Treatment

Who needs Commonwealth Games?

by feurmann

We saw Dr P yesterday morning, and the news was mixed. The PSA at the last test was 47 — a rather unenviable record — even a PB. There are always “howevers”, though, and here they are:

  • Dr P said he would need three consecutive rises in the PSA to consider changing my treatment (i.e. to chemotherapy).
  • In any case, he can’t move on this while I am having the radiation treatments at Peter Mac. Fortunately
    • He thinks there is no urgency to go with some more chemo.
    • I should be finished at Peter Mac by mid-September. This fits in with my next appointment with Dr P. So there should be no WICOS problem. (This is a useful acronym for “Who’s In Charge of The Ship”.)
    • By mid-September, I will also have had my regular three-monthly CT head and neck and bone scan. From this, Dr P will have hard evidence on whether to embark on another round of chemo.
  • Dr P said “On paper, you look terrible, but in person, you look fantastic”. (You will all remember that he places more store in the latter than the former.)

I certainly feel fine, and haven’t noticed too many side effects from the radiation treatment. What side effects I have noticed are a bit more fatigue, and a slight loss of focus in my left eye (the one being irradiated). I have reported the latter to my radiation oncologist; the effect should be temporary. I still have enough focus in the left eye to drive; I guess also the right eye takes over somewhat to compensate. (I have to stress that the radiation therapists take great care to shield those areas of the eye not being irradiated. Doing this takes most of the appointment — the actual radiation only takes a few minutes.)

Today I start the double appointments, i.e. the left eye first, then the head and neck area. Because they are done on different machines, they have to be separate appointments. But the Peter Mac folk have brought them as close together as possible. Getting in and out to these appointments should be easier from next week, when patient transport via the ambulance service will start. (I blogged about this in One Week In .) I found, after about an hour of fooling around on the Ambulance Victoria site, your doctor has to get the ball rolling on this. Fortunately, before I embarked on the DIY approach, I had first left a phone message with the Peter Mac patient transport folk. They rang me back, and it was all set up.

Meanwhile I have two more days remaining of being driven in by my beloved. I am not only deeply appreciative of her doing this, but I also get to chat with her at a time when she would normally be working, which is really lovely. She has also stepped up to the plate, as it were, in the kitchen. Truly a heroine!

Season 3 of Only Murders In The Building is providing a good distraction from all this. Disney+ is doling these out somewhat; as of 8 August, only two episodes had dropped, which we watched one after the other. Apparently this belongs to the genre, probably invented by Agatha Christie, known as “Cosy Murder”. For those who would like to check this show out, APPARENTLY OnePass offers a free 14 day trial of Disney+. (The all caps denote that I haven’t tried this offer myself. No care or responsibility taken. Unfortunately I’m not getting paid anything for this promotion.) I think Seasons 1 & 2 are still available. As Peter Cundall used to say — OK, that’s your bleeding lot!

Merkel vol. 2

by feurmann

You will remember, after the sentinel lymph node biopsy, I was to be told the results of this operation. I did hear about this last week, and the CT scan did show some isolated and small Merkel cells in one of the lymph nodes. Consequently my radiation oncologist at Peter Mac, Dr M, has started me on a course of radiation directed at the lymph nodes in the head and neck area. This course will overlap the one which has already started for the upper left eyelid, and will be of about the same duration. Both courses of radiation are now to be administered five days a week, instead of four as previously. The object of this is to shorten the duration of the overall treatment. I now expect to be finished with the lymph node treatment about mid-September. I am not sure exactly when the lymph node treatment will begin — possibly next week. Dr M, who is overseeing both treatments, will try to keep the two appointments as close as possible each day, so we are not hanging around Peter Mac for too long.

As preparation for the lymph node procedure, I had a mask made to cover the entire head and shoulder area. The mask protects areas other than those on which the treatment is focused. It is made of a kind of white plastic mesh. It was first soaked in warm water, then applied over my head. It shrank a bit to fit the contours of my face — a weird sensation, about which I had been warned. While this was in place, I then had a CT scan. Including waiting for one of the assistants to turn up, all this took about an hour. It was followed by the usual radiation session for the upper left eyelid.

