Mutatis mutandis

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.

Poco a poco

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.)

Deja vu all over again

We saw Dr P last Monday. The PSA is continuing to creep up: 1.63 is the current score. Context is, as ever, important. At 4 weekly intervals, the last 3 readings were 1.29, 1.44, and 1.63. So the increases are less than 0.2 each time. Dr P said he was “pretty happy” with me, and that’s good enough for me! I still feel fine: the sleep is pretty good, a key component in well-being for me.

Things automotive have been the flavour of the last couple of weeks. Some of you will know that I gave the GT a scrape on the passenger side of the front bumper bar a few weeks ago. I had that fixed last week (coincidentally, the day before taking it in for a service). The guy in the paint shop recognised it as a 2014 model, and said his wife had just sold hers recently. He added that a local second-hand dealer was selling a 2015 GT for about $7,000 more than I paid for mine.

OK, I thought, and checked it out. What he said was spot on. I can’t give a link to that sale, however, as it appears the car has sold, even at that crazy price. As the paint shop guy said — demand for these cars has taken off. While looking through the site, I went down a bit of a rabbit hole. The dealer also had a 2016 Mercedes C180 coupe, with pretty low mileage, at a reduced price. I have always had a fantasy about owning a Benz, so I took it for a spin.

Despite having only a 1.6 litre 4 cylinder engine, it drove very well. The cosmetic condition was pretty good, with just a few minor scratches, which partly explained the reasonable asking price — pretty much in the middle of the Red Book indicated range. The car appears to have had all its required services. (I emphasise this because Benz service histories are now, apparently, entirely digital. So no more logbooks in the glovebox to check.) The salesman gave me a list of dates and kilometres he had obtained by ringing the dealerships at which the car had been serviced, and everything seemed to check out.

Anyway, I researched this and similar models for sale in Melbourne. C class Benzes are actually quite numerous, being Mercedes’ best seller in Australia. So there was a number of other examples for sale in a similar price range. Sense prevailed, however, when it occurred to me that a Benz that I could afford wasn’t one that I ought to be thinking about buying. Mercedes reliability has been extremely variable for the last several years. Fantasies are one thing, but the reality of buying a seven year old Euro car stuffed to the gills with expensive high tech gadgets was likely to be a lot less fun. I could have bought an extended warranty from the dealer, but I felt it was better to avoid trouble. The GT has had absolutely zip go wrong with it in the three years in which I’ve owned it — and it’s fun to drive. As the paint shop guy said — you can’t go wrong with Toyota.

Strange things are happening in the car market. I’m very glad that we paid a deposit in November for a Toyota RAV4 hybrid. At that time we were quoted a waiting period of 3 to 4 months. Had we gone for a Cruiser, which is the model underneath ours, we would have had a 10 month wait. Someone ordering a RAV4 now is being quoted delivery around Easter, 2023. Toyota has paused production at several of its Japanese factories. The one which produces RAV4s has, at this stage, only been paused for a couple of days. All these delays will obviously push out wait times, already pretty decent.

What’s going on here? Household savings have jumped under lockdown. One of the few things that people could spend their spare cash on was a new car in which to go travelling around their state (whenever they could actually do this). The crazy wait times for new cars have pushed up the prices of second hand ones. Specifically too, the RAV4 is a car that is in high demand. The reasons for this are apparent to everyone who takes one for a drive. It is just the right size — less hulking than a Land Cruiser, less poky than a C-HR. Its being available in a hybrid makes it even more attractive.

Apparently, also, there is a world-wide shortage of semiconductors, of which modern cars have an increasing number. Intel is building a couple of new factories to supply this demand, but they will take a couple of years to come on stream. Meanwhile, most semiconductors are manufactured in PRC. Someone posting to a discussion list muttered darkly that MG, now under Chinese ownership, doesn’t seem to be affected by this shortage. Conspiracy theorists take note –today your garage, tomorrow the world!

Staying in the lane

We saw Dr P on Monday (22 November). The PSA was 1.29, which he described as a “very minor increase” on the previous figure of 1.01. The good doctor added that

  • Enzalutamide is known to give such increases, so this one was “not unexpected”
  • the PSA could come down
  • he thought the PSA was “just grumbling along”.

Most importantly, I still feel fine. After the consultation I walked up to Epworth Eastern to have my Zolodex implant, which was delivered as usual.

