Hormone treatment (ADT)

More good than bad

by feurmann

At our last consultation with Dr P on Wednesday 21st, I knew the PSA had gone up without him saying so. (When it has gone down he leads with that – when it has increased, he prefaces that with some positive news.) So it was on Monday, when, after a couple of encouraging comments, he told us the PSA had gone up a bit to 12.8.

The good news, however, was quite encouraging. I had had my three monthly CT and bone scans the preceding Monday. According to these, everything is stable. (My take on this — the hormone treatment is continuing to suppress the cancer.)

Dr P added that he was going to be away in January 2023. I generally see him every month, but in light of the scan results (and how I’m looking), he’s happy to not see me until February. This is the first time that I will have had a two month gap between consults for years. So if he feels he doesn’t have to keep such a close eye on me, for the time being at least, well and good.

Recently I read the old joke about averages, along the lines that someone with one foot on fire, and the the other foot in an ice bath, should, on average, be quite comfortable. On average, therefore, I am quite OK with this news. If the PSA grumbles along, but doesn’t do anything startling, that is all anyone can hope for. Shit happens, but we deal with it as and when. Meanwhile, we sat outside on the first warm day for ages and had Christmas a deux — which was what we both wanted. Props to those catering for and delivering comestibles to a crowd! Love and comiserations to those digesting difficult news. Both require good old-fashioned G and D — qualities I know you lot all have in spades.

12 is the new 10

by feurmann

At our last consult with Dr P, there was an unwelcome turnaround: the PSA had gone up to 12 (from the previous score of 9.7). This was a bit disappointing in that we had hoped to continue the previous slight downward trend. Putting it in context, however, as Dr P is always doing, he said the cancer is grumbling along, but the medications are doing their job and keeping the rises small. I had had the CT scans only a month ago, and the results of those had been good. He actually apologised for being a touch paranoid in having me do the scans every 3 months. I said he could be as paranoid as he liked. He said I looked great and he was sure I was enjoying a good quality of life. I’ll take his word for the former, but the latter is certainly true; I am feeling fine and being very well looked after.

Straight after the consult I went to the day oncology ward and had the Zolodex implant. This was uneventful except for a small bleed from the implant site in the abdomen. (I think I caused this by bending over to pick up the cover from something on the tray of sandwiches I had been brought by a volunteer.) Anyway, no matter: I have had this before. The nurse just put a new and bigger dressing on it, from which there have been no further bleeds.

The day after I felt vaguely unwell — nothing specific — we both always have a bit of measurement anxiety before each consult. It was a rotten day, with steady rain, so I cancelled exercise class and had a day at home, spent largely on the couch, apart from attending to a loaf of bread. The latter was successful, and the day proved very therapeutic.

We have a break from the rain today (although showers are forecast), and tomorrow is Cup Day. Because of this my Tuesday exercise class will be cancelled. So I don’t miss out on two classes in a row, my beloved has made a one-off appointment with an exercise physiologist for us both; exercise is a vital part of our maintaining ourselves in a well space. I am pushing ahead also with Proust, as per the following quote:

“We do not receive wisdom, we must discover it for ourselves, after a journey through the wilderness that no one else can take for us, that no one can spare us, for our wisdom is the point of view from which we come at last to regard the world.”

Marcel Proust, In the shadow of young girls in flower (In Search of Lost Time, vol. 2), p. 482. Translated by C K Scott Moncrieff, edited and annotated by William C Carter. Yale UP, 2015.

Steady as she goes

by feurmann

At our last appointment with Dr P on Wednesday, the PSA had continued to increase: 7.6, up from 6.9. The good news was that he thought this was (in my words) nothing to worry about; I have a cancer that is “grumbling along”. He declared himself “very happy” with how I was going, and that I looked very well — something in which he places a lot of store. He doesn’t think chemotherapy is required at this stage. I certainly have been feeling fine, apart from the odd arthritic twinge or muscular strain (no worse than usual in frequency or intensity). The hot flushes are continuing, but these seem the main side effects of my current treatment regimen.

