FDA says NO to Avastin for breast cancer

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America’s Food and Drug Agency

turns down Avastin appeal

 

In Washington, advisers to the Food and Drug Administration voted 6-0 to halt the use of cancer drug Avastin for the treatment of breast cancer.

They say studies have failed to show Avastin is effective for that purpose.

Makers Genetech had mustered a mass of testimonies from doctors and advocacy groups, and patients such as  Crystal Hanna, a mother of two who will celebrate her 36th birthday Friday.

“I’m a testament that the drug does work…I’m not just a statistic,” she said. “Keep breast cancer on the label so that I and others like me can celebrate more birthdays.”

This was a very hard-fought political battle, and Advisers acknowledged the emotional nature of the issue, but said  science should prevail. “I think we all wanted Avastin to succeed,” said Natalie Compagni-Portis, a member of the committee. “And yet what we have to do today is respond to the research that’s been presented to us…these studies didn’t bear out that hope.”

The drug will remain on the market for other cancer treatments, but the FDA’s withdrawal will likely mean insurance companies won’t cover it for breast cancer patients. As a result, many women won’t be able to afford the treatments, which can cost up to $100,000 a year.

Though the FDA will make the final decision, it rarely ignores recommendations of its advisers. One of the rare instances was in 2008, when the agency approved Avastin for breast cancer treatment for the first time. The decision came under the agency’s “accelerated approval” process, which fast-tracks potentially life-saving drugs on a conditional basis.

WASHINGTON…A panel of advisers to the Food and Drug Administration voted 6-0 to halt the use of cancer drug Avastin for the treatment of breast cancer, saying studies have failed to show Avastin is effective for that purpose.

The recommendation Wednesday came after two days of testimony from patients, doctors, and advocacy groups. The panel faced several tearful accounts, like that of Crystal Hanna, a mother of two who will celebrate her 36th birthday Friday. “I’m a testament that the drug does work…I’m not just a statistic,” she said. “Keep breast cancer on the label so that I and others like me can celebrate more birthdays.”

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Advisers acknowledged the emotional nature of the issue, but said the science should prevail. “I think we all wanted Avastin to succeed,” said Natalie Compagni-Portis, a member of the committee. “And yet what we have to do today is respond to the research that’s been presented to us…these studies didn’t bear out that hope.”

The drug will remain on the market for other cancer treatments, but the FDA’s withdrawal will likely mean insurance companies won’t cover it for breast cancer patients. As a result, many women won’t be able to afford the treatments, which can cost up to $100,000 a year.

Though the FDA will make the final decision, it rarely ignores recommendations of its advisers. One of the rare instances was in 2008, when the agency approved Avastin for breast cancer treatment for the first time. The decision came under the agency’s “accelerated approval” process, which fast-tracks potentially life-saving drugs on a conditional basis.

Approval was based on a single study by the manufacturer, which suggested the drug prevented the disease from advancing for an average of 5.5 months. But subsequent studies have failed to replicate the results, and have shown the drug carries serious risks like high blood pressure, heart attacks, and bleeding.

“We are very disappointed by the committee’s recommendation,” said Krysta Pellegrino, a spokesperson for Genentech, which is based in South San Francisco. The company has successfully marketed Avastin as a blockbuster drug for treating colon, lung, and brain cancers.

What next?

According to reports, approval was based on a single study by the manufacturer, which suggested the drug prevented the disease from advancing for an average of 5.5 months. But it was said that subsequent studies failed to replicate the results, and showed the drug can carry serious risks like high blood pressure, heart attacks, and bleeding.

In Britain, this might mean drug companies paying much more attention to keeping patients happy, instead of ignoring side effects that patients present.  With the new broom sweeping through the NHS, patients are going to be demanding value for money, and questioning if the sometimes horrendous side effects actually produce a compensating benefit to them, rather than the drug company’s profits.

Dr. Grumpy's down-to-earth comments on internet med-sites

Image via CrunchBase

Dr. Grumpy and Dr. Google

 

Dr. Grumpy is an American doctor who writes amusingly about the happenings in his surgery, and the weird things we patientssometimes  come out with.

But mixed in is often sensible advice, when this time he writes about using Google to find out what’s wrong, or get a second opinion.

For my part, I fail to see how doctors can think that anyone (like most of us) who manage taking 12 different types of pills daily, juggles with the eight different doctors who have the average patient in their care (and hopefully manages to keep them all sweet) and can sort out the NHS appointment letter which tells you that “your appointment for July 14th has been cancelled, and re-booked for July 14th” – would not be able to understand medical information posted up on a world-famous cancer hospital website.

Dr. Grumpy’s take on ‘Dr. Google’ is enlightening, saying :

“The monthly Costco Connection magazine was left in my lobby recently, and on a quiet day I glanced through it. It featured an article asking whether or not patients should seek medical information online.

