Brave Mark says
“I won’t be beaten”

By Suzy Talbot

suzytalbot@trinitysouth.co.uk

A CANCER sufferer who once could not make it up two flights of stairs is now set to take on the challenge of the Three Peaks.
Mark Franklin, 39 was diagnosed with kidney cancer in March 2005 and by May 2006 it had spread to his lungs, lymph nodes, chest, liver and ribs. When he was told he was terminally ill, he was given only six months to live.
Mr Franklin who lives in Woodley Hill, Chesham said: ”I believe if I had been told this at the time of diagnosis I would have gone down in a blaze of glory doing everything.

“I was told there was no treatment in the world and nothing left could be done for me other than trying to ease the symptoms."
"But I refused to accept it.”

Cancer of the kidney rarely responds to chemotherapy or radiotherapy which is why Mr. Franklin’s diagnosis was terminal.
After much research by his family they found a clinical trail involving a drug called Sutent which had showed positive results on advanced kidney cancer and Mr. Franklin was accepted onto it in June last year.

Now at the beginning of 2007 he has beaten the prognosis of six months and has gone from a man who could not make it
up the stairs to one that is determined to raise money by climbing Scafell Pike, Ben Nevis and Mount Snowdon.
He will be joined by friends Richard Franks and Damien White on the trip which they hope to make in May.
He believes he can raise £40,000 for Kidney Cancer UK, Hospice of St.Francis, Macmillan nurses and Guy’s Hospital
in London.

Former employers Chessbury Estates in High Street, Chesham, have agreed to sell space on the back of the information packs for houses to businesses to help him reach his target. It will also donate £100 for each property sold during 2007.
Mr Franklin is now training at the gym and regularly swimming and cycling.

Alongside this he is also battling the government to allow more drugs to be available for cancer sufferers on the NHS and encouraging others who are given the news that there is nothing more that can be done for them not to give up hope.
He said: ”I have no doubt that I am alive today due to this drug and seven months into the trial, I lead a completely normal life.”
The other 1,500 people who were trialing Sutent found the drug stopped having an effect after a year and while Mr. Franklin is hopeful he will be different, he is researching other trails he can accepted on to.

“My diagnosis is still terminal but I refuse to accept it and this is why I want to try these drugs,” he said.
“There is the potential to get the majority of cases of kidney cancer stabilised indefinitely.
”Denying us access to these drugs may well be the difference between life and death.

If you would like to support Mr. Franklin’s Three Peak’s Challenge, you can donate @ Chessbury’s Estate Agents or Sovereign Financial Services, The Broadway Chesham.

You can also e-mail Mr Franklin at mark.franklin63@ntlworld.com or call him on 07787 716464

Kidney cancer victims denied
‘wonder drugs’
D
Daniel Foggo and Sarah-Kate Templeton

Two new “wonder drugs” with the potential to prolong the lives of thousands of kidney cancer sufferers are being denied to National Health Service patients because they are too expensive.
The drugs, Sutent and Nexavar have been shown to shrink tumours dramatically, with some disappearing altogether. Both have been licensed for use in Britain but the NHS has so far declined to issue guidance that trusts should fund the drugs.
Without such guidelines, patients are dependant on the judgment of individual NHS trusts deciding whether or not they can afford the treatments, which costs about £2,500 a month. Some cancer sufferers have been forced to sell their houses or cash in pension schemes to pay for the treatment.

The situation has been likened by the doctors to the furor over Hereceptin. The breast cancer drug was not routinely prescribed until August last year, following intervention by Patricia Hewett, the health secretary.
Nicholas James, consultant in clinical oncology at Queen Elizabeth Hospital, Birmingham, said of Nexavar: “Patients with this cancer tend to die quite quickly but I know from my own patients who were on the trail how well this drug works. They are still alive two years later.”

Despite the enthusiasm of doctors, the National Institute for Health and Clinical Excellence, which draws up the NHS’s policies on whether trusts should fund medicines, has so far set no timetable for assessing the two kidney cancer drugs.
As a result, patients can obtain the drugs only through private doctor or by asking their GP to plead their case individually to primary care trusts (PCTs).

Kidney cancer, which is diagnosed in about 6,600 people each year, has a death rate of more than 50% and is difficult to treat, with both radiotherapy and chemotherapy of little use. Until the development of Sutent and Nexavar, which both work on the principal of starving tumours of their blood supply, the only viable treatment was the drug interferon alpha.But in trails of Sutent it was shown to more than double the time tumours remained static in size compaired with interferon. Naxavar had similar results.

