The LDN Research Trust - Q & A Linda Elsegood

The LDN (Low Dose Naltrexone) Research Trust is at the forefront of raising awareness of the potential of low dose naltrexone as a treatment in auto-immune diseases and cancer. Not just in the UK, the LDN Research Trust has done an outstanding job on the international as well as the national stage. At the heart of this hive of activity – with multiple projects on-going at any one time – is Linda Elsegood, who founded the Trust in February 2004. Ahead of a busy schedule in organising the 2014 LDN Research conference, Linda was kind enough to answer a few questions on LDN and cancer.

Pan: There seems to have been a real rise in the level of interest in LDN and cancer, what’s driving that?

Linda: It’s been incredible really, there is so much interest coming from all areas now – not just in this country but internationally too. Social media has made a huge difference to this. People can access information much more easily than when we started more than 10 years ago. And it’s not just from patients. We get a lot more interest from doctors too. People want to know. And we’re really busy at the LDN Research Trust. We’ve got seven projects on the go at the moment, including the filming of a documentary, there’s the conference which we really want to live stream to everyone for free, to achieve this we have to raise the money. Again, social media is making the difference to this sort of thing.

Pan: In terms of this level of interest, how much is it driven directly by doctors, and how much is it doctors pushed to find out by their patients?

Osteosarcoma - A Proposal for Reducing the Relapse Rate

As has been mentioned on this site before, there has been little progress in the treatment osteosarcoma – the disease that killed my son,George – in the last twenty-five to thirty years. The actual figures vary by country, but generally the five year disease free survival is around 60% - 70%, though in the UK the last published figures were an absolutely appalling 43%. But these figures mask what’s really going – osteosarcoma of the extremities (the long bones in the arms and legs) has a much higher disease free survival rate than osteosarcoma at other sites. So the figures for England show that the rate is 48% for osteosarcoma of the extremities and only 16% for other sites. And, regardless of site, the prognosis for relapsed disease (whether it’s a local recurrence or a distant metastasis) is truly grim.

Looking at the patterns of relapse however shows us something really interesting and, hopefully, significant. The vast majority of relapses occur within 18 months of surgical resection (and in osteosarcoma the only way for definitive cure is to surgically remove the tumour). What is more, most of these relapses take the form of distant metastases, the majority appearing as new tumours in the lungs. This begs the question as to why this pattern? It suggests that there’s something systemic going on – and it’s a similar pattern to the relapse/recurrence of breast, lung, head and neck and other cancers. 

One possible mechanism involves the surgery itself. The body responds to the trauma of surgery by releasing different growth factors, cytokines and other inflammatory responses. This is necessary for wound healing, but it also creates an environment that is conducive to cancer growth – there are pro-angiogenic growth signals, immune suppression and so on. It all adds up to an environment that gives any microscopic pockets of cancer cells the chance to expand and grow into new tumours, particularly in the lungs.

The Case of Dr Henry Mannings

It was back in December 2012 that I first wrote about the case of Dr Henry Mannings, the founder of Star Throwers, a charity in Norfolk that helps late stage cancer patients with nowhere else to go. Let me state at the outset that I am a Trustee of Star Throwers and proud to be one. Henry Mannings treated my son George when we had no place else to go. In the many years of treatment that my poor son endured before his death, we met few doctors as dedicated, concerned and open minded as Henry Mannings. George was the first patient that Henry treated with Coley’s Toxins, but by then the disease was so advanced that nothing could stop it – but George, and the rest of the family, appreciated the care and advice from Henry, and the hope that the treatment gave us when there was no place else to turn. And, let me add, Henry made no promises, he did not give us false hope and everything he said or recommended he backed up with evidence and reasoning. In the years since George’s death I have come to know Henry Mannings well and I know that the trust he inspired in us he continues to inspire in the many patients who come to Star Throwers.

However, his popularity with his patients, and his open-minded approach to oncology, makes him unpopular with some of the powers that be. And so in late 2012 a complaint was made by a senior oncologist in Norwich to the General Medical Council. The complaint alleged that Dr Mannings was prescribing chemotherapy drugs in an unsafe manner that put patients at risk, with specific mention of two cases. In neither case was the complaint made by the patient or the patient’s family. In fact the complaint was made without first asking the people concerned whether they had any complaints to make against Dr Mannings.

