Less good news

I have been procrastinating about writing this, so I am just going to get it over with. We saw Phillip P on Wednesday 9th (about 8 days after my appointment with Pat B). Unfortunately the “gains” that Pat reported, in terms of a reduction in PSA score, have entirely been lost. The score that we got from Phillip was 6.5, which is back to where it had been before the radiation treatment.

Phillip made several points about this. (Sorry, I have forgotten how to do numbered lists in this infuriating blog editor.) First, he found the increase “not upsetting”, and he hoped we were not perturbed by it. Second, he understood also that people made a fetish (my word) of the PSA score. However, the metric that he is focused on is the doubling rate, i.e. the time interval in which the PSA score doubles. A doubling rate of 6-8 weeks would cause him concern, but he feels I am a long way off that. Third, 90% of his consultation time is spent reassuring patients and their carers about PSA scores. So he gets that people find these increases worrying. (He was at pains not to ridicule or downplay our concern.) But he would like us to look, not just at the quantum of the score, but at its rate of progression. Fourth, he has many other treatments up his sleeve.

As to when it comes time for me to move to the next treatment, as he has said previously, Phillip wants to keep me on Zolodex for as long as possible. Let’s call the its successor “Treatment 2”. Say Treatment 2 has an estimated efficacy of a year. If I go onto it now, I will get a year out of it. If I go onto it in six months, I will get eighteen months out of it. So that is why he wants to defer Treatment 2, and its heirs and successors, for as long as possible. (Phillip has said to me before quite bluntly, that the fewer treatments I have, the better.) Treatment 2 will be deployed at a rapid rise in my PSA. But we ain’t there yet.

I was due for another Zolodex implant after the consult with Phillip, which I had without incident. I will go on having these every three months until I move to another treatment. I will continue seeing Phillip every 6 weeks, and having a CT whole body scan every three months. (The next one of these is booked in for 12 July.) So I remain under close surveillance.

It took us a while to digest this news. On hearing it, and the rest of that day, we both felt a bit stunned. What made me feel better, actually, was doing some German homework. Everyone deals with adversity in their own way, and this is mine. We both felt more positive the next day, having had some time to get a better grip on the situation.

It was obviously disappointing that the radiation treatment didn’t have more effect. However, Phillip has many arrows left in his quiver, and we are confident that he will deploy these as the situation dictates. I am still feeling fine, exercising, doing stuff on the home front, and all the other things I have been doing. So there are a lot of positives to focus on — take it from me, we are doing just that! To this end, I would also like to maintain the moratorium on questions. I say this for two reasons. One, I just don’t have any more information to add to what I have written above. Two, I don’t want to give the situation more mental space than it already occupies; we don’t want to delve into it further.

Good news story

We saw Pat B, the radiation oncologist, this morning. The news was good: the PSA has gone down from 6.5 to 5.1. This may not seem a large reduction, but it is more than 20% (relative to the previous score). Pat said that the radiation treatment will continue to have an effect for 6 to 12 months. Therefore, assuming that the cancer doesn’t start behaving aggressively again, the PSA should continue to decline.

The radiation treatment I had after Easter was focused solely on the metastasis on the sternum. The rationale for this was that this spot was identified from the CT scans as dominant (i.e. having “progressed”, which I guess is a nice way to say “grown”). Apparently there is a lot of research which indicates the value of just treating these dominant spots. Each spot or cancer site can be regarded as having its own population. The population of a spot that has become dominant has figured out a way to resist the Zolodex treatment. The idea is to stop this population from colonising other spots.

The Zolodex treatment continues to keep the other spots quiet, and I will continue with this. (I am due for the next implant on 9 June.) I will also continue having a CT scan every three months. These will identify any other spots that might become dominant. Phillip P will remain my medical oncologist; I will go on seeing him every 6 weeks. Pat B is my radiation oncologist; he said I didn’t need to continue seeing him as well as Phillip. Pat will be available, however, to be brought in again should that be appropriate. So it is good to have a team approach to my treatment.

