Dr P appointment, chemo, and new infusion

We saw Dr P yesterday. This was followed by the scheduled chemo infusion and (for the first time) a bisphosphenate infusion. The latter is intended to strengthen my bones against the side effects of the chemo. A summary below:

  • I have still been feeling fine
  • PSA was at last going down, albeit not by much (14, from memory)
  • Dr P is happy with me. He reminded us he expected the PSA to start falling after about four chemo infusions.
  • I have my next appointment booked with Dr P booked on 22 May, to be prefaced by
  • a combined CT & bone scan on 16 May (my regular quarterly checkup).

All went well early until this morning, when I felt quite nauseated. Fortunately there was nothing in my stomach. I felt better after about ten minutes, after which I had tea, water, and dry toast. (I then branched out into adding some butter.) With a bit of food on board, I had an anti-nausea tablet. So I am feeling much better. I suspect the nausea was down to the bisphosphenate infusion, of which this was the first. So I am just having a quiet day. It’s cold anyway — expected max 18 — but it is very cloudy, so only about 11 outside.

Limping along

Appointments have been pushed around a bit with Easter. Dr P was going away with his family for the aforementioned holiday, so we saw him a week earlier than usual, on 27 March. All was going as expected. The PSA had increased a little bit — I don’t have my notebook to hand to check — but the all-important rate of increase has slowed significantly. Dr P thinks it will need about four chemo sessions to haul the PSA back in real terms. (The one I had a few days ago was the third, so we will soon see.) But the trend is likely at last to become my friend. Most importantly, I’m having no side effects from the chemo, so that is continuing until further notice.

After a few days in the sister-in-law’s place in Ocean Grove, we went back a couple of days ago to the day oncology centre in Epworth Eastern for a chemo infusion, my usual three monthly Zolodex implant, and a bisphosphenate injection. (This last is a bone strengthening drug for cancer patients. To have this, I had needed to make a few dental appointments so that everything in that department was all up to date. Fortunately re-doing a few fillings was all that was required.) Unfortunately there had been a snafu with the bisphosphenate, which hadn’t been specified in Dr P’s email to the day oncology folk. The nurse called the doctor covering for Dr P, but the former wasn’t prepared to order the injection. Anyway, it’s no big deal — I’ll just get in on 1 May, when we see Dr P next. Apart from this, the chemo infusion and Zolodex implant went uneventfully.

The only other health niggle is a very acute and (by now) chronic strain at the very top of my left leg. I think I got this from having a drive of the GT — my first for about six months. Well, that’ll be the last. The GT is very low, and getting into it is easy, but getting out seems to be crippling. (There’s nothing else that I have been doing physically to which I can attribute this strain.) Having become a fully retired household, we need in any case to review how much we really need a second vehicle. At a cost of around $5,000 annually, that could pay for quite a few Ubers, and still be in front financially. So we will probably sell it.

Meantime, I have been hobbling around, expecting things to improve any day now. All the usual things like stretches haven’t worked. (So let me get in early to anyone suggesting stretches — your journey is unnecessary.) Ditto with exercising the leg, which just seems to make it worse. I have plenty of pain relief, but am a bit sick of not being able to go out and do stuff. Anyway, we are seeing a GP this afternoon, in the hope that this produces something new — maybe a course of steroids for the short term.

The intermittencies of the heart

The title of my post has been borrowed from the title that Proust intended to give his novel cycle. Never one to discard a good phrase, he went on to use it for part of volume 4, Sodom and Gomorrah. I thought I would borrow it for an update on how I am going after two chemo infusions, which is pretty well.

We saw Dr P on Wednesday. The PSA has risen, but only by a tiny amount relative to the previous score — I made a rough calculation of 10%. So it appears to be plateauing, a sign that the cabazitaxel is working. (Further evidence for this comes from the absence of pain in the lumbar and thoracic areas, allowing me to return to small tasks like grating an apple and running the wheely bins up and down the driveway.) After the consult, my beloved and I headed back to take a lift down to our separate destinations. All sounds very romantic! Alas, I was just continuing down to car park level B2, while she was alighting on the ground floor to go back to the car. Why the difference? There is a subterranean pathway in the car park leading to the westerly part of Epworth Eastern, where the day oncology centre is situated, itself where my second chemo infusion is to take place. (The building containing Dr P’s office was built later; for some reason, it isn’t possible to pass between them by a less convoluted method.)

