Pressure sores and honey

In the last few months of his life, our son George was at home and completely bed-ridden. A combination of tumour pain, deep vein thrombosis and weakness meant that he was barely able to move, even in bed. Inevitably this led to the development of pressure sores - also known as bed sores - on his lower back. Of all the symptoms that he suffered, this was the worst. The pain was unbearable, intense and barely touched by the wide range of pain killers he was prescribed by the palliative care team. For us, this was the most difficult thing to deal with. Nothing we could do seemed to make a difference. The pressure sores were treated with topical drugs (including morphine), as well as high doses of oxycodone and other opiates. We were told that the sores would not recover, that more were likely to develop and that they would become progressively worse.

In desperation we researched as much as we could and very early on came across lots of positive reports about honey, especially Manuka honey. I downloaded a number of medical papers and clinical trial reports and passed these to our local nursing team. They in turn handed them to a specialist back at our local hospital but nothing happened. The preferred solution was to up the drug doses, even though these made George even more sleepy and therefore less able to move and more likely to make the situation worse. The sores deepened, as did George’s level of distress. I sent papers to whoever I could but they were received with frank scepticism.

LDN Aware Voices DVD

This double DVD release brings together doctors, scientists, pharmacists and patients to talk about their many and varied experiences with Low Dose Naltrexone (LDN). And these are voices worth listening to because their message is compelling. At the moment we don’t know how many patients could benefit from LDN, we don’t know how many conditions it can treat and we do not have clear idea of how it is that it works. But there is enough evidence for us all to take this seriously.

Of the many voices on the DVD some stand out. Jackie Young-Bihari, widow of the late Dr Bernard Bihari (who discovered low dose naltrexone as a treatment, initially in HIV/AIDS patients), does a great job of telling the history of LDN. It was one of those lucky accidents and Dr Bihari had the foresight not to turn away from his discovery but to take a chance and treat a wide range of patients with many different diseases, including cancer.

Dismal bone cancer statistics

Yesterday's email inbox included details of a new paper published in the International Journal of Cancer by Dr Jeremy Whelan (possibly the UK's foremost expert on osteosarcoma and other bone cancers) and colleagues. The abstract of the paper is included below:

Int J Cancer. 2011 Sep 12.
Incidence and survival of malignant bone sarcomas in England 1979-2007.
Whelan J, McTiernan A, Cooper N, Wong YK, Francis M, Vernon S, Strauss SJ.

Abstract
Primary malignant bone sarcomas (MBS) are rare and there are few studies examining their incidence and outcome. Here, the incidence and survival of all subtypes of MBS registered in England between 1979 and 2007 were analysed from patient registry data held by the National Cancer Intelligence Network (NCIN). Over 11,002 new cases of MBS were registered, an average of 379 per year. There was no change in incidence demonstrated over the study period (p=0.08). Although a peak incidence is observed in adolescence, approximately half of MBS are diagnosed in patients over 50 years. An improvement in outcome of MBS was observed between those patients registered from 1979-1983 and 1983-1987 (p<0.0001), but there has been no improvement since. In the most recent period studied (patients diagnosed 1998-2002) 5-yr survival was 55% in Ewing sarcoma, 70% in chondrosarcoma, 56% in chordoma and 43% in osteosarcoma. Patients diagnosed with osteosarcoma over the age of 40 years or with a non-extremity tumour have a significantly inferior outcome; 22% 5-yr survival >40 years compared to 53% <40 years (p<0.0001) and 16% non-extremity tumour compared to 48% extremity tumour (p<0.0001). This population-based study has allowed us to confidently define the English incidence and survival rates of both the commoner bone tumours such as osteosarcoma, and rarer entities such as chordoma as well as groups with inferior outcome. The lack of significant improvement over recent decades for these diseases is cause for concern and further research.

Guest Post - Penny

The following is posted on behalf of Penny Sophia-Chistophe:

On April 25th 2011 I received a phone call to inform me that my beloved cousin Georgie had died. It was the morning of my 22nd birthday. Georgie and I had always been close so his death was incredibly hard to bear. He was the sixth of my close relatives to die in my lifetime. Two Grandparents, two aunts, an uncle and now a cousin all snatched away by cancer.

A consequence of this is that I decided to channel my anger and sadness into trying to save others.