I have explained how the radiation treatment has worked as best I can from the notes I took at the consultation this morning. I appreciate everyone’s interest and concern. Please bear in mind, however, I neither have special knowledge of oncology, nor do I have anything to add to the explanation I have given above. If people have questions about this treatment, there is a lot of information available from free and reliable sources. (I list some of these under Resources in the blog sidebar.) If I received questions about the treatment, I would just be consulting these sources. It has been a worrying six weeks for us since the radiation treatment finished. I would quite like to have a break from thinking about prostate cancer for a bit, and enjoy this little bit of medical sunshine.

Following on

Cricket fans will recognise “following on” as something that a team can legitimately ask another team to do. So the phrase is not redundant — unlike “watching on”, for example, or “off of”, as in “Get off of the couch”. (Incidentally, I might have to rethink my objection to “meeting with”. I had always regarded this coinage as not only redundant, but a Americanism, and therefore to be resisted. However, I recently met with it, you might say, in Northanger Abbey. So if Jane Austen uses it, it surely must be OK!)

This post does follow the previous one, though, in containing something I forgot to add to the latter. A further reason to expect that the radiation will be successful is that it was successful previously. The first batch of radiation treatments was also at Epworth Eastern, a couple of years ago. I say “successful” in that the spots on my left femur and hip (those being treated then) are now no longer active. Unfortunately other spots came up subsequently. Instead of continuing to hand-weed the garden, so to speak, a defoliant was instead required. This came in the form of a whole-of-body treatment, the chemotherapy and hormone combination, which I had under Dr P. (I continue on the hormone treatment alone, which kept me in remission for a couple of years.) So anyway, there is a reason for hope to spring eternal.

We saw a very good movie recently on Netflix, The good liar. I say “very good” rather than “outstanding”, because it is really carried by the performances of the two leads, Helen Mirren and Ian McKellen. There is a fascinating number of parallels with the Ring Cycle, though. Listing all these in my mind kept me awake from about 4.45 this morning! However, I had had a good sleep from about 9.45 last night. What seems to be improving my sleep? Exercise (no surprise there) and going on the wagon. The latter might seem counter-intuitive — doesn’t a drink help us get to sleep? Unfortunately, the sleep that follows is disturbed. The worst thing is I feel awfully foggy the next day. I now look forward to a mineral water after I have cooked dinner. Truly!

Go back, wrong way!

I saw Dr P in the middle of last week, and the news was appropriately middling too. The PSA has continued to creep up, from 4.8 at the previous test to 6.5.

Immediately following these scores in my notes, however, I have “BUT” written in caps! This was pointing out that the radiation treatments which I had in the weeks following Easter have not yet had time to have their full effect. This will need about six to eight weeks after the last treatment. So the next PSA test should show a decrease.

Dr P went on to say (as he has since the PSA started heading north) that he’s happy with where I’m at, he isn’t worried, and my beloved and I shouldn’t be either. Of course we are trying to take his advice. He has a high opinion of Dr B, the radiation oncologist who was in charge of my treatment. (I have a further appointment with this gent on 1 June, just to see how things are going.) Everything else continues treatment-wise.

Obviously this was not the news we had hoped for, and I would be lying if I said I was totally sanguine about it. But it is what it is. Everything is being kept under close surveillance, and I remain hopeful that, when the effects of the radiation treatments have percolated through, the numbers will turn around. I am still buying green bananas! I feel fine, and am continuing with exercise and language classes, book group, and so on, just as normal. There is no shortage of other stuff going on as well. I was even feeling a bit wistful about the days I used to bake bread, make marmalade, and all those other time-absorbing things. However, I would rather be busy — not so much that I don’t get time to enjoy what has been, so far, a mild autumn. It was 24 degrees yesterday — we were sitting outside a restaurant having lunch — pretty unusual for Melbourne in May.

Been there, done that

The culmination of an intensive fortnight of medical activity came this afternoon when I had my first COVID19 vaccination.

