Thinking the unthinkable

A drop. Yes, I will repeat that. My CEA has dropped. In four weeks it has gone from 16.6 ng/ml to 14.9 ng/ml. This is not supposed to happen. I was on a rapid rise with growing and radiology-evident tumours. OK. Let's deconstruct this.

First, my previous reading showed a rise that was less than I had expected, from 14.3 to 16.6. So that's the first intriguing phenomenon. And what did I start doing at 14.3? I returned each morning to "Uncle CC's famous vegetable juice" (potato, carrot, cucumber, tomato, green apple, celery and barley green). Note that back at day 400, when I began Uncle CC's remedy in response to my then rapid CEA rise (a 4 week-doubling period) in 2010, the rate of rise fell back to a noticeably lower rate, just as seen in my latest May 2011 response.

So what of this latest drop? Now my embarrassment is extreme, because, dear reader, as I mentioned one month ago, I have used my holiday from scientific medicine to carry out a personal experiment. I said then that I would use a two-pronged strategy, at the risk that if a positive response resulted, then I would not know the source of that success. And I promised then that "details will follow that may amuse you as much as they do me." Now, I think it is the time to confess all.

I have been taking massive doses of intravenous vitamin C, at 100 grams per infusion. I have had about 6 treatments, over a four week period, stepping the dose up from 25 grams, though 50, 75 to 100. I urinate incessantly for several hours following, but the biological half-life of vitamin C is around 3 hours, so that the next day I return to normal. And, for two weeks, following my return from Singapore, I have taken a chinese herbal medicine prescribed by the Ngee Ann chinese medical centre in Singapore.

Am I mad? Probably. I took the vitamin C, partly because my good friend Pablo Etchegoin has done so for 14 months and defied his oncologist's prognosis, and partly because one of the most brilliant scientists I know, immunologist Graham LeGros, suggested to me that vitamin C might potentially "provoke the immune system" to my advantage. And, I took Chinese herbal medicine, because my comrade and mentor, Uncle CC, swears by it.

So there it is. Is this science? Not really. You can't base a treatment regime on n=1. But being that particular n=1, I could say "well it works for me". But even that may be stretching credibility. My data so far suggests a correlation between my CEA reading and the treatment regime. Of course, it may all be a coincidence. It may be the TaiChi (I have now mastered the 32 form). It may be the public speaking I am doing. It may be the Chilean volcano.

I am not entirely a fool. Next month it might all change. My CEA may start galloping upwards, despite gorging my veins with "all the vitamin C in China." And then again, it might just keep dropping.

It seems as if I am condemned to continue my strange experiment for a while yet. Ah well, as I said once before on this subject, "It's better than a kick in the pants."

Fun In Parliament

A nine minute exchange took place in Parliament last week when the opposition spokesman on science, David Shearer, asked the Minister of Science and Innovation, Wayne Mapp, "Does he agree with Paul Callaghan's statement on science and innovation, 'it's clear that the Minister of Finance and the Prime Minister have not really seen this as a top priority'"?

What David didn't read was the full quote from my Radio Live interview, namely, "I think Wayne Mapp has done a fabulous job as Minister of Science and Innovation and he's really on board with this, but it's clear that the Minister of Finance and the Prime Minister have not really seen this as a top priority".

In the debate, Wayne Mapp tries to read out the full quote but is stopped from doing so by the Speaker of the House, Lockwood Smith. You can tell from the good natured jesting that goes on in the various points of order that Science is not a terribly partisan issue in New Zealand politics. It is also clear that Wayne was himself disappointed by his lack of success in getting more funds for science this year. Watch the active facial muscles of the woman to the left of Wayne, Paula Bennett, Minister of Social Development, a person who is unlikely to have ever had a single thought about science and innovation.

http://www.youtube.com/watch?v=MIQqSBoBBdA

My favourite primary school teacher

Last year I wrote about Diana Beaglehole, who, when I had her as my Standard Four teacher at age 10, was the gorgeous Diana Flower. Today, Diana and I went for lunch together at "Milk and Honey", the university restaurant, and then we visited my lab, as the picture suggests. Over lunch we had a great opportunity to catch up on the subject of Wanganui characters and legends from primary school, as well as the state of the world, a matter on which Diana, an historian, converses fluently.