The preceding week we had finally gotten away for our mini-break in Daylesford (two nights in a self-contained villa near the lake). We had booked this originally in August for September, I think, and it was deferred three times with various lockdowns. The holiday was lovely, but its conclusion was a tad stressful. On the morning of Friday 19th, while I was getting all our stuff together before checking out of the villa, I got an SMS alerting me that we had a message on our landline. (We seldom use this number, and consequently don’t often check the message bank attached to it.) I thought I could play back these messages remotely, and found out how to do so after a bit of Googling. The message directed me to call Epworth Eastern, where I was booked in to have the Zolodex the following Monday.

I rang the number that had been left on the message, and got through to the day oncology ward at Epworth Eastern. I had to have a Covid-19 test before I could have the implant on Monday. (They apologised for the short notice — apparently this is a new hospital policy.) I didn’t have to get the results back in order to have the implant — I just had to have had the test.

My beloved was taking the waters at the Hepburn Springs bath house at the time, and had the car. I tried to figure out what to do. Should I try to have the Covid test in Daylesford? Or should we cancel our lunch booking and drive straight back to Melbourne? I decided we should go to lunch as planned and drive straight home. I would then have a Covid test at a drive-in centre at Deakin University a short distance away. If I could get the result back in time, well and good; if not, it wouldn’t matter. This all worked out as anticipated. I had the test on Friday afternoon, and got the result the next morning via SMS — no Covid discovered. I just showed the SMS to the oncology centre when I booked in on Monday. (I also asked them to remove our landline number from their records.) It looks as if I will have to have this test at three monthly intervals, before every Zolodex implant, or before any other hospital admission. Touch wood there won’t be too many of the latter!

Down but not out

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 maƱana 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.)

Extra treatment

A week ago I had a CT and a bone scan, followed a couple of days later by the usual blood test. (I had to leave a gap between them because one of the scans involved being injected with a radioactive tracer dye. This dye can affect a blood test if the latter comes straight after.) This afternoon we saw Dr P to see what all these tests revealed.

The PSA has continued to creep up — only about 0.7 from the previous result, however. The scans revealed a few new spots, something of more consequence. Fortunately, however, these are all in bone, something that is greatly preferable to visceral metastases. (The phrase used in the findings of the scan was “mild progression of bony metastatic disease”.)

Dr P said he thought it was time for an additional treatment, enzalutamide. (The link points to a post in the Harvard Health blog which gives a bit of context about this type of drug.) I had heard of enzalutamide, and know a few guys who are on it. Dr P is confident I will tolerate this treatment well, and that he can get my PSA down to zero on it. (The last time he predicted this, it came about.)

Obviously having new spots isn’t ideal. However, Dr P emphasised that the new ones are minor, and that I’m not (as he put it) “lighting up like a Christmas tree” in the scans. We are both relieved to be moving to an additional treatment. I will continue with the Zolodex until further notice; the next implant for this will take place in 6 weeks. (I have actually been on Zolodex for almost three years, an unusually long time. Zolodex is an androgen deprivation treatment — see another link from the same source for more information.) I will see Dr P in a fortnight so he can see how I am going with the new drug. All going well, we will revert to our usual 6 weekly consult. Enzalutamide is on the PBS, so it should not cost much.

Pharmacists don’t tend to carry enzalutamide, so we had to order it, but it will be availabIe tomorrow. I will obviously just have to try it and see how I tolerate it.

Less good news

I have been procrastinating about writing this, so I am just going to get it over with. We saw Phillip P on Wednesday 9th (about 8 days after my appointment with Pat B). Unfortunately the “gains” that Pat reported, in terms of a reduction in PSA score, have entirely been lost. The score that we got from Phillip was 6.5, which is back to where it had been before the radiation treatment.

Phillip made several points about this. (Sorry, I have forgotten how to do numbered lists in this infuriating blog editor.) First, he found the increase “not upsetting”, and he hoped we were not perturbed by it. Second, he understood also that people made a fetish (my word) of the PSA score. However, the metric that he is focused on is the doubling rate, i.e. the time interval in which the PSA score doubles. A doubling rate of 6-8 weeks would cause him concern, but he feels I am a long way off that. Third, 90% of his consultation time is spent reassuring patients and their carers about PSA scores. So he gets that people find these increases worrying. (He was at pains not to ridicule or downplay our concern.) But he would like us to look, not just at the quantum of the score, but at its rate of progression. Fourth, he has many other treatments up his sleeve.

