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.