Comically, they decided to get pro and con opinions from 2 individuals- NEITHER OF WHOM IS A MEDICAL DOCTOR!

Really. The 2 experts they quoted were Dave deBronkert, who’s a “voluntary co-chair for the Society for Participatory Medicine” and Judy Segal, who’s an English professor at the University of British Columbia.

Now, I have nothing against either of them. I mean, they are both obviously intelligent, highly educated individuals. But I think it’s pretty damn funny that the writer didn’t feel it was worthwhile to, say, ask a medical doctor.

So, Costco mag, here’s my 2 cents worth.

First of all, this question is moot. Like atomic energy, cloning, and stem cells, this genie ain’t going back in the bottle. People already DO look stuff up online, and unless the internet completely crashes, will continue to do so.

Second: I suppose most of you are expecting me to be adamantly against my patients looking up stuff. But ya know what? I’m not.

Most patients actually DO benefit from learning more about their diseases online. At least half of what I tell them in the office won’t get absorbed anyhow. And I don’t have the space to keep a million little “Living with Schnorkfloodle’s Syndrome” pamphlets lying around. So I refer them to what I consider to be reputable websites (not BigPhilsguidetoParkinsonsDiseaseandroofingmaterials.com).

But there are also the cyberchondriacs. They type a few symptoms into Google, and wa-lah! They are now convinced they have whatever got the most hits (for neurology purposes, I’d estimate that 90% of search engines lead to a self-diagnosis of MS).

It’s this group that drives me nuts. They want me to prescribe treatments that are only available somewhere far away (like Senegal). Or they bring in a HUGE stack of information written by a Holostic Reflexologist on a site that has absolutely no valuable medical info at all (but because it has nice graphics it MUST be true). Or they want me to magically enroll them in some study being done in another state that I have absolutely no connection to.

This is where the real problem starts. People who don’t have medical knowledge make the scary leap from symptoms, sometime quite vague, to fixating on whatever the internet says they MUST have. Medicine is a process of collecting data from several angles and working out probabilities. If you don’t have the training to do that, the information in front of you can be terrifying. Not only that, most people don’t understand the difference between various phases of drug trials, so a treatment that’s in development suddenly becomes one they think is available.

And here’s what really grates me: if these people need a car fixed, they’ll do a ***load of research to find a reputable place. They wouldn’t dare just grab some random stranger and ask them to repair it. But when they have a health issue they’ll take the word of a pet mausoleum architect with a nice internet site over that of a reputable, trained, medical professional.

So here’s the take of an uninformed yak herder pretending to be a neurologist: Is it okay for patients to learn about their health issues on the internet? Of course!

As in everything else, though, it depends on the source of the info, the person reading it, and what they do with it.

Let the buyer beware…”

And as Dr. Grumpy says, “I’m sure I’ll hear from those of you who believe this is because we docs are secretly conspiring against you as part of some giant medico-pharma fiendish plot, and therefore can’t be trusted”.

www.drgrumpyinthehouse.blogspot.com

Don't pop pills for joint pain – rub on a gel

Doctors love to prescribe pills – but there is a better solution

 

I have a wonderful private doctor, whom I go to when all else fails;  he is  expensive, otherwise I would go to him every time.

The reason for this is he spends time talking to you – to find out why you are there and discuss possible solutions.

Seldom will he reach for the prescription pad – instead he tries to work out an answer to your problem.

Over lunch the other day I met a similar doctor;  he talked, and made it clear that there were other solutions to help with pain, rather than the ‘newest’ anti-pain tablet.  His ideas tallied with my disquiet about popping pills when I have a pain.     I feel that I should find out what causes this;  not mask it with an opiate.

The NHS is fast becoming the National Help-yourself service, particularly when it comes to pain, and sometimes the solutions we find for ourselves can be more helpful than a pill.

Reports say that pain clinics are feeling the freeze, and waiting times are getting longer for those lucky enough to find their hospital still has such a clinic.  If you do finally get to see someone, they turn out to be ‘paper pushers’ – and come out with my most-hated phrase: “on a scale of 1 – 10 how much would you say it hurts?”

I had polio, and my darling Polio Consultant, Prof. Guiloff,  NEVER asks me such a stupid question.  His attitude is if a polio patient says it hurts – they say this for a reason.  And you can’t tell how you feel by numbers.    However, when in pain, we often sub-consciously rub the affected part;  or when a child hurts themselves, we will say “let me rub it better”.

So when dealing with Joint Pain, it can make sense to rub in a gel, rather than take another pill – whose side effects might cause more problems.   And at lunch the doctor suggested I try rubbing in a gel called Deep Relief.

Deep Relief worked like a charm on my aching joints .

As the pain comes and goes, it doesn’t last long enough for me to still be in pain by the time I have waited to see a doctor.    But now, when I feel the first twinges, I rub in the gel;  I did this five minutes ago when my shoulder started to throb;  now it is perfectly calm and no pain at all.

