Scans and tests

Fighting the good fight

by feurmann

I’ll write this post in point form.

  • We saw Dr on Wednesday, 19 February. During this consult there was some discussion of how the cancer has now colonised the bone marrow as well as the bony skeleton itself.
  • He mentioned also (apologizing for being blunt) that my disease was now at its terminal stage. (Having gone to stage 4 fairly much straightaway, I had done well to maintain good health for eight or nine years.)
  • Although we knew that I was already in extra time, hearing this came as a shock to both of us. However, there’s no alternative to pushing on down the treatment path remaining to me.
  • I had mentioned in my previous post about a treatment involving lutetium-177. This would be administered at the Peter Mac hospital, at their Parkville site. (I know this well because I had my treatment for the Merkel carcinoma there.)
  • In the lead- up to the consult before last, I had had two scans at Eastern Health in Box Hill, a PSMA PET/CT and an FDG PET/CT. These were meant to assess my suitability for the lutetium therapy. I had expected that Dr P would be able to give me the OK (or otherwise) for this at our last consult.
  • The final say, however, apparently rests with Peter Mac. Dr P has found them a bit dilatory in the past, but they have contacted me several times, the last to make a telehealth appointment on Tuesday 25th of February. I think (and hope) that the answer on this occasion is “yes” — I have already had to pass a few hurdles to get this far — but we shall see. Of course I will keep everyone updated as to what the final final answer is.

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.

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!

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.

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!

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!

Snakes and birthdays

by feurmann

I went to see Dr P yesterday and received some mixed news. The bad: the PSA is now 24, up from 16.The good: he emphasised that I looked “fantastic”, and that the disease is not causing radiological progression. (This will be tested the next time I see him in 4 weeks, by which time I will have had my three-monthly CT and PET scans.) I asked him if he was happy with me and he replied he was “happy with everything”.

Obviously an increase in the PSA is no cause for celebration. However

  • the reading hasn’t doubled (Dr P’s criterion for intervention);
  • one should remember that this is an increase recorded over two months, i.e. double the usual obervation period; and
  • the PSA itself is just a marker of the underlying disease. It is therefore a mistake to fetishise it. It’s not the quantum of the PSA, but the trajectory of the increases that is important. As long as I feel well and can do the things I want to do — both of which are the case — the number can be what it likes. (Short of point #1 above.)

So where do birthdays come in? This morning as I was trying to get back to sleep, I had the following thought. You know how after you’ve had a birthday, you think “Actually, I don’t feel different from when I was a year younger”? A monthly PSA score is a bit like having a different age each month. I was 16 in April, and 24 now in May. Something is happening, but I’m still the same person.

Dr P and I were both away in April (hence the two-month gap between consultations), he in Rome, we in Singapore. Below are some brief impressions from our five nights there:

  • Getting on the plane was a bit ugly (a one hour queue at Tullamarine for seat allocation). We learned later that Singapore Airlines had oversold premium economy. Also, my beloved and I were both affected by an annoying issue about our tickets. The form of name appearing in our passports was different to that on our tickets, the passports bearing our middle names, the tickets not. We had asked then travel agent specifically if that would be a problem, to which she replied “No”. Unfortunately she was wrong. This meant we couldn’t use the automated kiosk for seat allocation, because it couldn’t reconcile the two forms of our names, and we had to find a human to resolve this — who were in short supply.
  • The flight over was OK, and the hotel (the Shangri-La) was fantastic. My left ankle had gotten quite sore from all the standing at the airport, but I bought a (very expensive) sports elastic bandage for it, which made walking around a lot easier. The hotel is in 11 hectares of beautiful grounds, so we had a couple of tentative wanders around there.
  • The weather was very hot and humid — even the locals said so. So it was a bit too hot to walk around outside any distance. Fortunately the hotel had a shuttle bus to the CBD, and taxis were readily available — both air-conditioned.
  • The highlight of the trip was a visit to the Peranakan Museum , a tribute to a particular aspect of Singapore’s multicultural heritage. Fortunately this had a lift! All very fascinating with lots of personal stories.
  • The flight back was on a newer aircraft (Airbus A830), with better entertainment facilities and quieter. We had been to Singapore about 11 years previously, so knew what to expect. It is a very painless and tidied-up bit of SE Asia, redolent with shopping malls, great food, and tous les conforts modernes.

Don’t crack the Easter eggs yet

by feurmann

Following my last scans last Friday, we saw Dr P on Wednesday. The news was much the same as previously. The PSA has crept up again, 16.3 (from 14.7). In his words, this is “neither here nor there”. The good news was

  • the CT scan looks normal — everything the same as last time.
  • ditto for the bone scan. The scan folk mistakenly wrote on my report that there were no prior scan results with which to compare these ones. Of course I have been having these scans every three months for the last few years. Dr P rang them during the consult to query this. Whoever he spoke to found the previous results and said “nothing’s changed”.
  • Dr P is going away in April, and happy to kick my next consult with him forward to May, i.e. in eight weeks.
  • At the last consult we had asked him about going away for a holiday. He said he would be guided by the next scan results. So the uneventfulness of these scans led him to give us a leave pass until my next appointment with him.

I have been taking prednisolone over the last few weeks for the sciatica — see below. My GP wanted me to have a DEXA scan to establish baseline bone density data. (The scans I have with Dr P don’t give the right data for this.) So recently I had a BD scan, followed by a consult with the GP to discuss these results. As above, everything looks normal. The BD scan surveyed in particular the lumbar spine, femoral neck, and hip areas. (The thigh bone’s probably connected to the hip bone, or however the song goes. So sue me.) The lumbar spine is “in the normal range”. The left femoral neck is technically in the mild osteopenic range, but only just. (The osteopenia T-score range is between -1 and – 2.5; I scored -1.1, so only just within the range.) I eat plenty of calcium, and exercise quite regularly, so wasn’t expecting to have low BD. Nevertheless, it’s always good to have these things confirmed.

(We all know prednisolone reduces bone density. So in order that the DEXA scan would give me a proper set of baseline results, I held off on taking it until after the scan.)

The consult with the GP explored whether I could have something other than prednisolone. I said I had tried stretches, analgesics and anti-inflammatories, none of which worked satisfactorily, whereas the prednisolone does. (The effect of one 25 mg tablet each morning, followed by a coffee, is quite magical.) The GP ended up giving me a script for another medication, tapentadol, which should have a similar effect to the prednisolone, but without its side effects. I am yet to try this one; I have first to taper down the prednisolone over a week or so.

When too many Beethoven concerto cycles are never enough — I am just listening to the recent recording on ABC Classics with Jayson Gillham, the Adelaide Symphony Orchestra, and Nicholas Carter. I had heard most of this when first broadcast on ABC Classic (to whom a shout-out for promoting Australian musicians is due). Gilham has plays with neatness, clarity, and spontaneity, and gets up quite a head of steam with Carter. All beautifully recorded at live concerts in the Elder Conservatorium. I actually like it even better on CD. Who else have I got? Stephen Kovacevich/Colin Davis, and Maurizio Pollini/Claudio Abbado are the only complete cycles on modern instruments. (I also have several of the Christian Bezuidenhout/Pablo Heras-Cassado cycle on original instruments, which are quite fabulous.)

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.