Sir’s undetectable

There was a line of wigs or hairpieces widely advertised in the media of the 1960s or 70s as “Sir’s Undetectable”. I am hoping that someone of my vintage, or thereabouts, can confirm (or otherwise) that I am spelling “Sir’s” correctly with the apostrophe after the “r”. These products were legendary in our family as “Sir’s detectable“!

Dr Google can only turn up a Yellow Pages advertisement for “Sir’s For Men Wigs & Hairpieces” in Baulkham Hills, Sydney, which assures us that this is “A Name You Have Relied On For Three Generations”. My curiosity being aroused, I turned to Trove, where I performed the following search . This only found results from advertising in the Canberra Times from 1980 onwards. These advertisers of this era were unsurprisingly unsure about whether to spell their product “Sir’s”, “Sirs” or even “Sirs’ “, resorting to all three spellings in the 19 ads retrieved. That apostrophe was indeed a pesky piece of punctuation! Is there a grammarian in the house?

There is indeed method behind all this tonsorial nostalgia. My last PSA result repeated the previous one, I think it was, as 0.01. Apparently this amounts to  being undetectable. (I had been hoping for the “bagel score” of 0.0, but I guess the .01 part is a courtesy amount, rather as people refer to retired military or politicians by a courtesy title.) Anyway, I remain happily in remission. The last chemotherapy session went well, as all the previous ones had. Only one to go, on Boxing Day! (I will be seeing the good Dr P on Christmas Eve to get the go-ahead for this final infusion.)

I am still enjoying punting the little Toyota around. The previous weekend I had the chance to stretch its legs a bit on a run down to Cranbourne. This was the first time I had had it on a freeway. It felt very stable and solid, and there was no problem keeping up with the other traffic. It isn’t the best car for an interstate cruiser, being a bit noisy on coarse-chip road surfaces. But it was definitely fun. I think what is enjoyable about it is not just the attributes of the car itself, but the fact that I bought such a wildly unsuitable and midlife-crisis advertising vehicle in so insouciant a fashion!

Still, I am trying to make it as practical as possible. I had the full size spare wheel fitted and the steering wheel re-covered at the dealer’s (these things having being folded into the purchase agreement). I also had a sunvisor and the reversing camera replaced, both under warranty. It remains a delightful car in being easy to manoeuvre around shopping centre carparks, small enough to fit in most car spaces, and very sporty in which to whip around corners. I am also getting the hang of various features like the ability to retract the side mirrors at the press of a button.

On one of these shopping expeditions, I left it in a brand-new supermarket carpark, and returned to find dark red fluid leaking from underneath its nose (or so I thought). On checking the service record, I found that the last service had occurred about nine months ago. This being, oddly, the service interval for this vehicle, I took it to my local garage for a workshop once-over. They replaced all the fluids, and declared that no leaks could be found. The previous owner having been pretty spotty with the servicing, I know it has been brought up to where it should be.

What’s been and what’s to come

Before the main part of the post, there is a small addition to the Resources page in the form of the NCI Dictionary of Cancer Terms .

We are now just a few weeks from Christmas. Those who know me will know this is my favourite time of year! (Not.) Still, it brings us to a sort-of review time for 2018.

The last twelve months has been one of numerous changes, and some milestones. I bought a new car, and we replaced some big-ticket things like the ducted cooling and the bed. The Blu-Ray recorder, and some electrical equipment, was also replaced. For the first time ever, my beloved moved to part-time employment. Most importantly, we are to celebrate our twenty-fifth wedding anniversary at the end of this year.

It has also been a huge twelve months or so health-wise. My treatment summary from November 2017 to now is the story of my cancer:

  • radical open prostatectomy
  • subsequent treatment with a physiologist specialising in continence
  • referred to a radiation oncologist, with whom I
    • had radiation therapy, with moderate success
  • then referred to a medical oncologist, with whom I
    • had androgen deprivation treatment and chemotherapy.

