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04
Dec
2018

Making it count – the real life stories of people benefiting from innovative new cancer treatments 

We are in an exciting time in cancer research, with many researchers believing we are at the tipping point in cancer treatment, and moving towards truly personalised treatment plans for patients.  

Four patients:  Debbie, Rob, Christine, and Anne

Contents

 

From bench to bedside and from patent to patient

Advances in cancer research are accelerating at an incredible rate – this is reflected in more people living with cancer for longer than ever before. It is a promising and hopeful place to be – research is showing us the future of cancer care, but unfortunately it is not quite the reality for all patients today.

One of the pillars of the research strategy here at The Institute of Cancer Research, London, is Making it count. Medical research is promising, but discoveries alone are not enough, if they do not ultimately get translated into benefit for patients. That is why the ICR is here and our researchers are passionate and dedicated about getting our discoveries into the clinic and to patients as quickly as possible, something which benefits from our ‘bench to bedside’ approach to research with our partners, The Royal Marsden NHS Foundation Trust.

Today, the ICR launched a report From patent to patient – analysing access to innovative cancer drugs, which delved into the oncology drugs licensed in Europe between 2000 and 2016. Perhaps unsurprisingly, the report shows the leaps forward we have made, with many more drugs with great promise now available to patients or hopefully coming soon.

But the report also showed that these promising drugs are taking too long to reach patients and there is a stark divide between cancer types when it comes to the ones that are benefiting from advances in research. Throughout the almost two decades covered by the analysis, no drugs were licensed for a number cancers of unmet need, such as brain, womb, oesophageal and bladder cancer despite knowing that this is where new treatments are desperately needed.

Contacting your MP about the issues highlighted in the Patent to Patient – analysing access to innovative cancer drugs report, is a fantastic way to get these issues in front of the people with power, so we can make change happen to improve outcomes for people living with cancer.

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Our role in discovering and developing new drugs

There is clearly still much work to do in ensuring as many cancer patients as possible receive the most innovative and effective treatments available, and changes need to be made to streamline clinical trials and regulatory approval if we are to make research count.

The report also showed that the ICR played a major role in the discovery or development of almost one in five of the cancer drugs licensed between 2000 and 2016 – a huge achievement, reaffirming our position as the most successful research institute in discovering cancer drugs.

With such a great contribution to cancer treatment, there are many people who have benefitted from the ICR’s research.

See all of our content supporting the launch of our new report: From patent to patient – analysing access to innovative cancer drugs.

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'Olaparib has given me hope'

Anne Goward, aged 54 from Canvey Island, was diagnosed with stage 3c ovarian cancer in June 2015. She initially had surgery to remove as much of the tumour as possible, alongside chemotherapy. But sadly her cancer recurred in January 2017.

Her second round of chemotherapy wasn’t working well – genetic testing showed she had the BRCA1 gene mutation and she has been treated with a drug called olaparib since March 2018. And it has made a big difference for Anne:

“Olaparib has worked amazingly for me, and really quickly. My tumour markers had gone down by a third within the first month of treatment. My markers are now the lowest they have been in 18 months. I have had some side effects, but olaparib has been so much better than chemotherapy.”

The ICR’s role in olaparib

In the 1990s, a team of scientists at the ICR tracked down the BRCA2 gene. Through studying how faulty BRCA genes work within cells, the ICR researchers found that targeting a DNA repair protein called PARP was a potential way to kill cancer cells with a faulty BRCA gene. This helped lead to the development of olaparib, and other so-called PARP inhibitors.

But that was not the end of the story for the ICR’s researchers. The ICR team continued to contribute to the refinement of PARP inhibitors, working with The Royal Marsden on early clinical trials of olaparib, with subsequent larger trials leading to the drug’s authorisation. So far, 20,000 women around the world have received this drug to treat their cancer.

Innovative drugs like olaparib, which was the first licensed cancer drug directed against an inherited genetic mutation, are exactly what we argue in our report should be embraced by regulators to ensure they reach people as quickly as possible.

“Olaparib has given me hope,” said Anne. “I hope to make my son’s 21st birthday and not just his 18th. I am even planning holidays and hoping to go to Italy next year. Before, I didn’t think into the future or plan ahead. I’m hopeful that I will have a few years chemo free and feeling good with fewer side effects.”

Getting drugs to the patients that need them

Patients, like Anne, are understandably excited by all the new treatments that are becoming available. But that excitement always has to be tempered.

“I feel very lucky to have been able to get olaparib. I read stories of really promising clinical trials and drugs coming up, but I always worry about whether it will make it over the final hurdle and get to the patients that need it, and how many patients will be able to access these new treatments. It’s vital that new treatments are made available to patients as soon as possible.”

