Of course Father’s Day is a commercialised rort and an excuse for selling more stuff. Nonetheless, siblings, and anyone without a dad handy, will probably be feeling a pang today. I still have one of Dad’s old shirts, and his dressing gown. More practically  I have been honouring our Dad in a practical way, by doing a spreadsheet about energy use.

(To bring non-family members up to speed, our Dad, David, was an engineer. Toward the end of his career, he developed a particular interest in energy conservation. Unfortunately, as in other things, he was ahead of his time. In the eighties, most people thought fossil fuel energy was cheap, and would last forever. Peak oil and global warming were unheard of out here.)

Dad therefore would have been totally across my spreadsheet, which bears the catchy title “Cooling & heating costs with split system versus separate evaporative cooling + gas ducted heating” (Aron, 2018, unpublished.) You may not find this magnum opus in a bookshop near you, if there still is one. So I can upload it to Google Drive, if anyone is interested. (No? Fair enough.)

I will prevail on your patience with a précis. We have to replace our 15 year old evaporative cooler with a newer system. This has opened a bit of a Pandora’s box. Should we replace it with another evaporative system? Or go reverse cycle ducted? This would use more power, but wouldn’t use any extra water. What are the comparative costs of these systems?

This begs another interesting question. How much water do evaporative systems use, anyway? The answers are complicated. Modern evaporative coolers recycle their water. They can’t do this indefinitely, however, as the salts in the water become concentrated. This shortens the life of the cooling pads. The point at which a cooler will dump its water varies between brands, the salinity of the water, etc., and is just about impossible to find out. Different manufacturers’ web sites mostly say: it depends.

I consulted Dr Google on this matter and found two figures for water consumption of evaporative coolers: 58.6  and 113 litres per hour. The first is contained in a paper written under the auspices of the Federal Government’s Water Efficiency Labelling and Standards Scheme. (The link points to the .pdf format.) The second is derived from post to the Whirlpool discussion list. I included both figures in my spreadsheet, as Scenarios 1 and 2. (As you do.)

How much energy do different types of coolers and heaters use? This is much easier to find out. Sustainability Victoria has useful summaries for cooling and heating .

Those still awake will be on the edge of their seats, I know, so here is the executive summary of what I found:

1. Reverse cycle would be cheaper for us, by between $239-$891 dollars per year.
2. Reverse cycle systems are more expensive to purchase than evaporative. What would the payback period be? I did two calculations; one guesstimated the extra cost of a ducted system at $4,000, the second at $8,000. Accounting for multiple variables, the payback period varies from 4 to 33 years!

Anyway, we have pretty much decided to go with another evaporative unit. This is for non-financial reasons. My beloved has sinus problems, and the extra humidity of the evaporative is better for her. We can also use our existing ceiling ducts. Refrigerant system ducts are smaller, so we would have to have some new holes cut in our ceilings, and the old ducts covered over.

This is what we were leaning toward in the first place, but we now know why this is the right answer – for us. I hope Dad would approve.

Well, I had my appointment with Dr Phillip Parente this afternoon. (He is a medical oncologist, and adjunct clinical associate professor and acting director of cancer services, Eastern Health.) We were both impressed by Phillip. He is very concerned to explain treatment options and considerations clearly so that patients understand the issues. He even drew me a sort of ideas map, explaining that his handwriting is better than that of most doctors (it is). Phillip struck us also as energetic, positive, evidence-based, and fully seized of the need to get a move on. I said that I wanted the most aggressive treatment that he would advise, and this is exactly what he wants too.

He needs to find out whether my condition is low or high volume. The latter is three or four bone spots, or any visceral disease (for example, in the liver or another organ). If this is the case, he will recommend hormone treatment plus chemotherapy. Adjunct therapies like this have significantly extended efficacy over a single treatment. So I won’t need to come back so often to repeat or have it changed over to another drug. (As he put it, I have a lot of tricks in my bag.) It is difficult to say how long the effectiveness of a treatment will be, as individuals respond differently. He thinks that, with my (relative – my word) youth and fitness, I will be able to handle the side effects easily. Low volume disease – the former possibility – can be addressed by hormone treatment alone.

