The plateau?

My latest CEA data point confirms our suspicions from last cycle, that the previously reducing level may have "plateaued." Certainly the rapid reduction seen in the first two cycles is no longer apparent.

What these data suggest is that there may not be a continuing benefit from further chemotherapy.
However, in consultation with the hospital oncologist, we made a decision today to continue with cycle 6 but to delay this by one week to allow my bowel to fully recover. This means I have another drug-free week to enjoy!

On the knife edge

I have just passed through the critical days at the end of the cycle when my bowel collapses. Well, it certainly collapsed on two out of the last four cycles, and sent me to hospital.

This cycle we tried a new strategy, namely, stopping the oral chemotherapy medication the moment the diarrhea began, in this case, on schedule at last Thursday. Since then I have been fighting the battle with the usual anti-diarrhea drugs, and a couple more. On Monday night my temperature started to rise close to the danger zone above 38.0 C. It hovered at 37.7 for an hour then slowly drifted back to the low 37s. The same happened on Tuesday night.

Today, Wednesday, the temperature was normal and my colitis pain was receding. The diarrhea seemed to have stopped. But this evening, I am again hovering at 37.7 C, occasionally hitting 37.8 C.

This teetering on the knife edge is becoming tedious. My prediction is that by tomorrow I will be back to the safe zone and ready to start cycle 6, albeit delayed somewhat. My poor bowel won't take capecitabine until several more days of recovery.

Given a successful navigation of tonight, this would make the score 3-2. To Batman.


PS: Thursday has passed, calm has returned, I am on the mend!

63

So yes, it was my birthday this week. I have made 63. My new target is 64.

It was an enjoyable week, though sadly Miang was unable to be here as she is back in Malaysia visiting family. My sister Mary came over from Melbourne to "look after me". Mary is a very experienced nurse, and has been vigilant in ensuring that I am behaving sensibly. On Tuesday this week we were joined by my older sister Jeanine and her husband Murray, who drove down from Tauranga to be with us for a few days. It has been a wonderful family time.

Highlight of the week was a lunch at One Red Dog organised by Mark Hunter and the gang from the lab and Magritek. My family joined in (Jeanine left, Mary obscured) and had the chance to meet some of the remarkable younger generation that I work alongside.

Normally, as we get older, birthdays lose some of their charm. For me, this one felt like a milestone.

Toly Pavlovsky-Meersmann

This wonderful young man is my friend Toly, the son of Thomas Meersmann and Galina Pavlovskaya. Thomas and Galina, who are based in Nottingham, UK, spent a 6 month sabbatical with us a few years ago, when Toly (Anatole) went to Te Aro School. Now they are back again to help us with our "hyperpolarization" setup, and Toly has given up part of his UK summer holidays to go back to Te Aro, where he has met up with old classmates.

Toly is a fine soccer player and when he arrived in New Zealand a few weeks ago, presented me with some precious soccer cards of two of our famous All Whites players, Ryan Nelson and Shane Smeltz. Here Toly is eating pizza at a birthday celebration which we held this week.

I have to admit, the birthday was mine. More on that in my next posting.

PS: Many apologies for a long silence. I have had my siblings visiting and have been rather pleasantly distracted.

PhD student 21 successfully defends

On Wednesday this week, my 21st PhD student had his oral exam. Stefan Hill is a scientist at SCION (previously NZ Forest Research Institute) in Rotorua and he carried out his research there and at the Australian Synchrotron in Melbourne, using Nuclear Magnetic Resonance and X-ray diffraction on radiata pine at various levels of drying. The results of his thesis show the crucial role of a very thin trapped water layer between the cellulose fibrils and the surrounding lignin and hemi-cellulose matrix, something which turns out to be of real value in undestanding the best conditions for wood drying.

The real supervision work for this thesis was carried out by two of my esteemed SCION colleagues, Roger Newman and Robert Franich. I was the link person to the University, providing overview advice and helping the process along to ensure it met the requirements of PhD. But strictly, I'll claim credit for this being number 21. The picture shows Stefan (left), Roger (middle) and me at my favourite "Galleria" cafe in the university, just before the exam. The oral defence (second picture) lasted just over 2 hours. Stefan was superb, fending a barrage of questions from New Zealand external examiner Philip Harris from the University of Auckland, and from local examiner Ken MacKenzie, who also passed on questions from overseas examiner Martin Mueller from Germany. All the examiners were very impressed with the work and Stefan passed his oral with flying colours. Stefan, of course, is a very experienced scientist himself, and now continues with SCION as an even more vauable member of the team.

Having a PhD student successfully defend brings a special pride to the supervisor, even in my case, where my role was a bit peripheral, but I'm especially pleased with Stefan, who is just just such a great guy, though he was responsible for once getting me horribly drunk in a bar in Aachen!

PS: To my delight, at the end of the oral exam Philip Harris (Professor of biological sciences at UoA), reminded me that he had first met me in 1970, when he was a Graduate Research Fellow at Oxford University, and I was a first year graduate student. We were both members of Wolfson College. That was 40 years ago!

Latest CEA data and current status

This blog is mostly cheerful but it is also intended to be informative about my health status. I apologise in advance for being a little stark with this current entry.

