Irinotecan infusion

The new Wellington Hospital has a brand new Blood and Cancer Centre. In my three week chemo cycle I have two Irinotecan infusions on two successive Fridays in that Centre. This picture is me today*. Notice the difference from Palmerston North. Here we have a pump-driven system rather than gravity feed, and most interestingly, infusion through the hand rather than the forearm. The bag on top of my arm is warmed and is provided for comfort.

My oncology nurse Allie explained to me today the reason for the hand infusion protocol. First, though more uncomfortable than the vein in the arm, it gives a better warning of problems, for example leakage. But most importantly it is more distal than the arm position, so that if there is damage to veins they have options for moving up the arm for later infusion. A mystery is solved.

Actually the Irinotecan infusion in the hand is not nearly as unpleasant as the Oxaliplatin I had last year. The latter really causes a quite sore hand and arm.

I had a surprise today when I walked into the infusion suite. I met a younger friend of mine, all hooked up on a chemotherapy line. I had no idea he had cancer. It was his second cycle, and I chatted with him and offered some encouragement. I felt like an old trooper. All the oncology staff know me now as an "old-timer".

Finally, as I sat down and got connected, with Miang sitting beside me giving her wonderful support as always, I looked around me at all the other patients. I must have been one of the oldest ones there.

*Footnote. The date on the Blog is always US time. Ah well, it's a Google world.

A glimpse from the past

Something really nice happened last night. I received by email, from the University of British Columbia, this link to a symposium held in honour of Myer Bloom, in 1993! It turns out that all the speakers were videoed, and now, in 2010, their talks have been put on the web. If you click on the name of the speaker, you get the relevant talk. In my case, I am 46, with black hair, wearing a dreadful jumper, and using overhead transparencies

http://www.phas.ubc.ca/~cvk/FLV/BloomVideo.html


At the start of the talk I show a very entertaining picture of daughter Catherine together with Myer, each holding the trout they have caught on Lake Taupo.

VIDEO ARCHIVE of
A SYMPOSIUM IN HONOUR OF MYER BLOOM
held at Whistler B.C., Canada
from Sunday Dec. 5th to Wednesday 8th 1993

PhD student number 20 completes

On Wednesday this week, Allan Rausdsepp successfully defended his PhD thesis and became my 2oth PhD completion. Allan is off to postdoctoral position in Paris in late May.

The complete list of PhDs so far is: Craig Trotter (NZ), Craig Eccles (NZ), Peter Daivis (Australia), Yang Xia (China), Andrew Coy (NZ), Craig Rofe (NZ), Jim Hargreaves (NZ), Bertram Manz (Germany), Miki Komlosh (Israel), Maria Kilfoil (Canada), Ryan Cormier (Canada), Alexandre Khrapitchev (Russia), Roger Meder (NZ), Maria del Rosario Lopez-Gonzalez (Mexico), Robin Dykstra (NZ), Antoine Lutti (France), Kate Washburn (USA), Simon Rogers (NZ), Meghan Halse (Canada), Allan Raudsepp (NZ).

Home by Christmas-a film by Gaylene Preston

On a Sunday 25 (Anzac Day) preview, Miang and I went to see the new film "Home by Christmas", made by New Zealand filmmaker Gaylene Preston. It is based on interviews with her father about his World War II experiences, reconstructed with actor Tony Barry as Ed Preston.

Gaylene is a remarkable New Zealander, who first came to my notice with her documentary "War stories our mothers never told us." Recently I had the privilege of working with Gaylene who had her professional film crew capture me on HD speaking about my life and thoughts for a total of about 6 hours. Glenda Lewis made this happen, thanks to funding from the MacDiarmid Institute.

But the point of this blog is to recommend "Home by Christmas" which goes to full release on April 29. It is truly wonderful-beautifully crafted, honest and understated. It is also a remarkable tribute by Gaylene to her family, as well as being a gift to another generation.