So what happens next? I need another blood test, which I had on the way home. I also need another PSMA PET scan, this one at Epworth Box Hill. Phillip’s practice initially made an appointment for me on Friday afternoon. The scan folk, however, have a cancellation for tomorrow afternoon, so I will be going in then. (I have had one of these scans before, and compared to an MRI, they are a walk in the park. I don’t have to fast – although I do need to be hydrated – I can drive myself there and back, and it the scan is done in a large, open space.) After the scan, I will be seeing Phillip on Monday, when he will discuss what is the most appropriate treatment, and (I hope) start it then.

Watch this space.

 

Apologies everyone. I published this yesterday, but as a page, not a post. So no-one saw it.

I saw Pat Bowden, the radiation oncologist, this morning. The news was, as has been previously, neither the best nor the worst. The takeout: I have to have androgen deprivation therapy (ADT).

In more detail:

1. the last PSA test was 7.2, more than double the one previous to that, which was 3.4. So just over double in three months means it is obviously heading in the wrong direction.
2. I will be referred to one of two medical oncologists for the ADT. (Pat thinks they are equally good and experienced with prostate cancer. So it will be whichever of them is available first.)
3. ADT has been around for about forty years, so is a well established treatment.
4. ADT works by depriving the cancer of androgen, which is what feeds it. It is basically chemical castration.
5. ADT is known to have side effects, so I may experience one or more of these:
   1. hot sweats
   2. weight gain (most patients gain 2-3 kilos)
   3. aches and pains
   4. feeling weaker and less energetic
   5. decline in mood
6. It is delivered in the specialist’s rooms by means of an implant. The implant lasts three months.
7. ADT gives a median control time of four years until the next treatment. I asked what “control time” meant. It means the cancer being under control, i.e. not changing; see Managing cancer . So with four years being the median, this is the middle value in the range from shortest to longest control time. (Apologies if I have committed a statistical indignity here.)
8. Should it become uncontrolled, other treatments will be embarked on. As well as the existing treatment options, I could possibly participate in a trial of one or another emerging treatments, should they be suitable.
9. Cancers which are new to ADT are referred to as “castration naive” (or variations on that). They can then become “castration resistant”, “ADT refractory”, or other jargon that refers to the ADT becoming ineffective.
10. I was under the impression that this progression (from naive to resistant) was inevitable. However, only a small percentage of castration naive cancers become castration resistant.
11. New treatments are being developed all the time. As well as this, combinations of existing treatments are being tried very actively, to see if they work better together than singly. One that is potentially relevant for me is ADT in combination with a drug called abiraterone. (Pat, unsurprisingly, knew about this, and had had dinner with the author. See Osterwell, 2017 . You may be asked to register with the site. If so, I can send you a scan of the paper.) This combo has been found to give an absolute (not relative) increase in control of 8% over ADT by itself.
12. Pat was pretty positive about ADT and my cancer, saying (words to this effect) “It’ll stop it”. In my experience, specialists are not usually so forthright. (You will note he did not use the “C” word. I will settle for stopping it, though!)
13. I asked Pat what were the three things he would like me to take from the consult. His reply:
    1. We can control cancer for many years;
    2. ADT comes with side effects; and
    3. the treatment paradigm is very dynamic. So there will be new treatments available in a few years not currently available.

I will be going for the most aggressive option that the specialist recommends. Pat’s rooms are going to call both oncologists and see who is available first; I should hear from them in a few days. I still feel fine and intend to go on exercising, socialising, and all the other things I get up to. As my beloved correctly pointed out, it would be advantageous for me to lose a few kilos before starting the treatment, in case it does cause weigh gain. I will give it a go! Generally, I feel slightly daunted, but relieved, oddly, that I have a clear treatment path to follow.

With writing the instapoems and the memoir, I need something in which to take notes. So I have a variety of notebooks.