I applied to become an ambassador for Cancer Research UK (CRUK). CRUK’s ambassadors are a brilliant group of passionate supporters working hard to help CRUK effectively influence politicians, engage the local media in their campaigns and try to help them save lives. Our stories, experiences and passion have become one of CRUK’s most powerful campaigning tools and are vital part of their work.

As an ambassador my activities are varied and interesting:

* Communication with local politicians and parliamentary representatives; flagging up our campaign issues and persuading them to back us and take positive action on our behalf.

* Engaging with our local and regional press; securing coverage for our campaigns and raising awareness in our local area.

* Lobbying for specific cancer related campaigns.

Our current campaign is “A Voice for Radiotherapy”. CRUK believe everybody deserves the best chance at fighting cancer and beating it. This means giving them access to the best possible treatments. Up to half of all cancer patients could benefit from access to world class radiotherapy treatments but only 4/10 people with cancer currently do. We are campaigning to make sure it is available to everybody who could benefit from it.

Awareness of radiotherapy is low; a recent CRUK survey reveals that 14% of people are aware of it. We are concerned that a lack of public awareness means that radiotherapy does not receive the attention is needs to develop into a world class service in the UK.

We are calling on the government in England to introduce an action plan, to tackle unequal access to radiotherapy and make sure that all services have the appropriate workforce, the best treatments and the capacity to plan for the future. We want to make sure that everyone who needs it has access to world class radiotherapy treatments.

Please take a moment to sign our petition and get as many of your loved ones to do the same:  http://e-activist.com/ea-action/action?ea.client.id=149&ea.campaign.id=9329&ea.tracking.id=PennySC

We will be handing this petition in at Downing Street in November. We are aiming for 36,000 signatures, one for every person who misses out every year.

Thank you

Penny (pennychristopher@googlemail.com)

LDN Awareness Week

Naltrexone is a drug that is used to treat alcohol or opiate dependence. It’s one of a class of drugs called ‘opoid receptor antagonists’. What makes this an interesting drug from an anti-cancer perspective is its reported activities on the immune system when given in low doses. Low dose naltrexone (LDN) has been reported to slow proliferation of cancer cells in a variety of different cancer types – including hard to treat cancers such as pancreatic and ovarian cancer. The use of LDN is what is called an ‘off-label’ use of a drug - in other words it describes a case where a drug for one disease is also used for a different disease. At the moment most off-label uses of LDN are for treating auto-immune diseases, particularly Multiple Sclerosis and Crohn’s Disease.

Summer reading

Summer reading this year included 'The Edge of Physics' by Anil Ananthaswamy. The book describes a series of key experiments currently taking place that probe the raw substance of the universe. The most well-known example is the Large Hadron Collider at CERN, which is currently looking for evidence for the existence of the Higgs boson, but it is only one of a number of monumental studies in progress. We are at the point where scientists are probing for the evidence for the existence of multiple universes, for understanding at a deep level what space-time is made off, what dark matter and dark energy are.

It's amazing stuff for sure, but one thought kep coming back to me as I read through the book - why is it we know so little about cancer? Reading the cancer literature one is struck again and again by how ignorant we are about this vile disease. Even basic things - the role of antioxidants, the causes of chemo-resistance, the mechanisms of immune escape - seem to be beyond us. Where are the major theroretical breakthroughs in cancer? Where is the basic knowledge that will unlock new therapies? The more one reads of the cancer literature, the more one realises that we're groping in the dark.

Let's hope that more physicists and engineers start to look at cancer - perhaps some fresh approaches are what we need to make progress. Because major progress is what we desperately need in this area.

Volunteers Required - Fund-raising in Woodford Green, Essex

December is National Childhood Cancer Awareness Month, and George's cousin Penny will be organising fund-raising activities in his name for Clic Sargeant. We  have a personal connection with Clic Sargeant, the team at the Royal Marsden in Sutton provided lots of support for our family during George's illness. It's a great charity that helpes people in very practical ways at a difficult and distressing time.

Penny is organising activities at Tesco's in Woodford Green in Essex on December 15th and 16th. It's still in the planning stage, but volunteers to help out would really be appreciated. More details will be posted closer to the event, but if you are in the area and want to help out for a worthy cause then please drop a line to pennychristophe@googlemail.com