Category Archives: imatinib

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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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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Walking with Sir Ian Botham in Manchester on Beefy’s 2010 Forget Me Not Walk

We could not have woken early morning to a better day – glorious sunshine and not a cloud in the sky – for the trip across the Pennines to meet up with Sir Ian Botham on the first day on his 2010 Forget Me Not Walk in Manchester.

The morning weather was befitting of the day to follow.

An easy trip across the M62 (how often can you say that!) left enough time for the family travelling from separate locations to gather for communal breakfast in Manchester city centre before heading to Marks and Spencer to meet with Leukaemia & Lymphoma Research walk organisers for my brief on how the cheque presentation to Sir Ian was going to work.

Outside M&S was a hive of activity with street charity collectors being briefed, walk organisers directing and police patrolling on horseback and motorbikes and the almost surreal sight of a dozen or so Pontin’s bluecoats!

My brief was simple – be in place at the press photocall area 15 minutes before Sir Ian was due to arrive and amongst other fundraisers with sizeable cheques of their own I would be ushered in for a handshake, hello and photoshoot – and to top it off we could do one with family as well!

So with instructions sorted and a few minutes to spare we had a good opportunity for some more relaxed fun family photos and time to chat with other fundraisers.

With a crowd gathering excitement grew as first the Sky news van team arrived shortly followed by Sir Ian’s support van and crew.

Within minutes Sir Ian arrived in amongst a hustle of photographers and TV crews then calmly and openly worked though his on-the-spot interviews and swiftly into the photoshoot.

The Mayor of Manchester and Pontins bluecoats headed up the cast followed by the star young fundraisers and then we were on!

A smiley Sir Ian greeted me, congratulated me on the amount raised so far as I explained my Pennine Way Challenge and turned to be ‘papped’, swiftly joined by Fiona, the girls, Mum and long time friend and marathon running supporter Jayne whom were all walking Beefy’s Manchester Heaton Park walk with me.

With photo’s completed Sir Ian then headed to the start line and with a loud countdown from onlookers started his 12 miles for the day and 10 days of walking.

With the ‘pizzaz’ done it was a leisurely return to the cars for the drive to Heaton Park where we would join the rest of the Manchester walkers for the final 4 miles with Sir Ian.

With the sun still beaming (yes – even in Manchester the home of rain!) we were met at Heaton Park by Leukaemia & Lymphoma Research banners, gazebo’s and booming music from the Pontins promo team entertaining the kids.

There was a real summer feel for the first time this year – shorts, t-shirts and picnics were the order of the day whilst watching a junior cricket practice and croquet whilst we awaited Sir Ian’s arrival!

As news of Sir Ian’s imminent arrival came in the 150 or so public walkers gathered to cheer him into the park and swiftly (and for some of us not so swiftly!) follow him on the marked route around the park.

It was a fab walk on an undulating course. I have never been to Heaton Park before and have to say I was impressed. The sheer size helps with the house centrally located with woodland walk areas, acres of green grass to chill out on, a large boating lake and whilst we were there a travelling funfair.

The route meant we had to keep criss-crossing paths which was great as you would see Sir Ian leading the way back up the hill you were heading down or turning a corner in the distance with a trail of walkers behind and creating a white (due to the T-shirts) snake of people trekking around the park.

With the walk completed and fun had by all it was chance again to catch up with Sir Ian (both on foot and in person!) for another chat and to get my copy of his autobiography signed which has been on my bookcase since 1994!

A fantastic day had by all with collectively thousands of pounds raised, which at the end of the day is what it is all about!

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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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Interviewed by Russell Walker on BBC Radio York!

It has been an interesting morning after being inside the inner sanctum of BBC Radio York to be interviewed live on air by Russell Walker.

It is the first time I have been in a radio studio (apart from a 30 second recorded clip interview when I was 10!), it was great to see the set up and meet the team.

The 10 minute interview seemed to go in a flash, Russell was great and made it a relaxed chat about my story and fundraising walks with Sir Ian Botham and my Pennine Way Challenge.

I would also like to thank Anna Wallace who smoothed my transition into the studio which resulted in my dulcet tones being aired which can be heared by following the link below.

To listen you can go to my interview on the BBC iPlayer by clicking:

Harvey’s interview on BBC iPlayer

The interview starts on 43:00 minutes into Russell’s show and lasts for around 10 minutes. You can fast forward by dragging the time bar at the bottom along to the time.

Please be aware this is only on iPlayer for a few days, so if you come back at a later date and it is not there then sorry – it’s not under my control!

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