Professor Robert Hawkins, an oncologist at Christie hospital in Manchester, who conducted a recent sutent trail, said “We have had a couple of patients where the cancer seems to have disappeared altogether.”
At least one patient – who served in the RAF – is seeking judicial review over the drug. It was similar action over Herceptin that contributed to it’s approval as an NHS drug.

Janine Handrick, 35, a travel adviser and mother of five-year-old Madison, is one patient who, with her GP, managed to persuade her PCT in December. “I was diagnosed with cancer last March when they found lumps on my right kidney and in my coccyx,” she said. They removed my kidney but it had spread to my bones and lungs. When the nurse told me they had found tumours, I asked if I would die and she just nodded.

“When my doctor told me they had decided to give Sutent to me, I was ecstatic, although I won’t know how effective it is until I have a scan in another six weeks.”

Mark Franklin, 39, a builder from Buckinghamshire, was also facing death when he was included in a trial of Sutent last June. The cancer had spread from one kidney, which was removed, to his ribs, lungs, back and other kidney. Now his tumours have shrunk dramatically and this May he plans to climb Britain’s three highest mountains.

“There is no doubt I would be dead now if it wasn’t for the trial,” said Franklin.
”Not making this drug available to everyone is criminal.”

He is one of almost 1,000 signatories so far to an e-petition on the 10 Downing Street website calling on the prime minister to make Sutent and Nexavar freely available.

A spokesman for Kidney Cancer UK said: “These drugs are available in much of Europe and the US but here it is a postcode lottery. We are taking legal advice on whether PCTs can refuse to prescribe these drugs because of the cost.”  

“New wonder drug
could be our only hope”

Kidney cancer patients in the region are being denied a promising new drug called Sutent. Health editor Barry Nelson talked to a man who is living proof of how Sutent can transform patient’s lives

MARK FRANKLIN is convinced he would have died had it not been for the development of a new generation of cancer drugs.
In March 2005, the cheerful, sporty builder was taken to hospital after repeatedly collapsing.
“I kept keeling over and I lost two stone in weight,” said Mr. Franklin, who lives in Chesham, Buckinghamshire.
Doctors diagnosed kidney cancer, a condition which is difficult to treat and which effects more than 6,000 people a year.
He said “By November 2005, it had become advanced. They gave me a drug called Interferon, but it didn’t work for me. That’s when they told me that I was going to die.”

His consultant gave him six months to live as the disease spread into his liver, lungs, lymph nodes, chest and ribs. At that stage he was so ill he could hardly make it up the stairs of his home.
“I had to have a seat on the landing so I could have a rest,” said Mr. Franklin, now 39.
By pure chance a friend of a friend heard of a clinical trial involving a new drug, called Sutent, at Guy’s Hospital in London.
Sutent works by blocking an enzyme called tyrosine kinase, which instructs cells to multiply and which, in some cancers, is
over-active. It also targets a protein that promotes the growth of blood vessels connected to the tumour by blocking the process, called angiogenesis. In this way, tumours can be starved of nutrients. While doctors do not see Sutent as a cure, there is strong evidence that it prevents the disease progressing and gives the patient a longer life.
The effect of the new treatment on Mr. Franklin was astonishing.

Eight months after his treatment began, scans confirmed that his secondary tumour had greatly reduced.
He said ”I now actually feel better than I have for years and to prove the point, I am currently training to complete the Three Peaks Challenge in May, which involves climbing the highest mountains in England, Scotland and Wales.”
Training involves running, swimming and cycling 16km every other day.

Mr. Franklin is horrified that such an effective drug is not available on the NHS – even cancer specialists across Europe and the US routinely prescribe it. That is why he has pledged to support the Kidney Cancer UK charity in its efforts to increase access to Sutent and a similar drug, called Nexavar.

Mr. Franklin got in touch with the Northern Echo when he saw last Monday’s exclusive story about the plight of the Devonport family, from Chilton, near Newton Acliffe, County Durham, on the internet. He said he wanted the County Durham family to know what a difference Sutent can make- and to offer his support. In December, kidney cancer patient Kathleen Devonport was told by her consultant at Bishop Auckland General Hospital that the drug she was taking, Interferon, was no longer working and the disease was progressing. The consultatnt said the only drug that had a chance of prolonging her life was Sutent, but that was not available on the NHS. Mrs Davenport’s husband of 42 years, Ray was disgusted and angry.
He said: “You go through life paying into the NHS and when you need it they don’t want to know.”
The couple who have three children and six grandchildren, have written to County Durham Primary Care Trust (PCT) asking for their application for Sutent to be considered.