However, when patients ask about different forms of pain relief, other than pills, we can face hostility.  So it was doubly reassuring to talk to this doctor and find out that he didn’t like pain killers either.  He was concerned that it was possible to cause liver damage if you became addicted, or get gastric inflammation.

When I left hospital after my lumpectomy, I was handed a big box containing 100 Tylex, but didn’t take one.  Apparently the NHS spent £91 million last year on prescriptions for pain relief, yet I wonder how many boxes are lying unused in the back of cupboards?  Different painkillers work differently on different people, but when you try and talk sensibly to a doctor about definite pains you are experiencing, how often do they take time to work out what is the cause?  Instead – they reach for the prescription pad, and sometimes you end up with a pill that makes you very sick.

Deep Relief is a topical gel which provides a combination of ibuprofen and levomenthol, which helps it to be rapidly absorbed through the skin.  It is made by Rohto, the same company that makes Regenovex (article on this site).

Basically they say that Deep Relief is ia for relief of rheumatic pain and muscular aches, pains and swellings such as strains, sprains and sports injuries, also mild arthritis.

Regenovex is for joint pain, but if you are allergic to seafood then Deep Relief works just as well for me.

www.mentholatum.co.uk

 

Christie's hard work for cancer patients pays off

The Christie presented with Comprehensive

Cancer Centre accreditation certificate

 

At last – cancer patients in Britain may be getting European-standard cancer treatment frequently mentioned by Cameron and Lansley.

Last week The Christie in Manchester became the first centre in the UK to receive the Comprehensive Cancer Centre accreditation as a stamp of excellence.

The prestigious certificate was presented to The Christie alongside four other European cancer centres at the event:

1. IPO Porto (Portugal)
2. IPO Coimbra (Portugal)
3. FIVO Valencia (Spain)
4. and The NKI-AVL Amsterdam (The Netherlands).

Accreditation is awarded to specialist centres that offer a wide range of cancer treatments, undertake world-class research and provide education to the highest standards.

Medical director at The Christie, Dr Chris Harrison, received the certificate from the Organisation of European Cancer Institutes (OECI) president Marco Pierotti and Wim van Harten, president elect, during the annual general assembly in Holland. Dr Harrison was elected to the OECI accreditation board in 2010, and plays a key role within the organisation.

This accreditation means The Christie joins world-leading cancer centres such as the Karolinska in Stockholm, as well as centres in Paris, Brussels and Amsterdam.

Dr Chris Harrison, who has also been appointed to the OECI board, said; “I am delighted that the treatment, care and research delivered by The Christie, that we are so proud of, has been officially recognised at such a high standard by fellow professionals.

For those of us who write about cancer, and cringe at the arrogant way some other UK centres talk about themselves, it was delightful to read the humble way that The Christie is aspiring to be a comprehensive centre, rather than assuming it might be.   “This accreditation follows a robust external audit by our European counterparts and takes us one step closer to our vision of being a world-leading comprehensive cancer centre. It will be an honour to receive this certificate on behalf of everyone at The Christie who work tirelessly for cancer patients.”

The Organisation of European Cancer Institututes (OECI) is a partnership between around 60 leading cancer centres across Europe which set standards in cancer services across the continent. The Christie was the first NHS hospital to be voted on as a member in 2007 and the OECI accreditation programme was launched in October 2008.

Some other members centres (abbreviated names) are Jules Bourdet, Helsinki Univ., Institut Curie; Gustav Roussy; Dresden Univ.; Institut Tumore Bari; Institut Veneto;  CRO Ariano;  Ospedali Bellinzone; Erasmus Medical Centre, etc.

The Christie in Manchester treats more than 40,000 patients every year.

Secondary Breast cancer – conference highlights latest information

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Medicine and Me: Living with Secondary Breast Cancer

Royal Society of Medicine, in association with Maggie’s and Breast Cancer Care, has organised a conference

Tuesday 18 October, 1.00 pm – 5.30 pm
Venue: Royal Society of Medicine, Central London

This is a forum in which patients’ concerns about Secondary Breast Cancer are given top priority.

The meeting will provide an opportunity for patients and their families to

• share their experiences
• to hear about the latest research
• and to question the experts.

The audience at this meeting will comprise those with Secondary Breast Cancer, their families, carers and advocates, representing about 70% of those present; and clinicians and researchers, representing not more than 30%.

The programme includes:

The experience of living with secondary breast cancer over time
Family dynamics – how they are affected?
Legal aspects for cancer patients
Can we afford new treatments?

Details and registration:    http://www.rsm.ac.uk/medandme

'Getting over' cancer isn't easy

Friends who say “you are lucky”

risk a bashing from survivors

When my mother had cancer in the 60s, she spent weeks being cossetted in hospital…..

But left without a single pill or drug to take.

She lived for another 50 years, and had few after-effects.

