Kidney Cancer Bloggers Have your Say

This weekend was nearly proving to be another non-weekend.. but some of that with using Hurricane Hanna’s tail end might have been an issue. 

It might help if I say here that we live in a house in town (Port Hawkesbury), but we recently bought a house in Melford about 20 minutes out of town with 5 acres of land. We are going to be working on it, and aim to move in next Spring if not before. Of course that was before the latest news, which probably means it will defnitely be next Spring.

On the basis that today it was going to rain a lot, and we were going to stay home yesterday, and then go up to the other house today, so we had our Sunday Roast yesterday. So having watched the Grand Prix at Spa (big fan, excellent race btw) first thing, we then went up to the house.. and I painted a pretend brick wall a strange darker shade of green, and the other three walls a lighter green.. and feel much better for achieveing that.. as in completing it.  Jerry was continuing his work on  the wood floors, which is proving quite hard to get down to the wood.  All this gives us a sense of normality if nothing else. Having said that I aquired a muscle pain in my right thigh, and found that my leg almost gave way under me putting weight on it sometimes.  And it doesn’t seem to be going away, but this task here does not require standing, so I am quite fine.

Finding the Kidney Cancer Resource site and forum, and the Kidney Cancer Canada site and forum have been a great help to me. Being able to read about the challenges other people have been through, and the support they can give when you are just coming to terms with it all is pretty up there for me right now.

I have been spending time finding out about what may be ahead of me, checking out who my consultant (Dr Joseph Lawen) in Halifax is, what he specialises in – Transplantation and Laparascopic Surgery. I have been given the name of an Oncolgist there in Halifax too, even been told what sort of questions to ask, and if he doesn’t have the answer, to ask for a referral to the Oncologist.

I also keep re-reading my reports, and try to see the positive side of things, the fact that by all accounts it is contained withing the Right Kidney, and has not spread.  I think it all hangs on this 7mm something on the liver being totally unrelated.

So this week, will be the count down to Friday’s appointment.  We drive a truck, which will guzzle two tank fulls of gas going to Halifax and back, so we are going to hire a small car for the day, even with the hire cost, it will save us money.

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Posted under Gemma A S.

This was written as a followup on the KCR site on 8th September, 08.

I pretty much had a non-weekend last weekend, and it was a 3-day weekend, and pretty much wasted on me. Spent my time right here, delving for more information, and frightening myself. I was then talking to someone at work, about it being the not really knowing, was the hard part, and they suggested I go back to my own Dr, to just chat, and ask for more information from the report.

So on Thursday, I went back to see him, and he even gave me a copy of the Ultrasound and CT Scan reports. He said that the way the report reads, it is pretty conclusive that it is RCC, but that the good news is that it is contained within the Kidney. The spleen, adrenals, pancreas, lung bases are clean, and no vascular invasion. . There is however a 7mm liver lesion, which verbatim says ‘ may represent an hemangioma although metastases cannot be excluded. An MRI may be useful for further assessment’.

The Dr said they would chase up for my referral appointment, and I now have that, next Friday 12th September, at 2:10pm. I have been told by the Dr’s office that this is just a consultation with the surgeon, where I come in for the appointment and go home afterwards. It was almost amusing the way the lady spoke to me, but they must get people who almost think that this is your OR date, and need it spelled out to them. It is a stressful time.

I am doing better psychologically, but still have my moments where crying is the only way to deal with how frightening all this is. Other times, I am so in control, and planning for not being at work, making sure that everything is in place so that I do get some money while I am off. I have put the wheels in motion to upgrade my medical health insurance to Enhanced, which will cover 100% of any prescriptions. I had looked into who helps when your medical cover does not cover enough, and have found a man who can. So really thinking of the practical things, so save any panic later.

My husband and I have talked and talked through what is ahead of us, and I think accepting that the surgey is inevitable has been a big help. We are now dealing with practicalites – like a half door on the bedroom, that give the cats access, but will keep our 2 dogs out. Currently, our two dogs live a life of luxury, but have a tough lesson ahead, but I don’t want to keep the cats out, as they will be comforting to have next to me.

My sister in Toronto has arranged for us to visit her for Thanksgiving 10th – 13th October, so sadly one of my questions to the surgeon will be, can we do this on the 14th? but as the Dr’s office said, he ultimately decides how quickly the surgery has to be done, and I may have to forget going away at all.

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Posted under Gemma A S.

This was my blog started on the KCR site on 2nd September, 08

My name is Gemma Angharad Shoebridge, I am 52, am from Wales, but now live in Nova Scotia, on Cape Breton Island. I am married to Jerry, who is from Bristol, and we have been together almost 15 years. I have one sister and she lives in Toronto.