Of course the last of these is ongoing. However, being in remission is a great result for the treatments I have received under the care of Dr Parente and the staff of the oncology ward in Epworth Eastern. My GP has been terrific as well — someone I have been seeing for many years. Modern cancer treatment of course relies on adjunct modalities, and I feel my exercise physiologist (a recent referral) will become someone else I rely on.

My progress through these treatments has been one from specific to general, i.e. from treatments focusing on individual mets, to ones that are treating the whole body. This has been driven by the failure of the specific treatments to keep pace with the growth in the tumours.  I believe the progression in the treatments is also from ones with lower potential side effects to those with more potential side effects, but more efficacy. (Time, as ever, will tell.)

The chemotherapy  has been less of a big deal than I expected. I have dropped some social engagements in order to lessen the risk of opportunistic infection — something my immune system is less able to handle than usual. However, I haven’t wanted to become a recluse. So new year resolutions include doing a better job of keeping up with people, both individually and through groups like the local Cancer Survivors.

The chemotherapy is adjunct with androgen deprivation therapy. Their combination gives apparently an increase in efficacy of 10% in absolute terms, over either treatment singly. I started with the ADT some weeks before the beginning of the chemo, and I will continue with that as long as I remain in remission.

(On the subject of keeping up with people, we have been having a lovely time just recently having an old friend to stay for a couple of nights. She came down from Sydney for Die Meistersinger at the opera, which we all saw last night. Amazing! The second act was quite the most spectacular I have ever seen live. The orchestra played every bit as well as the Gewandhaus, whom we heard in the Leipzig Ring, and everyone acquitted themselves extremely well in the principal roles, especially Michael Kupfer-Radecky, the third singer to be engaged as Hans Sachs. And Warwick Fyfe as Beckmesser! Is there a better anywhere? Anyway, I hope that 2019 includes more Wagner as well as more socialising. Wagner’s beautiful libretto also gave me the latest candidate for my memoir title: How spring has to be.)

I need to do more to keep the remaining grey matter active next year, too. I think 2018 was the year of Karl Ove Knausgaard. (I have the final volume of his autobiographical novel sequence to finish off.) I feel that enrolling in a course would keep me at something better than if I were just doing it under my own steam. Some candidates include a couple of online masters programs in creative writing. Doing the internet course Modern Poetry over the last few weeks was great as well; it is very well-supported. Hearing the beautiful German in the Wagner last night, however, and even understanding bits of it, put this further up the batting order as something I could re-engage with.

I would also like to read through In Search of Lost Time again, with a group. Ever thought about it? Or even just wanted to see what the fuss is about? (For example, Maugham regarding it the greatest novel of the twentieth century.) I will do it via Skype, if required. So come on, all you wavering Proustians! Carpe the diem, grasp the literary nettle, and let’s get down to it. I can issue a portentous promise — your lives won’t be the same.

How low can he go?

To anyone who read the earlier version of this post, the changes to this version are just minor tweaks. 

No, we’re not talking about The Donald, but about my PSA. As of yesterday, when I had my last blood test, it was 0.03. I said to Dr Parente “That’s very hopeful, ah, I mean, very positive”. He said “It’s both!”. (He is quite the most forthright specialist I have ever had dealings with.)

This morning’s was only a brief consult, but other matters that were covered included:

  • He wants and expects my PSA to get down to undetectable levels.
  • This achievement will mean I am in remission. (There is a good and very recent article about what remission means in The Conversation.)
  • I mentioned that I had read about some patients having repeated or continuing ADT (hormone) treatment. He said, yes, that was what he was planning to do with me.
  • He said he thought I looked better than when he saw me first, when he felt I had looked rather grey. (In a piece of l’esprit de l’escalier, I only thought, when driving home, that this improved appearance was possibly because I had had my iron tablet that morning! I generally see him in the afternoon. Regardless, I  feel fine.)

Generally I see Dr Parente on the same day as that on which I have the chemo. (The latter runs on a three week cycle.) Today was the exception, as he is going away for a fortnight, and this was the last date on which he could see me before he left. Next chemo session is next week. When I have this, I will book the following session directly with the day oncology centre. This will be co-ordinated with the next consult with Dr P. on 14 November.

