Chemotherapy

Intelligence so far

by feurmann

For about six weeks I have been experiencing feelings of faintness and dizziness when I stood up. My exercise physiologist measured my BP when I stood up, and found quite a drop compared to the measurement of the sitting condition. She altered my exercise program, which I am now having one-on-one rather than in a class.

Following this, I have had a few new things happening:

  • a transfusion of a couple of units of blood, and
  • having scans to assess whether I should move to lutetium-177 treatment.

For some years I have had moderate iron anaemia. Tracking down the causes of this condition had been thoroughly undertaken by my previous gastroenterologist, by way of a colonoscopy, gastroscopy, and use of a pill camera. Rather than repeating these rather invasive tests, my current gastro, Dr B, had chosen to do various blood tests, and contrast their results over a few months. My haemoglobin had been 89 in January 1924; it was now 83. Red blood cells were deficient (I don’t have scores for this). He decided I was moderately anaemic.

Dr B thus arranged for me to have a bed in the hospital and have a transfusion of two units of blood. This was done; my beloved ferried me in some PJs, a clean shirt, and a change of socks and undies from home. She also obtained my evening and morning meds and my e-book reader, an ideal piece of kit for these circumstances. This enabled me to just settle in and wait for the blood to be obtained, a process that took several hours.

The transfusion was a slow process too, only finishing about 11.00 that night. I felt better afterwards, and had more colour. Fortunately, also, the faintness and dizziness on standing up has virtually disappeared.

Dr P wants me to cease the chemotherapy, moving instead to a newer treatment involving lutetium. (This treatment is well explained here, so I won’t attempt to paraphrase it.) First, however, I have to have two scans to assess my eligibility for the treatment. I have had one of these scans; the other will take place tomorrow. I will then be seeing Dr P this coming Wednesday, who will explain the scan results, including the all-important yes or no to my being able to commence the treatment. I’ll post or email following this consult.

 

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.

Nothing much of note

by feurmann

We saw Dr P on Wednesday, as normal before my chemo infusion later that day. The results from the most recent blood test were in line with those from the last few. Liver, kidney functions and blood glucose were all OK, and (or “but”) the PSA continued to rise. The quantum of this increase isn’t important; what matters is the doubling rate — the time period after which the current result would be double the previous one. If my PSA were doubling after four to six weeks, that would be cause for alarm. At the present rate, however, it would take about six months. The doubling rate, therefore, in Dr P’s words, “hasn’t really moved”. So — situation normal. (I’ll leave you to supply the rest of the acronym.)

The infusion was also unexceptionable. As usual I took along an e-book reader, my mobile phone, and a pair of noise cancelling headphones to help pass the time. A few days afterwards, the side effects are also as per — mostly classifiable under “chemo brain”. This syndrome mostly manifests itself as fatigue, some sleep disturbances, poor short term memory, and general woolly-headedness. (I seem to be a bit more tottery on my legs as well — not badly enough to use a stick — just to walk with extra caution.) The infusions’ being three weeks apart (give or take) seems just enough time for me to get over these side effects, and start feeling quite normal. The next lot of CB then ambushes me afresh: deja vu all over again! Fortunately my beloved reminds me that this is not my first rodeo, and I’m not losing my marbles just yet.

I had some treatment for the ankle sprain from a physio, who strapped it up and gave me some exercises. Further to this, my beloved and I went to to a local gym earlier today, where I had a gentle excursion on an elliptical machine and (briefly) a recumbent bike. This exertion seems to have not caused any pain or discomfort.

Mundane Monday

by feurmann

Our consult on Monday morning last with Dr P yielded, at last, some good news:

  • The PSA is down to 542 (formerly 625); and
  • the bone spots are reducing in activity, and thus in size.

There was some discussion about the latter of these. Dr P commented that visceral spots are easy to imagine; they can be compared to a pea, a marble, or an egg, or whatever object fits the size of the spot best. Spots in bone are a bit harder to conceptualise because they don’t differ so much from the surrounding tissue. Therefore they are described in terms of avidity, or as “hot spots” which can vary, over time, in temperature. I am not certain, after this discussion, whether this temperature scale is metaphorical or actual. Whichever it is, my hot spots are cooling down a bit, so frankly, I’m not fussed! My reading is (and Dr P confirmed this): the spots can go up and down in terms of activity. At the last scan, they tended to the latter. This can lead to me feeling somewhat better or worse.

Dr P commented that, at our first consult, he would not have imagined me still being here six years later — let alone looking and feeling so well. He has never said anything unconsidered, and this might have seemed a touch blunt. But as ever he was actually being considerate in not allowing any unrealistic hope to creep in. I have been in stage 4 from the outset, and no-one ever thought or suggested it was going to go away. Fortuitously I had a session booked the following day with my psychologist, Goldie (not her real name). She suggested I see, and enjoy, this period as “extra time”. I’m certainly feeling very well, and, just as importantly, that I’m coping well with the treatment. To cap off a busy three days, I had a chemo infusion the day after, which wasn’t problematic in any way.