Contrast her life after cancer with that of today’s cancer patient

Who often feels neglected, abandoned or just not listened to by doctors who are too busy to listen to our concerns – they are getting on with treating the next patient

• Our generation will – on average live a lot longer
• But we have to live with depression and after effects of all the drugs, chemo and radiotherapy that bombard our bodies.
• Yes, most of us are happy that these aides are there to help up live longer.  BUT the downside is……
• You expect to be elated, but, as a ground-breaking new book reveals, cancer survivors are often left feeling depressed, exhausted and even angry.

What type of people would benefit from The Cancer Survivor’s Companion?

More people than ever are surviving cancer. But many struggle with life after the disease, as explained in a revealing new book by psychologist DR FRANCES GOODHART and health journalist LUCY ATKINS.

“People who are getting on with their life, are managing, functioning, but are finding that when they get their head on their pillow at night then the worrying thoughts crowd back in – they find that they are just not feeling that they are back where they want to be. They are people who are really struggling psychologically and probably need one-to-one back-up.”

The authors identify some of the most common problems . . .

Depression

Low mood — or even depression — is one of the most common side-effects of cancer survival. Research has indicated that between 25 and 40 per cent of people may go through some depression after cancer.

Sometimes this feeling kicks in almost as soon as treatment ends, but it might also hit you months or even years later. There are many reasons why your mood might plummet after treatment, but the basic summary is simple: you have been through a very tough experience, physically and emotionally, and it takes time to recover.

You are not mentally ill, you are not ungrateful or a wimp, and you do not automatically require professional help (though you may find this useful). You’re just feeling sad.

Your own expectations about life after cancer also play a part. Often people who are going through cancer treatment make deals with themselves about what they’ll do if and when they get the all-clear.

‘I told myself, and my wife, that if I got through this I would put the rest of my life to good use,’ says Keith, 45, a leukaemia survivor.

‘We talked about how I’d leave my boring job in accounts. We’d set up a residential home together to provide a loving and homely atmosphere for elderly people in their twilight years.’

But the pressure ‘to make the most of life’ can — and often does — backfire. It can feel overwhelming. And this can leave you very confused, lost and low.

Then there is the huge hit your body has taken. You may be scarred and shaken up. You may have suffered enormously. You may feel overwhelmed by side-effects, such as fatigue, mobility difficulties, pain, discomfort or lymphoedema (swelling). On top of this, your general strength and fitness will probably have dimisnished.

Victorians

The Victorians had a concept of ‘convalescence’. They recognised that after a major illness it takes someone time to recover and regain their strength. But over the years — maybe because of the amazing advances in medical treatments — we’ve somehow lost this valuable idea.

My mother spent weeks in hospital after her mastectomy.  Today’s patient is chucked out of hospital one or two days post surgery, carrying disfiguiring drips, mentally bruised and battered, and told “you’ll be fine”.

The expectation these days is that you should be raring to go the moment you are discharged (or as soon as the time between follow-up appointments is lengthened). Instead of telling yourself you shouldn’t feel low, allow yourself time to feel this way.

Sadly, you can’t pack yourself off to a Victorian clinic in the Swiss Alps, but try to work out how to look after yourself while you ‘convalesce’.

There are a lot of practical ways to tackle depression and many effective ones involve simple lifestyle changes. These include eating well, getting active, even just going back to your old ‘grooming’ routines.

Anger

Mixed emotions: Rather than being relieved, many cancer survivors feel angry about why they had to suffer and the treatment they had to endure

If one more person tells me I am so lucky to have got through my cancer, I won’t be responsible for my actions,’ says Gill, 46, a breast cancer survivor. ‘Yes I’ve survived, and I’m immensely relieved about that, but to suggest I’m lucky to have had my breast removed, gone through chemo, lost my hair and had an early menopause shows how ignorant people can still be about cancer.’

Like Gill, you’ve faced your cancer and, after being given the all-clear, are where you have longed to be. So why are you still angry?

One reason is that you still feel threatened. Though cancer is no longer an immediate danger, it might still feel close by. You may be experiencing feelings of helplessness. During treatment, you and your medical team are busy doing something about the cancer.

But when you reach the end of your active treatment phase, even though it’s obviously what you have been longing for, you can end up feeling lost, even helpless.

When active treatment ends, people often begin to look backwards, trying to work out what caused their cancer. It’s common to go over and over this.

If you smoked, drank too much alcohol or did any of the numerous carcinogenic things we all do every day, then you might feel regret and guilt. You may also feel angry at yourself.  Other people’s expectations can be frustrating. Whether they assume you’ll instantly spring back into your normal life or insist on treating you like a fragile flower, it’s common to feel misunderstood.

Anger is not always bad. There are certain situations where it’s useful to get angry: it can help you respond quickly to a threat or motivate you to challenge something unfair or make sure your needs are met.  When the hospital where I was treated brushes off my concerns, I find as a journalist I can give a voice to my anger by thinking ‘laterally’, and writing to the right person to suggest ways to improve the way we are treated.