The prostate cancer treatment of course is continuing. I have made a mental note to tell Dr M to keep Dr P in the loop about the lymph node business. (Last time I saw Dr P, he knew I had been referred to Peter Mac.) I will be seeing him next Wednesday for my regular monthly consult. In preparation for this, I had a blood test on Monday. Afterwards I repaired to an op shop, handily just across the road from the pathology place, where I have previously found some decent CDs and vinyl. This time I scored a nice cardigan, a sort of ginger or peanut butter colour, and a terrific piece of knitting — very tight, no missing buttons. (From a few hanging strands inside, presumably from where the wool ball had run out, we surmised it had been hand knitted.) Op shops seldom have jumpers that are worth wearing, being either pilly, food stained down the front, or both, so this was a good find.

One week in

by feurmann

So far I have had four radiation sessions for the Merkel carcinoma discovered on the upper left eyelid. This feels like enough sessions from which to report on how things have gone so far.

First, getting in there is a lot easier than it could otherwise have been. As previously reported, my beloved is steadfastly driving me in to the appointments. These are all scheduled, from Monday-Tuesday and Thursday-Friday, at or around 2.00 pm. (No sessions on Wednesdays.) We allow an hour for the trip, so leave after an early lunch.

(There was a potential alternative means of getting in and out mentioned by the Peter Mac people, i.e. free patient transport both ways. Ripper, Rita! Unfortunately, as with so much else, when investigated, this proved to have a few hairs on it. This patient transport service is provided by Ambulance Victoria; to use it, one has to be a paid-up member of theirs. We had vaguely thought that we were covered for ambulance transport through our health insurance fund. We are, but only for emergency transport. We have since joined AV, of course, the cost of which was quite modest. There is, however, a 14 day waiting period on non-emergency patient transport. So much for being a free rider — no pun intended. The hospital did warn me that return trips could be quite delayed, for reasons of which they weren’t quite sure. Nevertheless, when I qualify I will definitely investigate it. In the meantime, though, it is not totes terrible for my beloved. She takes in her laptop and connects via the Peter Mac wifi. Being on sick leave from her employer, she is excused from having to drive in there twice a week. She is still doing a mighty job!)

Second, the sessions themselves are not a big deal. Someone comes out to fetch me and waves their way through secure doors to the radiation department. Within these hallowed halls another radiographer, or whatever they are, is waiting alongside the machine that does the business. I recite my name, rank and serial number each time — they are keen to avoid zapping the wrong patient — and recline on a narrow sort of bed with side rails. (They raise it for this purpose, following the reverse procedure afterwards.) They put a couple of numbing eye drops in the left eye, and fit a lead mask (this was fitted around the contours of my dial in the measuring session the week before last). After the drops have had their effect, the radiation folk gently slide in the metal shield that sits on top of my cornea. This is a bit like a large contact lens, fitting underneath the upper eyelid, which holds it in place. The drops numb my eye to the point where I can feel the shield going in and sitting there, but without any discomfort. Obviously all this faffing around is because of the location of the carcinoma on my upper eyelid, and the corresponding need to protect the surrounding areas. So whatever they do is fine by me!

When they are happy, one of the radiographers goes through a brief checklist with the other covering what they have done and to whom. They tell me not to move, and retreat elsewhere before starting the actual radiation. This only lasts a few minutes, but I am still rather glad to hear their footsteps approaching, followed by their congratulations for having done such a good job of lying on the bed. They put an eye patch over the left eye, and I make my way back out to the waiting area. (The eye patch is in case the eye gets some grit in it. Being still numbed from the drops, the eye wouldn’t give the usual signals that would prompt one to rinse out the grit. Damage to the eye might therefore result. This is typical of the thoroughness and foresight of the Peter Mac radiation staff.)