One of these, the little leather-bound Filofax, is small enough to go in a jacket or trouser pocket. When I started carrying it around regularly, I realised it contained a mixture of different notes, including those from medical consultations as well as my literary thoughts. So I finally got myself together to transfer the medical notes to a bigger Filofax. This holds many more pages than the little one, but is too big to haul around every day. (I would just leave it somewhere if I did.)

The small Filofax still has a range of stuff in it: memoir notes, instapoems, general thoughts and reflections, and possible thesis topics. I hit on the idea of sticking a different coloured tag on each of these categories. When I want to tidy things up, the Filofax format will allow me to put each of these things together. (Eventually, I will get some tabs and another notes insert; I will do this when in town on Monday.) At present, though, they are all mixed in. The colour coding saves me from looking through the whole notebook each time I want to find something.

Among my blessings is that I am not having any pain or other effects from the cancer. One thing I am experiencing, however, is what people call cancer brain. (There is a nice little paper about it here ; the author calls it “cancer brain fog”.) I am, at times, very scatty: starting things and forgetting them, then coming back in and being reminded of them. That kind of thing. The paper I linked to above gives some good strategies. All the usual suspects get a guernsey; exercise, mindfulness practice, creating visual reminders of tasks to be completed, a balanced diet, sleep. (I’ve been working on the last one for about twenty years!)

With the instapoems, I have been naming them after elements. Primo Levi’s wonderful book The periodic table attempts to characterise those elements he describes. In my case, however, there is no symbolism involved. It’s simply that the periodic table is a useful source of names. (I don’t think I will use boron, though, lest it describe the effect of that poem on the reader.)

The story of how the periodic table was developed is one worth reading. There is a very approachable book for scientific illiterates like me, The disappearing spoon: and other true tales of madness, love, and the history of the world from the periodic table of the elements, by Sam Kean. I found and, on the second go, printed out a one-page copy of the periodic table, so that I won’t double up on poem titles.

The poem which mentions Min Kym was inspired by her memoir Gone: a girl, a violin, a life unstrung . There is a synopsis here . Recommended. (All these links, except the last one, point to records in my local public library.)

I know I said I would talk about the Peter Mac-sponsored “community conversation” about PC last week, and I will, I will! But first, there is some good stuff coming out about surgeons’ fees. Among the questions asked: how much do operations cost? If you have to have an operation, is there any way in which you you can predict the cost? Are more expensive operations better?

First there was the recent Four Corners program (which I have recorded, but not seen; there is an article by Brigid Anderson and Norman Swan on the ABC web site covering some of the dicussion.) Then there was the Fairfax press article covering much of this ground, but with some case studies. (If these links don’t work, a search on “Your medical bills: Out-of-pocket costs, hidden fees and who’s to blame” and “Egregious Sydney surgeon bill” will bring up the articles.)

Basically, it is like getting your car repaired: if we’re talking about a vintage Ferrari, that is. The number of people who work on these things, and who know whereof they speak, is small. So there is not an abundance of competition.

The analogy falls down from this point, unfortunately. You can drive your vintage Ferrari (assuming it is ambulant) to another garage and get another quote. To do this with another medical specialist requires returning to your GP for another referral. (They will usually not know which specialists charge how much, so it is really taking pot luck.) However, even if you decide to do this, you obviously have to wait until the second specialist has an appointment. And if you have a condition like an aggressive cancer, panic can easily set in and you think “I have to get this fixed now!”.

So there is a number of ways in which the market economy analogy doesn’t apply. One is the relative lack of competition. Another is the absence of perfect information on the part of you, the consumer of the service. Specialists are unlikely to advertise their prices; as far as I know, there is no comparethemarket.com for medicos. It is difficult, also, to calculate the value of the service being offered. What value would you put on your life?

Once one has chosen a surgeon, who generally operates at a particular hospital, the costs don’t stop there. There are anaesthetist’s fees, pharmacy costs, and of course the costs associated with the hospital stay itself. I was fortunate in that our health fund covered the last of these. Everything else was pretty much an out of pocket expense. The main elements of the surgeon’s fee were clearly disclosed up front; even so, there were a few surprises.