Once the subterranean whatnots were negotiated, the actual infusion passed quite pleasantly. I have spent enough time in hospitals by now to feel quite at home there. The environment is warm; one is brought tea or coffee (which is actually quite good) and sandwiches. The seats are multi adjustable, good for me as I can have my calves raised to stop them swelling. The insertion of the cannula is not painful; the nurses have all done it many times. I am there for about an hour; I just sit there, read a book, and zone out. (I could alternatively listen to music via my earbuds, linked by Bluetooth to my phone. Last time, however, my phone battery was only at 27%, and I needed to arrange my lift home.)

For this, my second treatment, I had few side effects. Fortunately this is not my first rodeo, having had chemo about five years ago. That knocked me around a bit more, but not for long. I was fairly cavalier that time, travelling by train into the city to get to my poetry group. Now I am more conscious of needing to stay away from groups. Chemo is definitely something that compromises the immune system.

Chemo again

We saw Dr P last Wednesday for some fairly sobering news. I had had my regular three monthly CT head and neck scan and the whole body CT scan the preceding week. These, thankfully, did not show any cancerous activity in the viscera such as liver or lungs. They did, however, show generalised small stress fractures in various areas of the skeleton. Dr P said the back soreness I had been experiencing was caused by these fractures. Their presence indicated the enzalutamide (hormone) treatment which I had been taking for the past two plus years had run its course. This was not unexpected — Dr P has been foreshadowing for some time that another course of chemotherapy was now the way to go.

I had the first of these yesterday morning, at the day oncology centre, Epworth Eastern. I will only have to go in there every three weeks. This treatment centres around a drug called cabazitaxel. This is well tolerated by most patients, some of whom can clock up to around 50 cycles: nearly three years. After each infusion I will be seeing Dr P, who will look at the blood cell counts and how I am responding to the treatment generally. I certainly feel pretty good the morning after the first infusion. The lower back was a bit painful, but an Endone (of which I have been supplied with a good number) is taking care of that. I am on a different medication schedule with various anti-inflammatories, morning and evening, with the Endone for breakout pain. I certainly feel much more comfortable (apart from some breakouts) now that the cabazitaxel is beating back the cancer.

Of course this is not my first rodeo with chemotherapy, so it is all pretty familiar. (From memory, on the previous round I had to go in several times a week for a few months, so this one is definitely easier.) I took in a book: Proust — what else? It is very soothing to be able to immerse myself in the doings of the as yet anonymous narrator, Albertine, Madame de Cambremer, the Duke and Duchess of Guermantes, the Baron de Charlus, and all the comings and goings of the huge dramatis personae. A shoutout also to the attentive and wonderfully professional nursing staff administering the treatment, and the volunteers dishing out coffees, sandwiches, cake and other comestibles. There are many worse places to be.

Me and my back

Let’s get the prostate stuff over with. Last week’s consult with Dr P was almost identical with the previous one, except for another rise in the PSA — up to 200 this time. Fortunately, I’m pretty inured to these kinds of figures, particularly when, as this time, Dr P said he was happy with how I’m going. I’ve been having difficulty with full body scans, insofar as the radiation therapist has to tie a velcro strap around my ankles to stop me wriggling around (thus blurring the scan). By the time the scan head gets to my ankles and feet, I’m in fairly decent pain from the sciatica. I’d reported this to Dr P, and he said he’d give me a prescription for some opioids to help with the pain. I thought he’d just give me a script for one box, but he wrote on for about 10-12 boxes! (No-one need be concerned that I’ll be tossing them down like lollies. Some time ago I read a book about Oxycontin and the dreadful legacy of addiction that that left behind. We also saw and enjoyed Addiction on one of the streaming services. So I’m well aware of the potential for addiction from this drug. But for pain relief, opiods leave things like Panadol in the dust.)

I gave these a bit of hiding, though, over the new year. I got a strain in the sacroiliac region on 23 December — just as we were about to leave for the airport to pick up my sister-in-law, who was having Christmas with us. I had been about to pick up an (empty) plastic Esky the way I’d been taught, i.e. bending my knees and keeping the back straight. Unfortunately the Esky was on my right hand side, not straight ahead. Anyway, this resulted in an almighty pain, recovery from which required lying down for several hours while my beloved continued to the airport. I was up and walking around about five hours later, albeit in a fashion that resembled Dr Frankenstein’s monster.

The happy pills have also been part of the treatment regimen I have been put on by my GP for a spasm in one of the lumbar spine muscles I’ve been having for a week now. This also gives me pretty decent pain when getting up or sitting down — just at various angles. My GP gave me two types of opioids and Panadeine Forte, all of which make me pleasantly woozy, but are only masking the pain. I’ve also had some adjustment by a chiropractor, who said she thought I might need another session (truer words were never spoke — I’m seeing her tomorrow afternoon). If that is unsuccessful I’ll try some needling therapy, either by an acupuncturist, or dry needling.

