This and that

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.)

A poor thing, but mine own

I have made a start on the memoir. Until now I have been talking about, researching, thinking about, and making notes for it – everything except actually writing it. Siblings have sent me lots of useful stuff that they have found about memoir writing. I appreciate it all. All the encouragement has been fabulous, as well! It has all helped me refine the concept, and get to grips with the actual doing of it.

One question I was asked was, is it going to be a memoir or an autobiography? These categories obviously overlap. I had always thought of memoir as something fairly contained in time. Those that I have most enjoyed have often been a record of an episode in the author’s life. (Peter Stothardt’s On the Spartacus road is an example.) Autobiography, on the other hand, has always seemed like more of a record of the author’s life; a biography written by the subject. Obviously no account of anyone’s life can be 100% complete. As a form, however, to me, autobiography aims to be comprehensive. Mine will be quite selective, and thus more of a memoir.

Over the years I have read quite a few memoirs and autobiographies, as well as straight out biographies and autobiographical novels: just about every permutation.  It is evidently a form capable of enormous variation. I have learned something from most of these. Whatever I produce will be informed by these examples, but mine as well.

I can see that I am proceeding about it in a rather subterranean way. I have made quite a few notes, including a list of episodes that seem worthy of inclusion. (This list is in tabular form, so that I can mark off the episodes that I have written, whether these have been revised, and so on.) I thought about possible structures, and even titles, and wrote all these down as well. Some time then passed, during which I didn’t write anything at all extended. On Friday, however, I felt it was time to start.

I read an article that included a useful tip from Hemingway: every time you finish, write down a pointer about where to start next time. (I’d discovered this myself when writing my minor thesis about forty years ago, but forgotten it.) I just have to keep adding bricks to the wall. I’ll be doing this on and off. When it is finished, or ready to show, I’ll tell you.

Instapoems II

Krypton

A tennis ball glows

abandoned on a lawn.

****************************************

Outside a bungalow

a porch light greets me with

automatic courtesy.

****************************************

Low sun slants

over the road

jagged cracks

like horizontal lightning.

*****************************************

Two early flowers

camellia and rose

shyly red.

******************************************

Red is the colour

of hope,

black, of rest.

 

 

Peter Mac community conversation

Update as of 2 August: the papers summarised below (and a number of others) are available on the PCFA site as videos . In order to view this content you may need to be logged into the site; if so, however, there is no charge for this.

Updates as of 3 July:

  1. I forgot to say, I won a door prize! First time ever. (A nice tea set.)
  2. Interesting article in The Age today about exercise. This article repeats many of the observations from the exercise paper summarised below.

I went to a Community Conversation at the new Peter MacCallum Cancer Centre in Kensington a few months ago. This was an event organised by the Prostate Cancer Foundation of Australia, an organization that I have linked on my Resources page. (PCFA is the peak national body for prostate cancer in Australia. They also organize the Survivors’ Groups, publish a web site with discussion boards, present webcasts, and much more besides. ) This event gave cancer patients like me, their carers, and anyone interested the chance to find out about recent research into prostate cancer.

The presentations from this day were to be made available on the PCFA web site, but this seems not to have happened yet. I will see what is the state of play and update this entry if there is any new information. Meanwhile, this is my summary of a few sessions. (What follows is based on the notes I took on the day, and doesn’t represent PCFA or other organisational policy! Responsibility for any errors in what follows is entirely mine. ) Any content in square brackets is one of three things:

  1. to do with the formatting or layout of this blog entry;
  2. my gloss on what was said; or
  3. related material that wasn’t mentioned on the day.

General

The Welcome, presented by Jim Hughes, National Chairman, PCFA, made some interesting points:

  • prostate cancer (I will refer to it as PCa from now on) is responsible for about 3,000 deaths each year. Among Australian cancers, it is the second biggest killer of men after lung cancer.
  • a TheraP trial is currently being undertaken as a partnership between PCFA and ANZUP Cancer Trials Group.
  • there are now about 45 specialist PC nurses available through the health system.  Men interested can ask their GP about this. This is obviously a great step forward in being able to give PCa patients continuing care while they are in between consultations with their specialist and GP.

The changing treatment landscape of prostate cancer in Australia (Dr Ben Tran)

This presentation gave an overview of what treatment was appropriate for what type of PCa. For the purposes of this presentation there are three main types of cancer; local (i.e. localised), castrate naive, and castration resistant. [This jargon is unpacked underneath the “ADT” sub-heading below.]

The following table attributes the main treatment options to each type. [Apologies if the tables are formatting rather weirdly; I had to paste them in from Google Docs, my MSOffice subscription having expired.]

