Kidney Cancer Bloggers Have your Say

Yet again N.I.C.E. are refusing to approve a second line drug Everolimus (Afinitor) for treatment of Renal Cell Carcinoma (Kidney Cancer) patients.

On what basis?  Yes, you guessed it, pure cost.  It’s simply dreadful that we’re in this position again having just been through this with Sutent.  When patients life’s are at stake we are dictated to by a committee driven not by compassion but by pounds and pence, it just isn’t right.

Based on what? The drug has only recently come onto the market and to that extent there hasn’t been a long enough period of time to jump to conclusions.

This kind of stupidity stifles the oncologists who are left with their hands tied and no treatment options.  The ability to mix treatments is taken away from them.  It’s a hard enough disease to contend without these barriers.

The toughest part of this is that we’re not dealing with thousands and thousands of patients, but just a small minority of people that could gain enormously.   Whilst extra time appears to be irrelevant to N.I.C.E. it’s huge to the individual and their families.

Where is the compassion? I wouldn’t wish this disease on anybody but there are times I wonder if things would change if just one of these people at N.I.C.E. were directly effected , their minds would soon change.

As a rejoinder don’t think for one second that you’re protected by private health, these drugs are only made available for the first year and then it stops and you’re back in the NHS system.

An additional frustration is that some of these drugs are developed in the UK and yet are made available in other countries and we are left behind.  Why is that?  Are we so poor?

As usual we’ve been left with but a few weeks to appeal against the decision an as usual they’ve kept that part quite.

Come on N.I.C.E. get your act together and start making decisions based on compassion and not cost.  If N.I.C.E. ‘s only purpose is to decide on a QALY factor then I fail to see why they are there in the first place.  Anybody can do maths.  We want more than that, we want an independent committee that makes its decisions based on clinical evidence and human factors.  If N.I.C.E. is not making these decisions weighted on the side of the patient then I fail to see its value other than a way of the government being able to pass the buck.

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Posted under Afinitor(aka Everolimus/RAD001), N.I.C.E.

Well, I got into a little bother yesterday for publishing yesterday’s blog so I’ll stick to a topic I know I’m safe with (it will be re-published later)

The great news is the Arch to Arc cycle ride has reached well over 50% of the £20,000 target and we’ve still got a lot of time left.  Keep up the good work everyone! This is really going to make a difference.

Cycle Weekly have kindly donated a number of copies of one their latest editions which contains a pretty good training plan to get people from 0 miles to 100 miles in a day.  We’ll be sending these out shortly to each of the riders along with a registration form that we want everyone to complete.

On the sporty front I’m getting more than a little nervous about the Cross Country Ski marathon in a few weeks time, I don’t feel anywhere near enough ready for it.  I just wish we could have some more time in the snow before we go.  Other people are doing seeding marathons before the event and our Austria marathon seems a long time ago now.  I keep on telling myself that it’s not a race and if I dont complete it this year it doesn’t matter and there’s always next year.

However, at least I feel my cycling’s getting better.  I even dug out my birthday card from my sister this morning to give me some motivation.

The Birthday Card

It was great to receive this, much as I hate the Moon Pig adverts the output is great.

I’m pretty much ready to do the exploratory ride to Paris and it’s just a case of picking the right few days now. Hopefully next week, but we’ll see, it’s very dependant on a few commitments I have and the weather.

So there we are, a short update.  Just a few more riders to confirm and sign up now and then we’re off!

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Posted under Andy Thomas, Arch To Arc 2010

I need to make some changes to this post, it will be back again soon!

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Posted under Andy Thomas, N.I.C.E.

I can’t believe how long it has been since I updated the blog.  Maybe it shows that I have been getting on with my life.

I am involved with the suvivors sub-committtee for this years Relay for Life, and the friend I made at last year’s relay is with me on that, which is great.  I find it is good to have  someone to talk to about your concerns.

My last scan in August showed no change, the suspected hemangioma’s on the right liver are still there, just watching for changes.  My Creatinine was down to 98.. and then later down to 95.. so am having another blood work in a few weeks so will see where it is at then.  I have my scan mid February, and then see my consultant in Halifax on March 5th.  Have decided to go see my own GP to get the report before seeing the consultant, so I don’t drive myself crazy with wondering. 

My husband has a birthday the following week, so since the 5th is a Friday, we are making a weekend break of the trip to Halifax.  Just hope that the news is good not to spoil the excitement over the weekend away.

We have had a busy year, working on a house we bought the summer of 2008, just before my diagnosis.. and over that winter all the pipes burst, while we pretended it didn’t exist. So this year we have been fixing up all the damage, and hoping to move fairly soon.  I found being busy stops me thinking too much about the cancer.  

We have a hoop-house (Polytunnel) to put up at the end of winter so we can start growing our own food again,  and a chicken house to build, and get a cockrel and some chickens to join us there.