From the film website
"Weaving strands of poetic imagined drama, and archival footage into the interview, Preston presents both sides of her parents’ wartime marriage: the horror and hardship of battlefield and prison camp juxtaposed with the loneliness and grief of a young wife struggling with a newborn baby and a husband declared missing."

Bright Ideas Challenge

On Monday 19 April I gave a public presentation about Magritek to a Wellington Business promotion, the "Bright Ideas Challenge", where "Positively Wellington Business" tries to motivate local entrepreneurs. This 6 minute address tells something of the story of Magritek, what motivates us, and what a pleasure this has been in my life.

http://www.youtube.com/watch?v=ixa-HxqmZwY&feature=player_embedded

Andrew Coy is the CEO so I was standing in for him while he was away at the ENC in Florida and the ISMRM in Stockholm.

Start of chemotherapy (again!)

On Tuesday I had my first Avastin infusion in Palmerston North. It's a protein, a monoclonal antibody, and so no obvious side effects. It acts to inhibit the Vascular Endothelial Growth Factor (VEGF) so as to limit a tumour's ability to get blood supply. If I am lucky, it will improve my odds. It was a nice occasion and some PN friends turned up to join the "chemo party". The pic shows Warren Davis, Su Hendeles and Natalie Hope joining in the fun.

Then today, I had my Irinotecan infusion at Wellington hospital. This is a standard chemotherapy drug, a small molecule organic, which attacks the fast dividing cells. Hence, there will be plenty of side effects, most obvious being hair loss. But I came though OK and will now be relaxing at home for the weekend, and also beginning the daily use of the oral pro-drug, Capecitabine, my old friend from adjuvant chemotherapy in 2009.

I had some bad news too. Turns out my KRAS gene is mutant, not wildtype. That rules out a second line chemotherapy with monoclonal antibody Cetuximab. 60% of people are wildtype, 40% are mutant. My bad luck. Still, it wasn't all bad news. My CEA (carcinoembryonic antigen) level rise for the last fortnight was one the smallest in 6 months! I'll take good cheer where I can!

An odd postcript to the media story about the cancer was this. My public health system oncologist was really pleased with it, and said it was really helpful to them in keeping pressure on for new drug approvals by Pharmac. So maybe I was embarrassed but the greater good was served!

Laukien Prize and consequences

This week, it was announced at the ENC in Florida, that I had been awarded the Laukien Prize. John Trail took this pic of Andrew Coy collecting the prize on my behalf in Florida.

More information about the prize can be found at
http://www.enc-conference.org/
and a youtube video of the presentation can be seen on

http://www.youtube.com/watch?v=zLcrKgDW4TE

This is a huge honour and should have been an occasion for celebration here at home. Unfortunately, due to an elementary error on my part, it turned into an embarrassing media outcome.
See
http://www.stuff.co.nz/national/health/3599138/
Scientists-award-money-used-to-fight-cancer

After talking with the reporter for some time about MR, Magritek, and sensible stuff, and during a session with newspaper photographer and reporter, while I had my picture taken with the Magritek Rockcore analyser, I was asked by the reporter "so what will you do with the prize money?". I jested "I don't know-maybe spend some on medical expenses-cancer is a rich man's disease". It's a joke which Miang and I make around the home, part of the humour that keeps one going in the fight against cancer, but it slipped out. Fatal. The story went haywire once the editor heard about the remark, and coupled with my unwise openness in telling the reporter that I would be having Avastin treatment, they were able to connect their dots and create their story. Fair enough, even if wrong (I am expecting my insurance company to pay for the Avastin). Nobody's fault but my own.

I wrote a letter to the editor of the newspaper. They did print it on April 24, but of course, my 20 April story got syndicated and those readers will never see it. Hence, I am putting it on the blog for my friends

Letter to DomPost

"I did make the offhand remark “cancer is a rich man’s disease”, mostly in jest, and probably unwisely, in response to the question “what would I do with the Laukien prize money?”