I asked also about a Covid prophylactic called Evusheld. (This link points to a .pdf file.) Dr P said the treatment I was on wasn’t suppressing my immune system. I therefore wouldn’t be eligible for Evusheld, the supply of which is reserved for immunosuppressed or immunocompromised patients. (I’ve had my three jabs and booster anyway.)

This visit to Dr P coincided, as every third one does, with my having a new Zolodex implant. Dr P has new and very swish (but rather hot) rooms at Epworth Eastern. His new location is actually closer to the Epworth day oncology unit, where the Zolodex implants are done. The proximity will save me having to hot-foot it to day oncology on days when Dr P is running late. The implant went uneventfully, apart from some bleeding from the site. I have had this before; it was just a bit inconvenient this time because my T-shirt and top got some blood on them. The nurse put a new dressing and several layers of gauze on the site (abdomen, left hand side). Fortunately the bleeding came to a stop pretty soon, so I was able to go downstairs and pay the excess on our health insurance. Then I texted my beloved, who materialised in the RAV4 to whisk me away.

Everything else is going along absolutely as usual.

Nothing much to see

by feurmann

We went to see Dr P yesterday and the news was not as bad as we had expected. The magic PSA number is 6.8, not much of an increase on the previous one of 6.2, and certainly nowhere near doubling. So the rate of increase has obviously slowed. As well as the usual blood test, on the Monday of this week I had an all-body CT scan and a head and neck scan. (I generally have this combo every three months, so am well used to the rigmarole.) This showed one new spot, but also that an old one (on the L4 vertebra) had almost completely dissolved. So, in other words, a steady state. Dr P’s wrap-up was that the disease is stable and low volume. Chemo will not be required unless and until things go south; I am just going to continue on the existing regimen of a Zolodex implant every three months, and four enzalutamides a day. We were obviously relieved, and celebrated with a drink before dinner, which was Chinese takeaway — night off for the cook!

We have been watching Succession on Binge, which we have on a free three month trial. Good, but not as outstanding as Mare of Easttown, via the same source. I have embarked on a mini project I have thinking about for quite a while, digitising my German index cards to put onto my online vocabulary lists on dict.cc. I had hoped to use our new printer scanner for this, but while this scans the cards perfectly well, even after quite a few goes I can’t get it to save the scanned files in any editable format. (I am too cheap to pay for full-fat Adobe Acrobat, which would probably do this.) I have, however, found a workaround, involving scanning a batch of cards with Google Lens on my phone, then copying that text to the laptop. I then paste the text into a Google Sheet, massage it a bit, then upload it to dict.cc as a tab delimited file. Nerdy paradise!

Mutatis mutandis

by feurmann

We had an appointment with Dr P on Wednesday. On that date the PSA was 3.6, an increase from the previous reading of 2.9. All the comments made in the post for the last appointment (“Onwards and upwards“) apply here as well. The only new information was his reply when I asked him at what PSA score he would change treatments. He said (words to this effect) when the current score has doubled relative to the previous one. I have an appointment with him every four weeks, so, obviously, the PSA would have to double over that period. At the last consult he did a quick calculation of the present doubling rate, but it is nowhere near what he would find alarming (my words, not his.)

There is fortunately no other news. The RAV4 is still great to drive, with just a few quirks emerging in its operations. It has a powered tailgate, which can be operated from the key fob, from a button on the dashboard, or a hidden switch on the tailgate. (It is accompanied in all these instances case by warning beeps like a truck reversing). The tailgate can only be operated from the key fob or the tailgate button, however, when the car doors are unlocked. Another owner pointed out that the doors can’t be locked before the tailgate has finished closing — a process that takes maybe ten seconds. So if you go food shopping while it’s raining, you return to the car with the bags, unlock the doors, open the tailgate, load up, then wait in the rain until the tailgate has closed before you can lock the car. (This assumes you have to go somewhere else before driving off.) Of course, if you park underground, there is no problem!