Meanwhile, the couple are working out how long their life savings will last, paying £3,000 a month.
In Blyth, on the Northumberland coast, Ken and Judith Potts are in an even worse position. They have made two appeals for Sutent to their local PCT, but both were turned down. Mrs. Potts also feels let down by the NHS.
She said: ”Ken has paid into the system for nearly 40 years. It seems it is absolutely fine until you are ill and you need it, but then it’s not there for you.”

In Mr.Pott’s case, the cancer has spread into his brain and lungs. Both couples plan to use the NCRN document as leverage to try to get Sutent on the NHS, but feel they will need wider support.
“This has got to become the standard drug.”
“Why should people in America and Europe get it and not here in England ?” said Mrs. Potts.
“People have to get behind this cause in the same way they got behind the people who fought for the breast cancer
drug Herceptin.

The cost of staying alive

In January 2006, kidney cancer patient Mark Franklin was sent home to die. Five months later, with the disease spreading through his body, he was placed on a clinical trial of a new drug called Sutent.

Now he is looking forward to climbing Britain’s three highest peaks – Ben Nevis, Scafell Pike and Snowdon. “I’m living proof the drug works,” says Mark, 39, a builder from Buckinghamshire. “I was written off and told nothing could be done but I never gave up hope. I’m well enough to climb three mountains when I couldn’t climb a flight of stairs nine months ago.”

Sutent works by stopping the signals that enable cancer cells to grow and divide and starves the blood supply to tumours. Widely available in Europe and the US, it has given new hope to kidney cancer sufferers who do not respond to chemo or radiotherapy. However, only around 50 of the 6,700 patients diagnosed with kidney cancer in the UK have access to the drug mostly, like Mark, through clinical trials or by paying privately – or in rare cases – by persuading their local authority to fund it.

It costs up to £40,000 per year, which is why some people are forced to sell their homes to pay for it. Individual NHS Trusts are reluctant to foot the huge bill because no guidelines have been issued by the National Institute for Health and Clinical Excellence (NICE) to prove conclusively that it works.

Nick Adams is just 24. Last November he lay dying in a hospice, his body ravaged by kidney cancer. Then his mother Sandi heard of Sutent, which her local NHS Trust refused to pay for. She rallied her local community in Skegness, Lincolnshire, to raise the £3,500- a-month needed for the treatment.

Now in his second month on the drug, Nick is back on his feet and living a relatively normal life. Yet the Lincolnshire Primary Care Trust is still refusing to pay for the drug, saying it is not proven to work.

“What happened to Nick is nothing short of a miracle,” says Sandi. “One day he was bedridden, couldn’t eat or take himself to the toilet. Nine days after taking Sutent, he was back on his feet and eating his first meal in over 10 weeks.

“It is so unfair that the NHS won’t pay for this drug. If I had breast cancer, the NHS would be spending money on chemotherapy or radiotherapy but those treatments don’t work on kidney cancer patients, to the money saved should be spent on Sutent.”

Later this month, when the results of Nick’s next CT scan come through, the family is to appeal against the PCT’s decision. “I lie awake night after night worrying about where the money will come from,” she says.

A Lincolnshire PCT spokesman says: ”As Sutent is a new drug it is not routinely funded. We consider any requests to fund this drug on a named patient basis, based on the published evidence of effectiveness and cost-effectiveness and the patient’s individual circumstances.”

Although the drug was licensed for use as a first-line cancer treatment in January this year, without NICE approval it is not deemed cost-effective. But NICE says it has not been asked to appraise either Sutent or Nexavar, another new kidney-cancer drug, by the Department of Health.

“There is no ban on prescribing any drug within its licensed indications in the absence of NICE guidance,” a spokesman said.
“Where NICE guidance is not available, licensed drugs and devices are assessed at a local level.”

With individual trusts left to decide for themselves, there is a ‘postcode lottery,’ which has been likened to last year’s scandal over the breast cancer drug Herceptin.

The Department of Health says: “The drug is licensed and patients should not be refused the supply because NICE guidelines does not exist. Trusts should consider funding if recommended by the clinician and in the light of existing evidence.”

Pat Hanlon, a trustee for Kidney cancer UK, says Sutent and Nexavar enable patients to live up to two or more years longer. The charity has posted more than 1,200 signatories on the Downing Street website called for them to be made available on the NHS. “These new drugs bring new hope to thousands and we are now seeking legal advice as to whether we have a case against PCTs who deny treatment,” Mr Hanlon says.

