Treatment

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.

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.

Centurion

by feurmann

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

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.