At least the tailgate doesn’t have that opening technology whereby you stand on one foot and swing the other one underneath the rear bumper. (I’m not making this up! It’s quite common on Euro SUVs, I think.) This calls for good balance if you are burdened with shopping bags. I’ve witnessed people in this situation swinging a foot underneath the back of their cars, fail to do it correctly, and have to have several goes at it, becoming more peeved each time. The wonders of proximity keys!

There were a few other minor things we found mildly annoying about the car. Once it has reached 20 kilometres an hour, the doors automatically lock. One unexpected disadvantage of this is, if the car is in Park with the engine running, and someone in the front or rear passenger seats wants to get out, the driver has to unlock the doors. My beloved became quite irritated when I had to release her from durance vile. (I spent about half an hour reading the manual before I could reverse this setting. Now, when I put it in Park, the front passenger door unlocks.) At the free 1,000 kilometre service we also got the dealer to switch off the speed limit warnings, which were becoming quite irritating. We kept the warnings about red light camera intersections, though! These are but minor foibles in a car that goes about its business in a quiet and calming manner.

Onwards and upwards

by feurmann

We saw Dr Parente on Wednesday. The PSA is continuing its gentle rise: 2.9 at the last test a week before the consult, up from 2.5 previously. Dr P continued to emphasise the trajectory of the increase over the quantum of the score; the former remains low. This time he also made the following points:

  • If I were not taking Enzalutamide, the increases would be much steeper. Therefore (my words not his) it’s doing its job in damping things down.
  • I asked if I needed another scan, but he doesn’t think I need one.
  • At this rate, my doubling rate (i.e. the period of time in which the PSA score would double) is about four months. He said he would only start worrying if the doubling rate got to about four weeks.

I understand Dr P’s reasons (which he has previously explained) for wanting to get the most out of this treatment regimen before switching to another one, giving me another line of chemo, etc. Everything else is still the same, i.e. I’m feeling fine, keeping up the exercise, staying busy, and am not too worried about developments. I continue to see Dr P every four weeks. I start to get a bit anxious around the three week mark, peaking when I have the blood test about a week before the consult. After this, however, I tend to relax and think, well, I’ve done everything I can, we’ll see what he says. The effect of the anti-depressant and CBT combo helps to keep this anxiety manageable, as do the two exercise classes a week.

This week I also had my biennial consultation with my psychiatrist, Dr T. I need to touch base with him periodically so that he can renew the authority for my dexamphetamine prescription. (This last is very helpful for my ADHD.) Dr T said he had a friend with prostate cancer, who was controlling it entirely with diet and exercise. I just said “Good for him”. It’s interesting how many people know PC patients who are using complementary treatments, and who implicitly recommend these treatments to me. (Apart from medical professionals, no-one has ever recommended surgery, chemo or radiation.) I have had the odd comment here and there about the importance of maintaining a positive attitude, and so on.

I think these comments all come from a good place. People want to pass something onto me that they think could be helpful. I’ve no doubt that complementary therapies can be efficacious with less aggressive cancers. (Of course spontaneous remission can occur at any time.) No-one has explicitly recommended complementary therapies to me, but if they were to, I would ask them for a citation to a gold standard, double blind study, published in a high impact, peer reviewed journal. Evidence for these treatments, however, tends to be anecdotal, and involves only a single subject. The cases mentioned also seem unrepresentative, in that only the success stories are reported. No-one would boast about having abandoned their conventional treatment for complementary therapies, only to find their symptoms recurring; returning to their oncologist, they find that their cancer has become too advanced for any further medical intervention. Statistically, of course, such outcomes must occur. Complementary medicine researchers are attempting to build up a research base of properly conducted studies of these therapies. Meanwhile, I will stick to the treatment I am receiving, unless and until I have a reason to change it.

