NICE deny Leukaemia Patients Life Saving Cancer Drugs

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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 Story was sourced via Harvey's Charity Fundraising Blog.Click HERE to visit.

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Drugs more likely to cause Chronic Lymphocytic Leukaemia Transformation.

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On Feb, 27, 2010, top results found to cause Chronic Lymphocytic Leukaemia Transformation:

All people studied have reported adverse effects, which can include Chronic Lymphocytic Leukaemia Transformation. In some cases, eHealthMe may find that Chronic Lymphocytic Leukaemia Transformation can be a long term (1+ years on drugs) effect, and happen more often in patients of certain gender and age.

	Drug or drugs in use	Result	Long term effect?
1	Fludarabine Phosphate,Cyclophosphamide, Mitoxantrone	12.59% of 143 people have Chronic Lymphocytic Leukaemia Transformation	No
2	Methylprednisolone Acetate,Cyclophosphamide, Mitoxantrone,Fludarabine Phosphate	12.24% of 147 people have Chronic Lymphocytic Leukaemia Transformation	No

Twin study sheds light on leukaemia

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Published on Friday Feb 26 15:06:26 GMT 2010

Many national newspapers reported today on the story of Isabella and Olivia, four-year-old identical twins who have “unlocked the secret of leukaemia”. The papers describe how one twin was diagnosed with leukaemia and underwent chemotherapy, whereas the other twin did not develop the disease. Their unique situation of being identical twins who've had the same environment since they were conceived gave researchers an unprecedented opportunity to investigate the causes of leukaemia.

When researchers compared their bone marrow, they found that both girls had pre-leukaematic stem cells (which carry a genetic defect). However, Olivia (the twin who developed leukaemia) also carried a second mutation – a missing gene – that switched pre-leukaemia cells into full-blown leukaemia.

The Times reported that "the discovery will enable doctors to screen young leukaemia patients to establish the severity of their illness and spare some of the harrowing side effects of aggressive chemotherapy”.

The research behind these stories is an investigation of identical twins and a further laboratory study in mice that was inspired by the differences between them.

The causes of acute lymphoblastic leukaemia (the most common childhood form) remain largely unknown. There has been a previous suggestion of some genetic link (with slightly increased risk in children with Down's syndrome, for example), in addition to theories about risks from radiation, drugs or infections. The study gives new insight into the mechanisms involved in the development of leukaemia in children, and opens up a new area for further study. Doctors and researchers will be particularly interested in the findings that pre-leukaemia cells could be used to screen for the disease and that further mutations appear to be needed to switch these on.

Until further research is done, it is unclear what strategies could be followed to prevent conversion to the full-blown disease, or whether this knowledge might have any influence upon the treatment of childhood leukaemia.

Story sourced via the Grantham Journal.Click HERE to visit their website.

Mark appeals to help him find a bone marrow donor.

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Big-hearted people have rallied to help a leukaemia sufferer find a potentially life-saving bone marrow donor.Forty people responded to Mark Sutcliffe's desperate appeal and attended a special session to join the bone marrow register.

Doctors have told the 41-year-old Beeford Primary School headteacher he may not survive without the transplant.

Father-of-two Mr Sutcliffe, of Burton Fleming, near Driffield, was diagnosed with acute myeloid leukaemia in November 2009.

He is recovering from a third course of chemotherapy in Castle Hill Hospital, Cottingham, while his wife Justine stays at home with their young daughters.

Family friend Sue Kirven, of Burton Fleming, organised the session at Wold Newton Primary School in Wold Newton, near Driffield, on Wednesday.

She said: "My children and Mark and Justine's daughters go to the school and I just wanted to do something to help.

"I'm really pleased with the response to the appeal and there are now 40 new names on the donor register.

"Hopefully, a match will be found for Mark and other sufferers who need a life-saving transplant."

The session to collect saliva samples from potential donors was conducted by bone marrow charity The Anthony Nolan Trust, but more tests are needed before it is known if there was a successful match.

Charlotte Connolly, trust donor recruitment manager, said: "We are always short of donors and were delighted with the turnout."

Before the event, Mr Sutcliffe told the Mail: "It could make a real life-saving difference to me or someone else who is waiting.

"This is my only option to stay healthy. If I want to be able to walk my daughters down the aisle when they get married, I need to have a transplant."

Story sourced via the Hull and East Riding Mail. Click HERE to see their website.

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How to prevent your car attracting too much attention....

This is brilliant...i want one of these !

One of my favourite groups A-Ha are to play in Nottingham in November.

I have recently found out that the group A-HA are playing one of their final farewell concerts,aptly titled "Ending on a high note", in Nottingham in November. And I am currently trying desperately to sort out a pair of tickets so that I can take myself and Teresa to it.