Local

Castrate naive

Castrate resistant

Surgery

ADT (androgen deprivation therapy):

Doxetaxel

Aberiterone

Continue ADT
Watchful waiting/active surveillance Radiotherapy

ADT can be combined with radiotherapy. [Coincidentally, I read a paper just recently that looked at the outcomes for different PCa patients of this combination. See the recent post on the PCFA research blog. This link may not open unless you are a member of PCFA and are logged in.]

Robotic versus traditional methods of surgery (i.e. for prostatectomy) were discussed briefly. There doesn’t seem much difference between these in terms of outcomes.

ADT

It is known that androgen feeds PCa. ADT therefore seeks to reduce the levels of androgen/testosterone to a castration level. (There was some discussion in the Q&A segment about whether medicos could use a word other than “castration” to describe this treatment; it was felt that this word was pretty off-putting. Dr Tran acknowledged this, but doubted that there was another word that could accurately describe the effect of the treatment.)

Side effects of ADT were equivalent to a male menopause: fatigue, hot flushes, arterial stiffness, and osteoporosis. [These will not necessarily all be experienced, but are on the cards.] Exercise is a great way to deal with these side effects:

  • it can be started and stopped at will
  • it has a medium term benefit for quality of life
  • it has no impact on survival outcomes.

[For much more about exercise, see also Dr Neumann’s paper below.]

PCa can make one’s own testosterone resistant to ADT. [This is the “castrate resistant” mentioned above. Where this has not happened, PCa is referred to as “castrate naive”.]

This table lists what treatments are appropriate to each cancer type:

Castrate naive

Castrate resistant

ADT:

Docetaxel

Mitoxantrone

Sipulencel-T

Zoledronic acid

Cabazitaxel

Docetaxel

Abiraterone

Enzalutamide

Radium-223

Chemotherapy (CT) for PCa is less severe than for other types of cancer. Initial CT can improve the effectiveness of ADT. It appears to do this by inhibiting the cancer’s dividing process.

Bone secondaries, where they occur, can be treated with zoledronic acid.

The main question is how best to combine the various treatments for each patient. There is a number of approaches under investigation:

  1. Genetic. For example, the genetic marker known as AR-V7 could be predictive of lower rates of success with abiraterone and/or enzalutamide. PARP inhibitors are recruited by PCa to repair errors in its replication. [I came across a good article on the Cancer Research UK web site about these.]
  2. Immunotherapy uses the body’s immune system to fight the cancer. However, to date, results have generally not lived up to the promise. Perhaps they need to be combined with a higher dose of radiation?
  3. Theranostics “… uses specific biological pathways in the human body, to acquire diagnostic images and also to deliver a therapeutic dose of radiation to the patient. A specific diagnostic test shows a particular molecular target on a tumour, allowing a therapy agent to specifically target that receptor on the tumour, rather than more broadly the disease and location it presents” [description taken from Theranostics Australia’s web site]. An example is the recent trial of Lu-PSMA or Lutetium-177. The TheraP trial seeks to compare the effectiveness of this treatment with that of CT. (About 50% of subjects had lower PSA readings.)

DNA sequencing (Dr Niall Corcoran)

DNA is found in cell nuclei. Cancer is a disease of DNA, featuring

  • uncontrolled cell growth
  • resistance to cell death (the process that normally leads to most of our cells being replaced after several years)
  • the ability to invade and spread to other sites.

The cost of DNA sequencing has dropped enormously. In 2001, the first DNA sequence cost $15 billion dollars. A sequence now can be done in two days and cost $4,000 for a tumour.

Projects in current DNA-related research include investigation of

  • the link between genomics changes and clinical outcomes
  • drivers of metastases
  • risk stratification TP53 assay treatment resistance (the ADEPT trial).

There was a couple of interesting questions:

Q1. What about men with sudden increase in PSA levels?

A1. There is a PSA risk continuum. 25% of men with normal DNA have or have had PCa. PSA is continuously variable in the same way that height is [i.e. there is a small number of men with very high and very low PSA, and a large number with scores falling in between these extremes]. The normal/abnormal threshold needs to be specified. If the threshold is set at a low level, more cancers will be caught, but more unnecessary surgery will be performed. PSA levels will vary naturally with age, so thresholds need to be age-specific. Combining PSA with adjunct tests will give improved predictive ability. Some of the worst cancers occur in men with low PSA levels (around 2-3%). The digital rectal examination is still important.

Q2. Are there different types of PCa?