In more cheerful news, we got our new vehicle a fortnight or so ago, a Toyota RAV 4 hybrid Edge. It glides along in a beguiling way. I have clocked up about 270 kilometres in it, mostly just doing trips to the shops and exercise class. The needle in the fuel gauge is still showing 3/4 full. I gave it its first wash this morning; it was pretty clean, just rather dusty. It is noticeably higher than the Camry: I had to stand on a little step to wash the roof. Of course it towers over the GT (which has become my beloved’s car). I drove behind a GT the other day, and could see right over its roof. The extra ride height on the RAV is handy for getting in and out, although I think the GT kept me somewhat flexible. The former is the sixth Toyota that we have owned, jointly and severally.

Poco a poco

by feurmann

We saw Dr P on Monday, and the PSA is now measuring 2.1. I was a little unsettled at this continuing trend upwards. Dr P has been saying things like “the cancer is just grumbling along”, “scores go up and down”, and “at this rate it’ll take forever to get to 2”. I pointed out that the scores had only been moving in one direction, and I was now at 2. He said, again, that the significant thing was the rate of increase, which remains small. (He is always careful, however, not to minimise or brush aside my concerns.) he pointed out also that there is a number of treatments I can have after this one has outlived its usefulness.

One of these, about which I had heard, is lutetium . Apparently this is several thousand dollars each dose. There is another new treatment, which has only just become free, and is something for which I may be eligible. (It sounded something like alaporip.) It is only suitable for patients with a DNA target, in the same way that many breast cancer patients have the BRCA 1 and 2 genes. He asked if I would like to participate in a genetic analysis to see if I have the DNA target (to which I said “Yes”). I didn’t have to give any new samples; they will examine the pathology samples from my operation in 2017. The analysis will take a couple of months to complete. Given that my father had cancer, I think it is likely that mine has a hereditary component. Anyway, we will see how that turns out. I’m still feeling fine, and am somewhat heartened by the number of options that exist in this obviously very dynamic field of medicine. For a bit of light relief, we are off to see House of Gucci. (I saw Belfast last weekend, which I enjoyed.)

Level pegging

by feurmann

Updates to this post are minor, made only for clarity.

My beloved and I went to see Dr P on Wednesday, October 27th. The PSA is very slightly elevated — 1.01, up from 0.94 at the previous test. However, Dr P. said this is within the measurement error of the machine. So we weren’t to worry. He emphasised that he was still happy with where I was at. I am to see him next on 22 November, on which date I will also be having another Zolodex implant.

I am a bit late posting this because the consult came at mid-way of an extremely busy week. On Monday I parked the GT at the back of the IGA supermarket on Maling Road, Caterbury. I noticed a truck unloading in a right-of-way next to my parking space. I went to four places on Maling Road, at all of which I checked in, using the Service Victoria QR code reader and digital vax certificate. When I got back from the last stop (the IGA supermarket, as it happened), the truck had gone, but I noticed a bit of damage on the car bonnet and driver’s side guard. (There wasn’t a note on the car acknowledging responsibility.)

I whizzed back to the supermarket and asked if they had had a delivery that morning. (I’d chosen not to get a receipt for the items I’d bought, but, via the Service Victoria app, was able to show them that I had been in the store within the last half-hour.) They were very helpful and gave me a copy of the receipt that they had received from the delivery driver. The latter wasn’t an employee of IGA, but was working for a transport company. The invoice gave me his name and other useful information.

When I got home I wasn’t sure whether to call the transport company or my insurance company. I hadn’t seen how the damage occurred — I was only inferring that that it had been caused by the truck driver who’d made the delivery to IGA. So I rang my insurance company (Apia) and explained what had happened. They agreed that there was only circumstantial evidence that a third party was involved, charged me my excess (which I paid over the phone by credit card), and set an assessment and repair appointment in train.