My latest CEA data at the start of cycle 5 (linear and semi-log plots as usual) suggest a continuing reduction in the number of cancer cells. Since last posted, at 16.5 ng/ml, I have had three new data points at successively 10.3, 9.1 and 9.2 ng/ml, though the 10.3 and 9.1 measurements were made by the hospital, and not by my regular blood testing agency, Aotea Pathology, so the calibrations may not be consistent.

At the start of chemotherapy I was 78 ng/ml and so it it is clear that the treatment has had some major effect. There is a suggestion however that the benefits may have "plateaued", and I am unlikely to drop below the 2.5 ng/ml "normal" level.

The response of my cancer to the chemo has been remarkably good according to my oncologists. However, there is absolutely no doubt that this treatment cannot cure the cancer, but only delay its return. The particular condition I have, peritoneal metastatic cancer, is incurable by systemic chemotherapy. The only known option for further treatment is a new type of surgery (peritonectomy with hyperthermic intraperitoneal chemotherapy) which has been pioneered in the US and which is available in Sydney. I am pursuing this option and once my route becomes clear, I will update you all about the details.

In the meantime, I have to confess, with each new cycle I am finding the chemotherapy regime to be more and more difficult to manage. Increasingly, the nausea, lethargy and a peculiarly uncomfortable skin sensation are taking a toll on me. I am really having to limit work activities to just a few hours a day.

PS: I have just had very sad news from my good friend and former PhD student, Miki Komlosh, whose father died yesterday, after a short one month battle with stomach cancer.

Mark and Jillian's addition

Mark and Jillian Hunter have a new son, and Sam, a new brother. Thomas William Hunter was born at 3-10 pm on Wednesday 4 August, weighing 3.08 kg (6 pounds 13 oz). It's been an eventful year for Mark, with his PhD thesis submitted and a new son born.

Clearly Sam is delighted with his new brother, and the family group portrait is a classic, with Jillian, Mark and Sam quite radiant.

Sarah and Joe visit

The weekend before I was hospitalised, we had a visit from Sarah Codd and Joe Seymour. Sarah is a kiwi lass, born and bred in Palmerston North, and a classmate of my daughter Catherine. After a Physics honours degree at Massey University, Sarah completed a PhD in Magnetic Resonance with John Strange at the University of Kent at Canterbury. She then returned to New Zealand as a post-doctoral fellow in my lab, where she met Joe Seymour, an American postdoctoral contemporary. The rest, as they say, is history. Joe and Sarah, now married, are both Professors at Montana State University in Bozeman, Montana. Miang and I visited them last year after the West Yellowstone conference and had a brilliant couple of days in this most beautiful place, including Joe and me hiking a peak in the Rockies.

Joe and Sarah link together so many mutual friends who have worked in my lab, including Ross Mair, Melanie Britton, Miki Komlosh and Andrew Coy. The upper picture shows from left, Mel (Andrew's wife), Andrew, Joe, Sarah and me (Miang took the photo) outside a new restaurant, Foxglove, on Queens Wharf where we had just enjoyed lunch together. The lower pic is of me and Joe celebrating after our "mountaineering feat"!

Sarah and Joe are both outstanding scientists. Sarah did some quite remarkable experiments in my lab on dispersion of restricted fluids. Joe introduced to our group the whole field of chemical engineering, and together we published one of our most highly cited papers. Now they both have their own exciting research programmes and are attracting excellent graduate students to work with them.

Sarah's visit had added poignancy for me. Her father, John Codd, died as a result of bowel cancer, on Christmas Day 2007. John was Professor of Policy Studies in Education at Massey University, my contemporary, and a man greatly admired and respected by all who knew him. To quote from an article by Paul Adams & John O’Neill, "John Codd seemed to have the admirable knack of saying what needed to be said (no matter how socially, educationally or politically critical) without offending people. He was a deep-thinking social theorist who knew implicitly the critical importance of education and teachers in creating a better society."

PS: In the group photo I am wearing my Icebreaker "beanie", a gift from daughter Catherine.

Taiji lessons

For the past few months Miang and I have been attending Taiji (Tai Chi) classes at the local community centre, under Master Ray Poy. We have been learning the long form, with 38 different moves. Taiji is a sort of slowed down martial art, first introduced to me by Yang Xia, who encouraged me again to learn a bit more about this art when he visited me in April. I am a poor exponent, as you will see from this video which Miang took at home, as I go through about half the moves of the long form.

Hairstyles

The deed is done-a nice "number 3", which has conquered the wisps and left me a sort of stubbled bald.

I must admit, the picture is a little weird, even sinister, an inevitable consequence of holding a camera out in front and clicking backwards into the unknown.

Also featuring in this "haircut achievements" report is my nephew Morgan (my Aussie sister Mary's son). Morgan has decided to have his magnificent locks removed to raise money for cancer, in dedication to his Uncle Paul. The transition from initial to final state was much greater in Morgan's case. Indeed his sacrifice is truly outstanding.

Yes, that is lipstick on his cheek, a "smackeroo" as they say in Oz.

