Hormone treatment (ADT)

80 is the new 70

by feurmann

I’d written that I wouldn’t be posting after each consultation with Dr P unless there was something new to add. The consult we had on Wednesday satisfied that requirement, more in the comments that he made than in the numbers. The PSA, kidney and liver functions were all as per previous scores (the latter two being in a normal range). The alkaline phosphatase (ALP) score is now within a normal range. (This measures bone destruction vs renewal.) The full body CT and head-and-chest scans I had had a few days ago showed a normal pattern with reference to February, i.e. no change.

Dr P said I seemed to be very stable, and he was very happy with how I was going. Then he added that his record for a patient was 80, and would I like to go for that? I replied I would take each year as it came. However, the question was reassuring: a few more years of being around might well be inferred. (Dr P was obviously not promising anything, but I don’t believe he would have asked the question if he hadn’t thought it applicable.)

So — with whatever we are all struggling, and dealing as best we can, with the best support we can hope for — may everyone finish 2024 on a note like that! Try to overdo things on the day, and thank the Lord for dishwashers.

Limping along

by feurmann

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.

Nothing much to report

by feurmann

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.

The devil’s number

by feurmann

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.

Movement at the station

by feurmann

We went to see Dr Parente last week. Preceding this appointment on 7 June, I had had the usual blood test, and following that the three monthly CT and head/chest scans. I had been feeling tired and just vaguely unwell, without being able to put my finger on just why. So I wasn’t expecting great news.

There wasn’t much of that forthcoming — the PSA is now 32 (up from 24). However, Dr P was, as usual, quick to provide reasonable and reassuring observations:

  • As ever, he cautioned against being too obsessed with the PSA score to the exclusion of other things.
  • He observed that I was seemed very well, was generally feeling well, and was much healthier-looking than most of the patients I could see in his waiting room.
  • The fact that I was still carrying some COVID kilos was a sign that I didn’t have progressive disease.
  • My alkaline phosphatase (ALP) score had not risen, remaining in the normal range. (ALP is a liver function enzyme; there is a good little article about it at verywellhealth.com.)
  • The doctor who had reviewed the current lot of scans thought that I was experiencing mild progressive bone disease. Based on the points above, Dr P disagreed with this judgement.
  • The fatigue I was experiencing was one of the major side effects of enzalutamide.

I think I just have to get used to the PSA increasing, as it has done the last however many times. As long as I am feeling well, that is OK (although I continue to feel tired — more on this below). Dr P is holding off on another round of chemo for now; it would, as he pointed out, be quite intrusive and destructive of the activities I am now enjoying.

Another reason for the fatigue is that my iron scores are again decreasing, from 61 to 21. I had low iron last in about 2017; I experienced the effects of this as being easily puffed when climbing steps or inclines. I was referred to a gastroenerologist to investigate this, who gave me a colonoscopy, a gastroscopy, and a capsule endoscopy. None of these provided a reason for why my iron should be decreasing. He referred me to have a couple of iron infusions, which did the trick in terms of bumping up my iron, but which I found quite time-consuming. So I requested instead to go on iron tablets, of which I have one each morning (a Ferro-grad C). The blood tests I was having at that time revealed, however, a suddenly elevated PSA level. When prostate cancer was diagnosed, the low iron was pushed into the background.

Six years later, it has re-surfaced; I believe it is behind the fatigue and shortness of breath I am experiencing. My GP got together with Dr P, who referred me to another gastroenterologist, who practises in the same building as Dr P. I am seeing this gentleman, Dr Bloom, on the morning of 5 July. (On this day I am also seeing Dr P, and having my Zolodex implant.) So I will probably be having more iron infusions. The original round of these was delivered in 2017 in the day oncology unit at Epworth Eastern. This is a place I have gotten to know well over the last few years. This was where I had the original iron infusions, a round of chemo, and (following this) my three-monthly Zolodex implants. Anyway, I’m sure the new round of infusions will make me feel less lethargic.

Mixed in with these intestinal matters is also a small matter (I hope) of a little crusty growth that my optometrist noticed on my left upper eyelid. So I have been referred to an ophthalmologist to have that looked at, and probably removed.

We have been a bit in the wars of late. My beloved has had a recurrence of the pain and swelling in her right jaw and cheek respectively. A trip to the dentist and some X-rays revealed an infection, which is being treated with antibiotics (probably a couple of courses). She is soon to see an endodontist to have this investigated and dealt with. Meanwhile the antibiotics have greatly reduced the pain and swelling. Thank goodness for modern medicine!

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.