It’s perfectly reasonable, for instance, to be angry if you hear the local chemotherapy suite is closing. You might use your anger to write letters to the authorities or set up a campaign to keep it open. However uncontrolled, over-the-top or misplaced anger is difficult not just for you, but for the people around you, too.  Similarly, the new Health Bill is closing down many useful and helpful services – so we can rally round and fight closures.

The Hydrotherapy pool at Chelsea and Westminster Hospital was supposedly ‘shut for maintenance’.  This went on and on for seven months;  so those who used to use the pool got together and started writing letters;  yesterday I received a letter saying it had re-opened.  Well done, girls!

There are so many other ways to prove Patient Power works!  So don’t be afraid to tackle them.

Fatigue
Common side effect: Battling the disease physically and emotionally can leave many people exhausted

Fatigue isn’t like any tiredness you’ve had in the past. It affects you both physically and mentally. It can be overwhelming or niggling. Or it can veer between the two.

It is also the most common — not to mention the most frequently ignored — side-effect of cancer and its treatment. Fatigue is a physical and mental response to the stresses and treatments that cancer brings.  It is also a known side-effect of certain medications used in chemotherapy (it can take a surprisingly long time to get over these.)      Other causes include ongoing medication and changes in your immune system or hormone levels.

Your body is also likely to be out of condition — this can make you feel drained and lacking in energy — as, too, can disrupted sleep, which is very common among cancer survivors. Your body has taken a huge hit and needs to be built back up.

You need to learn to prioritise your tasks and to plan ahead to allow for this prioritising. Pace yourself.  Take a nap EVERY AFTERNOON.  The Victorians knew this was sensible – so did Winston Churchill.

The above includes extracts from The Cancer Survivor’s Companion by Dr Frances Goodhart and Lucy  Atkins, published by Piatkus at £14.99.  © 2011 Dr Frances Goodhart and Lucy Atkins.                                                                              To order a copy for £12.99 (including p&p) call 0843 382 0000.

 

Livestrong charity says just 'learning to live with cancer' not good enough

English: Tenovus Mobile Cancer Support Unit (Photo credit: Wikipedia)

Challenges faced by cancer survivors

 

BETTER CANCER SURVIVAL rates across the world have produced a new problem.

“It’s not the cancer that’s the worry – it’s learning to live with the after-effects of cancer drug side effects”, say survivors.

In Britain, the health service has begun to realise making life easier for survivors is highly important, so has set up the National Cancer Survivorship Initiative.  Sadly, like most initiatives, it is foundering in a morass of paperwork and ‘meetings’.

In Wales, the Tenovus charity is doing fantastic work, but although this is a superb initiative, its services need to be duplicated across the UK.

Lynda, who uses their services,  says
“I was diagnosed with breast cancer in August 2008”.   She had a mastectomy and more treatment, and “my partner has a heart condition, and so whilst I was recovering from my mastectomy, we had no money. We did not know which way to turn. I was then told to contact Tenovus.

Their Specialist Advisers made numerous phone calls and filled out lots forms for me. Within a week the staff at Tenovus had sorted out our money and arranged for a crisis grant which allowed me and my partner to sit back and enjoy our Christmas. If it was not for Tenovus, I don’t know what we would have done; they took all the worry off us.

It has been a long road and a hard road but with the support of family and friends and of course help from Tenovus, they have helped me get through this journey.”

However, there are many, more such units that are needed.

Macmillan provides a huge support system for dealing with money problems – but what of those whose problems are long-term side effects from drugs?

I Learned to Live with It” Is Not Good Enough”

In the States, the huge amount of publicity over Lance Armstrong taking drugs has rather over-shadowed his Livestrong Foundation’s work.  But this charity has published a report on Post-Treatment Cancer Survivors in the LIVESTRONG Surveys: A LIVESTRONG Report, 2010.

Recognizing the growing number of cancer survivors in the United States, LIVESTRONG launched the LIVESTRONG Survey for Post-Treatment Cancer Survivors in 2006. Cancer survivor respondents in that survey experienced significant concerns, which for many were not addressed.

To further understand post-treatment cancer survivorship and examine trends over time, LIVESTRONG launched a similar survey in 2010. This report reviews the results from the post-treatment cancer survivors in the 2010 LIVESTRONG Survey and compares them with the 2006 LIVESTRONG Survey for Post-Treatment Cancer Survivors.

Cancer survivors who responded to these surveys experienced a variety of physical, emotional and practical concerns.

While respondents had varied experiences in terms of type of cancer, type of treatment, time since treatment ended and a number of other characteristics;  for these survivors life after a cancer diagnosis continued to bring changes and challenges.