This pain is pretty disabling in terms of doing any cooking, or basically anything that involves lifting. It’s remarkable how many things, such as appliances, are stored in low cupboards. Fortunately my beloved is working from home this week. (One of her friends went down with Covid last week, so my beloved and I have been isolating for a few days. We both took a RAT test which came up negative, though, so that is one bullet we may have dodged!) My beloved has stepped nobly, as ever, into the breach of the household stuff. I have been supporting insofar as I’m able, including setting up a Click and Collect for the groceries.

One takeout from these two incidents for me is that my back has become rather fragile. I’ve become like a vintage car which requires consistent maintenance. To that end I’ll try seeing the chiropractor and massage therapist alternately each month. Another is that GPs in general don’t really know that much about the workings of the musculoskeletal system, and often only have time to write you a prescription for an analgesic or (if you’re lucky) an opioid. So one must find a practitioner in that realm of medicine deemed “complementary”, e.g. an exercise physiologist, chiropractor, or acupuncturist. (Caveat emptor, and all that, but that applies just as much to Western medical practitioners.)

Nothing much to report

We saw Dr P on 11th of this month. This consult followed what has become the pattern of late. The PSA, as expected, continued to rise, reaching 145. However, the scans I had done the preceding Monday showed that there was no detectable new activity. I asked how many spots the scans revealed. The answer was 3 or 4 — one of these may or may not be a new one. Either way, this is fewer than I have had previously. All fortunately continue to be in bone, with no visceral involvement. My interpretation of this is that I am living with the condition successfully, insofar as I’m not experiencing pain, and the spots aren’t spreading to any organs. Sometimes I am still pretty tired from the radiation treatment; otherwise, though, I can do pretty much what I want to do.

As before, Dr P declared himself “very happy” with how I’m going, and thought I was looking “fantastic”. He reminded us that the next treatment was another course of chemotherapy. Given that my scores weren’t doubling, he didn’t think this was required. Déjà vu all over again!

Following another visit to my GP, the sciatica is less troublesome. The strategy is to bump up the Lyrica, so that it better controls the pain, and makes me less dependent on anti-inflammatories. To this end, as well as 150 mg in the morning and the same at night, I can have a further 75 mg if there are any “breakouts”. I have had to resort to this a few times, and it is definitely effective. I will continue seeing a chiropractor and medical masseuse in 2024, and having a daily going-over with the massage gun from my beloved. I have also gone back to exercise class, just once a week for the time being. Further accentuating the positive, the strain I had acquired in the intercostal muscle seems to have disappeared. (At one stage I had the intercostal, a back strain, including the SI joint, and the sciatica!) Hooray for modern drugs.

Centurion

At our last visit to Dr P on 13th November, my PSA had reached 116. We had both been expecting the PSA to continue rising, as it has pretty much every time this year. Having passed the 100 score, however, felt as though a psychological barrier had been breached.

Dr P was quick to remark, as he has all along, “numbers don’t mean anything”. He said the mark he looks for to change course on treatment is when the scores double rapidly, for example, every four weeks. The “change” would involve another course of chemotherapy. He has said before he wouldn’t hesitate to resort to this if he thought it was necessary. In the meantime, though, he is guided primarily by how he considers I am looking and feeling. He commented approvingly I had put on some weight — something that no patient whose cancer is progressing does. My three-monthly CT and full body bone scan is booked in for early December, following which I will be seeing Dr P on December 11th.

Near the end of the last consultation, we worked out that we had been seeing Dr P for six years, which seems unbelievable. At that first meeting he said he wouldn’t sugar coat things, and he has never done that, but he is also careful to accentuate the positive. This is a fine line to tread, but one he has always managed to stick to.

Otherwise I have been having a fair bit of trouble with sciatica, and stiffness and soreness around the sacroiliac region. That joint has been fused after having ankylosing spondylitis in my twenties. (The AS also left me with several fused joints in my neck.) A few treatments from a medical masseur have helped reduce the stiffness. When my chiropractor comes back from her break, I will resume seeing her. I will probably alternate between her and the masseur, as the need arises. A second line of defence is exercise classes, something I have just been too tired to contemplate returning to. However, I saw my exercise physiologist last week, and she gave me the green light to resume classes, albeit with a program adjusted to cater to my current injuries. The sciatica is responding to a fairly high dose of Lyrica (pregabalin). This seems to bring the symptoms down to the point where stretches effectively deal with them — something that stretching alone does not.