After this I rang the transport company. They were unexpectedly sympathetic and said they would speak to the driver, and that someone would call me back. I didn’t have great hopes from this. However, I was pleasantly surprised to hear from the company the next day. They had indeed spoken to the driver, who said he hadn’t had any traffic accidents on his run. However, they had looked at footage from a video camera mounted on the back of the truck. This showed a pole, called a pogo stick, which the driver used in unloading the truck. The driver had leant the pogo stick against the truck, causing it to fall onto the bonnet of the GT as the truck reversed out of the right-of-way. So they acknowledged responsibility for the damage. (I thought this very decent of the company to put their hand up for this, and said so.)

To cut a long story short, after exchanging a few SMSs and emails, I received an indemnity form to fill in and send back. According to this the company said they would pay the amount of my insurance excess, if I, my heirs and descendants and so on, undertook to make no further claim on them in this matter. Rightio, I said, and filled it out and returned it to them forthwith. (What is this mysterious company’s name? I haven’t received the money yet, dear readers, so I am keeping schtum until I do. However, I expect the amount to be forthcoming.)

In the same week

  • I had two in-person exercise classes at the exercise physiology practice;
  • via Zoom, had a German lesson (for which I hadn’t done much hausaufgabe);
  • also by Zoom, had an appointment with my psychologist;
  • hooked up our barbecue (which had been sitting out in the garage for eighteen months or so after having been gifted to us by a former neighbour), in preparation for a Cup Day get-together with friends;
  • drove the GT out to Blackburn to the damage assessor/body shop place, where it resides until Friday (Apia shouted me an Uber back home); and
  • baked two sourdough loaves.

The loaves turned out well, the BBQ works fine (although I have to clean the grill plate soon), and I have been adapting well to only having one car between us. Actually, my beloved and I got by perfectly well with one car between us for twenty years. It is only in the last seven years that we have had a car each. As far as I am concerned, I would be happy to trade both the Toyotas in on an EV.

I can’t preview this post as I used to be able to, so I am just going to post it as is.

Down but not out

by feurmann

We went to see Dr P yesterday, and the news was good: the PSA was 0.94 at the last test. He said “I told you I’d get it down to zero”, and he has. As I understand it, anything under 1.0 is undetectable, so this is as close as makes no difference. (Or, as Dad would have said, 5/8 of SFA. That’s the expurgated version, anyway!) We walked away with a script for the next lot of Enzalutamide, a copy of the latest blood test results (“pristine”, according to the good Dr), a screed for the next blood test, and the receipt for the consult. After the Medicare rebate, this last was only a few dollars — 5/8 of you-know-what! Frequent illness points, or something.

I had been expecting the number to continue its downward progress, but still felt rather tired and drained afterwards. Had we been able to go out for a coffee we would have; as it was, we just had one at home, and watched “My Unorthodox Life” on Netflix. The show is about Julia Haart, who left an orthodox Jewish sect in New York and went on to make a major career for herself in the fashion industry. (There is a rather academic account of the show in The Conversation, which nevertheless covers most of the bases.) Whether you are into fashion or not, it is a lot of fun, and is beautifully shot in the Haart penthouse in Tribeca, her fashion company, and various other locations in Manhattan. In the last episode we watched, she, her husband and four kids also go to Paris for the fashion season. They hire a 13th century chateau as well (presumably close to Paris). You get the picture — they have plenty of dough — but this makes the show a great bit of escapism!

I had a small win also, closer to home. The study, where I spend a lot of time, had a picture which, for historical reasons, was situated oddly in the right hand corner of the rear wall. I wanted to move this picture to the middle of the wall, and hang my masters and long service award from RMIT on either side. The fact that all these are a different size — and that I didn’t have another hook the same as that which the picture was hanging on — made this a mañana project. A catalyst that enabled me to Move Forward with it was reading an article in the New York Times about picture hanging. This article made a couple of helpful suggestion for hanging pictures of disparate size together:

  • give them a common top line, and
  • using painter’s tape (AKA masking tape) to show this line.