I have gone from having Pneumonia in March 2006, and it seems as a result of that have now been diagnozed with PSVT, Paroximal Supraventricular Tachycardia.. a not too serious heart Arhythmia which I now take medication for.. this was in the June/July just gone. Due to my making my oedema the main priority with my heart specialist, as if everything begins and ends with what the reading on the scales reads.. prior to final diagnosis he arranged for an Ultrasound. I had to wait a few months for that, which was a week ago, on 25th August,08, when I discovered that it was a Kidney and bladder ultrasound I was having, I suppose the drinking a litre of water before hand should have been a clue. While in the washroom (the loo), the technician disappeared and then came back after what seemed a long time, and said to save us having to drive all the way back again, she had checked with the heart specialist if he wanted them to do anything else while I was there.. so there I was having a CT scan. Everyone looked after me wonderfully, and off home we toddled, thinking they had saved us a journey back and forth to the hospital.

Following on from that, Wednesday morning, 27th August, Jerry tells me that Dr Ben.. my GP, had called the day before wanting to touch base with me. So got to work and called him, and he quietly tells me that he wants to touch base with me, to make sure that I am being taken care of, to deal with the suspected Kidney tumour – and that is how I found out what my current situation is. I was then due to go in to see him the next afternoon, but after calling Jerry to come get me, so I could tell him, I then called the Dr’s office again, to say I had to see him that day. Subsequently I had the report read to me.. that there is a large solid mass on my right kidney, and a 7mm something on my liver. He had unfortunately thought that I had seen the specialist on Monday, and didn’t realise that he dropped the bomb over the phone.

So now I have been referred to Halifax, and have 2-3 weeks to wait for that appointment. Having really told everyone that needed to know, except my mother in Wales who is 84, and don’t really want to tell her until I have a definitive answer. 

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Posted under Gemma A S.

Professor Waxman is a hero to Kidney Cancer Patients – this is why…………..

We need cancer drugs. NICE must go. The Government’s penny-pinching body has made yet another stupid decision.

Our Government has been a fabulous custodian of healthcare. Public memory is short and many of us have forgotten how difficult things were for patients before 1997. During the past decade we have seen a doubling in NHS spending. As a result, patients don’t have to wait for scans, are seen in hospitals within a reasonable time, and surgical waiting lists are relatively short.

But there are areas of healthcare where things have gone badly wrong, where wrong meets bad, becomes worse, and then spirals to appalling, and these areas are approached through the bloodstained portals of the National Institute for Health and Clinical Excellence (NICE).

This week’s NICE announcement on treating kidney cancer, a preliminary opinion about the value of new drugs, has sent doctors into apoplexy. Kidney cancer affects approximately 7,500 people in the UK each year, and there are 2,500 deaths. We have recently begun to understand the molecular biology of kidney cancer, and to know of its specific characteristics. Understanding these characteristics allows us to design treatments that exploit the differences between kidney cancer cells and normal cells. As a result, we have wonderful new treatments that double life expectancy in this condition.

NICE has evaluated these four new drugs for kidney cancer and indicated that these drugs will not be recommended for use in patients. This is against all sense, and contrary to the situation in the rest of Europe and in the United States, where these drugs are available. NICE has made its decision on the basis of an arcane and extraordinarily complex calculation which relates the benefit of treatment with these new drugs to a treatment that is comparatively ineffective.

So, a fabulous new treatment has been compared to junk, and the costing for the new treatment rationed up to give a conclusion on costs, which is absolute nonsense (and here I underplay the argument against the decision). In its defence, NICE might feel it has a moral responsibility to save money. But it is a short-sighted morality if the sums involved – as they are in the case of kidney cancer treatments – are paltry.

In the past seven years there have been 407 NICE guidances on cancer. It would be an understatement to remark that virtually all of them have been controversial. Many guidances have been stomped on by judicial review or overruled by health ministers. Now, with this latest decision NICE has told us all how irrelevant it is and why it should be abolished.

NICE was set up in 1999 with a brief to provide clinical guidelines and technology assessments for England and Wales (there is a separate panel for Scotland). But there is no equivalent of it in any other European country, or in the US. In Europe and the US, decisions about the value of treatment are made at the time of licensing of the drug, through either the European Medicines Agency or the American Food and Drug Administration. In Europe and America squabbles about costs are ironed out at this stage, after negotiations between pharmaceutical companies and governments.

NICE is slow about making decisions. It takes two or three years to give its judgment after a drug has been licensed. Input into NICE is made through the Department of Health, by health professionals, patients and pharmaceutical companies. NICE’s timetable for the review of cancer drugs is dictated by the Department of Health. The department tells NICE when to start the review process and when to conclude its review. The NICE committees are patrolled and staffed by health economists – with minority involvement by clinicians – who give a view as to the value of a drug or treatment in the context of a QALY, which is a “year of quality added life”. To put this in simple terms, if a drug is reasonably effective, and also reasonably cheap, then NICE concludes that it can recommend that the drug is used by the community.