So, putting all the costs I was up for together, I got out of it for well under half the figure quoted in the SMH article. Survivors’ groups are a good way to find out how much other guys were charged for what you had. This reinforces my view that my operation wasn’t that expensive. (Fancy things like robotic surgery are more expensive, and, from what I have read, and heard from people who have had it, don’t confer any additional benefit.)

I’m not against surgeons being well remunerated. They do a job that, if they get it right – and they are more likely to than someone without their training and expertise – will save your life. I think a lot of surgeons do pro bono work as well, something they don’t advertise. It takes them a long time to learn to do what they do. A surgical career can be fairly short while they are at the top of their game. Most work formidable hours under great pressure.

However, it’s obvious that they don’t have any incentives to charge less than what they think the market will bear. (The only sanction seems to be getting a rap over the knuckles from the appropriate college.)  How can this be addressed? What about giving them a meaningful incentive to advertise their fees on their practice web site? What this would look like, of course, I have no idea. But it is good that this is all being talked about.

There have been a couple of articles recently about immunotherapy, both in The Guardian:

• Immunotherapy could stop prostate cancer spreading, trial shows
• Doctors hail world first as woman’s advanced breast cancer is eradicated

OK, the second one is obviously about breast cancer. However, I include it because I think it is relevant, and because it has a longer explanation (with graphics) of how immunotherapy works.

For those who can’t open these links – and let me know if this happens to you – here is my precis of this technique.

1. A patient with metastatic cancer has biopsies taken from their tumours, and from the metastases.
2. The DNA in these samples is sequenced to see which immune cells contain a carcinogenic mutation.
3. Immune cells from the tumours are screened to find those that target the mutations.
4. Millions of DNA cells are cultured containing the immune cells that target the mutation or mutations. These “healthy” cells are then injected back into the patient.

This technique avoids any issues with rejection as it is the patient’s own genetic material being injected back into her. It also seeks to address one of the big mysteries of cancer: how a mutated form of DNA escapes the surveillance of the body’s immune system in the first place.

As the second article points out, this particular technique has only been used successfully in one patient. However, more than a third of the 250-odd subjects in the prostate cancer trial were still alive after a year’s treatment, and 10% were showing no further growth in their tumours. (These subjects all had advanced PC.) There are aspects of immunotherapy that are not well understood, such as why only about 20% of PC patients respond to it. Nevertheless, it seems promising. My GP had mentioned immunotherapy to me, when I last saw him, as something to keep an eye on, with the view to participating in a trial. I have since joined a database of patients interested in being subjects in trials of new treatments.

Developments such as this justify the objective of keeping PC patients alive as long as possible. Hardly front page news, I know! But I gather there is a particular strategy to use treatment A, even though it might not halt the cancer, but in order to defer the use of treatment B. The longer it is before all the therapeutic shots have been fired off, the more likely it is that patients can benefit from techniques still at the experimental stage.

I went to a very interesting day, labelled a “community conversation”, about new PC treatments (and general issues in PC) organised by the Peter Mac. I will write that up more fully in the next post.

 

There has been a bit of a run on prostate cancer treatment stories in the Fairfax press. See Hoping and praying the PM will promise to deliver on prostate cancer in the AFR.

(Keeping It Nice note: when you follow this link, and if you are not a subscriber, you will see a banner at the bottom of the screen requesting that you become one. However, when you move down the screen, the banner retracts. It may stop doing this if you’ve followed links to the AFR more times than you’re allowed to, without taking out a sub!)

The story is about Xofigo (radium 223) and the tortuous path to getting it into clinics via the PBS. The treatment was approved four years ago, but there has been a largely technical hitch in its being made available at a subsidy. (You can have it privately for about $60,000.) A shout out to the Australian Advanced Prostate Cancer Support Group, whose founder Jim Marshall is among those getting into Malcolm Turnbull’s ear to break the deadlock. I will link to this group in Resources . In a later post from AAPCSG, the PM has apparently undertaken to create legislation to allow Xofigo to be listed on the PBS by the end of the year.