Based on these complaints the GMC instituted proceedings against Dr Mannings, and initially took the step of taking away his power to prescribe treatment at Star Throwers. This meant that patients who were being actively treated had to stop treatment, even if these treatments were successfully keeping cancer at bay. In response there was an outpouring of support from patients and patient families, from other clinicians familiar with Dr Mannings and his work and from experts in the field who could see no wrong in the work that he was doing or the scientific rationale behind it. He wasn’t offering miracle cures or ripping patients off or acting in any way unethically. The restriction on prescribing was removed in January 2013 but in many senses the damage had been done - doubt had been cast on Dr Mannings competence and the work he did to fund himself while working for free at Star Throwers dried up. More than that, it put him under great personal strain and incredible levels of stress that no amount of public support from patients and friends could quite counteract.

Organic Food and Cancer Risk

There is a theory popular in certain alternative and complementary medicine circles that cancer is caused by environmental toxins, radiation, microwaves, mobile phones and just about every modern convenience in the household. While there's little evidence for any of this, the idea that there are 'chemicals' lurking in the environment has become common-place, particularly when it comes to food. Hence one of the most common questions from newly diagnosed cancer patients: should I switch to an organic diet? There are enough people out there pushing the idea that 'organic' food is healthier than conventionally grown food, so it should be no surprise that people naturally feel that food grown 'without chemicals' will help them in the fight against cancer. After all conventional crops depend on 'chemicals' and organic food doesn't. And we all know that chemicals, in this case mainly pesticides, are bad for you. Therefore organic food should be healthier, and the strong growth in organic food sales in the last ten or fifteen years shows how popular opinion has accepted this assertion. 

However, the results of a new UK study that looked at cancer risk and the consumption of organic food seems to suggest that popular opinion is pretty much wrong in this case (http://www.nature.com/bjc/journal/v110/n9/full/bjc2014148a.html). While organic food and alternative medicine advocates have pushed organics as a way of reducing cancer risk, the study shows that it makes little difference one way or another. The study in question appears in the British Journal of Cancer and is by Oxford University cancer epidemiologist Dr Kathryn Bradbury and co-workers. Part of the Million Women Study funded by Cancer Research UK and the Medical Research Council, this particular bit of research tracked 623 080 middle-aged British women for almost ten years and looked at their pattern of organic food consumption and the incidence of sixteen different cancer types, as well as overall cancer incidence.

Based on their reported eating habits the women were put into three groups: never, sometimes, or usually/always eating organic food. The headline result showed that eating organic was not associated with overall cancer incidence one way or another (in fact there was a tiny increased overall risk of about 3%, but it’s the sort of noisy result one can ignore). The results for the different types of cancer are mixed, with some showing increased or decreased risks, but no overall pattern or anything too dramatic. These results, in contrast to the myths of wholesome organic, have upset some people, especially the British Soil Association, the guardian of all things organic in the UK (including being the premier organic certification body in the country). 

Guest Post - Genetic Alliance UK: The My Condition, My DNA Project

 My Condition, My DNA

Would you be willing to take part in a research study to help us understand what patients affected by genetic conditions and their families think about the use of genomic sequencing in the NHS?

When the first person had their entire DNA sequenced as part of the Human Genome Project back in the 1990s, it took over 12 years. Today it is possible to have your entire genome sequenced in just a matter of weeks. A new technique has been developed which means it is faster and cheaper to do this, and as a result has the potential to dramatically change the way that conditions may be diagnosed and treated.

The aim of this research is to find out what patients and families think about genomic sequencing. This will involve exploring the ethical, societal and practical issues raised by the NHS using genomic sequencing to collect large amounts of an individual’s genetic information with the view to improving healthcare. As the ease of genomic sequencing and its potential uses becomes greater, people working in the NHS and other healthcare providers will be thinking about these issues and making decisions. By being a part of this research, you can help to bring the perspective of patients into the decision making process and form a key part of shaping how genomic sequencing could be used in UK healthcare to benefit patients.

What is the purpose of this project?

To help patients and their families understand what genomic sequencing is and how it might be used in a healthcare setting; and to understand from them their opinion of the ethical, societal and practical issues raised by using genomic sequencing in the NHS.

Who can take part?

If you or a member of you family has a diagnosed or suspected genetic condition we would like to hear from you. We are particularly interested in having families take part. This may include children under the age of 18, although an individual under 18 cannot take part without a parent or guardian.