As to when it comes time for me to move to the next treatment, as he has said previously, Phillip wants to keep me on Zolodex for as long as possible. Let’s call the its successor “Treatment 2”. Say Treatment 2 has an estimated efficacy of a year. If I go onto it now, I will get a year out of it. If I go onto it in six months, I will get eighteen months out of it. So that is why he wants to defer Treatment 2, and its heirs and successors, for as long as possible. (Phillip has said to me before quite bluntly, that the fewer treatments I have, the better.) Treatment 2 will be deployed at a rapid rise in my PSA. But we ain’t there yet.

I was due for another Zolodex implant after the consult with Phillip, which I had without incident. I will go on having these every three months until I move to another treatment. I will continue seeing Phillip every 6 weeks, and having a CT whole body scan every three months. (The next one of these is booked in for 12 July.) So I remain under close surveillance.

It took us a while to digest this news. On hearing it, and the rest of that day, we both felt a bit stunned. What made me feel better, actually, was doing some German homework. Everyone deals with adversity in their own way, and this is mine. We both felt more positive the next day, having had some time to get a better grip on the situation.

It was obviously disappointing that the radiation treatment didn’t have more effect. However, Phillip has many arrows left in his quiver, and we are confident that he will deploy these as the situation dictates. I am still feeling fine, exercising, doing stuff on the home front, and all the other things I have been doing. So there are a lot of positives to focus on — take it from me, we are doing just that! To this end, I would also like to maintain the moratorium on questions. I say this for two reasons. One, I just don’t have any more information to add to what I have written above. Two, I don’t want to give the situation more mental space than it already occupies; we don’t want to delve into it further.

Marching on

I had my appointment with Dr P this morning. The PSA has gone up slightly again — to 4.8 from 3.7. However, the scans I had on Monday didn’t reveal any new activity. So I am still radiologically in remission. Dr P said there was a spot on my chest which was probably causing the increase in the PSA. (On the way home I checked the list of metastases, or “spots” in doctor-speak, that he gave me in February, 2019. This showed one on the sternum — this is probably the one he was referring to this morning.) Dr P referred me to a radiation oncologist for stereotactic treatment of that spot; I will be having this treatment starting on the 23rd.

(I had stereotactic radiation treatment a few years ago — after the operation and before the chemo/hormone treatment. So it is quite familiar. All these treatments are pretty refined, and fortunately don’t seem to cause me many side effects.)

Anyway, Dr P is not worried about the blood test and scan results — “not even close” were his exact words. I am certainly still feeling fine. The sleep continues to improve, and this always makes me feel better. I will continue with the exercise classes twice a week. (Ditto with the hormone treatment unless and until I need a different one.) I had another Zolodex implant after the appointment with Dr P. After that we had a coffee on Maling Road, and I went to the greengrocers.

The day went a bit pear-shaped after we got home, though. I should explain, for those who haven’t been to our place, we are in the rear unit of two. Another pair of units is directly to the north of us. As we approached our place, we saw a police car on the nature strip and a fire truck and an SES truck in the street. As we passed the units beside us, my beloved glanced up their driveway and exclaimed “Oh, my God!”. A car was sitting in their driveway at right angles to the boundary fence. When we got up to our driveway, the car belonging to the neighbour in the front unit was parked outside our garage. This was all highly unusual!

We asked one of the coppers what was going on. Apparently someone in one of the units to the north of us, while driving out of their garage, had lost control and gone through the boundary fence. This had flattened a section of the fence, and knocked a hole in the garage of the front unit on our side. (This was why the neighbour’s car was outside our garage.)

Our garage has a party wall with that of the front unit. The police and SES therefore asked to check inside our garage to see if it too was damaged. There was a small crack in our garage wall, but no other visible damage. As a precaution, though, the SES put a prop inside our garage to reinforce the roof where it joins our neighbour’s. The latter went to the trouble of tying up the prop to prevent it from falling onto our car, should the wall shift. (They were very concerned that they get this prop back — I assured them I would keep an eye on it. I reckon if the prop fell on the Camry, we would be up for a new car — they are hefty pieces of kit!) Our neighbour’s garage is quite badly damaged — one can see straight through the wall where the impact occurred. She will have to leave her car in the street for the time being. It was just lucky no-one was hurt.