The effect of the sessions is mainly in feeling a bit tired when we get home. Apparently the side effects are more apparent the more sessions one has had. These side effects are felt mainly on the eyelid and eyebrow; the former becomes red and irritated, and the latter tends permanently to disappear. (My beloved is being very assiduous in daubing a cold cream-like ointment on the eyelid, and “encouraging” me to drink five glasses of water a day. These are preventive measures the nurse we saw earlier recommended.) Last week I felt well enough to go to an exercise session on Wednesday — something I intend to keep up.

Make mine a Merkel

by feurmann

Avid readers (such as all you lot) will remember I was booked for a sentinel lymph node biopsy in at the Peter Mac yesterday.

This went uneventfully, if rather lengthily. We were booked in for a 7 am arrival at Peter Mac, meaning a 6.15 departure from Burwood. (A general anaesthetic being involved, I had had to fast from midnight, which simplified the morning arrangements.) There was a surprising amount of traffic on the freeway at that time, but after winding our way down to a subterranean level of the PM multilevel car park, we were there pretty much on time.

PM is a very modern hospital. On arrival, one stands in front of a temperature check machine. If one satisfies its requirements, it dispenses a sticky label to denote one’s patient or visitor status. The lifts are fun too. On selecting the required floor from a touchpad, an automated voice intones “Car N” (or whatever it is). Once inside, no need to press buttons — the lift knows where it’s going. (Dad would have loved it!)

Mine was a two part procedure. In the first, I went to the day surgery department, was assigned a cubicle, put on a standard hospital gown, and packed my possessions into a few plastic bags (which remained in that cubicle). I was then guided to the nuclear medicine department for three injections with a radioactive substance. The purpose of these was to highlight any lymph nodes around the face and neck area to which the Merkel carcinoma had spread. The injections were administered in the skin between the eye and eyebrow, and were rather painful, of which I was forewarned. One of the staff kindly gave me her hand to squeeze at this point. I got a lot of congratulations on my bravery! (I bet they tell all the boys that.)

Then followed a couple of periods of lying on a gurney under some high tech machinery to see what lymph nodes were lighting up. Two goes at this were required because the radioactive stuff hadn’t worked its way around. (Apparently there is quite some individual variation as to how long this takes.) After pacing around the huge machine a few times, doing some stretching, and massaging the area where I had had the injections, they laid me down to try again. “I think we’ve got something!” someone said. An orderly helped me get up (about an hour in total on the gurney, I was pretty stiff) and onto a wheelchair, and he and I headed back to the day surgery area.

Here, when my number came up, I was transferred to a kind of mobile bed, thence to the anaesthetic room. Here I was asked for about the fourth time that morning my name, address, and date of birth. Satisfying these requirements, a team of two anaesthetists (!) and an anaesthetic nurse swarmed around me and knocked me out. I woke up minus one or more lymph nodes back in the cubicle. My beloved had been working away productively on her laptop all the while in the hospital’s Wellness Centre. I was offered a sandwich and a coffee, both of which I accepted gratefully. Then I whizzed home with my beloved in the RAV, arriving about nine hours after we had left that morning.

As anyone who has ever had an operation will recognise, this is a rather bare account. There were a few quite lengthy delays between the main events, mainly due to waiting around until various people were available, until the radioactive injections had done what they were supposed to do, and until my number came up on the surgical list. Everyone was very kind and kept us both informed as to what was going on. This morning the area in my neck where the surgeon had made the incision was quite swollen and a bit sore. I didn’t need any pain relief for this, though, and generally didn’t feel too bad. I will be having a further consult with the surgeon next week to discuss the biopsy results. At some point (I’m not sure exactly when) the radiation treatment will begin, to last about 5 weeks. I guess the particulars of this treatment will be guided by what the biopsy tells them. TBC!