I had the further brainwave to use a blob of Blu-tak on the top of this line of masking tape to show the position of each hook. (Saves making pencil marks on the wall.) So the tape gives you the horizontal and the Blu-tak the vertical reference. Et voila!

Study

Of course I mucked it up slightly in the execution — measure once, cut twice, and all that. (Not saying where!) But eventually I think it was quite successful. Oddly, from this slight angle, there is a slight optical illusion that makes the large picture look a tad higher than the others. From where I am sitting it actually looks a bit lower. I can tell you they are the same distance apart, however they might look in the picture! Anyway, it is “rough enough for the bush”. More importantly, it has the elusive WAF (Wife Approval Factor). This is no small thing from someone I have been known to refer to affectionately as Der Fisch — as in, an eye like a dead fish! (This is meant to be complimentary: I can’t understand why it is not always so taken.)

Down, down

by feurmann

We went to see Dr P today, and the news continued to be good: the PSA is now 1.07, down from 3.2. The good doctor is confident he can get it below zero. I know I’m not supposed to be focusing too much on the PSA. But Dr P has led with it the last couple of consults. Maybe he does this because he knows we get concerned about it if it rises. Also, let’s face it, medicos, like everyone else, like to focus on good news — something with which to cheer the patients up. Whichever it is, I’ll take it anyway! So the Enzalutamide continues be successful, while at the same time not incurring any very objectionable side effects. (The exception to this is hot flushes, which are definitely on the increase. I don’t mind these, however, because I feel them to be a sign that the medication is doing what it’s supposed to do, i.e. starving the cancer of androgen.)

While I was just having the Zolodex, I used to see Dr P every six weeks. Now that I am having the Enzalutamide to my regimen, I need to see him every four weeks. This is to do with the Enza being dispensed in batches of 112 — a strange number, on the face of it. However, the logic is: I take four of these a day. Each lot of 112 therefore cunningly lasts me 28 days. (Trust me on this.) Dr P wants to see me after each batch, therefore every four weeks. I continue to have a Zolodex implant every 12 weeks. Each of these will now occur following every third consult with Dr P (instead of every second consult, as has been the case until now). Alles klar? I get most of the charge for each consult back from Medicare anyway, so having them more frequently is not a financial impost.

Coincidentally, today was also a Zolodex day. I was actually a bit early for this appointment. The nurse who was supposed to administer it was busy, so one of her colleagues took over. There was a slight confusion initially, on my part, over terminology. Zolodex had always been referred to previously as an implant; it is about the size of a grain of rice, and is placed just under the skin of the abdomen with a fair size syringe. This afternoon, though, the nurse asked something to the effect of “Which side would you like your injection on”? When I heard the word “injection” I automatically thought it would be something going into the vein at the wrist, so started rolling up my sleeve. Then I remembered it was an implant, and said this to the nurse. She said “Oh, I’ll go and get the box” (again, words to this effect), and went to fetch the relevant documentation.

At this point I should explain that each Zolodex implant goes into a different side of the abdomen to the previous one. Whichever side is used each time goes into the clinical record. Nursing staff avoid putting the implant into the same side twice in a row to reduce bruising, I think. However, I wasn’t worried about getting the wrong stuff — each dose is checked by another nurse before it is administered. (I know because, as always, they did this in front of me.) The patient is always asked their name and date of birth as well, to make sure the correct medication goes into the correct person. There was just a moment of being at cross purposes because the nurse said “injection”, not “implant”, sending me momentarily off down the wrong rabbit hole. We had a joke about how she was just seeing if I was paying attention (like Captain Mainwaring in Dad’s Army.) For chemo patients and those having CRT scans, an injection means a cannula in the wrist. (Yeah, OK, I suppose technically an implant is a type of injection. Please don’t correct me if I’m wrong about this! When I hear the word “culture” I reach for my Browning!)