The blurb on the Nottingham Trent FM Arena Website says this..."Calling all A-Ha fans, this is your last chance to see the Norwegian trio on our home soil! On Sunday 21st November 2010 A-Ha will be performing live at Trent FM Arena Nottingham to celebrate their ‘Ending on a High Note Farewell Tour 2010’ in the UK.

The group, Morten Harket, Magne Furuholmen and Paul Waaktaar-Savoy, have enjoyed a fantastic international career spanning 25 years, having 15 top 10 singles in the UK alone and selling over 35 million albums.

The ‘Ending on a High Note Farewell Tour 2010’ will mark the anniversary year of the release of the debut album ‘Hunting High and Low’ and the success of their critically acclaimed current album ‘Foot of The Mountain’.

The band have thanked all their fans for the amazing journey: “We’ve literally lived the ultimate boy’s adventure tale, through a longer, more rewarding career than anyone could hope for. Doing this now will give us a chance to get more involved in other meaningful aspects of life, be it humanitarian work, politics, or whatever else – and of course through new constellations in the field of art and music. We are retiring as a band, not as individuals. Change is always difficult and it is easy to get set in one’s ways. Now it is time to move on.”

Casting my mind back to early 1985 I can remember the first time I heard the A-HA song "take on me".I had only known my girlfriend (now wife!) Teresa for a few short months, and so, when we found ourselves in the *record section of Woolworths I decided to buy her the *single, the first gift that I gave to her.

Throughout the many years that we have now know each other we have heard this song played on the radio hundreds of times and it always takes us back to that day in Woolies, which might not sound terribly romantic, but in our lives it was very special moment. Can it really be 25 years since that event......i must buy her something else :-)

Take on Me. A-HA

*Kids notes

Record = A round plastic disc with a hole in the middle that stored MP3's

Single = A small round plastic disc which contained only one track on each side!

Enjoy!

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Sherwood Forest experience...in Texas!

Having grown up not far from Sherwood forest,made famous by that man in tights Robin Hood, I was intrigued to hear on BBC Radio Nottingham this morning that a new visitor attraction is being opened in a few days called "The Sherwood Forest Faire". Exited by the prospect of visiting this new development I listened intently as the owner of the park, Eric Todd, explained all about it, and it was at this point I realised that this new and interesting park was not anywhere near the current Sherwood Forest visitors centre, but was in fact opening in Texas,USA!.

How disappointed I was to find that something that I for one felt was long overdue at the forest, was in fact not going to be within 3000 miles of it, but hey, at least someone has had the foresight and vision to give others an insight into medieval England and the exploits of Good old Robin Hood.

Apparently the dateline for the park is set in 1189, the year that the oldest pub "Ye olde trip to Jerusalem" (Formally known as "The Pilgrim") was established, and the buildings (including a relica of the pub!) and scenery all combine to take people back to that era. If only it was in the UK, if only it was in Sherwood, I would make time to take my 3 kids to see it you can count on that, as it is, perhaps one day they might take me to see the one in Texas.....you never know :-)

Well done to Eric though for realising his dream and spreading the word of Sherwood forest and the legend of Robin Hood to the good folk of the "Lone Star" State :-). Good luck with your venture :-)

To Visit the Sherwood Forest Faire Website Click HERE.

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Wirral woman loses battle with leukaemia after launching appeal for bone marrow donors

A WOMAN from Wallasey who launched an appeal to find a bone marrow donor after being diagnosed with leukaemia has died.

Jenny Wilkinson, 44, worked in Wirral council's finance department and was diagnosed in May last year.

She had been receiving treatment and in January appealed to the Chinese community to help find a suitable match for a bone marrow transplant.

Unfortunately, shortly after launching her appeal, she developed complications that led to pneumonia and passed away in the early hours of February 16, leaving her devoted husband Rob.

Because Jenny's parents were Chinese, she had been told that her best chance of a finding a match was with from someone with similar Chinese parentage.

But she was shocked to find that her odds of finding a donor were seriously affected by a shortage of donors from the Chinese community.

Her appeal attracted attention from the media and from local multi-cultural organisations and community leaders, who helped Jenny spread her appeal for a bone marrow donor to the local Chinese community, and abroad.

Jenny’s husband Rob said: "We were both tremendously grateful and touched by all the offers of help, and would like to thank everyone for their good wishes, and their help in circulating and publicising the appeal.

"It is so sad that for us, the outcome wasn't a good one, but Jenny would have wanted the appeal to continue in her name.

"I would urge anyone who is interested in saving a life to contact the Anthony Nolan Trust for more information.

"Bone marrow donation is simple and in most cases, painless.

In Jenny's words: "Please could you forward this appeal to anyone you know that would be interested in helping."

