It ain't that kind: two years on

A brief progress report: as regular readers will be aware, two years ago I was diagnosed with metastatic cancer of unknown primary (CUP), which is generally bad news. However, due to a good response to palliative treatment and, it seems, a fairly unaggressive flavour of CUP, things have so far gone far better than we dared hope for.

It's now been two years since I was diagnosed with cancer of unknown primary (CUP), a quite common - but little-publicised - form of cancer that has no findable primary tumour, and jumps straight to metastatic stage (in my case, to various chest and neck lymph nodes). It's not curable, and generally has a very poor prognosis: median survival rate is 3-4 months after diagnosis.

However, some patterns of it are less aggressive than others, and I seem to have one that's been fairly indolent in its progression. I had a good response to palliative chemotherapy - both to a first-line cisplatin-docetaxel combination (which gave nearly a year's remission) and to a recent second-line GemCarbo combination - and can't fault the treatment and general ambience of the RD&E oncology unit. The next option is, I gather, "spot-welding" radiotherapy, but that's not an immediate concern.

At present I'm signed off for three months, after which I get another CT scan, and am still extremely well in general (8-mile-cliff-walk well - I feel quite fraudulent at times). I have to admit that I also feel very much at a loose end. The prospect of having potentially only months to live kicked me into a "work hard, play hard" mode, enough to get the Maxwell Gray biography finished. That done, and with no clear prognosis at the moment, I don't quite know what to do with myself. But I'm sure a project will come to mind.

You'll find previous updates at It ain't that kind #1 (23 Sep 2012) and It ain't that kind: 18 months on (20 March 2014).

20 Oct 2014
So ... on the 20th I saw the consultant following the CT scan results from the previous week. The picture's not great: "extensive lymphadenopathy" in the left side of my neck, with significant growth since the previous scan. I can't pretend it's not a downer - even though it was completely expected. I've been aware of the changes for a month or so, plus slight shoulder ache/stiffness that might be down to a compressed nerve. However, the news isn't all bad; nothing much is happening elsewhere, and the plan is a ten-day course of palliative radiotherapy to the affected neck nodes.

The shell. Each session used two zaps with the beam (target points marked
with labelled tape): one wwent transversely through my neck; the other from
below the table, up and out the front left. The highest x-ray dose is where
they intersect, on a lymph node on the left of my neck.

20 Nov 2014
I've just had my third day of radiotherapy. It's a kind of morbidly interesting process. Three weeks back they made the radiotherapy mask (a plastic mesh shell that holds your head in position) and did the location scan. On Tuesday I started the actual treatment; you lie on a platform with your head fixed down by the shell, and the machine (I think it's one of these) rotates around you, delivering megavolt-energy x-rays from varying directions, the net result being that the targeted tumour picks up the maximum cumulative dose. The first time was a trifle claustrophobic, due to around 10 minutes' preamble of location scanning, but subsequent ones have been only maybe 3 minutes. Last session is on 2nd December. I don't know precisely what to expect in the way of untoward effects; accounts differ. It could be as little as a mildly sunburned neck. I won't know the full picture until maybe around a fortnight from now, when the effects tend to peak.

18 Dec 2014
The radiotherapy aftermath doesn't seem to be too bad. I've so far had nothing more than a slightly itchy neck, with slight darkening of the skin. Oh, and the hair's stopped growing on the left of my jaw - just as well I gave up the beard way back.  If there are any constitutional effects, I honestly can't tell, because some time before Christmas I managed to catch the respiratory bug that's doing the rounds locally, and feel pretty yuk with the aftermath of that (my GP's of the view that I have costochondritis).

8 Jan 2015
I'm extremely impressed with the radiotherapy outcome. The main neck node - and presumably other stuff in the vicinity - has shrunk remarkably, from the size of ... not sure what to liken it to ... half a Cadbury's Creme Egg (cut lengthwise) to the size of a Galaxy Minstrel. And with minimal side effects. The downside is that I still have a constant tickly cough and rib pain in the aftermath of this bug, and after a couple of months, this has turned into a real drag. However, I phoned the liaison nurse today for the latest CT scan result, and it turns out I've broken a rib (presumably from coughing when the bug was at its worst). That explains the pain at least, though the break is puzzling. I have a blood test tomorrow and a scheduled oncology appointment next week, which may well clarify things. Despite there being no single major issues, I'm suddenly getting a strong feeling of, metaphorically, a lot of minor warning lights starting to flash red.

20 Jan 2015
Just had my scheduled oncology appointment. The scan confirms a good result from the radiotherapy, and furthermore there's nothing radical happening elsewhere, just a bit of minor lymph node growth where we're going to 'watch and wait' again. The annoyingly inconclusive bit is that there's nothing obvious to explain the cough (my blood test was clear too), so they're trying a palliative approach: codeine linctus as a cough suppressant. I'm not keen, but I'm thoroughly fed up with coughing day and night (as are Clare and, I'm sure, our next-door neighbour). The stereotype with cancer is pain, but nobody tells you how much a persistent tickly cough, that nothing stops, can rapidly make you fed up with life. I give the codeine a trial for four weeks.

13 Feb 2015
I'm to have more radiotherapy. I saw the oncologist today, a week early due to various problems: the codeine, thankfully, has damped down the cough, but not stopped it, and my voice sounds like Papa Lazarou from League of Gentlemen. The diagnosis is that enlarged lymph nodes next to the lung (hilar, I think) are the problem. The hospital's wasting no time; they gave me a location scan straight away and tattooed on the target dots, and I start radiotherapy on Thursday 19th (it'll be just five sessions this time). It's a trifle scary again - the target locations are close to the heart - but I have every confidence that they know what they're doing.

16th Mar 2015
I saw the oncologist again today. A bit of an inconclusive appointment, but at the same time a bit of a milestone. I've had no problems from the radiotherapy that I can tell, beyond a bit of indigestion; however, neither can I say that I've noticed any benefit to the voice and cough problems. The milestone aspect is that things now seem well out of the territory of clear-cut treatments such as the hefty first-line chemotherapy I had in 2012. Now things feel very 'whack-a-mole', with no palpable hit guaranteed.

So ... they've ordered another full scan to see the overall picture, and meanwhile upped the cough medication to include Oramorph - low-dose morphine, when required, as a cough suppressant. (It felt very criminal coming out of the hospital with a bag labelled "controlled drugs enclosed"). Depending on what the scan shows, the path might include an ENT appointment for the voice issues. The doctor today confirmed the likely reason being pressure on the laryngeal nerve, which may or may not resolve. The whole combination is a major drag; the cough has stopped me going on walks, and the voice problems make it impossible to sing (with obvious impact on music participation) or talk comfortably for long (with obvious social impact). Apparently ENT help can involve speech therapy to strengthen the vocal cords, and there's even a botox injection that can help if a cord is paralysed. But, to be blunt, the question will be, is it worth doing?

Treatment possibilities might also include chemotherapy: there are one or two taxane-based agents to try. This 'third-line' chemotherapy isn't always worth doing, but as I had a good response and long remissions from the first two, they say it could be worth a go. A slightly chilling aspect of the appointment was to OK setting up for me a liaison with the local hospice. They stressed that (contrary to the stereotype) this is not an indication that they think I'm dying; cough and voice apart, I'm fine in myself. The setup exists to give a telephone contact for mundane day-to-day management of drugs/symptoms, where the hospice has expertise that's more specialist than my GP could provide, but not worth bothering the RD&E with. Nevertheless, the h-word is still rather ominous, and I'm under no illusions about having reached a stage where things are turning symptomatic, and complicated.

- Ray