I have an Uncle in Wales in his 70’s that had what seemed like symptoms of a stroke on New Year’s morning, then a week later a similar event.. and subsequently a scan showed a brain tumour, and that is out (80%) and now facing either chemo or radiation therapy. I feel very lucky to have had my kidney out at a point where the tumour was still encapsulated within the kidney.  I know we all deal with what is thrown at us, and find the strength to do so, but very glad that I have not had to face that yet.

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Posted under Gemma A S.

What am I talking about?  Well, I’d completely forgotten about this.  I was looking through some old photos this afternoon of my trip to San Francisco last year and I came across this gem.

Recognise it?

It’s actually the “National Marine Sanctuaries” logo … spookily similar to the James Whale Fund logo eh?  I found it by chance as I was running through “Crissy Fields” on a weekend jog.  It really struck me because not only is the Whale’s tail very similar but the colour scheme is so close as well.

Anyway, I thought I’d share it with everyone.

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Posted under Andy Thomas, General

I’ve got got admit in a bit of a spin at the moment because I still haven’t got any clarity about my current job which makes it very hard to plan out my immediate future.  I’m sure it’ll work itself all out in time so i’ll just have to ride it out and see what the outcome is.  In the scheme of things there are far worse problems to be dealing with, so it’s not a whinge.

On top of this I’ve only got about 5 weeks left before I’m due to do a double cross country ski marathon in Sweden called the Vassaloppet, it’s a 90km run up hill and down dale. Holidays are supposed to be relaxing chill out thing aren’t they?  what were we thinking? I was stone cold sober when I agreed to this so I’ve no-one to blame but myself…. so there’s no backing out. I did however have the common sense not to ask people to sponsor me for it this year because I dont rate my chances However if you do feel the urge to give me cash then I’d love some for the Arch to Arc cycle ride.

Vassaloppet Race in Sweden

To be frank I haven’t quite got over the injuries I sustained in Austria a few weeks ago when we did a 42km Marathon.

It was one heck of an experience and hasn’t put me off in any way although I’m not convinced I can get to the 90Km this year …. I’ll be happy if I do any over 50Km. If you are thinking of taking up a sport and want something that gives you a full body workout without the high impact of sports like running then this is the one for you.  Within a week we were all taken from virtually no experience on snow to a full blown marathon, and we were all different shapes and sizes.

Me in the Austrian Marathon

You maybe wondering why there are no other competitors around me in the picture above, sadly that’s because there weren’t any   I was very much on my own at the back, but we were so lucky with the weather and views.  I used to live in the French Alps, but I have to say the Dolomites are far more striking.

So my only chance to get fit with all these injuries is on my bike which I don’t think will be anywhere near enough.  I’m trying to do about 6hrs a week on it but I don’t find it’s doing enough, but at least it’s getting me ready for the Arch to Arc ride in June I guess.

So with all this going on I’m finding it hard to focus as much energy as I’d like on the Kidney Cancer stuff, but it’s got to be done.

As part of this I’ve re-branded the Kidney Cancer Bloggers site so it’s a little more tightly aligned to the James Whale Fund’s site …. Let me know if you agree.  As far as the Arch to Arc ride is concerned things are ticking along very well.  We have 14 riders signed up officially and quite a number that have confirmed they will do the same.  The great news is that we have raised over 50% of the target so far which I think for a first bash at this is a tremendous effort by one and all.  I wouldn’t have been able to get this off the ground if it hadn’t been for all the efforts of the team at the James Whale Fund, Nikki and Sarah have worked really hard on this, I feel so guilty…. Thanks!

What’s next on the awareness front for me? I’m not sure to be honest. There’s a big planning session towards the end of February and I suspect much will come out of that.  I’ve been offered some potential free development resource from an IT consultancy which could be useful, however I think we should hold off on executing on this until we have a clear direction of what we need.

I think in principal we have many of the pieces already in place, It’s just a case of consolidating it under one platform rather than the separate entities we have now.  I’m keen to reinvigorate the information provision side using a new CMS solution (Content Management System), having closed down Kidney Cancer Resource I think we’ve left a hole that needs to be filled, recapturing that readership is important.

Anyway, back to the web-site re-branding for me today.  Let me know if you can think of any ideas on the blog-site.

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Posted under Andy Thomas, General

With all the work that is going on within the James Whale Fund for Kidney Cancer I’m always increasingly surprised that we don’t see many more people signing up to the forum, blogs and web site.

In the UK around 7500 people per year are diagnosed with this hideous disease.  We know that sadly over half of that number die, which is a frightening statistic in its own right.  Of course a number of the surviving people will have been caught at an early enough stage to be considered as cured (not to tempt fate but I fall into this category), and of course under these circumstances many that fall into the “cured” category will want to try and put it behind them and move on.  This is totally understandable and there are days that I think I should maybe have done the same.  However I felt so strongly about the lack of awareness and information that I took action, and I don’t regret it.