Most remarkably Diana gave me a photograph which I reproduce below. With her box Brownie she had captured a moment in the life of her 1958 Standard Four class. The little boy in the middle left, holding the pencil so carefully in his right hand, is me. On the far right, with her hair parted in the middle, is my first love, Dallas Caldwell. But the best part of this photo is not, I think, the children at work. It is the wonderful wall postings, a tribute to Diana's imaginative teaching. Above my head is the obligatory 1950s public health poster with the message "Guard your natural teeth-they are best!"

PhD student number 23 successfully defends

Yesterday, Lauren Burcaw successfully defended her PhD thesis, "Multi-dimensional nuclear magnetic resonance methods in the inhomogeneous magnetic field". Her external examiners were Mark Conradi (University of Washington, St Louis) and Pat Langhorne (Otago University). Here she is with partner Rob at the post oral celebration in the quirky Wellington bar, Hashigo Zake. Lauren came to us from Penn State University where she completed her first degree in physics, before spending some time working at Schlumberger-Doll research.

Lauren and Rob are heading back to the US soon where Rob will work as an engineer and Lauren will take a job as an MRI physicist.

Lauren is my 23rd PhD student. Next to defend his thesis is Brad Douglass, student number 24. His thesis is with the examiners and we expect to have the oral in September after I get back from the UK.

PS: Lauren's completion has special significance for me. On Thursday 27 November, 2008, Lauren gave her 1st year PhD seminar to the School of Chemical and Physical Sciences. I was supposed to introduce her and chair the seminar. That morning I had experienced abdominal pain and stayed in bed, completely forgetting my obligation. At around 11-30 am Mark Hunter rang to remind me. I got out of bed and drove in, arriving just on the dot of 12 noon. By this stage the pain was severe. I managed to complete my task, then I drove home in a dazed state, hardly believing how painful my abdomen was. At 5-30 pm Miang arrived home and insisted she take me to the emergency doctor in Newtown who immediately diagnosed a bowel blockage. By 7 pm I was at the Accident and Emergency Department. By Friday morning my bowel tumour had been discovered. On the morning of Saturday 29 November, I underwent emergency surgery. So began my adventure with cancer.

Has the country gone mad?

The latest Reader's Digest list of "Most trusted New Zealanders" is out, and shock, horror, the top three are scientists. Apparently the methodology is to sample ~ 750 people, giving them a list of names and asking them first, if they have some familiarity with the person and then, second, how they rank them in terms of trustworthiness. The PM had 97% recognition (my goodness, that means 3 % of us hadn't heard of him), and the three scientists had 35 % recognition. Only the "recognising" respondents' answers are counted and then the rating is done pro rata.

So there you are. If you believe this sort of nonsense, I am the third most trusted New Zealander. Ray Avery, the most trusted, is a legendary fellow, a philanthropist as well as a successful science entrepreneur. Both he and Peter Gluckman are friends of mine. The media are shocked by this outcome and the science community is delighted but stunned. What the hell is going on in this country?

For TVNZ coverage see
http://tvnz.co.nz/national-news/scientists-top-most-trusted-list-4247442/video?vid=4247440

For newspapers
http://www.stuff.co.nz/dominion-post/news/5166502/Who-are-New-Zealands-most-trusted-people
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10733460

For Science Media reaction
http://sciblogs.co.nz/molecular-matters/2011/06/20/woohoo-the-most-trusted-new-zealanders/

I'm sorry, I just have to share this

I want to use my time well. The New Zealander of the year status has given me a platform by which I can communicate effectively around the issue of New Zealand's future. At the moment I'm in a whirlwind of speaking engagements in which I deliver the 20 minute YouTube presentation, expanded as appropriate to the audience. The YouTube video has now had over 8000 views, mostly in New Zealand of course, and so I have already reached 0.2% of our population that way. But the really important point is the nature of the audiences. I am only accepting invitations to speak to opinion leaders. Yesterday it was, in three separate events, the senior management of IBM New Zealand, the top team at AJ Park Intellectual Property Lawyers and the Green Party caucus in Parliament. Today it was the Nelson regional economic development agency and the Chamber of Commerce, and next Monday it is the equivalent group in the Bay of Plenty.