The takeout is: the treatment is pushing back (my words) on the cancer, and therefore the pain I had been experiencing. Dr P said he thought successful treatment rested equally on the doctor, the patient, and the patient’s home support. Can’t add much to that, really!

Dr P appointment, chemo, and new infusion

by feurmann

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

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.

Chemo again

by feurmann

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.

Down a snake

by feurmann

I have been a bit remiss in writing up my consults with Dr P, having missed the previous one (11 May). However, as has been previously remarked, the trend (rather than the quantum) of the PSA results is what matters. Unfortunately, the trend is not my friend at present. The previous number was 3.9; the most recent one (from 8 June) was 6.2. This is not doubling, but more of an increase than anyone would like. So I will be having another round of chemo.

Before that I am booked in for another CT scan on Monday, 4 July. This will reveal any new developments. I will be seeing Dr P on Wednesday, 6 June, at which time he will fill me in on the CT scan results and arrangements for the chemo. This will be my second round of this treatment, one of the “cut, burn and poison” trilogy. Fortunately, I seem to tolerate all these pretty well. As with the previous round, the chemo will be administered at Epworth in Box Hill, pretty close by. I don’t at this stage know how long it will take, the frequency of the doses, etc. Stay tuned for details.

Fortunately as well, I am feeling fine. I put this down in large part to continuing to exercise, mostly in the mens’ oncology classes at my exercise physiology practice. (I will be informing them I will be going back onto chemo so they can adjust my program if necessary.) My walking has been curtailed quite a lot by soreness in the left ankle. This has been a problem for a long time, so I think this is just an overuse injury after a lot of walks during lockdown. Before I used to just strap it up, but now even this isn’t having any effect. So I will probably get an exercise bike for an aerobic workout (the ankle isn’t bothered by that movement).

I have been occupied recently with installing a new Denon receiver in the living room. The previous one, a Harman Kardon, worked perfectly well, but was just a bit unexciting. I was initially looking for another stereo receiver, but the home theatre-type ones were actually much more reasonably priced, as well as offering more functionality. I have the Denon hooked up for 5.1, (something that took most of a weekend), and it is definitely much more punchy. It bristles with useful features like internet radio, sound modes, and numerous digital as well as analog inputs, including one for the turntable. (The HK only had analog inputs). Staying home and watching movies or TV series is a good winter activity, but the receiver works equally well for music.

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Sir’s undetectable

by feurmann

There was a line of wigs or hairpieces widely advertised in the media of the 1960s or 70s as “Sir’s Undetectable”. I am hoping that someone of my vintage, or thereabouts, can confirm (or otherwise) that I am spelling “Sir’s” correctly with the apostrophe after the “r”. These products were legendary in our family as “Sir’s detectable“!

Dr Google can only turn up a Yellow Pages advertisement for “Sir’s For Men Wigs & Hairpieces” in Baulkham Hills, Sydney, which assures us that this is “A Name You Have Relied On For Three Generations”. My curiosity being aroused, I turned to Trove, where I performed the following search . This only found results from advertising in the Canberra Times from 1980 onwards. These advertisers of this era were unsurprisingly unsure about whether to spell their product “Sir’s”, “Sirs” or even “Sirs’ “, resorting to all three spellings in the 19 ads retrieved. That apostrophe was indeed a pesky piece of punctuation! Is there a grammarian in the house?

There is indeed method behind all this tonsorial nostalgia. My last PSA result repeated the previous one, I think it was, as 0.01. Apparently this amounts to  being undetectable. (I had been hoping for the “bagel score” of 0.0, but I guess the .01 part is a courtesy amount, rather as people refer to retired military or politicians by a courtesy title.) Anyway, I remain happily in remission. The last chemotherapy session went well, as all the previous ones had. Only one to go, on Boxing Day! (I will be seeing the good Dr P on Christmas Eve to get the go-ahead for this final infusion.)

I am still enjoying punting the little Toyota around. The previous weekend I had the chance to stretch its legs a bit on a run down to Cranbourne. This was the first time I had had it on a freeway. It felt very stable and solid, and there was no problem keeping up with the other traffic. It isn’t the best car for an interstate cruiser, being a bit noisy on coarse-chip road surfaces. But it was definitely fun. I think what is enjoyable about it is not just the attributes of the car itself, but the fact that I bought such a wildly unsuitable and midlife-crisis advertising vehicle in so insouciant a fashion!