Story via the Wirral Globe. http://www.wirralglobe.co.uk

Consider your appeal forwarded Jenny. Your request will be heard.

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The Designs for the 2010 Project are now in.....but which one will we use?

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I dropped in to the West Notts college today to see Tom and Pick up the CD which contains the final entries into our hunt for a new look for Scarlett's livery.

All of the designs are excellent and it will be hard to decide which one will be the one to be applied to the car for the 2010 season.

These are the ones that I have to choose from.

There are a couple more designs also, but I need to get these converted into a format that blogger can upload before I can show them!.

You may also notice that the designs carry the logo's of Macmillan Cancer Support and the Lincs and Notts Air Ambulance, these will not be on the final design as we are concentrating on purely Leukaemia Lymphoma Research Charity this year...maybe another year :-)

Now. Does anyone have any suggestions as to a likely sponsor to help us fund the cost of 8 alloy wheels and tyres to compliment the new look ? Let me know if you can help :-). Andy

Leukaemia Explained.

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A short video which explains what Leukaemia is:

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AN IRISH DANCE FOR LIFE SUPPORTING THE ANTHONY NOLAN TRUST IN MEMORY OF JOEL PICKER-SPENCE

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Fancy good night out enjoying traditional Irish dancing and at the same time donating to the Anthony Nolan Trust ?

If you live anywhere near Newark Upon Trent and would like to attend this event make a date for the 27th February.

Saturday 27th February 2010 19:30 till late

Holy Trinity Community & Partnership Centre Boundary Road Newark

THE GLENDARRAGH ACADEMY OF IRISH DANCING PRESENTS: AN IRISH DANCE FOR LIFE SUPPORTING THE ANTHONY NOLAN TRUST IN MEMORY OF JOEL PICKER-SPENCE

Admission by ticket only. Adult £10 Child £5 50% of all proceeds will be donated to the Anthony Nolan Trust

Come on why not come along just for the Craic ! :-)

To find out more about the Glendarragh Academy of Irish Dance click HERE

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When all hope appears lost,sometimes something amazing happens.....

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OK, who expected that outcome ? Keep the faith people :-)

Liverpool dad who suffers with leukaemia told he can’t have drug which could save his life

A DAD with leukaemia has been told he can’t have the drug he needs to save his life.Alan Rice, 69, of Mossley Hill, is battling to stay alive after Liverpool PCT said they wouldn’t pay for his drug.

The dad-of-two is the latest victim of an NHS postcode lottery which means some health authorities will pay for treatment while others won’t.

Alan, of Mentmore Road, has battled chronic leukaemia for over 10 years and after five years of chemotherapy was told by his consultant at the Royal that the treatment wasn’t working.

Instead, Prof Andrew Pettitt recommended Lenalidomide, a drug which has been shown to extend patients’ lives by over three years in clinical trials.

Without an appropriate treatment, Alan, who suffers chronic leukaemia with weakened bones, may only survive another year.

Alan said: “The letter from the PCT is my death warrant. Without the drug, I won’t be able to carry on trying to fight the condition and I have no idea how long I will live.

NICE, the National Institute for Clinical Excellence, has only approved the drug for use in multiple myeloma, a rare and incurable type of bone marrow cancer.

To read more about Alan's story please click HERE to view the Liverpool Daily Post Website.

This is yet another case of the so called "Postcode Lottery" that many people will face, as if living with the cancer was not enough!. Good luck to you Alan, hope this situation is resolved...and soon!.

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RAF Marathon man Paul hopes to raise £4000 for Leukaemia Charity

AN Local RAF serviceman from RAF Cranwell is hoping to raise £4000 for charity by running in the London Marathon this year.

Flt Lt Paul Harrap aims to raise the cash to help children affected by the UK's most common form of childhood cancer, leukaemia.

He has spent months preparing for the big day and hopes he can make a difference by completing the gruelling 26.2 miles on April 25. Flt Lt Harrap, 36, is running about 60 miles a week to help build himself up for the marathon.

Paul is also hosting an online auction to raise cash for his cause.

The auction will finish at 12pm on March 15. To make a bid or for more information, e-mailWAD-FHQ-SO3A1@mod.uk call (01522) 726533 or visithttps://www.bmycharity.com/V2/paulharrap

Rituxan gains approval for most common leukaemia

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Roche’s blockbuster cancer treatment MabThera/Rituxan has been approved by the FDA for the treatment of adult leukaemia.

The drug earned Roche $5.6 billion in revenues last year, based on its numerous licensed indications including Non-Hodgkin’s lymphoma.

Now the drug is set to extend its reach further, and could offer patients with chronic lymphocytic leukaemia (CLL) significantly longer survival.

CLL is the most common form of adult leukaemia and accounts for around 30-40% of leukaemia cases in Western countries and is currently deemed incurable.