What the DomPost story didn’t tell was how proud I feel to live in a country where a publicly-funded system provides high quality cancer treatment for all citizens based on need alone, to be cared for by highly-skilled professionals, to be given exceptional personal support from the Cancer Society.

Pharmac’s priorities are right. Avastin’s gains are small. But who would not want to take advantage of the best that medical science offers? And so, each patient must wrestle with issues of life extent and ability to pay.

To me, the important point is this. If New Zealand does not lift its prosperity, the gap between what our health system provides, and what medicine can offer, will widen, and these inequity issues will only get worse. We can lift prosperity by innovation through technology and science. If there is a connection between the Laukien Prize and cancer treatment, it is more about New Zealand science creating export business opportunities, than about one individual’s possible use of prize money.

Paul Callaghan

The daily regime

At the start of each day, on an empty stomach, I have this blend of vegetables, including raw potato, before heading off for a brisk walk up to the top of the reservoir behind our home in Khandallah. I have no idea if it is really helpful, but it is a regime which has been followed by Miang's Uncle CC in Singapore, who was diagnosed with Stage 4 lung cancer over three years ago. He is still going strong after a course of chemotherapy, including targetted monoclonal antibody drugs, and his potato extract every morning. My view is that the regime helps keep me healthy, and at least represents a contribution by me to assist all that scientific medicine is able to provide. Actually, the taste is not too bad, and guests in the house occasionally sample it.

The walk is followed by some more "anti-oxidant food" in the form of a home made fruit salad, as seen in the plate on the right. I have to admit that this part of the breakfast is a lot more tasty.

Lourdes Angelica Vega Acosta Montalban

Our good friend Lourdes has been visiting from Mexico, to catch up with her son Daf, who works for Magritek, and to check up on Paul and Miang. Lourdes has proposed several healthy essences and activities, some (most!) of which we have adopted. Here we are on Oriental Bay in Wellington.

Yang Xia in New Zealand

In late March, my old friend Yang Xia came from Michigan for a week to check up on me. It was wonderful having him here. Each morning he shared in my vegetable blend, joined me on my local walk, and taught me TaiChi. He was also a great source of wisdom and advice regarding my treatment.
The picture shows an evening out with the research group where we farewelled a visiting German student, Natascha. Yang is next to me in the back row.

Early April

Paul, Catherine, Miang and Glenda Lewis at Otari-Wilton, Paul and Miang on Mt KauKau, and Paul and Catherine on Oriental Parade.

These last two weeks, daughter Catherine has been visiting from London. She has been a huge help to Miang and me in managing some of the recent medical consultation process, as well as bringing a great deal of cheer to us both.

This has been an important time, with a new CT scan confirming metastatic disease, with multiple tumours in my peritoneal cavity. I am having some occasional pain and discomfort but nothing that prevents me from regular exercise and going to work. I am about to start a new course of chemotherapy on 20th April, comprising infusions of Bevacizumab (Avastin) and Irinotecan, along with an oral pro-drug, Capecitabine (Xeloda). Each cycle lasts 3 weeks and the entire course will last 6 months.

Miang and I are in good spirits. I am continuing to work, mostly on writing, but also interacting with my research team at Victoria University of Wellington.

First Blog

This is my first blog. The blog site will help friends and family follow my health situation, as well as catching up on other items of interest.

The picture is of me and Miang in Grand Teton National Park, September 2009. That holiday, in which we visited 5 Parks was simply wonderful.

In November 2008 I had surgery for bowel cancer. Unfortunately the tumour had reached the serosal layer of the bowel wall and some cells must have contacted my abdominal interior. After adjuvant chemotherapy from January to June 2009, my blood carcinoembryonic antigen (CEA) levels never quite returned to normal (<2.5 ng/ml) and in October 2009 started to rise rapidly. A CT scan in November appeared clear. However a PET-CT in early February 2010 showed metastatic disease, with a number of tumour deposits in the peritoneal cavity. This type of disease has a poor survival rate.