98% of cancer survivors experienced continued physical, emotional and practical concerns. Yet many did not receive help for their needs.  This is probably due in a large part to the fact that patients’ doctors do not understand that once their patients leave hospital, that is not the end.  However positive a cancer survivor tries to be, they often find they are overwhelmed by lingering side effects from treatment, varying from radiotherapy to drug side effects.  Most doctors are not trained to deal with these, and cannot understand why patients keep coming back with problems.

At a recent Macmillan conference, a doctor seriously asked “once they leave hospital, why can’t cancer patients just get on with life?”

Hopefully, Livestrong and other post-treatment surveys will explain just why cancer patients are too debilitated to ‘get on with it’.

In the LIVESTRONG survey,

• 58% of respondents who had experienced at least one physical concern did receive care
• 50%  of those who experienced emotional concerns received help
• only 20 % of those with practical concerns received help.

After analyzing this information, Livestrong believe more should be done to address the needs of cancer survivors. These results highlight the gap between who reports concerns and who receives care for those concerns as a critical breakdown in post-treatment survivorship. This breakdown needs to be addressed.

We have identified three key steps that we believe can help to address the gaps between what cancer survivors are experiencing and what we are able to provide. We must…

1. Connect people to the resources they need.
   When care exists for—and helps to ameliorate—post-treatment survivors’ concerns, connecting more survivors to this care is an actionable means to improve post-treatment cancer survivorship.
2. Identify and disseminate the essential elements of survivorship care delivery that can help to ensure cancer survivors’ needs are met.
   To address the multifaceted experience of surviving cancer, we need systems of care that incorporate a variety of disciplines which are positioned to address the physical, emotional and practical concerns of post-treatment survivors. The cancer community should identify the minimal requirements for survivorship care that address the most common physical, emotional and practical concerns experienced by survivors and leverage resources, such as Health IT platforms, to coordinate good care.
3. Conduct continued surveillance of the concerns of cancer survivors and disseminate research to better understand the experience of post-treatment survivorship.
   Surveillance at the national and local levels should occur on a regular basis to measure the needs of and receipt of care by cancer survivors, including survivors in the post-treatment period. Continued research and attention to this unique piece of the cancer continuum—life after treatment—is vital as the number of survivors increases steadily.

What happens now?

The more surveys highlight the problem, hopefully the more patients will report problems to their doctors.  The first time a doctor is told that post-cancer, you are suffering from fatigue – you risk being told ‘you’ll get over it’.  By the time the tenth patient has reported the same problem, doctors will hopefully think about referral to a suitable clinic or specialist.  But patients MUST report symptoms, and not be made to feel they are complaining over something trivial.

• Watch cancer charity forums.
• Go to online chatrooms and see how many others have same symptoms.
• Badger you doctor for help.

Ask for referrals to pain clinics, insomnia treatment, dermatology departments to deal with skin problems etc.

“If you wait for doctors to offer help – you will wait forever whilst the NHS system only allocates 6 QOF points for dealing with us”, says cancer patient Adela.  She is right – other conditions from Asthma to Alzheimers have negotiated for higher QOF allocations (up to 93 per patient), and when doctors depend on QOFs to allocate money, cancer isn’t seen as a priority.

 

The results from the Livestrong survey are derived from 3,129 cancer survivors in the 2010 iteration and 2,307 cancer survivors in the 2006 iteration who voluntarily participated, primarily online. The majority of respondents were Caucasian/white, female, under the age of 55, insured and employed. While the results of this survey may not represent the experiences of all post-treatment cancer survivors due to its voluntary nature, the findings make an important contribution to the scientific understanding of the needs of this group.

 

Why are so many of us allergic to bread?

Image by treehouse1977 via Flickr

Chorleywood: The bread that changed Britain

Recently there has been a lot written about hospital sandwiches.

In they come on the trolley, and patients in Day Units are told to help themselves.  They poke around, reading labels, then reluctantly walk away from the shrink wrapped, white cotton-wool plastic bread, that makes today’s ‘nutritious’ sandwich.

Nutritious for a company’s bank balance, but not for the poor hungry patient.

These sandwiches are made of bread produced from the specially-developed Chorleywood  recipe.  White or brown, it is probably just a stomach filler, rather than a tasty snack.   Recent comment and research probably shows that so-called wheat intolerance could have been induced by the way this bread is made;  after all,  our grand-parents didn’t seem to suffer from the bread allergies the way we do.

Like so many foods in Britain today, many people are told to avoid them.  First milk, with scientists such as  Michel Montignac recommending we drink organic milk to avoid the hormones found in mass-produced products;  now I wonder if ‘bread intollerance’ could be down to the way bread is produced using ‘new’ ingredients.

Healthy eating

There is also the matter of health. The Chorleywood loaf has twice the amount of yeast of a traditional loaf, it has enzymes and oxidants added and while certain chemical additives such as potassium bromate have been banned,  bread campaigners believe it is behind the growth in the number of people who struggle to digest bread.