Finally out of hospital

I am out. Finally. In truth I haven't really been that ill, though it took 3 days to get my temperature down, following which it showed an odd diurnal variation, rising to just above 38C late each day. I was taken off IV antibiotic Saturday and hoped to be allowed home that day to celebrate Miang's birthday. I was given "leave" to go out for a few hours and so Miang and I were able to take up my booking at Hippotamus restaurant, and to take dessert in Kaffee Eis. But after the meal I had to be delivered back to my hospital bed.

The problem has been that my neutrophil count has been too low for me to be safely allowed to leave. Each day, my blood test revealed a slow increase, but in the end, we went for the "nuclear option", injections of G-CSF (granulocyte colony stimulating factor). In 24 hours my white blood cell count and neutrophil count rose so much I was now above normal levels. It's enough to make you believe in biochemistry.

I spent six days in Ward 5 North. Readers will know that I am someone who finds hospital at least interesting, if not desirable. The worst aspect of my experience this time has been witnessing the terrible distress of some of my fellow patients. My room had two beds with a dividing curtain, and I shared it with three different room companions over my time. The last was a young man whose vicious, relentless, lung-hacking cough made me think of World War I soldiers stricken with mustard gas. It was truly terrible to listen to, but worse, to contemplate the suffering that accompanied it. In the end, I was desperate to escape, and I felt ashamed of that, and only full of admiration for the kindness and care given to this man, and his agonized parents, by the nurses and consultants.

PS: The picture shows me having a tub of Hazelnut ice cream at Kaffee Eis. I think the truth is finally out regarding my hair, or the little that remains. It is Einsteinian in its wildness. Something must be done!

Progress

Hi All,

Can you believe it, it is still me and I am afraid you will have to bear with me for a couple more days until Paul gets his acts together or generates more neutrophils (white blood cells that form the essential part of the immune system). He is on the right track though. His neutrophil counts has increased from his pit bottom of 0.8 when he was admitted in the ED to 1.0 yesterday and 1.2 today. Once the body's immune system kicks in, the body temp would go down, hopefully. At the moment, Paul has to be infused with different cocktails of antibiotics to fight the infection since the hospital could not identify the source of the infection that has been keeping his temp up. (Note: Neutrophil count of 3.5 x 10⁹/L is an average for healthy people).

Other than that, Paul seems to be comfortable under the care of the hospital. Below are photos of him progressing from the battered arms on the first day, to enjoying his lunch and reading DomPost in bed, to working on his book and talking with sister Mary from Australia at the same time. The other laptop belongs to Miang, who works alongside him to keep him company. Life is not totally bad, is it?

Paul is doing better

Hi All

It is me again because Paul is still in the hospital. His temp has not come down yet but his diarrhea has finally come under control in the last 12 hours. He is feeling much better and looking much more perky. However, he is feeling very tired from the diarrhea and dozy from the fever.

As usual, Paul is keeping his keen eyes observing all the happenings around him. He is fascinated by the hospital and the people in it. The nurses are beautiful and kind, except that they have poked too many holes in his hands for blood and IV lines. My heart aches to see the pain he has to endure. But Paul is such a brave man, not a tear was shed.

I did my routine before I left him this evening - a double dose of reiki. I am sure he will right tomorrow.

Good night and many hugs to all

Miang

Bam, Pow, Whack, Wham- round 4

Bam, Pow, Whack, Wham!........PLOP!

Darn, Paul lost this round. The score is now 2:2. Paul is in the ED again tonight.

He started having his diarrhea again last Thursday. We thought we had it under control till Sunday, with the BRAT (banana, rice, apple sauce and toast) diet sort of food and loads of loperamide. But he had 8 diarrhea events since this morning, despite given the maximum amount of loperamide per day. It has really taken a toll on Paul physical strength. His body temperature gone up to 38.7C after I got him in the ED and therefore they are keeping him there for observation.

But Paul being Paul. He will rise again tomorrow. Build up his energy and onward and forward for the next round of chemo, round 5, which probably will be postponed a week till his guts recover.

I am sure Paul will be back home by noon tomorrow and give you an updated posting.

Till then.................. hope you are well

Miang

Alan MacDiarmid Building opening

Last evening Victoria University of Wellington opened its new Alan MacDiarmid Building. It was a magnificent occasion, with over 20 members of the MacDiarmid family present, including Alan's widow, Gayl Gentile, seen here (photo by DomPost) with Alan's Nobel medal outside the building. The Prime Minister, John Key, opened the building accompanied by cabinet ministers Steven Joyce (Tertiary Education) and Wayne Mapp (Science and Innovation).

John Key spoke first and then I followed, pointing out how Alan had changed the New Zealand science landscape, and including the remarks "On a personal note, I have to say, that to know Alan was to love him. When he spoke with you, he gave you his undivided attention. He was genuinely humble, he was full of playful humour, and his wit found expression in his famous aphorisms, “Science is people”, “I am a very lucky person and the harder I work the luckier I seem to be”, “Will New Zealand be a leader or a follower in this 21st century of science and technology?” and Prime Minister, I know you will love this one, “Vision without funding is an hallucination.”

The building, which cost VUW $48m, is beautiful, and houses science and engineering teaching and research space, in an interdisciplinary environment. In the large foyer, Alan's Nobel medal is on permanent display, to help inspire the students.