A2. Yes. Seven different molecular types have been identified. However, the differences between them are not well understood.

Exercise (Dr Patricia Neumann)

Exercise can benefit the quality of life (QOL) and muscular/aerobic fitness of PCa patients, and cause very few side effects. Some specific advantages: a reduction by

  1.  33% in Alzheimer’s risk
  2. 61% in PCa risk.

Looking again at PCa, there is

  • a reduction in fatigue
  • an increase in QOL
  • a reduction in distress, stress and depression.

50% of adults in Australia are not active enough. Why is this?

  • Doctors don’t learn about it in medical school
  • there isn’t a drug company behind it to promote it, so doctors are less likely to recommend it, unless they exercise themselves; but
  • they exercise less than the general population.

What are the weekly guidelines?

  1. Cardio; either
    1. vigorous intensity , 20 minutes in duration, twice a week; or
    2. moderate intensity, 30 minutes in duration, five times a week; and
  2. Strength training; between 8-12 reps, twice a week.
    1. This can be done either with weights or resistance bands.

Three hours of exercise a week sounds a lot, but leads to a 49% reduction in death from all causes.

For PCa patients having ADT in particular, exercise is associated with

  • an increase in vitality
  • reduced fatigue
  • reduced bone loss and fracture risk
  • reduced muscle mass loss
  • increased strength.

There was a great Q&A for this session. The most memorable part was relating to mobilization of pelvic floor muscles. [This is an important part of regaining urinary continence post-prostatectomy.] A guy asked Dr Neumann’s opinion of a phrase he had heard, intended to assist with finding the darn things in the first place. This advice was “Suck your nuts up to your guts”. (Most of the, predominantly male, audience found this hilarious.)

Dr Neumann’s answer involved standing everyone up and getting them to feel for their pubic bone in the front and sitting-bone at the back. The PFMs run between these points. I can therefore accurately describe this as a hands-on session. (The MC, Julie McCrossin, formerly of Radio National, said it was the best Q&A session she had ever heard.)

 

Instapoems

I have been putting that pen refill to unexpected use writing instapoems. What is an instapoem? I only came across the word recently, in a New Yorker review of The terrible, a memoir by Yrsa Daley-Ward. From what I can make out, an instapoem is more of a concept than a formula. It refers to a first, or early, draft of a poem, usually short. So they are either not edited at all, or if so, only lightly. (I couldn’t help myself here and there.)

I have been enjoying knocking out a few of these. Maybe they will be a sort of warm-up for the memoir that I am supposed to be writing, but which is as yet only notes and a few scraps. Because there are several of these, I have decided to give them titles from the periodic table. The titles are not assigned for any particular reason. I can’t get all the line spacing right, except in the last one, but I’m not going to fiddle with them further.

Carbon

We hold on

until we can’t

then it can be

relief

to let go.

Lithium

In love

like a pairing

you need to take place

if your love

doesn’t love you

you can’t be

by yourself.

Phosphorus

Man standing on one leg

foot to knee

like a double bass

on a spike

himself the instrument

the universe plays

Niobium

A paper shop

smells of all the sweet thoughts

we imagine ourselves thinking,

all the marks

we owe it to ourselves

the universe

to make

Neptunium

After Mahler

In the forest

I’m in a clearing

tall trees

the magic hour

seems to stretch out

as if it will last forever

a path leads out

that I have to take

wind in the trees

the grass is cool.

Manganese

Bubbles fur the bottom

of the saucepan

water seethes

just contained

sauce kisses

the gentle pasta

oh Mommy

uhmami!

Antimony

Endless manoeuvres

of the glasses

shuttling between

cold and wet

hot and dry

being handled

being alone

shut in the dark

cupboard.

Oxygen

Alexa, I’ve got
a broken heart
how do I get a cure
Hey Google
what’s the meaning of life
should I buy my wife a bracelet
so she knows
I love her
or just tell her

 

 

Little wins

I had a couple of little wins the other day. The issues that are trivial in themselves, but it is surprising how irritating they can still be.

The first and more trivial of the two was to find a refill for my notebook pen. I have a small Filofax that I am using as a notebook for ideas for the memoir and other things. This notebook has a very short pen that I bought years ago in Pen City, the wonderful shop on Swanston Street. (This pen is the perfect diameter for the pen loop in the Filofax. One that is too small just falls through the loop and gets lost; a bigger one would strain the loop or tear it off.) Much as I enjoy browsing through Pen City, I didn’t want to go into town just for a pen refill. So it was more in hope than expectation that I asked in a paper shop on Burke Road.