I am getting great feedback. But most interesting to me was the outcome of the talk given to young "20-something" leaders identified by the Victoria International Leadership Programme. They volunteered their thoughts anonymously in writing to the Programme organisers who passed them on to me. I reproduce a representative selection below, simply to explain my motivation for continue doing this for a little while longer.

"I was unsure about booking in for this seminar and to be honest, wasn't particularly looking forward to it. However I have to say that it has been the most interesting and engaging seminar as of yet. I was concerned about Paul Callaghan's strong science focus, as obviously I have never taken a huge interest and am not studying it. Instead I found his life experience and passion for what he does to be inspiring. He made me think about where I am in my life at this point. Having spent pretty much all my life in New Zealand, I have only ever been influenced by the New Zealand culture, politics and outlook on life. After this seminar, I now look forward to my exchange for an entirely new reason. Now I look forward to meeting people and being a part of a culture that has a totally different outlook on education, way of life and what their country does for them. I'm not sure about where I will end up settling down in life. But Paul made me think more about bringing back other aspects of the world to New Zealand and inspiring others. "

"Not many lectures have ever made me truly think. In my academic career, I have never left a lecture and thought about it, at length, for a period of time. The lecture given by Sir Paul Callaghan was captivating, and I think one of the most surprising that I have listened to during my experience with the VILP. Once I had left the lecture theatre, I was quite dumbstruck. Even as I thanked Paul for his lecture, I could not think of anything intelligent or interesting to remark to him. Nothing. I walked home in silence, sat down with a cup of tea, and continued to think, until I began writing this reflection.

Initially I was quite surprised that his topic of conversation surpassed science, moving to philosophy, economics, politics and society. Despite the breadth of his lecture, he held the audience, who draw from all academic backgrounds, and it was possible to tell how well he had lectured through the quality of the questions given to him.

He titled the lecture: ‘Challenging common sense: New Zealand and its prospects’. This perfectly defined the topic of the lecture he gave, and made me think extremely carefully about my own views on the future of New Zealand, and its position in this competitive globalised world. His initial comments were quite pessimistic, discussing how tourism employment not only ‘dumbs-down’ the population, but reduces GDP through the reduction in revenue per employee compared to high-tech employment. But, he continued to discuss the country's position as one that is required to fill niches in the global markets – as 0.2% of the world’s population, it’s role is not to produce mass goods for the mass market, it is to fill niches left by other multinational firms. He discussed the need for entrepreneurship, innovation and education, and in my opinion, really inspired the room to consider his thoughts on the need for brilliant businessmen to excel the economy of New Zealand.

It is almost impossible for me to describe, on paper, how the lecture really made me feel. Optimistic. Pessimistic. Thoughtful. Understanding. These words go no-where near. The lecture have an incredible insight into Paul's work, both in the private and public sector, and I hope for the sake of the VILP he speaks again."

"This was one of the best seminars that I have ever attended by far, even beyond VILP. Sir Paul Callaghan is an exceptional man who offers a refreshing and invigorating insight into the future of New Zealand. Interestingly enough, “refreshing” is exactly the word Paul used to describe the ideal characteristic of an effective leader; one who is capable of challenging the status quo and one who can effect change.

Paul’s presentation encouraged me to reconsider many perceptions that New Zealanders hold about their own people and nation, most often without even questioning the evidence behind these “myths”. This made me realise that certain ideas about the state of our economy, our image and our future are not necessarily as they seem. This concept of refusing to accept things on their face value was another important philosophy on which Paul focused.

Rather than simply accepting that New Zealand is only good for dairying, that tourism is the future of New Zealand, or that we have no chance competing in the international market, Paul encouraged me to see the flaws in these arguments by examining the data and real evidence that clearly negates these perceptions.