I had the opportunity to have a good chat with the Prime Minister afterwards, encouraging him to keep the momentum going around science and technology initiatives. He was kind enough to question me about my health and, surprisingly, had heard about and wanted to know more, concerning my "Sydney option". New Zealand is an amazing place.

The picture is interesting because in the background are Gayl, and Sean McConnell, Alan's oldest grandson, who also travelled from the US to be at the opening.


PS: Thanks to university photographer Les Maiden for the PM shot. The wonderful portrait of Alan is by New Zealand artist, Marianne Muggeridge.

Miang's latest creation

In assessing my prognosis, Miang has turned to the oracle and come up with this astounding result. I am not sure which treatment will be responsible but the tentacles look favourable.

Ptolemy's Theorem and Pablo Etchegoin

Today I visited Pablo Etchegoin in Wellington hospital. He had developed a painful bile duct infection and was admitted to be given intravenous antibiotics. He was much better when I saw him. Indeed he was sitting up in bed with a notebook open and a pen in hand. I immediately noticed what looked like a problem in Euclidean geometry on the pages. "Working?" I asked. Later in the conversation Pablo returned my attention to the pages. "I decided to solve Ptolemy's Theorem", he said.

I had to scratch my head for a bit. In my teens I was an expert in Euclidean geometry, but I struggled to remember it. Pablo reminded me "It's the relation between the four sides and two diagonals of a cyclic quadrilateral. For a quadrilateral inscribed in a circle, the sum of the products of its two pairs of opposite sides is equal to the product of its diagonals.

Pablo finds hospital tedious. As a consequence he chose to solve an ancient problem worked out by the Greek Astronomer and mathematican Ptolemy, who lived in Alexandria from AD 90 to AD 168. He then explained to me his method. "I decided to use complex numbers", he said. "That means that the displacements between the vertices are just phase shifts in the Argand plane. It came out really nicely".

I was enthralled. "Poor Ptolemy didn't have complex numbers available to him", I said. "No, he had to do the geometric proof", said Pablo, who then went on to point out to me that Pythagoras's theorem was just a special case.

We had good conversation about our cancer treatments, the struggles we face, and the possible ways forward. But I walked out of Pablo's cubicle inspired again by his extraordinary intelligence, his curiosity, his physicist's love of mathematical beauty, and of course, his courage.


PS: Thanks to Wikipedia for the diagram. The entry on Ptolemy's theorem gives four different proofs, including the original geometric one.

Time for a cheerful posting

Here are my siblings. Me on the left, my younger sister Mary, my brother Jim, the eldest, and my older sister Jeanine. The photo was taken at the time of my 60th birthday.

We were all born in Wanganui, all 4 years apart in age. They are a wonderful family. Jim is a physicist as well, who inspired me as a kid to follow in his footsteps. He became one of New Zealand's most effective and respected physics and math teachers. Jim has four sons and several grandchildren. He is retired now and lives with his wife Sharron in Wanganui. "Big sister Jeanine" is the glue in the family, the one who looks out for us all and showers us with kindness. She and husband Murray ran a successful business for many years, and are they are now retired and living in Tauranga. They have three sons, and many grandchildren. And Mary, the youngest, lives with husband Tom in Melbourne, Australia. Mary has been a nurse, specialising in renal work, and now is involved in a medical research team, while Tom is a retired aircraft technician. They managed to produce a daughter, as well as a son. Mary, with her medical experience, has been a huge help to me.

I am very fortunate to have grown up with this family, and to have had their love and care through my adult life. And in recent times, Miang and I have gained so much strength from their support.

Bad blogger

I have been a bit remiss lately in not keeping my postings up to date. In truth, I've been having a bit of a rough old time on the chemo, feeling extremely fatigued, and a bit lacking in inspiration. However, I intend to drag myself out of the slough, lift my spirits, and communicate more effectively. I will be a better blogger!

Sydney foray

It's been a long silence since my last post. The flight to Sydney went OK and we were met at the airport by Miang's Uncle Andy, his daughter Lily and her husband, Anthony. The three of them live up in Curl Curl on the North Beaches about 30 minutes drive north of Sydney. After my two days at St George hospital in Botany Bay, they looked after us for a couple of days before our return home last night. The picture shows me and Andy on Palm Beach, at the tip of the Barrenjoey headland. Spending time with Andy and his family was a welcome break after very intense medical consultations and tests at St George Hospital.

Andy is a retired chemical engineer with extensive business experience in the petrochemical industry, and is a wise man. We had much to talk about including quantum mechanics and global climate change! He is also very generous, in the Lim family tradition, giving me and Miang a wonderful tour of the North Beaches region in his beautiful new Mercedes, as well as treating us to one of the top local restaurants for lunch. And Lily and Anthony were the best of cousins, driving us back from the airport and hosting us for two lovely meals in their home.

The "Sydney option" is something I have been considering for a couple of months now. My Wellington surgeon referred me to the team of Professor David Morris of the University of New South Wales. David Morris is world-renowned for his radical peritoneal cancer surgery, carried out at St George Hospital, using a method developed by Paul Sugarbaker in Washington DC. I won't write more about the option at this stage. The details are a bit overwhelming anyway. The purpose of my visit was assessment, them of me, and of course me of them. Once they have reported back to my Wellington surgeon, and I have had the chance to consult with him, I will make a final decision.