Streaming-wise we were mesmerised by David Fincher’s new film The Killer (Netflix). on that platform also we are also enjoying A Murder at the End of The World, which brings several fresh twists to the classic Agatha Christie-style murder mystery. The Icelandic settings are a bonus.

The devil’s number

Last Wednesday was a busy day for me, with appointments with Dr B (my gastroenterologist) and Dr P (medical oncologist), followed by a Zolodex implant. Fortunately the two specialists both work in the same building, part of Epworth Eastern’s new wing. The day oncology centre is in the adjacent building, which allowed all these appointments to be clustered.

First up was the consultation with Dr B. (I am seeing him to decide whether previous episodes of breathlessness were related to low iron.) FOB tests that I had completed for Dr B didn’t show anything untoward, i.e. no excess levels of blood being detected in the poo samples. A fasting blood test showed, as last time, that iron levels are OK, while ferritin levels are still on the low side. On learning that I was due to have my quarterly Zolodex implant, after seeing Dr P, he headed across to the day oncology unit to ask whether they could give me an iron infusion at the same time. (This would save me coming back on another date.) The plan is to see whether my ferritin results improve in my next blood test.

Next came Dr P. We had been expecting an increase in the PSA, and so it proved — 87, up by 24. Last time, Dr P had suggested that my PSA had been increased by having recently had the radiation treatment. Maybe the effects of the latter are still hanging around. Anyway, I complained that he had left me hanging on the Devil’s number, so called by Australian cricketers who regard it as an unlucky score, being 13 short of 100. (He was fully across this — doubtless another cricket tragic.) However, he emphasised that I looked “fantastic”. As ever, it is the trajectory of the increase that matters, etc. etc. So while the scores are not doubling from one to the next, it is steady as she goes regarding treatment.

Finally came the combined iron infusion and Zolodex implant, both carried out in the day oncology unit. Although this is in the adjacent building, there is no walkway — patients travelling from the old to the new parts of Epworth Eastern have to travel down to the carpark, then take a special lift that travels to the old building. There was a couple traversing this route, an older chap and someone who I guessed was his son. This proved to be the case; the other cancer patient was having immunotherapy. I had an initial hiccup in that I had neglected to have a RAT Covid test the previous day, then photograph the result on my phone. (I’d just clean forgotten all about it — an example of Covid complacency.) After someone ferreted out a complete test kit, I did the business then waited the required ten minutes for the (expected) negative result. After this, the my double-header treatment was done in a very efficient way. The iron infusion was started first; while that was going in, the Zolodex was implanted.

Everyone is digesting the referendum results, but I will finish on a positive note. Dr L, my opthalmologist, whom I saw last week, has cleared me to drive. This takes a lot of pressure off my beloved in terms of ferrying me around, and allows me to do some grocery-fetching and stuff like that. The freedom to get out and about my own steam is not to be underestimated.

More good than bad

I had my usual three monthly entire body bone scan and CT thorax/abdomen/pelvis scan on Monday. Following this, we saw Dr P yesterday. He led with the scan results, so I will follow suit with some highlights (so to speak):

  • The conclusion for the former scan was “findings in keeping with moderately indolent disease”. When I asked for a translation of this, Dr P said “stable”.
  • For the latter: “No features to indicate underlying soft tissue metastatic disease at any level”. The fact that there is no visceral metastatic disease (i.e. no lymph nodes or organs are affected) was further good news.

The PSA was a rather dizzying 63. However, Dr P said he thought this had probably increased to this extent because of the radiation treatment I had just had at Peter Mac. He said also he could see I was a bit sub-par, and that I would start feeling better about 6-8 weeks after the last treatment. (He relies much less on the PSA metric than on his assessment of how I am looking and feeling overall. )

The news was a mixture of encouraging and daunting. Looking at the positives, however, Dr P didn’t order me onto another round of chemo. Prior to the appointment, we both expected this. That he kept that up his sleeve this time was a relief. I am already feeling less tired from the radiation treatment (i.e. not sleeping half the day), so maybe the recovery is starting a bit earlier than forecast. My left eye (the one which was treated) is looking better, with less bloody and scummy stuff weeping out. The area underneath the eye in particular is much less red.

I am going into Peter Mac tomorrow morning to touch base with my radiation oncologist, Dr M. My plan is to continue seeing her each week, as she has requested, until the left eye has settled down. At that point I will transfer the oversight of the Merkel carcinoma to Dr P (being something with which he is familiar.) Not having to trek out to Parkville will be a relief.