Anyway, enough about me. So where are the others then? The remaining Kidney Cancer patients, the families and friends?

I ran The Kidney Cancer Resource for the best part of three years and managed to build up a daily readership of around 160.  My expectation was for this number to be closer to 1000+ given the annual increase in the community.  But it never happened.  Was I too impatient? Probably, but it did seem very odd to me that given the amount of information available in a standard (wiki) format that the user community wasn’t higher.

I did all I could to raise the sites visibility on search engines like google and got it onto page 1 in most cases, but boy did it take time and effort and an understanding of SEO tactics (Search Engine Optimisation).  By fine tuning these tactics the readership soon doubled, but to me it never warranted the level of work required.  That’s why it made sense to me to close down Kidney Cancer Resource and pile the energy into a single charity in the UK that’s focused on Kidney Cancer i.e. The James Whale Fund for Kidney Cancer.

My main issue is that collectively we’ve been creating multiple sites and organisations around the UK and by doing this all we’re doing is diluting what is already a small total UK readership.  To this extent I saw myself as part of the problem rather than being part of the solution.  So the decision was made to close down and re-focus my efforts.  I suspect I now need to spend more time on SEO tactics for the JWF to raise awareness and readership. But only if they want me to

Part 1 of this was to move the rolling news from KCR onto the James Whale Fund’s web-site.  I’ve been looking at the stats over the last few weeks, and yes there is a gentle increase in the number of site visits but still not enough.  My next step will be to speed up the re-direct from KCR to the James Whale Fund site, at the moment it’s set to 15 seconds and I reckon that might be putting people off.

As a slight aside, there is a Patient Advisory Group within the James Whale Fund (which I’m a part of) and one thing I know we’re always looking for is feedback on the web-site.  Is it delivering what people want? Is the information relevant? Was it easy to find? So, as we’re on this subject please feel free to contact me and let me know what you think. My e-mail address is amt@jameswhalefund.org. It’s important to get this feedback, be it positive or otherwise.

However, technology aside I’m still amazed that more Kidney Cancer patients in the UK are not driven to the fund. My conclusion is that ultimately greater public awareness is the only real way to make this happen.  We could make the James Whale Fund no 1 in the google search engine but that doesn’t always translate into a greater audience.  Yes of course it will have a natural increase, however not at the levels we’re seeking.

When I say awareness I really mean at the grass roots level of this disease i.e. when people are initially diagnosed by a consultant urologist or oncologist. Letting people know at the “get go” that there is help out there beyond just the medical.

I look at what the James Whale Fund offers – help that extends to patient support, campaigning for new drugs to be made available, help with appeals, fundraising, awareness, engagement with the medical community, specific training of nurses, information, patient days.

The list is endless and yet this isn’t visible to patients and carers.  If you want to know what’s available and what’s going on you’ve got to know how to search for it on the web.  This is just plain wrong and it’s one area where the hospitals/surgeries could be more pro-active.  Charities such as the James Whale Fund offer guidance packs that could be handed out to newly diagnosed patients. These should be given as a matter of course, it’s not so tough to get these packs approved by the medics.  Patients need an outlet beyond just our medical teams, it’s sometimes as valuable to be able to talk to people who share the same experiences.  Our consultants, Drs and nurses can’t be available 24 * 7.

This view was really drilled into me last night when a friend rang me to say that a work colleague of his was about to undergo surgery to remove a Kidney because they’d found a tumour, and could this colleague contact me if he needed to talk.  Well, of course the answer was yes but why wasn’t the information available to this person? A simple one page leaflet or pack would have lead him to our support group.

I do believe we need a strong web presence, as a geek I cannot deny this, however it’s time people were guided to this presence by professionals rather than having to stumble across it via some sort of random web search.  Until this time I suspect our daily readership will stay around the 100 – 200 level.

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Posted under Andy Thomas, General

I was asked for a comment about the NHS Constition today – had to give it some real thought  because I think the NHS Constitution is a great first step to recognising the real sense of ownership alot of patients feel towards the NHS. We feel passionately about our local Hospitals and the Clinicians & Nurses who look after us. But sometimes patients can feel lost because the NHS is such a huge machine with a life of it’s own, so many different organisations each with their own policies, guidelines and initiatives and it’s easy to feel individual patients to feel they don’t matter anymore.

As a survivor of Kidney Cancer, I have so much to thank the NHS for and I do so on a daily basis . Kidney cancer is a type of cancer which is difficult to treat and I’ve received all my treatment from the NHS which cared me during my illness. But I know other cancer patients who have been let down because “the system” is seen to be more important than the patient. The Constitution needs to be matched by actions at the coal face in GP surgeries, Hospitals and PCT’s and organisations like N I C E.