Meantime, I had some good news from my Insurance company. On the basis of my written appeal to them, they have decided to make an "ex gratia payment as a one off, the reason being that the information given to you at pre-approval was insufficient"

Naturally I am grateful to Tower and have accepted their offer.



PS: I have always been fascinated by the existence of a suburb in Sydney called Curl Curl. To those of us who were brought up on vector calculus, curl curl is the gradient of the divergence of a vector minus its Laplacian. When I first saw a Sydney ferry named "Curl Curl" back in the 1980's I was amazed at how mathematically literate Australians must be. Since then I have discovered that Curl Curl was derived from the Aboriginal phrase curial curial, meaning river of life.

One Hell of a Week

For all my superhero bravado, the bowel won in the end. The diarrhea just got worse, despite the loperamide and the fluids. I saw my oncologist at the hospital yesterday. He sent me for an x-ray and, sure enough, I had severe colitis. Now I am armed with some new drugs, one to counteract the bowel cramp pains, an antibiotic course, and codeine to help "bind" me. This reversal of fortune challenged me to find the right superhero graphic in which Batman is now on the receiving end, and in the appropriate place. I am quite proud of my achievement in this regard.

The week started with some adventure. I was invited by Palmerston North Boys' High School (the old school of my son, Chris) to address their Monday morning assembly for 20 minutes. The Hall was packed to the rafters with 1700 boys along with their teachers. I have to say, I did apparently entertain them and they gave me a great ovation at the end. I understand the culture of the "all boys school", having emerged relatively unscathed from one many years ago.

Tuesday was Avastin infusion day, Thursday my blood test, and then Friday, the long and helpful consultation with the oncology registrar at Wellington Hospital. My CEA result was not exactly what I had hoped for, not a halving from 23 to 11, but a 2/3 reduction to 16.5. So I am now off the exponential decay of the first two cycles. It may be that my colitis has caused an artificially high reading this time. It can do that. Or it may mean I am starting to "asymptote" to a plateau.

An important outcome of this week's experience, which is at the same cycle point as my hospitalisation in June, is another week's delay in my starting irinotecan/capecitabine. This last week has been my drug-free week (ignoring the benign Avastin), all these bowel problems being aftermath effects. I think from now on a two week recovery period rather than the usual one week drug free, will be my norm.




So, it's been a hell of week. And I had to pull out of "Waiting for Godot" on Thursday night! But the biggest complication is that my bowel status may prevent Miang and me flying to Sydney tomorrow. I have two days of medical consultations lined up at St George's Hospital. More on that little mystery later perhaps. As for the flight go/no-go, it's decision time this evening.

PS: 7-30 pm Saturday. Decision made. We go.

Ross Mair

Some readers will know my Aussie mate, Ross Mair. Ross was a postdoctoral fellow in my lab in 1995 and 1996. He is now Head of MR Physics at Harvard's Center for Brain Science, Neuroimaging facility. Ross has just written me a lovely letter. Last year, he rode in the Pan Massachusetts Challenge (PMC) bike ride to raise money for cancer research at the Dana-Farber Cancer Institute in Boston. In an 84-mile bike ride he raised $3960. He dedicated that ride to his mother, who at the time was undergoing treatment for breast cancer. Ross's Mum has now completed her treatment successfully and has returned to full health.

This year he is riding for me! I am really honoured and delighted!

Ross has a profile page for his ride at
http://www.pmc.org/profile/RM0113

Bam, Pow, Whack, Wham

Last chemo cycle I ended up in hospital for a couple of days, following the assault on my bowel wall lining, resulting in severe diarrhea and a blood stream infection. During my third cycle I have had a slightly reduced capecitabine dose, I've tried to drink more fluid, and I've been vigilant with the use of loperamide at the first signs. On Friday I finished my capecitabine for this third cycle. I now have a week drug free (not counting the Avastin infusion next Tuesday), before we start the new assault next Friday.

Always the problems are worse just after completing the two weeks of capecitabine, and sure enough, last night the bowel struck with a vengeance. But I was ready, drugs in hand! Bam, Pow, Whack, Wham as the cartoon says. Now there is an uneasy calm. I dare the bowel to offend today. Make my day!

PS: For those of you who feel this site offers just a little too much information, be patient. Gentler postings are imminent!

Latest PET/CT

Last week I had another PET/CT scan to check on the cancer staging. This scan was taken during my third cycle of chemotherapy, having had two readings of CEA levels which suggest that the cancer cell mass is decreasing. The PET/CT basically confirmed the CEA results as you can see from the images here. On top is the latest (June 2010) image of my largest tumour. Below is the result from February 2010, which I showed in an earlier blog. The reduction in FDG avidity is clear.

To quote from the radiologist's report: "The four previously shown areas of abnormality, two on the anterior abdominal wall, one in the para-aortic node and one in the mesentery all show less avidity on visual inspection when compared to the previous PET/CT of 2/2/10. Only the two on the anterior abdominal wall show any avidity. The uppermost lesion on the anterior abdominal wall also exhibits significant reduction in size as shown on the CT component-the other lesions were difficult to see on the anatomic images. This change would suggest that chemotherapy is having the desired effect on the tumours at all sites-there are no new sites of disease. The liver remains clear of metastatic disease. The chest remains clear of metastatic disease."