A word about terminology. What is the difference between non-advanced and advanced prostate cancer? In the latter, the original disease has spread or metastasised. Metastases can be to local or distant organs. If the former, it is localised stage IV or D1. If the latter, it is metastatic stage IV or D2.

This article appeared in the Fairfax press today. It contains some background about a new prostate cancer treatment. It also gives some insight into which treatments are and are not brought to market by the handful of pharma companies that control the development of new medicines.

I had heard about lutetium through the Prostate Cancer Foundation of Australia (linked in the Resources section of this blog). The following excerpt from a paper given by Professor de Bono at the European Society of Medical Oncologists’ conference in September 2017, is lifted from a message to a PCFA discussion list. The paper concluded

this phase II trial demonstrates that 177Lu-PSMA treatment for patients with MCRPC who have failed standard therapy provides encouraging response rates with acceptable toxicity, in addition to improved QoL and pain reduction. Based on this trial, we eagerly await the results of larger studies with long-term follow-up.

Some glosses:

• MCRPC = Metastatic Castration Resistant Prostate Cancer
• QoL = quality of life

Hormone therapy, also known as androgen deprivation therapy, is basically chemical castration. This is one of the “standard therapies” that have failed those in the lutetium trial. In other words, lutetium is, at present, a last resort. (Not that this makes it any less desirable for those participating in the trial!)

The discussion attached to The Age article linked above had an interesting further observation about PSA testing. (One needs to log in to the web site to read this discussion.) One of the posts claimed that the PSA test was a less accurate predictor of prostate cancer than a biopsy. A response observed correctly that, for men in whom cancer had not been diagnosed, a high PSA score is not necessarily an indicator of prostate cancer. In men in whom prostate cancer has been confirmed, however, PSA tests are routinely used to assess how effective a treatment has been.  So in terms of how “good” the PSA test is, it depends if one is talking about it used as

• an initial screening test, or
• a test in men with confirmed prostate cancer.

PSA should not solely be relied on as a screening test. It is routinely used in the latter context.

I have had about five PSA tests in the course of my treatment so far, and a biopsy as well. The PSA sends up the red flag for the possible presence of cancer, the biopsy  reveals the location and type of cancer. You wouldn’t do a biopsy without an elevated PSA score. (In my case, this was confirmed by a second PSA test). The PSA can be done in a few minutes at a pathology centre; my biopsy was performed under a general anaesthetic. One can’t replace the other. They do different things.

Preface: I emailed the following to immediate family. I have reformatted it a bit, but there is no new information, so they can skip this post. For the rest of my extensive readership, I should explain that I wrote this originally on my phone, hence the reference to auto-correct.

My beloved and I saw Pat Bowden, the radiation oncologist, today. The news was not too bad. The main points:

1. The PSA is still elevated; I didn’t write down the score, but from memory it is 3.9 or so.
2. However, the rate of increase is slower than before. This shows that the radiotherapy has had an effect. This effect can continue and increase over 6-12 months. Therefore what Pat suggested was to have another PSA test in 3 months, to see where we are then.
3. The main aim of the radiation therapy was to delay having hormone therapy. Apparently only 30% of RT patients need to go on to hormone therapy. The side effects of hormone therapy (also known as androgen deprivation therapy) can be such that delaying it is a good thing. Also I gather that the more treatments that are used, the fewer shots that remain in the locker.
4. The next PSA test will determine what happens next. Sound familiar? It is really like a game of snakes and ladders. I guess this was a lake, or possibly a snadder. (God knows what auto-correct will do with that.)
5. Question: Could I have another round of RT?
   Answer: Yes. However, this is contingent on another elevated PSA test, then a further PET scan to show what spots need zapping and where they are. Only patients with 5 or fewer spots can have RT. Otherwise the spots just come back elsewhere. If more than 5, it’s time for ADT.