The treatment aim is to control the disease and extend patient life expectancy with progression-free survival.

Rituxan (rituxmab) will be used as either previously untreated (first-line) patients or previously treated (relapsed or refractory) CD20-positive chronic lymphocytic leukaemia (CLL) alongside fludarabine and cyclophosphamide (FC) chemotherapy.

Phase III studies presented in December 2009 showed patients with CLL treated with Rituxan plus chemotherapy live significantly longer without their disease progressing compared with those treated with chemotherapy alone. 87.2% of patients with previously untreated CLL who received Rituxan plus FC were alive after more than three years of follow up (37.7 months) compared to 82.5 percent of patients who received FC alone.

The drug was approved in Europe (where it is known as MabThera) for first-line and relapsed and refractory CLL last year, and gained approval from UK cost effectiveness body NICE in July 2009.

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Minute's silence as Warminster footballer loses leukaemia battle

A minute's silence was observed at Warminster Town Football Club on Wednesday in tribute to former player Tim Greatley, who lost his courageous battle with leukaemia on Saturday.

Mr Greatley, 25, who grew up in Warminster, was diagnosed with the disease last May. He underwent a bone marrow transplant at the Royal Free Hospital in London in October but was told on February 8 that the disease was terminal and he could have just months to live.

He was taken to the Great Western Hospital in Swindon on Tuesday with breathing difficulties and died on Saturday, surrounded by his family.

Mum Fiona Blackwood, 46, of Fenway Park in Chippenham, and dad Rob said their son’s bravery was an inspiration and he would be missed by everybody who knew him, especially his daughters Emma, six, and Lily, four.

Mrs Blackwood said: “Tim was a very loving son and he is going to be so sadly missed. He put up a long, brave fight. I think many people would have given up long before him but it was his little girls that made him fight for his life.

To read more please visit the "This is Wiltshire" website by clicking HERE.

Nerve agents could be to blame for tripling of child leukaemia in Basra

Rates of leukaemia in children around the Basra area of Southern Iraq have almost tripled in the last 15 years according to calculations by public health experts. Research published in the American Journal of Public Health documents 698 cases of leukaemia among children under the age of 15 in the period to 2007. There was a peak of 211 cases in 2006.

Rates increased from three to almost 8.5 cases of the disease per 100,000 children over the time period. This is more than double the rate of leukaemia in the European Union.

The researchers, who studied hospital cancer registries in Basra, said that more analysis was now need to identify triggers for the surge. They speculated that increased exposure to substances related to childhood leukaemia might be responsible — such as byproducts of regional petroleum fires and benzene, which comes from gasoline sold by children at the side of the road as a result of disrupted fuel supplies. War-related nerve agents and pesticides, and the widespread use of depleted uranium munitions, might also be factors, they said.

For the full report click HERE to see the Times On-line Web page.

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When special offers are not really...well....offers at all !

I received an email from my telephone provider today.Its a strange one really because they also own the company that I have my broadband with...but I am not actually a broadband customer of theirs! .Anyway,I digress !. The point of this post is to illustrate how companies can "bend the facts" to make bad deals appear to be very good ones!

This is the email

I received.....

"Welcome to February's TalkTalk Rewards. This month we've got even more great gifts for you - from PC accessories to educational games, music and DVDs.

You could get your hands on a funky laptop sleeve, learn the basics of French, boogie on down with the greatest hits from the 70's and 80's CD or get fit for summer at home with a Body Blitz DVD. With loads of gifts to choose from, there's something to suit everyone.

Remember these gifts are free* - all you have to pay is £2.99 for postage and packaging. It's our way of saying thanks for being a TalkTalk customer. So what are you waiting for? Collect your reward today! "

Sounds good so far yeah ?.....well, not quite.....let me explain why.........

This is an example of some of the FREE gifts on offer:

A Neoprene laptop sleeve."Worth £13.99" + £2.99 postage. I bought one of these in the POUND SHOP 2 weeks ago....yes, for a pound !

An HDMI Cable. "Worth £12.99" Err...sorry again ! £1.99 actually in Home Bargains ...less than the postage for my "FREE" item !

A 12-in-1 card reader. Worth £9.99 (as they tell you) ? No.Bought one the exact same from the POUND SHOP...for a pound (Strangely) 2 weeks ago! And yet again you have to pay £2.99 for their postage !

A 4GB MP3/4 player. Foehn & Hirsch W180 Groove MP4 Player 4GB FM Radio G-Sensor and Charger with 1.8 TFT Screen Black.£ 27.99 (SRP £59.99)+£2.99 P&P. Erm.........Ebay says you are wrong

So be warned, all that glitters is not gold, and all that is "free" may actually be being sold !

Suffice to say that I won't be "buying" any of these "rewards" :-)

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