Chris Luck's Blog

The Prostate Cancer Charity has started to lobby against NICE’s decision not to support abiratone for men with advanced prostate cancer. Check out this video of Dr Sarah Cant, the Head of Policy and Campaigns at the charity:

You can go directly to the charity’s campaign web page at this address: http://www.prostate-cancer.org.uk/NICE

Keep emailing your local MP! Thank you for your support.

I emailed my local MP yesterday regarding Nice’s decision not to support the use of the new drug abiratone (Zytiga) for men with advanced prostate cancer.

I invite all my readers to join me by emailing their MP. If you don’t know the email address for you local MP you can find it at the gov.uk website Find your MP.

Feel free to write whatever you think appropriate, but I have included this simple four sentence text as an example. I hope it’s helpful.

Dear [name of MP]

I am emailing to register my shock at the decision by NICE not to recommend the use of abiratone for men with advanced prostate cancer.

I agree with Cancer Research UK when they said that this decision makes “no sense”.

10,000 men die every year in the UK from prostate cancer yet awareness of this dreadful disease is often poor.

I urge you to lobby NICE to change this decision and to use your position to raise awareness of the plight of men in this country with prostate cancer.

[Signed]

It will only take a matter of minutes to send an email, but it could extend the lives of literally thousands of men with prostate cancer. Thank you for your support.

The Mirror tabloid newspaper has waded into the furore regarding NICE’s decision not to approve abiratone(Zytiga) for patients with hormonally resistant prostate cancer with an article entitled; Cancer charities blast health chiefs for not approving ‘too expensive’ prostate cancer treatment.

Owen Sharp, the chief executive of The Prostate Cancer Charity, is quoted again, this time saying:

“Quite simply, abiraterone prolongs the life of men with incurable prostate cancer. This draft [daft?!] decision is a bitter blow to thousands of men and their families – and must be overturned. The drug is one of the biggest breakthroughs in the treatment of the disease for many years and it will be devastating if this drug remains out of their reach when they need it the most.”

Meanwhile I have obtained copies of the expert submissions to NICE regarding abiratone which are universally positive about the drug and its benefits. They urgently point out that without abiratone men will have very few options.

For example, the Prostate Cancer Cancer state in their submission:

This treatment will make a significant difference to these men by offering the possibility of extending their lives, when there are only very limited treatment options are available, apart from palliative care.

The Prostate Cancer Network states:

Currently, there is no alternative in the UK treatment pathway, other than repeating docetaxel, which may have severe side effects.

And the Royal College of Physicians say:

Abiraterone acetate should be considered to be primarily an additional treatment option for men with castrate-refractory post-docetaxel metastatic prostate cancer.

NICE’s decision seems to be made on the basis of cost but the submission from the Prostate Cancer Network points out that abiratone will be far cheaper than the only other option which is more chemo. Chemo entails a visit to the hospital is costly in terms of patient support and entails far more side effects which will need to be medicated against. Abiratone in contrast is taking orally as a couple of pills and can be done at home:

When considering the cost of abiraterone, you need to subtract the costs of alternative treatments such as docetaxel. (costs of chemo, chemo suite at hospital, staff costs, oncologists time and cost (and there is a shortage of oncologists, so might avoid hiring and training a few more). Prolonging a patients disease progression can also postpone and/or save the increased costs associated with the most advanced disease. There also has to be a significant value placed on Quality of Life. So the net cost of abiraterone will be considerably less than the gross cost.

Come on NICE, listen to the experts!

A copy of all the submission documents can be found by following this link. The draft guidance can be found here.

Today the new media reported the appalling news that NICE (National Institute for Health and Clinical Excellence), has decided that the NHS should not support the new drug Zytiga for use in patients with advanced prostate cancer (report here).

What!!!

Are these people mad or just bad?? Zytiga (also know as abiratone) has been hailed as a breakthrough for men with advanced prostate cancer who otherwise have very few options. Cancer Research UK said that the decision made “no sense”.

Too bloody right! In the past I might have heard of decisions made by NICE safe and secure in my own cocoon of complacency knowing that the decisions didn’t affect me. Not any more.

I believe that Zytiga may well be the next major step in my treatment and now I can look forward to the possibility of spending £3,000 a month for the privilege of using it. Of course I won’t be able to afford that and so will I suppose just have to accept that my life will be shortened as a result. As someone who has worked all their life and paid their national insurance I feel really angry – no, I’m livid. I wouldn’t normally say such a thing but I hope that some members of NICE end up with cancer and then come to know what it feels like to be at the sharp end of their decisions.

Owen Sharp, chief executive of the Prostate Cancer Charity, also commented on NICE’s decision, saying:

“[Zytiga] is one of the biggest breakthroughs in the treatment of the disease for many years and it will be devastating if this drug remains out of their reach when they need it the most.”

Yeah right, and I’m in the queue waiting to be devastated!

But perhaps I should dare to ask a much deeper and pertinent question. If Zytiga were prescribed for women with breast cancer would the decision of NICE be different? It’s difficult not to believe that NICE would be much more inclined to approve the drug under those circumstances. We’d all like to imagine that NICE makes its decision objectively but a few moments reflection makes it clear that cancer is a highly politicised area of modern medicine.