What do you call a shop that sells paper and pens nowadays? “Paper shop” sounds like a newsagent, but “stationer” to me means a shop with pens, inks, ledgers, notebooks, writing compendiums: every conceivable thing to write on and with. Brands like Churston Deckle, Osmiroid, Parker, Qink, and whoever made that onion-skin writing paper. Anyone who wanted to write anything went to a stationer’s. Whether it was an accounts ledger, a letter to Mum, a note on your desk calendar, a short story or a love poem, they had what you needed. After a visit there, countless words evolved from being inside someone’s head to written form, like salmon eggs morphing into fish.

The other one was working out why my new-ish tablet wasn’t connecting to public wifi (such as at shopping centres or the library). This was a puzzling problem, as the older tablet does this perfectly. I had rung Samsung tech support about it. Their first suggestion, which was to switch on automatic date and time in the settings, worked perfectly. Then the problem recurred. During a second phone call they suggested all sorts of unlikely things. You need to go home and see if you can connect to your home wifi. (I have been been using it all the time, most recently that morning.)  Maybe the wifi isn’t working at the shopping centre. (The tablet finds it and can tell me the signal strength.) Maybe the wifi is slow because there are lots of people using it. (It was ten-thirty in the morning on a weekday.) You need to do a factory reset on your tablet. (I’ll lose all my data.) Yes, but we can tell you how to back it up. (I need to be at home to do that.) Yes, you do. We’ll save your details so you don’t have to explain it all over again. (Yeah, right.)

Anyway, I figured it out myself. In the settings I could see that several apps had permissions. I guessed that one of these apps was interfering with the messages you get when you try to connect to public wifi.  No message getting through, you don’t get to accept the terms and conditions: no wifi. One of these apps was Twilight, something that gradually turns your screen less blue (i.e. more red) to reduce the amount of blue light getting through to your eyes in the evenings. I uninstalled the updates, then deleted the app. Now I can connect to wifi anywhere!

The cost of everything and the value of nothing

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.

Immunotherapy

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

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.

 

Sexing up the library

The title of this post might be taking it a bit far. However, libraries might just be getting a bit more frequently into the public eye of late. This article In The Guardian goes behind the scenes at the NSW State Library. The intrepid reporter is Caroline Baum, their first reader-in-residence. (Should the link not take you there, try a Google search on “Secrets of the library: ‘magic with livestock’ and Patrick White’s nanny’s trunk”.  “Secrets of the library” will probably do the trick; the longer your search string, the more chances to make a typo. You don’t need the quote marks.)

Does a library really need a reader-in-residence? That’s what librarians do all day, isn’t it – read? (You wouldn’t say that, of course! You know that’s a bit like saying “people working in supermarkets must eat a lot”.) Personally, I think it is a darn good idea of NSWSL to make someone reader-in-residence, particularly if that someone is Caroline Baum. Library lifers such as I used to be, until early release for good behaviour, can stop noticing the extraordinary things they work with. An outsider can come in and say “You’ve got what?”, and write about it, for the general public, in a readable way.

This is a particularly valuable thing to do when the library has archival materials. These can be a massive time and resources sink, requiring special treatment galore. If they are unbound, the boxes you put them in, need to be acid-free. The cataloguing is much more elaborate. And you can’t just slap a label on the spine and stamp the thing. But these documents are unimaginably precious. Imagine not having Cook’s journals from the Endeavour, or Watkin Tench’s narrative of the establishment of Botany Bay. Somebody, some day, will want to go through Patrick White’s nanny’s trunk, too.

There is an unstated conflict for those working with rare books, special collections, or whatever they are called this week. You want people to know you’ve got them, and you don’t really want people to know you’ve got them. After all, the people who need to know about these things, like researchers, will already know, right? No need to put it too widely about. Nowadays, however, I think rare books specialists really do want to tell people about all the great things they’ve got. (Put this down to a win/win  combination of professional ethics and needing continuing funding.) They certainly put a lot of effort into cataloguing and digitising them, for everyone who has a web browser to read.

Caroline Baum’s article takes in a few of the fabulous treasure troves in NSWSL, like the Robbins collection about stage magic. Some of the cookbooks sound familiar from my Special Collection days. There was an eighteenth century one all about puddings, jellies and confections; the jelly moulds looked exactly like the ones used today. There is something very touching about holding a cookbook that has notes scrawled in the margins.  The exercise books of handwritten recipes, or ones clipped from yellowing newspapers, are even more intimate. People in a hundred badly-lit kitchens actually scribbled on, peered at, and sweated over these things. All to feed those they loved.

 

Another new(ish) treatment

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.