It is very convenient to have the consult on the same day as the chemo, particularly as we can leave the car in the car park for Dr P’s practice and walk up the hill. That car park is usually full, however, requiring my beloved to sit in the car and wait for someone to leave. So today I left the car in the Whitehorse shopping centre car park, only seven minutes’ walk from the practice. Spots there are cheap and plentiful; for about an hour, this set me back $2.

This morning’s consult was the first with any specialist on which my beloved couldn’t be present. This was because we are having two new coolers installed, something that is happening even as I write. This booking had been made some time ago, when we thought we would be seeing Dr P the following week. Given that one of us had to be home for the air-conditioning guys, it was easier for me to go to see Dr P by myself, leaving Der Fisch to hold the fort. When I came home we did a Cox and Box arrangement, and she headed off to pursue her numerous tasks, leaving me in possession.

The new coolers (one evaporative and one split system) have been installed. There are now four guys crawling all over our modest abode, resizing vent covers, testing the electricals, putting in new controllers, etc. There was a slight issue in that two of the back parts of the vent covers (the bit that the ducting fits into) were the wrong size. The correctly sized ones will have to be fitted tomorrow. I will still be connecting the stereo back up when that is finished! We have a smaller TV in the study to look at before normal service is resumed in the living room.

Less is more

Chemo session #2 today; all seemed to go well. The infusion was, as usual, preceded by a consult with Dr Parente. He was encouraging, as usual, and today had something more to be encouraging about: the PSA is down to 0.18. (It had been 2.0 previously.) So the ADT has done what it was supposed to do. I am not really having persistent side effects. The worst — and it is not bad — is an itchy and rough patch on the back of my hands, over the knuckles. I am putting a medicated cream on those, which calms them down.

I asked Dr P a couple of questions:

  1. Question: does the fact that the new metastases are in different places mean that the radiation therapy was successful in treating the old mets? Answer: yes.
  2. Question: will the dosage and/or concentration of Docetaxel (the chemo medication) increase over the six sessions? Answer: no. I am scheduled to have the maximum dosage, and this will be the same each time. If I experience worse side effects, the dosage can be reduced. The Docetaxel itself passes out of the system in 12-24 hours. Its effects on the tumours, however, continue for about three weeks. (He put this particularly carefully, not saying “get rid of” or anything like that.)

We had a gap in between the consult and the chemo, the latter being at 12 noon, so were able to go to the cafe in Epworth Eastern (just up the road from Dr P’s practice). We both had a coffee, my beloved the rest of her breakfast, and I had a toasted sandwich. Ambrosial!

Upstairs in the day oncology unit, it seemed like a full house. I got a little more information today from the nurse driving the drip. The sensation of heat around the face I had experienced during the last cycle was due to the anti-nausea drug wearing off; this is a steroid medication.  The powers that be are also pushing exercise for cancer patients. (I had heard a lot about this during the Peter Mac information session a few months ago.)  Fatigue is one of the most widely experienced side effects of chemotherapy, and exercise can, paradoxically, help reduce this. I got a leaflet about a subsidised exercise program, designed specifically for cancer patients. This is doubly apposite for me, as I have my gym membership on hold while completing the chemo, so I will be investigating this.

I was pretty tired when I got home, so had a crash for an hour or so. Still feeling fine. There is enough of last night’s meal left over for dinner for my beloved tonight. I will have cheese on toast, or possibly a jaffle, with my two allowed standard drinks. You beauty! There is more excitement coming up during the rest of the month, with a heater service, installation of the new coolers, a memoir writing class, and a get-together with some other Melbourne ModPo folk. Like, in RL! I tell you, Melbourne in spring is not for the faint-hearted.

Alert readers, and this is both of you, will notice some minor changes in the blog. I have gotten off my duff and created some new categories, and applied them to some posts. The categories themselves have been shuffled up the batting order in the sidebar, so they now sit under the “Follow blog via email” link. You may still have to scroll down to see the categories, but they are there. More to follow. No, I’m not using Library of Congress Subject Headings. I may make an exception for “Anecdotes, facetiae, satire, etc.”. (I’m not making this up, you know! Technically, this was not a full heading, but a standard subdivision. It was replaced in recent years by the much more prim “Humor”: see example.) Will I be going back and applying categories retrospectively? What do you think I am, a librarian or something?