Paul really stimulated the patriotism in my mind and heart that I really didn’t know was so strong. He made me see that the compact size of our nation really can work in our favour sometimes, but it does require a vision, and more importantly a passion. Paul reinforced the idea that there is a huge future for New Zealand, and recognised New Zealand’s ability to become a sustainable and thriving economy. He made me realise, however, that becoming more successful as a nation requires refreshing, passionate, articulate and inspiring leaders; people who are entrepreneurial and capable of taking a “contrarian perspective” to the status quo. These insights have enabled me to examine my own perception of what makes an effective leader, and to think about how I can incorporate these ideas into my own practice as a future leader.

Before this seminar, I was completely unaware of the fundamental importance of science in New Zealand, but having left this evening, I now have a much better understanding of the quality of New Zealand’s knowledge economy. I truly believe Sir Paul Callaghan’s conviction that New Zealand can and will become a thriving economy, despite our recent setbacks. All it will take is the commitment and risk-taking of our future leaders.

Sir Paul Callaghan is an incredibly interesting and passionate man who makes me proud to be a New Zealander. I feel extremely privileged to have been able to attend this seminar and I highly recommend it to anyone should they get the opportunity to hear him speak in the future."

An unusual experiment

Just before I left for Singapore and Malaysia, I had a PET-CT scan, my 5th in two years. A clear "18-F Glucose avid" bright spot was apparent on the right anterior wall of the upper abdominal cavity, unambiguoulsy indicating a 1.4 cm tumour confirmed in the CT scan. There was also a suspicious 0.7 cm diameter dark spot in the lower right lung lobe, apparent in the CT, but not in the PET. This could also be a tumour. My latest CEA had risen again, this time to 16.6 ng/ml. It is clear that the cancer has indeed returned.

A number of options were discussed with my Wellington oncologist, Andy Simpson, given the limited drug strategies available. In short, all that is left, for FDA approved treatments, is the Avastin-irinotecan-capecitabine regime which had some effect in 2010. We are hopeful that this may provide some respite (it cannot cure) at some time in the future, provided that my cancer cells have not evolved to be immune to these drugs. The question is "when does one hit the cancer?" In metastatic disease, where management rather than a cure is sought, it is not necessarily obvious that one hits early. And so, we have settled on a "wait and see" period, allowing me to travel to the UK in early July to spend time with my family there. Miang and I had originally planned to return in late October. However, a more likely target might be late August, allowing me to begin treatment on my return.

Andy is very wise and welcomes other opinions. Indeed he sought that of Richard Isaacs, my Palmerston North private oncologist, who supported the "wait and see" strategy. I did my own second consultation with a top Johns Hopkins oncologist at their Singapore international centre. He concurred, and indeed could not fault the entire treatment strategy to date.

There is a hopeful scenario, one so optimistic as to stretch the limits of credulity, and it goes something like this. The lung spot is an artifact, perhaps a fungal infection. The upper abdominal tumour is the sole tumour left after the peritonectomy. And over the next few months that tumour may grow locally but doesn't spread. Now, if you believe all that you are probably someone who buys lottery tickets in the hope of a win. But suppose, for the sake of it, we win that lottery. Then surgical excision removes the last remaining cancer and I am cured.

OK, let's take a reality check at this point! I have had metastatic cancer and, despite the brilliance of the peritonectomy surgeons, it is most likely that in addition to my singular evident tumour, cancer cells lurk in multiple sites in anticipation of future multiplication and angiogenesis. In that much more likely scenario I am fighting blind, hoping that my own immune system might finally wake up, despite previous failure, and surprise us all. Is there just a chance that I could give it a little help?

So what are my strengths at this phase of the contest? First, in ignorance of the scientific data, I would appear to be in rude good health. Second, I have a supreme intelligence tool, a simple, immediate and highly sensitive indicator of the presence of the cancer cells, that of the perfect-track-record CEA blood test. Third, I have a lull in the application of scientific medicine weapons during which I might try out some unproven but interesting devices. Let me be clear, I do not deviate one step from my trust in evidence-based medicine. There are only two types of medicines-those that work and those that do not, and double-blind randomized placebo-controlled trials on multiple patient cohorts can provide the definitive evidence that gives us confidence as to which class a proposed treatment belongs. Thus fails homeopathy and its soul mates.