Research at the ICR is underpinned by generous contributions from our supporters. Find out more about how you can contribute to our mission to make the discoveries to defeat cancer.

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'I wish other men could get abiraterone as soon as possible'

Rob Lester, from Fife in Scotland, was diagnosed at 55 with advanced prostate cancer. He has been treated with targeted drug called abiraterone as a first line treatment – he is now passionate about seeing other men, who might benefit, receive the same treatment as soon as they can.

“Obviously, it was a big shock,” said Rob, who at the time was a GP. “I had never met a man as young as me with prostate cancer. When hearing the result was 47, my first thought was ‘oh dear, this is not good.’”

Rob had a biopsy of his prostate and knew early on that the cancer was advanced, and that it had grown in a severe way so he was referred for an MRI and bone scan.

“The good news was that it was isolated to just one area of the bone – it was just in my spine. But I still had to cope with the idea that the cancer was further on than I had dared hoped it be.”

Rob’s treatment with abiraterone

At the time of Rob’s diagnosis abiraterone was still a very new drug. It was approved for use on the NHS by the regulator NICE in 2012 but that was only for advanced prostate cancer after treatment with chemotherapy. It was in that same year that Rob got the opportunity to have abiraterone.

“My doctors mentioned a trial to me, STAMPEDE, where I was put on abiraterone. The abiraterone has taken to me particularly well, I would call myself a lucky man. The drug brought down my testosterone level very quickly, and also my PSA. It is less than 0.1 at the moment and has been so for six years, which is unbelievable.”

Discovering abiraterone at the ICR

Abiraterone, as we are very proud to repeat, was discovered at the ICR. The discovery followed work in the 1990s when scientists at the ICR started to look for ways to shut off production of male androgen sex hormones, which drive prostate cancer.

The ICR team discovered that abiraterone was really good at switching off testosterone production in both cancer cells and in mice. The drug was then developed in clinical trials led by the ICR and The Royal Marsden. So far, over 400,000 men worldwide, including Rob, have received abiraterone to treat their cancer.

Rob describes the impact of his treatment: “Now, in the last six years, there is a lot more hope. That is what abiraterone has given me, hope. When I was first diagnosed I had hoped I would survive five years. Well I have done that – I have now survived six years. Not only have I survived, I have been living, and enjoying life and having a great quality of life. I am now hoping I will survive ten years, and if I am really lucky, 15 years.”

Could more people live well with cancer?

The new innovative treatments that are changing cancer medicine are so important because not only are they giving people time but they are giving people time living well.

“There are things that I have been able to do, that I wasn’t sure I would be able to when I was diagnosed. My nephew got married in San Francisco about a year after I was diagnosed. At the time I didn’t think I was going to be there. They asked me to officiate the wedding, and lead the ceremony and that was something very special.”

But Rob, unlike many people with cancer, received his targeted drug very early in his treatment. In our new report it is clear that drugs are taking too long to reach patients but it also challenges whether these exciting treatments should be given earlier, before giving the current standard therapies. This is something Rob has himself considered.

“I am part of a prostate cancer support group – there are many men that I look at and I think I wish they could get the treatment that I am on, and I wish they could get it as soon as possible. I’d like to see men who have a chance to benefit from abiraterone, and other drugs like it, get that opportunity.”

 

'Five years ago I might not have had these treatments and I might not be here now'

Debbie Keynes, 51 from Gosport, was diagnosed with melanoma in April 2016 after discovering a suspicious looking mole on her scalp. Following surgical removal of the tumour, Debbie had no evidence of disease until her specialist found further marks appear near her skin graft in December 2016. At this point scans found tumours in her liver.

Debbie was then started on a combination treatment of dabrafenib and trametinib. Dabrafenib is a type of drug called a BRAF inhibitor and in 2001, ICR scientists discovered that the BRAF gene is mutated in several cancers, including approximately 50 per cent of malignant melanomas. The ICR’s major role in characterising the BRAF gene and its role in cancer helped lead to the development of the drug.

Debbie’s experience of dabrafenib

Debbie responded quickly to the combination treatment: “When I started on dabrafenib the lumps on my head started to disappear. Even in just six weeks the brown marks on my head were fading. It was really encouraging, and each scan the liver tumours were shrinking. At the last scan they were struggling to see anything.”

The treatment is making a real difference to her life, she explained: “With the side effects now settled down, I was able to return to work, doing freelance in the care industry. It has allowed me to have more quality time with my family, I have three children, two living at home – 16 year old twins.”

It was a particularly scary time before Debbie began receiving dabrafenib and trametinib. “When I started on treatment and in the first year of being diagnosed I was living very much scan to scan,” she explained. “I have things to look forward to now, things that two and a half years ago I thought I would never do again.”