Everyone was very calm and pleasant. One of the police helped me drag some stuff out of the garage to let the SES put the prop in. The police also helpfully supplied us with the contact details belonging to the driver of the car. Armed with this information we rang our insurance company and explained what had happened. They will be sending out someone to assess the damage to our wall in the next few days. No-one actually said “You can go on parking your car in the garage”, but we inferred that this was a fair thing to do while we are waiting for any remedial work that might be required. TBC!

Carry on in remission

We saw Dr P this morning. The news wasn’t great, on the face of it: the PSA is up from 2.3 to 3.7. However, Dr P continues to be happy with where I’m at. He referred to the scans I had had in December, which showed neither “clear evidence of bony metastatic disease”, nor indication of “local soft tissue recurrence”. He said while the PSA scores showed that there was something going on biologically, I was still in remission radiologically. He wants me to have scans now every three months, adding “I’m probably just being paranoid”. (He can be as paranoid as he likes as far as we’re concerned!) He doesn’t intend to change the treatment I’m on until something shows up on the scans.

As Dr P pointed out, we have been coming to see him for three years now, something that surprised us. During this period I have had adjunct chemotherapy and hormone treatment — the latter of which is continuing — and spent two years in remission, i.e. with an undetectable PSA score. It was welcome news to me also that I remained in any kind of remission — I thought this had finished when my PSA score started climbing. Being in remission doesn’t change anything, of course, it just makes me feel that bit better. Physically I still feel fine, thanks to the exercise classes and lots of walking.

The last lot of scans was bulk billed, so the only drawback of having more is the time required. There is a gap of an hour or two between the two scans. By the time you arrive, get prepped, have scan #1, then wait until you can have scan #2, the day has a fair sized hole in it. Last time I came home for lunch during the gap. Next time, however, I will just walk up to Whitehorse Road, buy a sandwich, and go and sit in the park across the road from the hospital. If it is a hot day I will renew my community membership in the RSL and have lunch there — the food is pretty good, and they even have a senior special menu!

Post for 23 November 2020

I am pretty tired after an eventful morning, so I am just going to write the basics.

I saw Phillip P, my oncologist, this morning. The PSA has gone up slightly, now 1.4. (The previous reading was 0.5.) He said it is still very low, he is happy with how I am travelling at present, and that I shouldn’t worry. He is focused less on the quantum of the PSA than on the trajectory of the rise. A steep increase would be concerning, but a gentle increase like this is not. Nevertheless, he wrote me a referral for a couple of scans (CT and bone) to be conducted before our next appointment. These will reveal if there is any spread of the disease.

(After I came home from a walk this afternoon, I got a call from the scanning centre at Epworth Eastern. The scans are booked for 17 December. It is a convenient location in Box Hill, being where I go for the Zolodex implants. Speaking of which, the next consult with Dr P, and the next Zolodex, are booked in for 23rd of December. This is a bit better than the original appointment, which was scheduled for the 30th of that month. There are lots of places at which I would prefer to celebrate my birthday than a day oncology centre!)

Dr P was running quite behind, and I had a consult booked also later that morning with my GP. I did make the latter on time. Unfortunately, it was a bit jarring. After having discussed a few alternatives for sleeping tablets, he wrote me a couple of prescriptions for some new ones. I quizzed him to make sure I understood how I was to take them — alternating one with the other, or both at once — the latter was the case.

He then said I had had my fifteen minutes and I couldn’t have any more time. If I had further things on my list (which I did), I should have outlined them at the start. I did get one more prescription out of him, for the blood pressure medication. Anyway, I will be changing GPs. I get that medicos are stressed. They need to manage that stress, though, in ways that don’t involve taking it out on their patients.

Positive points to the day included sitting down in a cafe for a coffee after the GP consult — I needed a lift by then! Another was going to the local library, picking up my hold, and taking out a few other books as well. These were both things I had missed doing for most of this year (cafes and libraries having been closed in Melbourne). Op shops have re-opened as well, so things are really getting back to normal.

Last night I took out a monthly subscription to Netflix. This will allow us to watch some more episodes of Emily in Paris, previously mentioned, and a favourite of my beloved. We will also be able to bring ourselves up to date with The Crown. The Netflix Android app works well with the Chromecast, and we were able to switch on the closed captioning without difficulty. One can just renew the subscription monthly. Entertainment is welcome at present, particularly in the leadup to The Festering Season (as I grumpily think of it).