treatment of chronic myeloid leukaemia and registered stakeholders had until 7 December 2009 to submit comments.

NICE’s Appraisal Committee is considering the responses to the consultation and the Institute currently expects to issue its final guidance to the NHS in April 2010.

NICE is an independent body, which makes decisions on the clinical and cost effectiveness of products based on a thorough assessment of the available evidence involving extensive consultation with stakeholders and in the context of a finite NHS budget.

Some of these treatments cost thousands of pounds, so NHS bodies must find a balance between funding expensive drugs for a limited number of patients and providing services and treatments that will benefit many other people.

The Department recognises that the Institute’s decisions have serious implications for patients and their carers. These are very difficult decisions and they are made only after careful consideration.

It would therefore not be appropriate for Ministers or officials to intervene in an ongoing appraisal. However, several patient groups are registered stakeholders in this appraisal and concerned parties may wish to raise concerns about NICE’s guidance with one of these organisations. Details of stakeholder organisations can be found at: http://www.guidance.nice.org.uk/TA/Wave17/18

Where NICE guidance is not yet available for a treatment, the NHS Constitution gives patients a right to expect local funding decisions on the availability of drugs and treatments to be made rationally and on the basis of the available evidence. NHS organisations are also required to have processes in place for the consideration of exceptional cases, even where NICE has not recommended a particular drug or treatment.”

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