In summary then, the chemotherapy seems to be having a positive effect. This is not a cure, but it could represent an extension of my time frames.

This is a journey involving ups and downs, with occasional bad luck and good luck as part of the mix. I'm pleased about the latest data, but I have had enough experience to understand the need for detachment. The next scan, or a later blood test, could easily be disappointing. If I am to manage this process, I have to resist both exhilaration and despair. "The data is the data" as we say in science. How else can I deal with this?

Footnote: It is interesting that comparison is being made with February when my CEA was 45 ng/ml, not with April 20 (the start date of my chemo) when my CEA was 78 ng/ml and my tumours were even bigger. In other words, the reduction in tumour size since I started chemo must be even more significant than evident in the Feb/June comparison above.

Dim Sum Weekend

Over the weekend Miang and I repeated Dim Sum on Saturday and Sunday. The first was with old friend Mark Warner from Cambridge, who was out here reviewing the MacDiarmid Institute. After lunch we took him to Zealandia (The Karori Sanctuary) where Mark was captivated by Tuatara, Kaka, Bellbirds and a New Zealand Harrier. Mark's delighted face says it all as he gazes at the Tuatara.







On Sunday, we had a cousins' occasion with Merle and Sam Lindsay down from Marton, and Ross Johnston up from Dunedin. Ross is the son of the oldest of my mother's 8 sisters (Doris) and Merle is the daughter of my mother's younger sister (Essie). Here are we three with the beautiful quilt which Merle had made for me, entirely out of offcuts from men's green ties. Extraordinary.

New Zealand 1-Italy 1

For those who stayed up until 2 am New Zealand time to watch this match, I doubt whether many would have slept before going to work. To those of us who slept and awaited the morning news broadcast, we awoke stunned. Italy are the world champions, and New Zealand is ranked 78th.

New Zealand took control early and scored from the first dead-ball situation in the Italian half when Shane Smeltz took advantage of glancing header from Winston Reid. Later in the first half, in a rather dubious call, a penalty kick was awarded to Italy, who equalised. But the All Whites defence, with brilliant work by goalkeeper Mark Paston, saved the draw. Indeed the All Whites almost seized a late winning goal when Chris Wood's beautifully angled shot just went past the Italian goal.

For highlights see
http://www.stuff.co.nz/3833139/All-Whites-v-Italy-highlights

What does he do with his time?

I have to admit, being on chemotherapy, I am very fortunate with my employment arrangements. Since July 2008 I have been on a James Cook Research Fellowship, funded by the New Zealand government, to do full time research for two years. My Fellowship comes to an end in a few weeks, but my university, Victoria University of Wellington, has graciously allowed me another 6 months research and study leave until the end of 2010. For much of the time of my James Cook, I have been undergoing my cancer battle, with surgery in later 2008, adjuvant chemotherapy in the first half of 2009, and now 1st line chemotherapy at present. I often wonder how much more difficult my life would be if I were self-employed, or working in a labouring job. I have had the privilege of being able to organise my work around my illness, with slow starts in the morning, days taken recovering from chemo infusions, and long periods of lethargy, with less than peak work output.

But I have had a project. What I have been doing is writing a book, a technical book, "Translational Dynamics and Magnetic Resonance", to be published by OUP. I must have been crazy to take this on-it's been a huge task, but I am nearing the end. This week I finished chapter 11, somewhere in the pages 500-600, entitled "Translational Dynamics and Quantum Coherence". I have a likely Chapter 12, though it will be a less demanding denouement, and so in a sense, I think I have essentially completed the draft. Now my task is to parse through the book, improve, tidy, correct. I hope to get it off to the publisher in a few months.

Although it's been a marathon effort, I've been lucky to have this project. When I write I immerse myself and all other concerns vanish. And I have been so fortunate to be given the freedom and the time. I am so very grateful to the Royal Society of New Zealand who administer the James Cook Fellowships, and of course, to my employer, VUW.

New Zealand 1 - Slovakia 1

Well, I guess nothing much beats this today. In the last minutes of the World Cup game against much fancied Slovakia, Winston Reid scored the header that equalised the match.

"This is the most important goal of my life," Reid told the international media. "I try to get forward more often but don't often score, so this is great."

"I actually did not see the ball," Reid said about his goal. "But when I saw it coming, I knew I just had to guide it on goal and not hit it too hard and it would go in. There was so much pace on the ball, I just had to guide it in."

To see the goal http://www.stuff.co.nz/sport/fifa-world-cup/all-whites/3816900/All-Whites-goal-scorer-an-instant-hero

The current chemo is a bit unpleasant and I feel very lethargic and jaded. I wasn't able to stay up to watch the match live at 11-30 pm NZ time, but it was a thrill to wake up to the news this morning.

Once more unto the breach, dear friends.

I have to admit being a huge fan of Shakespeare's "Henry V". Two great movies have been made from this play, the first in 1944 as a major contribution to British wartime propaganda, starring Laurence Olivier (the picture here shows the scene outside Harfleur), and the 1989 version directed by and starring Kenneth Branagh, in my view the significantly greater of the two.