Family members may be surprised at this, given that I had previously said I was in no tearing hurry to get it done. This was partly based on advice that radiation treatment is immuno-suppressive. As previously posted, however, my radiation oncologist’s advice was contrary to this. In fact, he urged me to get the vaccine (he didn’t suggest any particular one). I subsequently checked on the web site of my usual GP clinic. They said that patients in category 1B like me should wait to hear from them. My beloved, however, rang them; in this way she got the names of a couple of clinics nearby which were getting a much bigger supply of doses. I was able to get an appointment at one of these.

I didn’t know whether I would experience side effects from the jab. My appointment was in the afternoon. When vaccination day rolled around today, I therefore did the food shopping and washing in the morning. The clinic was in Kew Junction, a suburb I know a little (my tour of duty in a public library service had included a stint at Kew Library). As well as filling in the usual registration form, I had to take along some proof that I was a cancer patient. I was a bit stumped by this requirement at first; no-one has written me a letter saying I have cancer. However, I took along the results from my last CT scan, which the clinic accepted as fulfilling its requirements. After only a short wait, I got my jab.

The injection itself was not painful; most of the people giving them out will have done a fair number by now. The nurse gave me the usual warnings, among which I was delighted to receive one that I may become nauseated! On my way back out to the waiting room, I congratulated the nurse on not having said “nauseous”. She asked me if I had learned Latin; I replied that I hadn’t, but was a former librarian, and therefore a pedant. We then had a brief but satisfying exchange about our respective lexical crotchets. This must have gone down well: while I was waiting the recommended 15 minutes post the injection, the nurse sought me out and gave me a Freddo frog. (Being a professional, she would possibly have done this anyway. She did say it was for medicinal purposes.) This was actually my first ever milky top Freddo, the top half of which had an unexpected but rather nostalgic flavour of condensed milk. As Dad would say, I manfully forced it down.

By now, a few hours later, I can say that neither the vaccine nor the Freddo was troublesome. I can feel that something a bit unexpected has gone into my arm. The arm isn’t exactly sore, however; I am just conscious of it. Generally I feel fine, and was easily able to pilot myself back to base, with a short detour via Maling Road for a late lunch. So, if anyone isn’t sure whether to get the jab, I would say “Go for it!”. From what I can work out, someone in my age range who has the Astra-Zeneca vaccine has about one chance in a million of dying from a blood clot. This seems like pretty good odds, and compares favourably to my risk of developing the same complication were I to contract COVID19.

Final radiation treatment today

I had the tenth and final radiation treatment today.

To repeat a phrase I have no doubt over-used: so far, so good. The treatment itself seemed very refined, and I didn’t notice any side effects. Apparently these can occur within a few weeks of the last treatment. I have a nursing treatment plan, which basically says to go on applying the MooGoo lotion to the area on the chest where the radiation focused. I can call if I need further assistance, which I doubt I will. In six weeks or so I will have a blood test in which the PSA will be measured. This will be the proof of the pudding. A few days following this test, I have a follow-up appointment booked with the radiation oncologist. I will continue seeing Dr P (my medical oncologist) as usual. I will post the results of all these consults here.

The radiation oncologist (Dr B) advised me to have the COVID19 vaccine as soon as possible. This was different advice to that which I received from the radiographer. The basis of the advice to defer the vaccine was that any vaccine can have an effect on the immune system. And my immune system is a bit lowered by the radiation treatment. However, Dr B said that radiation treatment is not immuno-suppressive. Therefore there is no reason not to have the COVID vaccine.

It is a bit academic, of course, given that, for most folks, there is no vaccine to be had. I did ring a clinic that I found via the federal government vaccination finder web site. On getting through to a human, however, I found they are only offering these to existing patients (something not mentioned on the web site). It must be a damn nuisance for clinics to be bombarded by people wanting vaccinations, when they are not getting enough supply to give out these jabs. I am not that bothered about it, actually. I checked on my regular practice’s web site. When they get enough supply, they will contact patients under 70 who are in group 1B — my situation. When my number comes up, it comes up.