But I am not a randomised cohort. I am Paul Callaghan, EYD7212, and I get one chance at life. And I am a scientist with my own experimental tools relevant only to me. So I can try an experiment on myself. Is there a potential drug which has some plausible physical basis of action, where safe doses are known, and whose side-effects are minimally invasive of life quality? Because if there is such a drug, why would I not try it during my chemotherapy lull, given that I have a surefire test of its efficacy?

There are two, maybe three, and ideally I would try them separately, but given my limited time window, I will try a couple simultaneously, the obvious downside being that if their combination is effective, I shall never know the true source of my salvation. But that is a downside that I, being the "n=1" that I am, will be prepared to live with, if you will excuse the pun.

I am now undertaking that experiment. Details will follow that may amuse you as much as they do me.

Malaysia and Singapore

For the past week, Miang and I have been in Malaysia and Singapore visiting family and friends. This is my fifth time in South East Asia and it is always a stunning experience being plunged into a completely different world, different from New Zealand obviously, but also enormously different within itself as I am always aware when crossing the causeway from Singapore to Johor.

After a night in Singapore with Miang's half brother Miang Wei, we were driven over to her Malaysian home village of Renggam where her stepmother lives with Miang's half sister Miang Hong. If you are by now confused, let me remind you that all of Miang's siblings are named Miang, and she should properly be named Miang Hoong, not to be confused with her Renggam half-sister, Miang Hong, nor while I'm at it, one of her brothers, Miang Hiong. Of course her family call her Miang Hoong, or in the case of her younger full brother, Miang Chiang, as "Sis Hoong". Miang Chiang is known to the family as "MC", in that most efficient of Chinese customs, reducing names of the truly famous to a minimalist acronym (KL for Kuala Lumpur, JB for Johor Baru, and so on).

While in Renggam we commemorated the third anniversary of Miang's father's death. This we did through a simple indoor ceremony with joss-sticks at the shrine inside the family home, and then by burning various items of value to her Dad in the street outside. Those items included paper money (of the Monopoly variety) and, burnable cans of her father's favourite beer, Carlsberg. Yes, only in Asia can you buy burnable beer cans for such purposes!

On this visit, with Miang's other half sister, Miang Key and her husband Daniel occupying the spare room in the Renggam house, we stayed in the nearby town of Kluang, taking the opportunity to climb up part of the nearby Mountain of Gunung Lambak. It was also a chance to do a little shopping, to have our eyes tested and to buy two pairs of fashionable glasses with graduated lenses, all for the princely sum of NZ$350! Of course we ate "a la famille" lunches and evening meals of such irresistible tastiness that we both added 2 kg over our week away.

Miang's brother, Miang Hiong, known to us all as William, is a leader of early morning Qigong and TaiChi exercises in a local Kluang park. We were up at 6 am to join him in the darkness before dawn. In his Qigong moves, William takes on a whole new persona of graceful leadership, with the large crowd of participants doing their best to follow his every move. Miang is the shadowy figure on the right in this video.

After Kluang we travelled back down the peninsula to Kulai to take part in an informal reunion, a chance for me to meet Miang's school classmates, and then to MC's in Johor Baru for a night before crossing back over the causeway to Singapore, where we were hosted by Uncle CC and Auntie June. Of course, this was an occasion for more feasting, the picture showing from left to right Uncle Hew, Auntie Peak Chu, nephew Kelvin, MC, Auntie June, Uncle CC and yours truly.

And no evening in Singapore is now complete without a visit to the just finished Marina, with the glittering Casinos and Sands Hotel across the water, complemented by the Lotus-like shape of the new Science Museum. Singapore is truly staggering, a city state of no natural resources with a per capita GDP of US$36,000 per annum. I spent my plane journey back home reading a 2011 book of interviews with the architect of Singapore's rise, Lee Kuan Yew. To quote "What makes a country grow is talent. We must attract and retain talent. Then we have vibrancy. How do we compete with Chinese and Indians where we know they are going to enter in a big way? We succeed by staying in little niches, securing qualities which they cannot match, like credibility, reliability, intellectual property and the rule of law."

Now where have I heard that before?