The Medical Innovation Bill

What happens when you reach the end of the road with the standard cancer protocols? A patient starts with first-line treatments, usually a combination of chemotherapy, surgery and radiotherapy, depending on diagnosis and disease staging. If the response to that first-line isn’t positive, the disease continues to spread, then there’s a second-line and possibly a third-line treatment, depending on the type of cancer and how the patient responds to these often toxic treatments. And if the disease is still there at the end of this gruelling process? At this point the prognosis is pretty grim. What happens then?

At this point I should say that I’m speaking from direct personal experience with my son, George, who died almost three years ago from metastatic osteosarcoma that resisted every treatment thrown at it. And from the experience gained in the years following his death in trying to help other people in a similar situation, often also suffering from Li Fraumeni Syndrome as George did.

What happens? In the first instance the lead oncologist will often look for a clinical trial, hopefully a Phase II or Phase III trial. But often the patient will have already been on a trial and come out the other side with the disease still active. In practice if there are trials available, and often they are not, it will be a Phase I trial. The aim of a Phase I trial is to find the right dose to use in a Phase II trial, which is looking to see how well a drug works. Efficacy – how well the drug works – isn’t normally the primary outcome from a Phase I trial.

And if there’s no trial, or you don’t want to go on a Phase I trial with a new drug that might have toxic side effects and no effect on your disease? Then you are in the realm of palliative care. If there’s no standard treatment and there’s trial, then the emphasis is on trying to keep a lid on the symptoms and trying to preserve what quality of life you have given the advanced state of the disease.

But what if there’s something that doctors are using in another country? What if there’s a drug that has been shown to have some effect in your type of disease? What if there are other options that aren’t covered by the standard protocols?

Curcumin - Bioavailability Results

I have written before about curcumin, the yellow pigment from the spice turmeric, and its anti-cancer properties. In the lab there is ample evidence from petri dishes and test tubes, and evidence too from animal experiments aplenty. It seems to act in multiple ways across a wide range of different cancer cell types. On paper at least, it's one of the most promising of the food-derived agents and there are lots of people who are convinced that by itself it can act to protect from the toxicity of chemotherapy and radiotherapy, to act directly against the inflammation implicated in cancer-initiation and as a drug to kill established tumours. The reality is somewhat less impressive than all of the lab work suggests and the clinical trials to prove one way or another are mostly still in progress or not on the drawing board.

One trial that is in progress I have written about previously (www.anticancer.org.uk/2011/12/curcumin-trial-in-uk.html). It's a UK trial looking at curcumin combined with standard chemotherapy for inoperable colorectal cancer. The same team behind the trial have published some interesting results on one of the main issues in the use of curcumin as an anti-cancer drug: bioavailability. Like many other polyphenols with anti-cancer properties, such as resveratrol or quercetin, curcumin suffers fom low levels of bioavailabilty. This means that to get a therapeutic level a person has to take an awful lot of the stuff, and even then it's often doubtful how much gets through digestion and metabolism and into the tissues to do any good. In this trial patients took 5 × 470 mg (2.35 g total) tablets of Curcumin C3 complex for two weeks. This is a relatively low dose compared to some trials where patients took 6 g or even 12 g a day - that's a lot of tablets to take - and the question was whether this dose would even be detectable or not.

The first thing to report is that few patients (six of 24) reported side effects, and these were mild tummy upset, in contrast to studies with higher doses. In this trial only one patient out of 24 reported unpleasant side effects after two weeks of curcumin. The suggests that a good dose for future trials is between 2 and 3 g of curcumin a day. Blood tests revealed that curcumin was detectable in nine of 24 plasma samples, all 24 urine samples, and in the colonic mucosa of all 23 biopsied participants. High levels of topical curcumin persisted in the mucosa for up to 40 hours post-administration.

At the same time this trial asked patients about what they felt about taking curcumin as a treatment. Sixteen participants (67%) stated that they would take curcumin long-term should it be of proven benefit, providing further support for future trials.

While this is a long way from showing that there is a direct clinical benefit from taking curcumin, it's another small step in the right direction. The trial has established a dose that gives detectable levels of curcumin and its metabolites in the colon and has shown that there's some support from patients - with the important proviso that it's shown to be beneficial. And for that we still have to wait.

The results are published as open access here: http://cancerpreventionresearch.aacrjournals.org/content/6/2/119.long