Still, I am trying to make it as practical as possible. I had the full size spare wheel fitted and the steering wheel re-covered at the dealer’s (these things having being folded into the purchase agreement). I also had a sunvisor and the reversing camera replaced, both under warranty. It remains a delightful car in being easy to manoeuvre around shopping centre carparks, small enough to fit in most car spaces, and very sporty in which to whip around corners. I am also getting the hang of various features like the ability to retract the side mirrors at the press of a button.

On one of these shopping expeditions, I left it in a brand-new supermarket carpark, and returned to find dark red fluid leaking from underneath its nose (or so I thought). On checking the service record, I found that the last service had occurred about nine months ago. This being, oddly, the service interval for this vehicle, I took it to my local garage for a workshop once-over. They replaced all the fluids, and declared that no leaks could be found. The previous owner having been pretty spotty with the servicing, I know it has been brought up to where it should be.

What’s been and what’s to come

by feurmann

Before the main part of the post, there is a small addition to the Resources page in the form of the NCI Dictionary of Cancer Terms .

We are now just a few weeks from Christmas. Those who know me will know this is my favourite time of year! (Not.) Still, it brings us to a sort-of review time for 2018.

The last twelve months has been one of numerous changes, and some milestones. I bought a new car, and we replaced some big-ticket things like the ducted cooling and the bed. The Blu-Ray recorder, and some electrical equipment, was also replaced. For the first time ever, my beloved moved to part-time employment. Most importantly, we are to celebrate our twenty-fifth wedding anniversary at the end of this year.

It has also been a huge twelve months or so health-wise. My treatment summary from November 2017 to now is the story of my cancer:

  • radical open prostatectomy
  • subsequent treatment with a physiologist specialising in continence
  • referred to a radiation oncologist, with whom I
    • had radiation therapy, with moderate success
  • then referred to a medical oncologist, with whom I
    • had androgen deprivation treatment and chemotherapy.

Of course the last of these is ongoing. However, being in remission is a great result for the treatments I have received under the care of Dr Parente and the staff of the oncology ward in Epworth Eastern. My GP has been terrific as well — someone I have been seeing for many years. Modern cancer treatment of course relies on adjunct modalities, and I feel my exercise physiologist (a recent referral) will become someone else I rely on.

My progress through these treatments has been one from specific to general, i.e. from treatments focusing on individual mets, to ones that are treating the whole body. This has been driven by the failure of the specific treatments to keep pace with the growth in the tumours.  I believe the progression in the treatments is also from ones with lower potential side effects to those with more potential side effects, but more efficacy. (Time, as ever, will tell.)

The chemotherapy  has been less of a big deal than I expected. I have dropped some social engagements in order to lessen the risk of opportunistic infection — something my immune system is less able to handle than usual. However, I haven’t wanted to become a recluse. So new year resolutions include doing a better job of keeping up with people, both individually and through groups like the local Cancer Survivors.

The chemotherapy is adjunct with androgen deprivation therapy. Their combination gives apparently an increase in efficacy of 10% in absolute terms, over either treatment singly. I started with the ADT some weeks before the beginning of the chemo, and I will continue with that as long as I remain in remission.

(On the subject of keeping up with people, we have been having a lovely time just recently having an old friend to stay for a couple of nights. She came down from Sydney for Die Meistersinger at the opera, which we all saw last night. Amazing! The second act was quite the most spectacular I have ever seen live. The orchestra played every bit as well as the Gewandhaus, whom we heard in the Leipzig Ring, and everyone acquitted themselves extremely well in the principal roles, especially Michael Kupfer-Radecky, the third singer to be engaged as Hans Sachs. And Warwick Fyfe as Beckmesser! Is there a better anywhere? Anyway, I hope that 2019 includes more Wagner as well as more socialising. Wagner’s beautiful libretto also gave me the latest candidate for my memoir title: How spring has to be.)

I need to do more to keep the remaining grey matter active next year, too. I think 2018 was the year of Karl Ove Knausgaard. (I have the final volume of his autobiographical novel sequence to finish off.) I feel that enrolling in a course would keep me at something better than if I were just doing it under my own steam. Some candidates include a couple of online masters programs in creative writing. Doing the internet course Modern Poetry over the last few weeks was great as well; it is very well-supported. Hearing the beautiful German in the Wagner last night, however, and even understanding bits of it, put this further up the batting order as something I could re-engage with.

I would also like to read through In Search of Lost Time again, with a group. Ever thought about it? Or even just wanted to see what the fuss is about? (For example, Maugham regarding it the greatest novel of the twentieth century.) I will do it via Skype, if required. So come on, all you wavering Proustians! Carpe the diem, grasp the literary nettle, and let’s get down to it. I can issue a portentous promise — your lives won’t be the same.