But, before the “community” gets to use the drug, there is a second rank of decision-making. Primary care trusts, which are not legally obliged to follow NICE advice, are local area committees that make decisions on how the NHS budget is spent in their part of the country. There are 149 trusts in England and Wales issuing decisions about whether or not it is reasonable to prescribe a drug within its domain. So if the administrators of the PCTs for Bolton, Bognor and Bournemouth are all able to make independent decisions as to whether to follow NICE rulings, why do we need NICE?

Now with this absurd and arrogant decision on the value of drugs for kidney cancer, NICE has told us that it is absurd, arrogant and unnecessary. Our country should no longer underwrite the costs of NICE, which are currently at £30 million a year, and due to increase. This is a sum that could usefully be spent on providing drugs for cancer patients in a country where we spend less on cancer treatments than on drugs for constipation – in a country where, as a result of NICE’s appalling and uneducated interventions, we spend less than two thirds of the European average on drug treatments for our cancer patients.
……….Jonathan Waxman

Jonathan Waxman is Professor of Oncology at Imperial College, London

Thank you Professor Waxman and thanks to all the other Leading Oncologists and Clinicians who have put their heads above the parapet and called this decision by N I C E flawed and cruel and inhumane.

In my book they are renamed ….N I C E = The National Institute for Cost Effectiveness

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Posted under Avastin, Nexavar, Rose Woodward, Sutent, Torisel

The demonstration at the NICE HQ was a fantastic success, nobody can deny that. The back-pedalling from NICE since then bears testament to that and a great debt of thanks goes to those who made it happen.

To make the announcement about the eye drug on the same day as the demonstration shows just how low these people are prepared to go, they knew we were coming, we made no secret of it. They were even sniffing around the KCR website the day before to gather information on it. (In case you’re wondering how I know that www.sitemeter.com lets me see what IP Address’ are visiting the site and what pages they are viewing, I clearly can’t see individaul names but I can see network providers and larger organisations, and on that day it said N.I.C.E. … they came on 3 times).

The Eye drug announcement was just another one of those heartless and insensitive actions we’ve come to expect from a bunch of people who announce they have a £1.75 billion surplus in the NHS and yet refuse to let patients have the drugs they need, be they cancer victims or otherwise. Maybe they get paid bonus’ based on how much they can come in under budget?……..no, that’s just too cynical …… isn’t it? Also if they’ve had plans to readjust the QALY calculations then why did they wait to make that announcement? and why do they still not publish the algorithm for everyone to see? Theyr’e not the only people to understand comlpex statistics.

It’s all gone very quite, and I reckon they’re very thankfull for it.

I suspect we still need to tread carefully and ensure that we keep the pressure on. NICE have made “strange” decisions before and there’s nothing to say that they wont still turn around and say no to the drugs. We need to be on our guard. I’d like to see them make statements around any new drugs that come on the market that have the blessing of the experts (i.e. the consultants), I want to see statements that mean this will never happen again, and that never again will cancer patients be put under such extreme stress.

I believe that the real test of their intentions will be shown with the results of the next few PCT appeals. If they all go through on the nod then great, but I would hazard a guess that wont be the case. If I was a betting man I would expect them to now think that they’ve lulled us into a false sense of security only to deal a bitter blow next year.

Let’s keep the pressure on and keep on writing to them and the media and let them know that we’ve not forgotten. We all know that if we’d all sat back and done nothing we wouldn’t be in a position now where they’re back-peddaling like this.

I’m going to try and insist on a direct reply from my local MP. I cc’d her (Claire Ward) on my letter to Andrew Dillon. Her original response to another letter I wrote was weak. Although Dillon replied I’ve heard nothing from her. I also wasn’t happy with his reply to me so I’ll also be asking for clearer responses to some of the questions I gave. I’ll publish these as and when I get round to it.

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Posted under Andy Thomas, Oxford Support Group Demonstration 27-Aug-08

So why create this blog?

Well, the feedback I’ve been getting recently has made me understand that the blog section in KCR is too complex and a bit fiddly, and to be honest plain indigestible. I have to agree the implementation in the WIKI is not ideal.

So here I hope is the solution, WordPress. This is pretty much the standard when it comes to blogging software. I was going to tag it onto KCR but on retrospect they are two different animals therefore I’ve created a separate host.

I do hope you’ll like it and take the opportunity to get stuck in and have your say. I’ve set out some very basic “Rules” which you can find in the “About” page and if you need help on how to use a blog e.g. how to create post then the best thing to do is to read the links in the left hand menu section (Documentation and Help) which should tell you all you need to know.

So, if you want to start a new blog then simply register and send an email and you’ll be setup as an “author”

Anyway, happy blogging!!

Andy

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Posted under Welcome