Paul Barker of the  British Federation of Bakers says “every day I have people who say they have given up eating bread and then find they don’t have a problem with bread that’s been allowed to develop slowly. My sourdough takes more than 70 hours to make.”

Proving this, however, is another matter. Prof John Warner at Imperial College in London says there has been a marked increase in allergies and intolerance of wheat and bread over the last 50 years, just as there has been an increase in allergies to dust, nuts and dozens of other items.

However, three-quarters of people who believe they have an allergy or medical intolerance to bread show no signs of any symptoms in blind testing.

He himself though is wary of what sort of bread he eats. “We have several pounds of bacteria in our guts and there have been marked changes in this gut flora in affluent societies over the last 50 years.”

And while producers are not obliged to say what enzymes are added to the bread, Polson says there is no evidence that it is any harder to digest.

“There are some additional additives to give it a bit more shelf life, a bit of extra softness – but all it’s doing is augmenting what is happening in the natural process.”

How we changed from crusty loaf to ‘cotton wool’

For the last 50 years, bread first produced in Britain has spread across the world, and can even be found on supermarket shelves in France.  France is home to some of tastiest bread, but even the gourmet French market has succumbed to the convenience of the sliced,  plastic wrapped, sandwich loaf.

This, I am sad to say, was first createby British bakers  at the Chorleywood Flour Milling and Bakery Research Association laboratories in 1961.  Today, more than 80% of all loaves in Britain are made the Chorleywood way. Even the fresh crusty bread baked at your local supermarket is probably made this way.

The scientists at Chorleywood managed to produce a loaf 40% softer, reducing its cost and more than doubled its life. What is more, each slice was uniform, making it easier to prepare sandwiches to take to work or school.

Its detractors may say it tastes like cotton wool”, but  “it is a process we invented and we should be very proud of it,” says Gordon Polson, of the British Federation of Bakers. “UK bread is around the cheapest in the world.”  But to someone having to buy alternatives because their child can’t tolerate bread – these are not cheap.

This started in the late 1950s and the need to try to find a way for small bakers to compete with new industrial bakeries. The light brown “national loaf” during the long years of rationing had, for many consumers, outstayed its welcome. Soft, springy, white bread – that did not go stale quickly – was what the public wanted.The research bakers at Chorleywood discovered that by adding hard fats, extra yeast and a number of chemicals and then mixing at high speed you got a dough that was ready to bake in a fraction of the time it normally took.  Bread could be made easily and economically with low protein British wheat, rather than the wheat traditionally imported from Canada, etc.

The move was good for British farmers growing low-protein wheat, but with industrial bakers quickly adopting the process, rather than helping small bakeries, the research at Chorleywood helped put thousands of them out of business.

But for some bread lovers, particularly the “artisan bread movement” anything ‘Chorleywood’ is simply not real bread.

The process is now used in more than 30 countries with Colombia and Ecuador taking it on in the last few years. Britain’s white bread market is around £1bn a year and most of that is Chorleywood bread.  It’s cheap, filling, soft, long-lasting and, because it can turn low-protein British wheat in to palatable bread, a boon to British farmers.

Waste

But while it’s considered by researchers at the food technology research institute in Chipping Campden to be a marvel of food engineering – the public does not seem to value it too highly.

Almost a third of the bread bought in Britain – 680,000 tonnes a year – is thrown away.

Malcolm Group turns the tables on Eddie Stobart

But it’s all in a good cause

At the star-spangled Emerald and Ivy Ball, held to raise money for Cancer Research UK, Andrew Malcolm put in a secret bid to have the name of his haulage company emblazoned on an iconic Eddie Stobart Truck.

Arch rivals in business, everyone laughed when the bid was revealed;  now the newest and biggest Eddie Stobart refrigerated trailer is pounding the motorways, with a special Malcolm Group livery emblazoned on one side, and the message

‘Together we will beat cancer’

Eye-catching!

So the two biggest names in the UK multimodal logistics industry have joined forces, and it is Cancer Research UK that will benefit.  Before the surprise bid, Stobarts had already donated £151,700 to the charity;  one pound for every mile a nominated truck had covered in 2010.

The other side of this massive monster above lists names of 75 individuals who have each pledged a £1000 financial contribution to the charity.  And if that wasn’t enough, a husband at the ball bid £5,000 to have his wife’s name, Debby, as the truck’s name.

Where was this?

Ronan Keating’s Emeralds & Ivy Ball was held in Battersea Power Station, and guests had no excuse for not seeing Eddie Stobart everywhere;  as they arrived their way in was lit by the headlights of a team of Stobart trucks lined up in immaculate formation, and inside were stars of the TV series now being aired about the company.

Guests at the Ball had another sight of these massive trailers, hitting them in the eye with the opportunity to bid for their name to be listed on the side of the refrigerated trailer for a full year. At the end of the evening, Andrew Malcolm, chief executive of the Malcolm Group, made a further donation to brand the remaining side and the rear with the distinctive Malcolm Group livery.