Patients need to know their views are valued – no more box ticking .

Ever  The Optimist  Eh ??  Rose Woodward  www.kidneycancersupportnetwork.co.uk

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Posted under Cancer Drugs, General, N.I.C.E., Rose Woodward

During the period that many hundreds of kidney Cancer patients were denied life extending drugs and died prematurely ( these kidney cancer drugs are readily availanble in other parts of the world on social welfare systems) the NHS spent £ 40,000,000.00 – YES 40 MILLION POUNDS – on solicitors and legal fees to two companies for “supporting” the NHS to draft contracts about their IT programmes”. !! The answer came in response to a question by Conservative shadow health minister Stephen O’Brien about the amount spent in legal fees for drafting contracts for the National programme for NHS IT in the Health Service. Health minister Mike O’Brien responded: “Between 1 April 2002 and 31 March 2009, the total fee paid to Allen & Overy amounted to £10,309,877 and to DLA Piper UK LLP £28,864,938, although Allen & Overy ceased to advise after 2006.” You couldn’t make it up ……. If this weren’t so desperately sad and tragic and cruel for kidney cancer patients and other cancer patients denied treatment their Clinicians want to precribe, it would be laughable – who decided this money was an effective use of NHS resources ??? I just to know how and why they had to spend this amount of NHS money which should be prioritised to front line care, on legal advice. Do we not employ enough civil servents that they can give the NHS legal advice. If we don’t and heaven knows why not ,then why not go out and employ someone ? you could hire a lot of IT lawyers for £40 million. It is an unbelievable sum – made worse by the fact we don’t even have a workable It system for the NHS and this sum doesn’t include the IT itself just the lawyers for advising about it. How did someone decide this was reasonable. Someone needs to get a grip of what is going on the NHS and fast, some of the managers are out of control !!

I’ve posted this on the Kidney cancer patient forum at www.kidneycancersupportnetwork.co.uk

Am I the only person who thinks this is totally out of order?

Rose Woodward -

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Posted under Cancer Drugs, General, Rose Woodward

I’ve been asked by a few people about the training regime they need to be following in order to complete the bike ride.  And it’s a fair question.

Well, we’ve been lucky enough to secure the support of a UK cycling magazine that have allowed us to distribute a training plan they recommend that gets people from zero to 100 miles in about 12 weeks.  So basically what I’m saying is …. There is time!!

They’ve suggested we modify the plan slightly so it fits our purposes but as it stands it’s a set of (I think) achievable goals each week with plenty of rest days.  We can’t distribute it just yet as they’ve agreed to send us copies of the whole magazine.  So be patient.

If any of you are following me on facebook you’ll see I’ve started cycling already.  Don’t think that this means you need to go hell for leather at the same pace…. I have 2 good reasons for needing to do it now rather than leaving it until later 1) I intend to cycle the route in the next couple of weeks to make sure it’s feasible, pleasant and to try and pick out some points of interest and 2) I have a 90K Cross-Country Ski marathon to try and complete in March and cycling is a great way of building up leg muscle and aerobic capacity without the impact of running.

Given it’s quite cold and dark at the moment there isn’t the desire for all of us to get the bike out of the garage, which makes it hard. My advice (for what it’s worth) is to get out when you can and just get used to being in the saddle, don’t worry too much about distance and pace at this stage (I’m not).  I always find that my first week back in the saddle consists of riding on alternative days until the saddle sore subsides (which it does I promise you).  After the first week I can then start focusing on building up the distance and speed.

If you’re a member of a gym and you don’t want to cycle on cold wet days (understandable) then spin classes are pretty good.  I may give them a go myself.  My partner (Jane) is a personal trainer so I’ll get her to see if she can put a few bits and pieces together.

Keep in mind that with the exception of day 1 from London to Dover (c.75 Miles) these are not huge daily distances.  The key will be as we get closer to June is to make sure that you go out on consecutive training days to ensure you’re capable of doing one day after another. Anyway this will all be part of the plan.

I’ll say again as I’ve said a few times, this is not a race, so we wont all be tearing off all over the place.  It’s the first time the James Whale Fund for Kidney Cancer has run the event and to that end this year will be a “pathfinder” which is why we’re keeping it to around 20 people.   It should be a great mix of people from all over the country and a chance to make some new friends.  We even have one person from Houston Texas flying over to ride with us!

As part of the training pack we’ll also be sending out a registration form to all the entrants so we have everyone’s details and requirements along with the terms and conditions.

And now for the really great news!  We’ve raised over 50% of the money so far, which is just incredible!   Upwards and onwards and thanks to everyone’s efforts.

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Posted under Andy Thomas, Arch To Arc 2010