So the line "Once more unto the breach" is foremost in my mind as I re-enter the chemotherapy fray, having had a week off with my hospital interlude. I had my irinotecan infusion yesterday, and already this morning more hair is falling out, though I have so little now it hardy matters. Anyway, I have been provided with two stylish "beanie" hats by Robin Dykstra (Scott Base variety) and my daughter Catherine (Icebreaker and very chic).

This morning I took my first capecitabine for the next two weeks of pill-popping, but on a reduced dose of 6 per day rather than 7. In this round of the attack, my strategy is to avoid the collateral damage of cycle 2 by four cunning ploys. These are (i) a reduced capecitabine dose, justified I think by my lower body mass compared with last year, (ii) uncle CC's recipe will be consumed as juice rather than slurry, made using a the very fine juicing machine we have bought. I have a suspicion that all that vegetable roughage on my empty stomach each morning may have stressed my bowel, (iii) more liquid. I have not been a good fellow here, and I have agreed to up my fluids intake and (vi) at the first sign of diarrhea I hit it hard with loperamide.

The crucial point is the attacks must go on just to see how far we can drive down the CEA levels. Once they plateau, to no further chemo advantage, we will probably stop the onslaught. The aim here is the "R" word, seldom mentioned by oncologists, but, given my remarkable two-factors-of-two response to the Avastin/Irinotecan/Capecitabine, now appearing in their latest vocabulary. Remission is not a cure. It is however an outward stretch of the time horizon. What more can one ask for!

More on insurance

My Swedish friend Peter Stilbs sent me this great Monty Python sketch on insurance companies.
http://www.youtube.com/watch?v=kO2R_DDZPCM
Unfortunately, Tower never offered the blonde.

Tower Health Insurance-Orwellian doublespeak

Back in February I rang my insurance company to ask if they would cover private chemotherapy costs. I was told by their representative that they would, at up to $60,000 per year. This they reconfirmed in another phone call I made to them in early April. Later in April I put in my formal application for pre-approval. I received no reply from Tower. I rang them in May and they said "no problem, your claim has been approved." My Avastin treatment began on April 20 and has continued for 3 more infusions. Then on my release from hospital on Friday I opened a letter from Aorangi private hospital in Palmerston North, the people doing the Avastin treatment, saying none of their bills had been paid. I rang Tower yesterday and was told "but it's been pre-approved-there should be no problem. We'll take this up with the claims department." In the afternoon I received a call from their representative to say that they wouldn't pay for the drug, the reason being that "it is not on the Pharmac schedule".

Now to those of you who are not New Zealanders, I need to explain. The Pharmac schedule is the list of drugs approved for full taxpayer funding via the public health system, in other words, all the drugs I can get for free. So my insurance company is telling me they will only pay for drugs that I can get for free from the public health system.

I have now obtained a copy of the policy, and the section (3) detailing medical benefit is a bit ambiguous. But sure enough, in the fine print, under exclusions on page 25, are any drugs not on the Pharmac schedule.

So yes, they are covered by the fine print, but in terms of misleading their customers by implying a benefit which simply does not exist, and by telling them so over the phone before they undertake treatment, this company has achieved doublespeak of Orwellian proportions.

If you are a New Zealander, be very wary of this insurance company.

Paul out of hospital

I am back at home now, on oral antibiotics, but recovering well. Chemo is supposed to only nearly kill you, but this time we sailed a bit too close. Most likely, the damage to my bowel lining from the capecitabine allowed bacteria into my blood. That problem is sorted but we need to let my bowel fully recover, and so, my next irinotecan/capecitabine regime, due today, has been put on hold for a week.

But look at what the latest CEA data is showing. As always the semilog plot is more informative. What we clearly see is exponential decay, which if continued, would see me below the normal threshold in three more cycles. But even more striking to the scientists amongst you must be a comparison of the responses to chemo of the adjuvant course last year with that of the first line course this year. Both courses involved capecitabine. So what is making the difference? Could it be the monoclonal antibody Avastin? (See blog Thursday April 22).

Of course, exponential decay means the cancer is never eliminated. The trick is to get the body's immune system to operate more effectively and to have the cancer cell levels reduced sufficiently for the immune system to have a chance.

I had 36 hours in planet hospital. You can holiday in the Bahamas, go walking in the Pyrenees, but if you want a total out of world experience, planet hospital is it. It started with my fast track admission through ED (what Americans call ER) with my neutropenic alert card. I was literally pounced upon by nurses and saw the ED registrar within minutes. A cannula was inserted and iv drip started, I was given a chest x-ray, blood samples were taken for culture and an oncology registrar soon appeared to brief me. He was clearly muslim, with a very islamic beard, beautifully spoken, serenely mannered, and very bright. I took an instant liking to him, and then he told me my latest CEA. It was an odd contrast in emotions-getting the best news so far on the cancer treatment, while feeling very ill. Just before midnight, I was moved to the oncology ward.

That night was a bit ethereal, the nurse (angel?) taking regular vital sign readings, using all-electronic sensors with their led displays and multi-toned electronic bleeps, the soft clicking of the peristaltic pump driving the iv, the changeover from antibiotic to saline to antibiotic, more blood samples (I had four taken in 36 hours), the musical voices of kiwi lasses down the corridor in the small hours.