Two typos when putting the title in and a missed letter in this sentence. I can’t wait to get rid of this Bluetooth keyboard! The batteries keep running out, so unless you have some freshly charged up, you have to stop using it. (Of course you can’t charge them in the keyboard itself.) I have had four rechargeables in the charger for about 24 hours and none of them is charged! Thank goodness I have ordered a Samsung Galaxy S3 tablet with a proper keyboard cover. I had to order them separately, an intensive search not turning up a retailer who sold them both at a non-usurious price. Why didn’t I get a Windows convertible device like a Lenovo Yoga? We have a Chromecast and it is convenient to have an Android tablet with which to control it. Why not get an Apple tablet? See the previous comment. We both now also have Android phones, so are more invested in that ecosystem.

Now that I have that off my chest, I was intending to write a notice about Norman Doidge’s book The brain’s way of healing itself. The title makes it sound a bit New Age, but Norman Doidge is a psychiatrist, researcher, author etc. In fact neuroplasticity is a pretty mainstream theory about the brain. It is based on the idea that the brain can change its own structure and function in response to mental experience. Consequently, brain functions such as movement can be controlled by regions of the brain that aren’t generally used in these functions. (One of the case studies featured a patient who had had his entire right brain hemisphere removed. He recovered the functions normally controlled by this hemisphere.) The blurb from the book describes it as the most important development in our understanding of the brain and mind since the beginning of modern science. 

This theory has a huge number of interesting applications in fields such as pain management, reduction in the symptoms of Parkinson’s disease and of MS. There is quite a bit also about the use of laser light in healing a large range of ailments, something used a great deal in the former Soviet Union. In fact chronotherapy was known to the ancient Greeks, and was revived by Florence Nightingale, who observed that patients healed faster and better in well lit rooms.

I expected the book to be quite theoretical. It does have chapters explaining the neural basis of neuroplasticity, but there are also quite lengthy case studies of people who have had treatments based on this idea to themselves. None is more fascinating than that of John Pepper. A successful businessman in South Africa, he was working long hours with a high amount of stress when he contracted Parkinson’s disease. The treatment of Parkinson’s in South Africa at that time was based on the theory that a PD patient could only deteriorate. This deterioration could be held at bay for a time with the use of the appropriate drug therapy, but this treatment was only delaying an inevitable decline.

Pepper was used to doing lots of exercise, but found that, as the disease progressed, he could do less and less. He sat in a chair for a year or two, feeling sorry for himself. Then he decided to try walking as a therapeutic exercise, and joined a group set up for that purpose in Capetown. He found that, if he walked in a very conscious way, so that he concentrated on avoiding the shuffling gait characteristic of Parkinson’s patients, his energy, co-ordination, and agility improved. When Norman Doidge met him, Pepper took him for a walk to a beach where penguins nested. They both scrambled through a narrow rocky passage and over huge boulders covered in slippery penguin dung. Pepper was in his seventies at the time. From this expedition and the conversations he had with John Pepper, Doidge was in no doubt that the latter was managing his condition in a remarkably successful way.

Subsequently, some neurologists have cast doubt on the idea that Pepper actually had Parkinson’s at all, holding that he instead had Parkinson’s syndrome, a related but less severe condition. This seemed to be based on the fact that he had improved functionality, something that was supposedly impossible for someone with full-blown PD. Ergo, he must not have PD. (This view is not held by all neurologists.) It would appear that the exercise was an important part of the lessening of his symptoms, but more so the strengthening of the neural pathways brought about by his concentration on how he was walking – a sort of applied mindfulness. Pepper does not call this a cure, and has never tried to encourage PD patients to stop taking their medication. His PD symptoms return to an extent when he is fatigued, stressed, or preoccupied; he is, however, much more mobile and energetic than before.

None of the therapies described in the book requires surgery or medication. (They don’t require cessation of the medications prescribed for the condition.) Patients using neuro-plasticity based therapies often need to practice them intensively and consistently. This obviously is a different way of healing than getting a prescription from a GP; it requires the patient actively to participate in their treatment. The book is not a diatribe against western medicine – Doidge is a GP and psychiatrist. All the discussion of medical matters in the book is well documented. Neither suspension of disbelief nor buy-in to any ideology or religion is required. This is a great book for anyone interested in being actively involved in their health.