Recently the prostate cancer charities produced a report highlighting what they called the forgotten 10,000 (Telegraph report). These are the 10,000 men in the UK who die every year due to prostate cancer. This is only 2,000 less than the number of women who die from breast cancer yet research into breast cancer far exceeds that spent on prostate cancer and the general public’s awareness of prostate cancer is much lower.

The truth is that our society seems happy to accept that 10,000 men are going to die every year (many of which would benefit from Zytiga) but is shocked by the thought of 12,000 women dying of breast cancer. But then that’s what men have always been good for – dying.

I hope that the prostate cancer charities will be lobbying hard now to get NICE to reconsider. I find it difficult, given the facts, to understand why the people sitting on the NICE committee made this decision in the first place.

I came across this little quiz on a website recently. The answer to each question is either true or false. My comments are shown in curly brackets:

1. “Watchful waiting” is still a top option for this slow-growing cancer.

3. Tests can help determine if you’re at risk for prostate cancer recurrence.

4. Some drugs can slow the progression of advanced prostate cancer.

5. Most men with prostate cancer will eventually die of the disease.

Source: http://www.webmd.com/prostate-cancer/prostate-cancer-quiz

The radio news this morning was full of warnings that we were going to experience a cold snap. In a typically British way this news is presented with much doom and gloom. Hey … you know what? Its called winter!

Temperature is clearly a physical phenomenon that can be accurately measured. The weather forecasters can tell us with great accuracy the temperature at different parts of the UK over the past twenty-four hours and provide dire predictions of the temperatures to come.

Yet our actual experience of temperature can be surprising subjective.

As part of my autogenic training I have to affirm that my arms, legs and solar plexus are warm. And often I can get a genuine feeling of warmth as a result of these affirmations.

In a similar way when having a hot flush (which is an unfortunate side effect of my hormone therapy) imagining swimming in an artic sea surrounded by icebergs does actually help ameliorate the worst effects.

There are of course limits but it’s interesting that simple affirmations or visualisations can alter our physical perception of temperature quite dramatically.

A news website posted a report today about a group of researchers in Cairo who claim to have discovered the oldest case of prostate cancer in an ancient Egyptian mummy (report here).

By using CT scans they discovered several small, round, dense bone lesions in the mummy’s pelvis, spine and limbs, which are clear signs of metastatic prostate cancer.

The find is interesting because it shows that cancer has been around for a long , long time. There is constant speculation as to why there seems to be a rise in cases of cancer over the past few decades but of course one obvious reason is simply that people in the past did not live long enough to have cancer. The biggest risk factor associated with nearly all cancers is age.

Salima Ikram; member of the research team and professor of Egyptology at The American University in Cairo (AUC) said that: “Life expectancy in ancient Egyptian societies ranged from 30 to 40 years, meaning that those afflicted with [cancer] were probably dying from reasons other than its progression.”

What is clear is that cancer has blighted mankind for a long time and is most likely associated with genetic factors rather than environmental ones. It’s probable that the scarcity of records of cancer in the past is simply due to the fact that people had a much shorter life span.

I visited my local clinic for my thirteenth Zoladex injection today (they still haven’t sorted out the replacement Prostap injections!).

Actually I should have had the injection yesterday but what with my cold I completely forgot. I was grateful that the clinic was able to rearrange my injection so quickly. There are a few days grace regarding the timing but not a lot. I certainly wouldn’t have liked to have put the injection off for more than a week.

When I mentioned my cold the nurse commented on the fact that a cold isn’t a serious illness but it makes you feel awful.

Too true. My cancer doesn’t generally make me feel ill but knocks the common cold into a cocked hat when it comes to seriousness.

Outside my window,
The rain dolefully drips down,
Onto the waiting earth,
Where it is welcomed,
As the bringer of new life,

But inside my soul,
A desert; dry and dusty,
Where words are unknown,
And feelings have withered,
And become like old bones.

Where is the water?
To replenish my spirit,
Where is the rain?
To bring forth,
New words for my pain?

I am sucked dry,
And wander through barren lands,
Where emptiness,
Swallows my thoughts,
And makes my mouth dumb.

Unfortunately having cancer doesn’t make me immune form the common ailments that affect everyone. I wish it would – at least there’d be some usefulness in having cancer. But there’s nothing useful about cancer at all.

And so I find myself at home with a streaming cold. On top of all the pills and medications that I normally take I’m now imbibing alarming quantities of Lemsip and sitting on the sofa feeling sorry for myself. I’ve got through two packets of tissues already.

I’d forgotten just how unpleasant having a cold is. The worst thing is when I start to feel a bit better and hope that it may be on its way out and then shortly after feel worse than ever. It plays with me. But then all illnesses are like that. My cancer plays with me as well – somtimes pretending that its going away or at least laying dormant for a while. But its always there like a nasty stain that can’t be removed.

The worse thing is feeling unable to do anything. I feel useless and that leads to feelings of self pity and introspection. And that just feeds the cancer monster inside me. It loves self pity. I can almost hear it gloating right now.

Time to put the kettle on, make anothe cup of tea and see if I can focus my mind on something – anything!