What Stobart fans can look out for

Eddie Stobart’s has a dedicated fan club, who, like train spotters of old, mark off each truck as it goes past.  But for the first fans to see the ‘new’ truck this must have been quite a shock – but not half as much as the Stobart Group when Malcolm’s cheeky bid was announced!  But it was all in a good cause, and now the trailer carries massive advertising to bring Cancer Research UK’s message to passers-by.

The trailer will operate on the Stobart Chilled network and will be pulled by a special Volvo FH16 tractor unit driven by Eddie Stobart: Trucks & Trailers TV star Matt Ekins. The total mileage covered by the truck during 2011 will be converted to pounds and presented to the charity.

Andrew Tinkler, Stobart Group chief executive, said: “This is proof of how the UK logistics industry can work well together and, in this case, help raise an incredible amount of money for charity. We supported the event, but wanted to offer the charity ongoing public exposure after the event – so what better way than to brand an Eddie Stobart trailer. It’s fantastic that the Malcolm Group has come onboard as well to lend its support to this very worthy cause.”

As Andrew Malcolm, the Malcolm Group chief executive, said: “It’s a fantastic opportunity for the UK’s leading logistics providers to join forces to raise money and awareness for such worthy charities.”

The Emeralds & Ivy ball helped raise almost three quarters of a million pounds for Cancer Research UK and the Marie Keating Foundation.

Will elderly cancer patients end up on scrapheap?

Flickr

What’s your Date of Birth?

 

DON’T tell it to an NHS worker – or beware the consequences.

You  could become a victim of ‘age bias‘, and end up in an old people’s ward, receiving poorer service than a younger cancer patient, with fewer nurses, all because of the way the NHS sidelines those over a certain age.

This has come out in a report from The King’s Fund.

Recently Paul Burstow, who is responsible for NHS services for the elderly, said   “it is unacceptable that our cancer survival rates lag behind our European neighbours, when we spend the equivalent amount on healthcare, and that 15,000 people in the UK over 75 are dying prematurely from cancer each year when compared to the best performing countries worldwide”.

This is how we treat

• people who worked all their lives, and contributed the equivalent of well over £100, ooo to NHS funds
• never took ‘sickies’ or a day off work
• cost the NHS very little and were seldom seen in Surgery waiting rooms
• worked their socks off in aid of medical charities – the organisations that Andrew Lansley is making the back-bone of his current services as he knows they don’t cost NHS a penny
• never complain, as “I don’t like to make a fuss”

King’s Fund

Their recent report paints a bleak picture of NHS cancer services for the elderly.

• Some  15,000 NHS patients over 75 tended to die prematurely.
• UK is way behind survival rates of most European health services.
• Older patients were under-treated on NHS
• Chances of survival were poorer
• Elderly less likely to receive proper tests
• Studies identified a clear ‘age bias’

What’s happening

The post-code lottery is biased against the elderly.  Not only are they less likely to receive services, but they are often too old to protest or demand better care.

The King’s Fund identified one factor as being delayed diagnosis, and a case study repeats this:

Patient A is 72 years old.  Has had breast cancer.  Worried that health had deteriated, had a postal test for bowel cancer and this came back saying blood was present.  When she spoke to doctor, was referred for colonoscopy and endoscopy at local foundation hospital.

She should have had this within two weeks.  She had health issues so needed an anaesthetic during the procedure, but two hospitals said they didn’t do this.  Eventually she got a friend to call about this, and first hospital said they frequently arranged anaesthetics for this procedure, and could certainly do this.  As her friend was much younger, she wonders if she was told the hospital did not do this as they might have been told to ‘cut down’ with older patients?  By this time over four months had passed.

She had the colonoscopy, but was woken and told that (to save money, she suspects), she would have to have the endoscopy later.  This time she decided she could do without an anaesthetic, but when she turned up for procedure  was rushed through before the sedative had had time to take effect, causing massive bruising to her vulnerable throat muscles as they weren’t relaxed:  sedative hadn’t had time to work.  This necessitated strong pain killers for next ten days.

She suspects her treatment was “because I am old, dear”.

Macmillan say “there is strong evidence to show that age, not their health, is the main consideration when choosing the most appropriate cancer treatment for older people.  Next year, the Equality Act will outlaw age discrimination in the health service – but if you are in an ‘elderly’ ward, with fewer nurses and doctors allocated, the Act isn’t going to help.

Now, with waiting times getting longer for tests and other procedures, are the elderly in danger of being totally forgotten?

If you are looking after an elderly person, see

http://after-cancer.com/nhs-watch/more-ideas-to-make-the-nhs-work-for-you/

Many of the suggestions have been tried and tested, looking after elderly relatives – and they worked!  We are all going to get old – but with today’s NHS treatment of the elderly, this is not something to look forward to.