1st treatment down, 9 to go

I had the first of 10 radiation treatments this afternoon. It seemed to go well, without any noticeable side effect. I felt just maybe a bit out of it afterwards. But getting home on the tram was no problem. (Given that it goes right past the hospital, tram is really my preferred way of getting to these appointments. Thankfully, it is school holidays here. Otherwise, with a mid-afternoon return trip, I would be sharing the tram with boisterous school kids.) I will only post subsequent appointments if I experience anything side effects.

I saw a nurse afterwards who checked how I had found the treatment. I asked her whether I should have the COVID-19 vaccine while I was having the rest of the radiation treatment. She said I should defer that, should I be offered a jab. They think the vaccine has a temporary impact on people’s lungs (although they haven’t seen enough cases to be sure of this.) I am having radiation to the sternum, an area obviously close to the lungs. The radiation treatment can knock the immune system around a bit — although not as much as chemotherapy. She also suggested I defer the flu vaccine also until after the radiation treatment. However, the rollout of the COVID vaccine is so slow that I think I am unlikely to be offered a jab any time soon.

Sending this off as is without further checking or embellishment.

SNAFU wins the race

Well, as as a character says to another in The upside of anger, that was a mis-step. In the last post I attempted to convert the blog to private. The problem was, as a few intrepid followers found, that locked everything up tighter than a fish’s whatnot. Even I, as the blog founder, had difficulty logging back into WordPress to get things how I wanted them. The notification settings seemed mysterious. (I say “seemed” because I didn’t get to see the outgoing message that was sent to everyone I invited to become a viewer. This message obviously didn’t explain how viewers could be notified when I had posted new content to the blog.) Few people are going to come back and check in case I’ve updated the blog — something that’s become less frequent lately. (It’s possible to sign up for email updates, but I know some people haven’t been able to get this to work.)

Anyway, for those people who requested email updates, I will keep sending you those. I will post those also to the blog.

WordPress has no real half-way setting between “Open” (i.e. anyone can discover the blog) and “Private”. (The only one was something that “encourages” search engines to omit the blog from their search results. However, as WordPress pointed out, this depended on the search engines actually doing the right thing.) Oh well, just chalk it up to experience. Carry on irregardless, soz for that, and happy Easter!

Change to blog settings

From now, I have made this blog private. People who want to view and follow the site will not be able to do so unless I invite them. People I invite (and who accept) will need a free WordPress account to view the site. It will be necessary to log in to WordPress to view the site.

There don’t seem to be any people registered to follow the blog. (I know people have found this difficult to do.) However, I will invite people who I know used to follow it. If anyone is unsure about taking out a free WordPress account, my experience with them has been positive. WordPress has hosted the blog almost from the beginning, and I have very seldom been contacted by them. (Emails I have received have always been about changes to the blog editing software.) So, as far as I am concerned, they are a reputable company.

I will email family members with the content I am putting up on the blog (including this post) so they can follow it that way if that is their preference.

Best Xmas present yet!

I mentioned previously that I was scheduled to have a CT scan of the thorax, abdomen and pelvis and an isotope bone scan. These were done about a week ago. This morning we duly trooped off to Dr P to see what (if anything) these had revealed.

Basically, they found nothing new. To quote from the report, the bone scan found “[N]o clear evidence of bony metastatic disease”, and the CT scan found ” … no features at the level of the pelvis to suggest local soft tissue recurrence”. So, nothing to see here. The PSA has crawled up to 2.3, but Dr P wasn’t worried by that and said he was very happy with how I was going. I will continue on the Zolodex for the time being, depending on future tests. (I had another Zolodex as scheduled, after seeing Dr P.) Appointments were made to see the good doctor and for my Zolodex implant in March, 2021.

I will send this off now and rescue a load of washing from the machine! I hope everyone has a safe, unmemorable and uneventful Christmas.