Fine so far

This is somewhat of a place-holder message. The good news: PSA is down to 2.0, down from about 8. (This is the first time it’s headed south this year, I think.) This is the ADT treatment doing its thing. I’m generally feeling fine after the first chemo this afternoon. I have just slightly sore muscles, a bit like having been to the gym. Also subtly out of it; not unusually, though! Other than these hard to pin down symptoms, pretty good.

[This par was pasted in from an email, so may look a bit squashed up.) The chemo goes in three week cycles for prostate cancer. (Lucky breast cancer patients get it every week.) Apparently one can feel pretty ordinary in the middle week. This is because one’s red and white blood cell count are then at their lowest. That is also the week in which one is most vulnerable to infection. (The immune system is compromised by the chemo, so colds, flu etc. are something to avoid more than usually. I asked about going to meetings in that week, and the nurse said, if you know that the people you’re meeting aren’t sick, go ahead.
Anyway, I have lots of information to process. Will be in touch as I digest it all.

Dr Parente mk. II

At the risk of repeating myself, there was good and not so good news from the appointment with Dr Parente today.

(Briefly to recap: the PSA had risen in spite of the radiation treatment. So there was obviously something going on with the cancer. The purpose of the scan I had last week was to reveal what this was and where it was.)

The first piece of good news – and it is a big one – is that there are no metastases in the organs. The ones he mentioned, the lungs and liver, are clear. (I had heard that mets in the latter organ are particularly undesirable.)

The second is something I have thought of, not something mentioned by Dr P, so all the necessary caveats apply. However, the mets that were there in the last scan, in the left hip and left femur, aren’t there any more. So it would appear that the radiation treatment was successful in getting rid of those mets (or spots, as they refer to them).

The less good news is that there are five new spots, all in bone:

  • sternum
  • rib (right hand side)
  • lower thoracic spine
  • L4 vertebra
  • left sacrum (AKA the tailbone).

(I am inferring that these are all still small. I base this on the facts that they weren’t there at the last scan, and I don’t have any symptoms or pain.)

The PSA has risen a bit more at 8.6, further evidence that things are progressing in an undesirable direction.

So I am starting on conjunct hormone therapy and chemotherapy. The last time I saw him, Dr P did mention a couple of trials that strongly support this combo: STAMPEDE and CHAARTERED . So his view, which we share, is: what are we waiting for? Obviously we have to fire the big gun, as he put it. He rang the hospital pharmacy (Epworth Eastern is literally just up the road) to see if they had a box of Casodex. They did, he wrote me a script, and I have had my first one. I will be taking one of these each day for 28 days. This medication can affect the liver, so I am avoiding alcohol for the duration. (Just when I could have murdered a drink, too!)

In a fortnight I start the chemo part of the treatment:

  1. Zoladex; one injection every 3 months, and
  2. Taxetere (Docetaxel), once every 21 days, for six cycles (i.e. an 18 week course).

I have to have a blood test, and see Dr P, before each chemo session. The consult with him ended quite late, so his practice couldn’t contact the chemo people to make the first appointment. They will do this tomorrow, however, and let me know.

It is all a bit daunting, and a lot of information to process. We both found the consult fairly stressful for these reasons. However, he seems very positive. He feels that, at my age, and with my (relative) fitness, I will get through the chemo easily. Maybe this geeing-up is what oncologists do. However, I am grateful for it, for both our sakes. From here, I am just strapped in for the ride.

I just want things to be as normal, and mundane, as possible. We are taking some quotes for a new cooling system. I went to the Deakin open day yesterday, to investigate doing a course next year. I am going to a session in October about how to write a (non-boring) family history or memoir. I want to go on socialising, listening to music, fiddling around in the garden, and everything I am doing now. Obviously we will have to see how far this is possible.

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.)