Some patients who fight back are winning. Keith Ditchfield, 53, from Stonyhurst, Lancashire, has just won his appeal on his fourth attempt to get Nexavar on the NHS. He was paying £3,000 a month for the drug privately as East Lancashire PCT refused to fund it.

“PCTs are looking for reasons not to fund these drugs because of cost,” he says. “The evidence is there that the drugs work and if you fight your corner long enough, they run out of excuses.”

• To make a donation to Nicks Adam’s family call Sandi on 01754 763 902
• To contact Kidney cancer UK visit kcuk.org  

Giving hope to others

Mark Franklin, Kidney Cancer UK member

My name is Mark Franklin and in March 2005, I was diagnosed with kidney cancer when an 8cm tumour was discovered in my left kidney. This kidney was removed in April 2005 along with my lower rib. Later in June, after the next scan, I was given the all clear although the so-called experts had managed to miss a 2cm tumour in my remaining kidney.

After my next scan in November 2005, the tumour had grown to 4cm and was found along with disease in the lungs. I was told the disease was now terminal and I later discovered the average survival time was six months. As chemotherapy and radiotherapy have little effect on advanced kidney cancer, I was told the only possibility of slowing the disease was through an immunotherapy drug called interferon. This involved injecting myself every other day and came with harsh side effects. I started the injections in December and unfortunately, the next scan in February showed that the drug had not worked and the cancer had spread further. I was taken off the Interferon and was told there was now nothing left that could be done for me, other than trying to ease the symptoms. At this stage, I asked if there was any treatment anywhere in the world or at any cost and was again informed there was nothing. Unwilling to accept this diagnosis and with the help of my family, we searched for
other treatments.

By May 2006, the cancer was in my remaining kidney, lungs, chest, lymph nodes, liver and ribs. There was a 17cm x 10cm lump on my back. There was also two and a half litres of fluid crushing my right lung and the tumours had a mass of 56 square cm. I now had great difficulty even climbing a flight of stairs and was taking 60mg of morphine a day to help cope with the pain.

Due to the cancer attacking my ribs, my blood levels showed very high levels of calcium and this was a danger to my heart, so,
I was admitted to hospital.

Whilst there, I had intravenous drugs for the high calcium, a blood transfusion and my chest drained. At this time, we found news about a clinical trial involving a drug called Sutent, which, although had only been tried on 1500 people around the world, was showing positive results on advanced kidney cancer and luckily, I was accepted onto this trial.

At the end of June, I was again rushed by ambulance to hospital with a temperature of 105 and very low blood pressure and this turned out to be the side effects of the new drug working so well.

At present, I am responding very well to this new treatment, the tumours are shrinking (square mass of 12cm) my blood levels are very good and the lump has gone. The latest scan made no mention of spread to the liver or ribs and the side effects are minimal. I have no doubt, whatsoever, that I am alive today due to this drug and 7 months into this trial, I lead a completely normal life, yet although Sutent has been granted a licence to be sold privately, NICE are not even considering assessing this drug for use by the NHS.

I actually feel better than I have for years and to prove this point, I am currently training to complete the Three Peaks Challenge in May which involves climbing the highest mountains in England, Scotland and Wales (Scafell Pike, Ben Nevis and Mount Snowdon). Training at present involves running, swimming and cycling 16km every other day. On the other days, I play golf, go to Spurs most weekends for the football and research the latest developments in the fight against this disease. It is this research that I would like to share with you.

The very first thing that I want to do, is give back the hope that some Oncologists are so quick to take away and to prove why you must never give up fighting. When I had my kidney removed, I was told I would be in hospital for 7 days. I told them I would be out in 5! After the operation, the surgeon told me that they had also removed a rib and caught my spleen with the scalpel. The chance of saving my spleen had only been 2-3% but although I had lost a lot of blood, my spleen stopped bleeding and they did not have to remove it, they said I would be in hospital for 10 days….. I still got out in 5!

Later in the year, when my cancer had become advanced, there was a day when my phone calls were not being returned and within half an hour, I had driven to and was in the waiting room, prepared to wait all day if necessary. When my Oncologist told me my cancer was terminal, he would not say how long he thought that I had because I had shown how much I was willing to fight. It was only months later I found out that the average survival time for my condition was 6 months and I believe that if I had been told this at the time of diagnosis, I would have gone down I a blaze of glory, doing everything that was bad for me and I would not be here today.