The morning brought the "clatter of consultants", a team of four, with students (Wellington is a teaching hospital) and a registrar, Raj, whom I instantly recognised from last year, and greeted by name. The woman in charge made a bad start. "You'll be pleased to know your chest X-ray was fine". I am wondering, does she think I have rectal cancer (it tends to metastasize to the lung). "Do you have a bag?" Oh dear, a colostomy bag-has she read my case notes? "You have rectal cancer, right?" I explain to her about my large bowel tumour, the subtotal colectomy, and my precious 40 cms of sigmoid colon (do I sense a gleam in Raj's eye? The students are dutifully impassive. God knows what they are thinking). "How is your urinating?". "I'm an old guy, I have an enlarged prostate. My peeing is pretty dreadful, but I guess that's life."

They moved on, but on the way out, Raj broke into a big smile and asked me if I would like to try a pill to "assist the flow". I gave him the thumbs up.

In the morning, Chris rang while I was being attended to by an exceptional young kiwi nurse, Patricia, whose professionalism and dedication I will soon reveal. "What antibiotic are you on?" he asked. "What is it?", I relayed, "it's my son, he's a doctor". "I guessed", she said, "Imipenem". "I'm impressed Dad", to which she added "It's the cluster bomb of antiobiotics".

It took 24 hours to get my temperature to drop below 38.5, different nurses during the night shift, but Patricia in charge during the day. During this time my occasional diarrhea continued. "Paul", she said, "I want to come and watch you poo. I'm an expert on pooing and there is so much to be learned from watching it." " I promise to invite you", I replied (stunned). One hour later I am in the toilet, when I hear a knock on the door. "Paul, are you pooing? Let me in." Now that is dedication.

Miang is just brilliant in the hospital support role, giving me wonderful encouragement, though she was clearly concerned. I was finally able to ring her late Thursday night to tell her that my temperature was heading down and I was starting to feel much better, and to text daughter Catherine, walking in Italy, and worried about her Dad, that all was well.

Next morning the "clatter" was led by Raj. "Before we start", I said, "that little pill-I didn't pee like a 20 year old, but the flow was great!". He beamed a big grin. He did the usual examinations, invited the students to listen to my fascinating bowel, delayed chemo for a week, and discharged me. My cell phone buzzed, and I chatted with sister Jeanine, also relieved to hear I was OK, then Miang arrived with nephew Yong and drove me home on a beautiful Wellington day.

PS: I wasn't and I didn't.

PPS: Imipenem, I later discovered, is one of those serious antibiotics that are available only in hospitals. Thank goodness they keep this from our misuse so we have something effective in reserve. By the way, don't they all look the same, a ring here, a chain there, a few hundred daltons in mass?

Paul in hospital

This short note is to let you know that Paul is in hospital. But he is okay now. He was admitted to the ER when his body temp was staying up at around 38-39 for most of the Wednesday (2 June) evening. The hospital ran a series of tests and has since kept him in the oncology ward until his temp is to be stabilised below 37. He was put onto an antibiotic drip right away.

We were quite worried when Paul's temp was staying at 38 for over 24 hrs since his admission. However, he called me first thing this morning that his temp has dropped to 37 last night and stabilised since then. Phew. That's a sleeping pill night, for me.

I think it must have been the reiki or hand waving that I have given him yesterday before he went to sleep. Whatever it is, it made him smile and that could have cured him. He would have other explanations for you when he gets home. Hopefully in the next 24 hr.

I want to thank all of you for giving Paul so much love. Miang

Loperamide: not for the faint-hearted

This little molecule is known as "Loperamide" (4-[4-(4-chlorophenyl)-4- hydroxypiperidin-1-yl]- N,N-dimethyl-2,2 -diphenylbutanamide). It is currently my new best friend. Let me quote from its Wikipedia entry: "It works by decreasing the activity of the myenteric plexus, which, like morphine, decreases the tone of the longitudinal smooth muscles but increases tone of circular smooth muscles of the intestinal wall. This increases the amount of time substances stay in the intestine, allowing for more water to be absorbed out of the fecal matter. Loperamide also decreases colonic mass movements and suppresses the gastrocolic reflex."

The reason I'm currently well-disposed towards my friend Loperamide, is that it is counteracting one of the nasty side effects of this little molecule, Capecitabine.
(pentyl[1-(3,4-dihydroxy- 5-methyl -tetrahydrofuran -2-yl)- 5-fluoro
-2-oxo-1H- pyrimidin- 4-yl] aminomethanoate).

Capecitabine is the molecule which is supposed to be killing my cancer cells, Unfortunately, it also damages the lining of the bowel, a side effect described, charmingly, as, "Gastrointestinal: Diarrhea (sometimes severe)". I've just had four days of this side effect, and it is Loperamide which is currently preventing my dehydration demise. I have to admit, it isn't too much fun and I am feeling exhausted.

The problems are worst at the end of the two weeks of intravenous and oral drug taking, and at the start of my one week drug free (if we ignore the Avastin, which, being a protein, barely counts in nastiness). These oncologists know just how much to give you! The next few days are a race to recover body and immune system function before the next onslaught, this coming Friday.

Oh I forgot to mention the nose bleeds, numb soles, sore gums, nausea and lethargy. I just would hate you to think that chemotherapy is all beer and skittles.