You should have seen the other bloke

by feurmann

This morning I had a brief operation to remove a small growth on my upper left eyelid. (For some reason, the picture above is reversed; the shiner is definitely above my left eye.) The growth had been detected during my annual eye test. I hadn’t really noticed this; it was blocked by the upper frame of my glasses, and I couldn’t see it when I wasn’t wearing my specs! Anyway, the optometrist recommended that the growth be removed by an opthalmologist.

I saw the specialist to whom the optometrist had referred me, Dr L, last week. He said it probably wasn’t cancerous, but that pathology tests would confirm this. If it turned out to be, he would need to take out a bit more. (The plus side is, in that instance, my health fund would pay a rebate for the first operation!)

My original appointment at the eye clinic was for 10.45 this morning, but they rang about 9.15 and asked if I could come in earlier (they had had a cancellation). This suited me and my beloved, who was to drop me off there and pick me up afterwards. (This was necessary because I was to have a local anaesthetic and eye drops.) Anyway, we beetled off there about 9.30. After an extensive induction and history-taking (all of which had taken place at the earlier consult), an anaesthetist gave me a local and some other shot to reduce any anxiety I might have, and Dr L speedily removed the growth in the clinic’s theatre.

I had had to fast this morning, so was glad to have a couple of cups of tea afterwards — they didn’t run to real coffee — and a sandwich. The only real holdup came when exiting the practice.

The building is situated on sloping land, with a small concreted area of outside the front door, clearly intended for short-term pickups and dropoffs. There is a narrow driveway running downhill to the right of the building, which leads to the practice car park. Because of the slope of the land, however, patients entering the practice from the car park need to climb quite a steep metal staircase, which has a right angle bend in it. The nurse therefore directed me to tell my beloved to park on the concreted area outside the front door, so I could exit without going down the staircase to the car park. (I had a patch over the left eye at this stage, and was still feeling the effects of the anaesthetic. These things would have affected my depth perception and so on.)

The problem with this sound advice was that there was already a car parked on the concreted area outside the front entrance. My beloved therefore went down the driveway, heading for the car park. She couldn’t even park there, however, because she was blocked by a truck making a delivery! Regardless, the nurse was adamant I couldn’t walk down the staircase, even with assistance. Of course they couldn’t have prevented me if I’d insisted, as I was on the verge of doing. (I just wanted to get out of there at this stage.) Anyway, my beloved drove around the block and parked behind the illegally parked car. I resisted the urge to let down its tyres as I made my exit. (Had I had my wits about me, I would have keyed one of its doors — I was pretty cross that its owner was being so selfish.)

Anyway, all is done now. My beloved reckons I look as if I’ve been in a fight, I’ve resisted giving way to my anti-social urges, and am being waited on like Lord Muck. For a while I even looked like the Whitmont Man!

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!

A moderate start to 2023

by feurmann

We saw Dr P this afternoon for the first appointment of the year. (He had been on holidays in January. Rather than being referred to someone else for a one-off consult, he and I had agreed to skip the January appointment.) Anyway, my PSA had risen slightly at the blood test a week ago, to 14. However, a rise of 1.2 over two months is nowhere near doubling. So no-one was bothered by this development.

The only complaint I have had since my last consult is the sciatica, which has become quite persistent. I had been told about various stretches, all of which I have been carrying out. The sciatica just keeps coming back, so persistently that it kept me awake last night. So yet another medication is called for. With Dr P’s blessing, last week I started a short course of prednisolone. (Family members will remember that our mother was taking this steroid for yonks.) According to Dr P, this drug is used in chemotherapy, and could well bring down my PSA a bit. My initial impressions of it were positive — it seemed pretty efficacious. However, this seems to be wearing off. (No-one wants me to be on it for long anyway. I am well aware of its effects on bone density and so on.)

These early efforts having proved ineffective, today I booked an MRI of my lumbar spine to see whether there is any disc compression going on. Fortunately the scan clinic had a vacancy for tomorrow afternoon. I will be seeing my GP the following Monday (20th) to see what, if anything, this scan reveals. As far as I know there are not that many treatments for sciatica other than a steroid injection. If this is appropriate — bring it on! TBC.

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.