In fact, research shows that when people are given a time limit, the majority of people only survive that long as their mind and body expect nothing else.

I now know there is much research going on and there is every reason to be optimistic and I believe that if not already the case, we are getting closer and closer to the possibility of the majority of RCC cases being stabilised. This can be backed up by the message at the 2006 Kidney Cancer Symposium which concluded that with the potential for sequential and/or combination therapy, progression free survival is now considered an acceptable outcome. This is consistent with the general movement in cancer therapies to treat cancer as a chronic disease, much as diabetes and heart disease are treated. This is the reason we need to raise awareness and make sure Sutent and Sorafenib are available to everybody and this is a point that I will
raise later.

What has happened, as I understand it, is that medical research has found a VHL gene consistent with kidney cancer that has now opened up a whole new world of research in a disease that was previously very hard to treat. Since I was told there was nothing in the world available, I have found well over 50 different trails regarding kidney cancer and I find new ones almost weekly, some showing a lot of promise. (In fact, I have today received a list of 51 trials that I need to investigate.) As well as Sutent, Sorafenib and a drug called Temsirolimus, have both shown that they have the ability to prolong progression free survival and the statistics for these drugs will only improve with more people gaining access to them. There is also Pazopanib, made by Glaxosmithkline, which in trials, is showing as much promise as Sutent with less side effects. Also,  although not yet approved for kidney cancer, Avastin is also showing promise in keeping the cancer in check. So, with these drugs alone, there is the potential possibility, in my opinion, of sequential therapy which involves changing drugs when the body becomes resistant and increasing PFS for we don’t know how long. Another possibility is a drug holiday, so when the cancer builds a resistance, you take a break for a couple of months from the drug that you are taking. Then, you start taking it again. Something I know has been tried with some success.

Another area of research showing promise, is in cancer vaccines where a vaccine called Trovax is sounding very promising indeed and another HSPPC-96 (oncophase) is being fast tracked in the USA. Unlike flu jabs, these vaccines are designed to work even though you already have the disease and a gene is attached to a harmless virus which you are injected and then, as your immune system attacks the harmless virus, it also takes on the gene designed to attack the cancer. There are many more drugs showing promise and lots of other areas of research such as allogenic transplant (stem cell), T reg depletion, HIFU treatment, cryotherapy, microwave and radiowave treatments. There is also a lot of alternative treatments needing investigation that are being used across Europe.

A couple of other things that sometimes we are not told about, in my opinion, is the spontaneous remission and Interlukin-2. About 4% of RCC for no obvious reason, just go into remission. I know that isn’t much but it is still 1 in 25. The other point, is Interlukin-2 (il-2), this has been the first choice treatment in the USA for a number of years and has actually cured people of RCC, it does come with harsh side effects, but as it can cure, it is definitely an option I think we should be offered. Something else that we need to bear in mind is not to take too much notice of statistics. Sometimes, statistics are a couple of years old and with the new drugs available, are sometimes meaningless.

As you can see, there really is every reason to try and remain optimistic and I feel that there is the potential to eventually get the majority of cases stabilized indefinitely. With this in mind, we really must campaign to get access to these new drugs. A lot of information comes from different doctors and oncologists and they are good people… it must be very hard for them working with their hands tied behind their backs.

NICE needs to realize that it is not just about giving us more time any more. Denying us access to these drugs may well be the difference between life and death and in my opinion; we are so close to getting this illness under control.

What price can you put on someone’s life and anyway, as kidney cancer does not respond to radio or chemotherapy, the money saved alone there could pay for these new drugs! We also need to ask the Government why the money isn’t available to NICE and why people are being allowed to die. I feel if they treated animals like this, there would be rioting on the streets.

Also, how can the drug companies ask for so much money for these drugs? If they were cheaper, then surely would they not be used more thereby getting better results and in turn, increase the demand? Something else people keep mentioning is you hear so much about breast cancer and Herceptin, yet nothing about the plight of kidney cancer patients. Well, I think it shows just what a great job the girls have done to raise awareness and are a shining example of what we should all try and do as well!

Anyway, I hope that this information gives back some hope to the people sharing my position. I continually come across barriers and areas of information that I think… WOW… that is so wrong, why doesn’t someone do something about it. I then realize I can’t expect and hope somebody else will change it unless I do myself. It is our life and our battle, so the quicker we fight to do something about it, the sooner we will get the result.

Note from the Editor…..

I was left feeling rather emotional after reading Mark’s article, he is a great inspiration and I would like to take this opportunity of thanking him for his valued imput.