Major advances in skin cancer treatment

Our new report highlights skin cancer as one of the cancer types that has seen an explosion in new treatments and that has benefited many people in the UK and around the world. And these developments could not come soon enough as skin cancer is projected to rise in the UK.

“Just since I have been diagnosed we have come so far with cancer research, especially in melanoma. Five years ago I might not have had these treatments and I might not be here now. I personally am always looking to the next stage in case my treatment stops working, and with melanoma there are a few options there for patients. Seeing all the research being done and clinical trials out there is really encouraging.”

 

'Palbociclib allows me to lead a relatively normal life'

Ahead of skin cancer, breast cancer has seen the fourth most drugs licensed in Europe during the period of our analysis covered in the report. There have been major advances in the science but these new drugs are still taking too long to actually reach patients, even when the drugs are highly innovative

Christine O’Connell, was diagnosed with breast cancer in December 2012, and after having a recurrence in early 2018, has been treated with palbociclib – one of these highly innovative drugs. Palbociclib is a ‘first in class’ drug because it has what is called a new ‘mechanism of action’ – a new way of working to treat cancer. Palbociclib blocks two proteins – CDK4 and CDK6 – that help cancer cells divide and spread.

A phase III clinical trial led by researchers at the ICR and The Royal Marsden found that palbociclib could slow the progression of advanced breast cancer in conjunction with standard treatments and substantially extend the lives of patients.

Being swept up by a huge tornado

Christine shared her experience: “I was diagnosed somewhat randomly. I should have known it was coming – my mother was diagnosed with breast cancer in her 50s, and my grandmother and great grandmother in their 70s – but at the age of 40, breast cancer was not top of my mind. I casually asked my doctor about a pulled muscle. The next few days were a whirlwind I can barely remember.”

Rather than a simple pulled muscle. Doctors found a 7 cm tumour in Christine’s left breast. 

“My diary for the next eight months was suddenly full and out of my control. I started chemo on 3rd January 2013, and then I had seven further cycles of chemo to look forward to, a mastectomy and radiotherapy. It was like a huge tornado had swept through my life. It was completely overwhelming, as well as being absolutely terrifying.”

But then Christine was cancer free for four and a half years and feeling fit and well – she developed a passion for cycling.

Waking up in an ambulance

“I had a 6 monthly review this past January and all was fine. Then, on 1st February 2018, I was cycling to a meeting in Soho. I remember coming through Mayfair and next thing I knew I was in an ambulance – with my bike.”

After being told she had had a seizure, Christine’s scan revealed a brain tumour. The oncologist confirmed the diagnosis of secondary cancer – as well as spreading to her brain, there were two small pelvic lesions.

“Once again I was in shock. Yes, I did worry the cancer would come back but I hadn’t really thought about how it would happen, and that I had a brain tumour beggared belief,” Christine recalled.

Christine’s treatment with palbociclib

The brain tumour was successfully removed by the surgeon but Christine’s medical team wanted to make sure the tumour site was fully treated so she had a very targeted form of radiotherapy, called Cyberknife, and that was when she started taking palbociclib, which she refers to as ‘palbo’, its more ‘user friendly’ byname.

“I’m on the 9th cycle and it’s working well – my cancer is currently stable. Palbo allows me to lead a relatively normal life – I can do some consultant work, albeit often from home. I still cycle 3-4 times a week. This year I did the Etape du Tour, an amateur event that follows the route of one of the stages of the Tour de France, completed the 365km ride from Manchester to London in a day to raise money for autism, as well as a 600km ride from Paris to Amsterdam I organised.”

As well as Christine is doing with her treatment now, she realises that other people with cancer are not so lucky when it comes to getting innovative new drugs like palbociclib.

“There seems to have been an uptick in progress for treating secondary breast cancer and palbociclib is one of several options – that’s very exciting and hopeful. But it's so hard to see how long it takes for drugs like palbociclib to become available – every day that a new drug is delayed makes a difference to people like me. It's time that we might need to help improve or extend our lives.”

Making it count for even more patients

These incredible stories demonstrate just how well some people can live with cancer thanks to new, innovative treatments that are both smarter and kinder. They are stories of hope, of life, and of the future of cancer treatment. Lots needs to be done to ensure that more people have stories like Christine, Anne, Debbie, and Rob.

Our report shows that the research is happening and discoveries are being made. But to get more innovative drugs to patients, clinical trials need to be smarter and faster, and approval processes in Europe, and then in the UK, need to be better at picking up on real innovation so they recognise which drugs could have the biggest benefit to patients and they have to be as fast as possible.

These changes are needed. If our research here at the ICR is to benefit the most patients possible, change must happen to ensure we are making it count for everyone, today.

Read the From Patent to Patient report

 

 

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abiraterone olaparib trametinib dabrafenib
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