The sciatica has been quite troublesome. I have had to supplement Lyrica (the medication prescribed for it by my GP, Dr T) with anti-inflammatories. We went to Camberwell earlier this afternoon to see her about this and a few other things. She authorised a double dose of Lyrica (150 mg twice a day), and gave me a prescription for this, and others for a few more meds that have been running a bit low.

Finished — yay!

Early this afternoon I came home from Peter Mac with my beloved after about 50 radiation sessions there. (For the middle 4 weeks or so I was having two sessions a day, five days a week. At the beginning, and for the last 10 days or so, only one.) On top of these I had at least 15 consults ancillary to the radiation proper, before and during the sessions. So getting up to 70 appointments all up. The main side effects of all this have been fatigue, a rather dry mouth, and some blurry vision from the left eye, especially when it is covered over with a whitish discharge. We have been assured by multiple folk that these things are quite normal, and will take a few weeks to settle down. Among these is my radiation oncologist, Dr M, who now wants to see me each week to, as she put it, keep an eye on things. (I see what you did there, Doctor!)

Dr M had originally wanted me to have 30 sessions to the eyelid as well. After 25, I had terrific pain to the eye (as well as looking as if I’d had a good hiding) and said “No more”. (I had to play the “I’m the patient” card with the registrar, who was gung-ho for me to continue. Dr M was far more amenable to my stopping; she said 30 was probably “a bit ambitious”.) Anyway, today’s was the last scheduled radiation session — just to the head and neck, by far the less intrusive of the two treatment sites. So next week, I resume the usual prostate cancer scans, treatments, and consults with the ever so slightly miffed Dr P. The latter, the last time I saw him, said (referring to the radiation treatment) “I can’t do anything with you while you’re having that!”. Well, Dr P, I’m all yours.

For most of September I had ambulance transport into Peter Mac. This was also supposed to happen this morning, but they never showed. PM Patient Transport assured me they could see that the vehicle was on its way — first 5 minutes away, then 20. So we pulled the pin on the ambulance, and my beloved drove me along the by-now familiar route to Parkville.

Being a nosy old bugger, I have found it fascinating to talk to the 20 or so ambos who drove me out and back. On this evidence, there is quite a spread of attitudes towards the job and degrees of burnout. On average, burnout is supposed to happen after seven years. However, some ambos I spoke to have been doing it for 20-30 years or even longer. Some never want to stop; a few others are counting down until retirement age. They were almost all pretty chatty, especially about the job, but many topics were ventilated — some quite personal — during our trips into and from Parkville.

There is quite a number of ambos about; one mentioned that Ambulance Victoria had around 7,000 drivers. This seems an awful lot. But ambulance vehicles come in different shapes and sizes. Mostly I was driven in the seven-seater Honda SUVs beloved of large families — these are reserved for passenger transport. Drivers of these vehicles often specialise in this. However, their numbers are also supplemented from the pool of full-size ambo drivers (those “on the stretchers”, as the jargon goes) as the need requires. Paramedics who generally drive these vehicles welcome the chance to have a more cruisy day on passenger transport. Shuttling patients around also doesn’t require them to make quick medical assessments of sick people; instead they get to chat to people unlikely to be affected by drugs or dementia, and who are thus less prone to abuse or assault them. (The latter happened to quite a few of the ambos I asked about this.)

There is also a spectrum of training competencies. At the bottom of the hierarchy are those only trained for passenger transport; they can administer oxygen and defibrillators, but no drugs. (A lot of these folk are doing this as a second career; some were made redundant, others felt like a change.) Above them are full-blown paramedics; this group subdivides into junior and senior. I asked one young woman, who had been an ambo for four years, whether she still got sent out with a senior partner. She replied that she was now sent out with the new graduates — ambo talk for the young and wet behind the ears — which she thought was crazy.

Having spent most of my library career in post-secondary and tertiary education, I was interested in how ambos are trained. Originally they did a diploma course, several months in duration. This alternated study of emergency medicine with being sent out on the stretchers with a senior ambo. That sounded like a darned good way to structure ambo training to me; most drivers I spoke to agreed. Unfortunately credentialism struck, and the diploma was “upgraded” to a degree course taking longer and involving more theory. Students had placements in which to acquire direct experience. But just how much experience they acquired depended on where they were placed. One young graduate I spoke to had served her placement in a regional centre, where the ambulance shifts were pretty quiet. It is therefore possible to emerge from a degree course without having treated many patients. Such graduates are pretty shell-shocked when they are sent on a shift to Collingwood, St Kilda, or the CBD on a Saturday night. The consensus, regardless of how individual drivers had been trained, was that the old ways were indeed better.