The Problem With Experiments

Science proceeds through experiment. You have an idea, sounds like a good one, the theory checks out but the only way you're going to be sure is to run a few tests and get some results. And sometimes the idea turns out to have been...

We have lift... oh.

Wrong

And so it appears to have been in the case of my new super wonder drug trial as after all the scans and pokeage results came back in the conversation went something like this.

"Well it hasn't had a very good response. In fact it's grown. It's now in your peritoneum, you've got ascites and we found a blood clot in your lungs."

"So nothing at all then?"

"No"

"Not even a mix up in the lab and you've accidentally injected me full of duck serum and I'm going to be able to call myself Captain Quack and fight crime with my amazing beak powers?"

"We can refer you to psychiatric services if you like Mr Dragon."

But that's the price of progress, I guess that they'll get some results from the tests and maybe work a way of giving the drug better or maybe it just doesn't work with my particular genes. At least it's not made me worse as the disease has just progressed as it would have done anyway.

And unfortunately progressing it is. I'm now on constant medication for pain and blimey don't you know if you miss a dose as most of your internal organs immediately kick up one hell of a fuss. And that ascites thing, which sounds like it ought to be the name of some ancient Greek king who was punished for walking in on Zeus when he was having it away in the form of a swan but is in fact an accumulation of fluid in the abdominal cavity, is making eating somewhat difficult. Everything sort of pushes against each other so I feel like I've had a massive roast dinner after only eating a slice of toast. On the plus side though it does mean I have to eat very high calorie foods, loads of full cream and butter type stuff that doctors tell you to avoid.

And the blood clots? Well that'll go away on its own apparently but a bit like self service checkouts your dragon now has to stick a needle in himself every day with a shot of Dalteparin, an anti coagulant drug they normally give to people with DVT, to make sure it doesn't come back

So anyway I've decided to take Xmas and the new year off from hospitals as quite frankly I'm pig sick of the places and I'm curling up on the sofa for a couple of weeks. I'm back to see the docs in early January and there are other things we might be able to try but I'm wondering of it's getting to the stage where rather than buying more time I'll be concentrating on buying more comfort instead.

Which suits me. I like comfortable.

Life at the bleeding edge

So as you know I signed up for this research trial a few weeks ago and now here I am, set in a very quiet research wing of the hospital on a Saturday afternoon fiddling around with the sticky pads on my heart monitor leads which occasionally fall off and make the machine think I've gone into ventricular tachycardia. This has an interesting reaction as the monitor is a telemetry one and every time it gets fooled into thinking I'm dying an alarm goes off and two or three nurses pile through the door expecting to find a dragon having a heart attack instead of one sat up in bed watching The Apprentice on catch-up and eating biscuits.

In order to get here I've had to go through loads of blood tests, PET/CT scans and a liver biopsy which let me tell you, despite plenty of local anaesthetic, hurts a whole lot. But all the tests are good and now I get to take the new wonder drug which is administered 10ml at a time for a whole week essentially by the same method as the 5FU chemo drug I've been on since this bastard rollercoaster ride started. The side effects aren't too bad so far apart from the first night when my guts decided there was a quantum singularity inside me and they were damned well going to collapse towards it. There's a tingling in the hands and feet too, bit like the neuropathy of Oxaliplatin but not temperature sensitive. Unfortunately that seems to be spreading up my arms so I'm not sure what's going on there.

But the good (probably) news is that I'm on the maximum dose for the trial so it should (again, probably) have the best effect. We won't find out though until the middle of next week when I get yet more positrons and, oh joy unbounded, yet another liver biopsy.

It's also a bit dull in here to be honest although all the staff are really friendly. Mrs Dragon comes to visit most days and we've set up Skype so we can chat but I did find myself earlier using the remote motorised bed control to raise the head part of the bed whilst humming The Thunderbirds theme song so I might be getting a little bit of cabin fever.

Fig 43: Thunderbeds are go!

They didn't mention that in the side effects. 

Guinea Dragon

Well that's the chemotherapy done with. No more nausea, no more not being able to poop for 72 hours because of the stuff they give you to stop the nausea and, best of all, no more of that bastard 5FU pump. Turns out that the Dount of Doom has revealed that not only has the cancer in the liver grown (only a few millimetres) but The Grouchettes have had "musical differences" and some of them have decided to form The Continuity Grouchettes and have got a gig in my lungs. Fortunately they're just tuning up and trying to work out what key to play in right now so there's no symptoms but it's a big hint and a half that the chemotherapy just isn't cutting the mustard any more.

There is a newly approved drug, Lonsurf, that I could take but my oncologist isn't too keen in my case as it's just a variant on how the current chemo drugs work (basically messing with their DNA to stop them dividing) and he says it's probably going to give me a couple of months extra if it works at all. So not so great.

However he thinks, and I tend to agree, that an immune system fiddling drug might work better and there's a lot of research going into this area right now as it's showing a lot of promise for treating cancers of all sorts and given that I just so happen to be being treated in one of the world's premier research hospitals then I figure signing up to a trial of something shiny and new might be worth a go. And duly a week later I'm sat having a chat with a very bubbly doctor who is explaining one of the trials they have. Basically it's a test of an existing drug they give to people with lymphomas to make them produce and mobilise stem cells that they harvest before zapping the lymphoma patient with enough chemicals and radiation to screw up stem cells, then they give them the stem cells back.  However in some lab and animal tests it looks like given differently it can cause the immune system to go crazy ape bananas and start it scoffing cancer cells like chocolate chip cookies.

Sounds great, but what are the downsides. Well for a start these trials are pretty early stage stuff, what's know in the business as "stage one" and used to basically see what sort of a dose of whatever it is is safe to give to people without limbs falling off or their skin going all scaly like in the superhero movie Deadpool.  They do this by "dose escalation", a few people get a low dose and they see if anything happens, then the next few people get a higher dose and so on. So it could be that you're not getting enough of this stuff to make the slightest bit of difference and of course there's always the chance that despite this stuff working on models and in mice when you stick it into dragons the square root of sod all happens.

The other goodie is that they need to keep a very close eye on you so you're in hospital for a while and rigged up to heart monitors for the 7 days the drug is being administered. Oh and that's constantly through a little pump.

And you need a liver biopsy. Two in fact. And the usual PET / CT scans, MRIs, donating half a litre of blood in samples that seem to go with anything cancerish.

But it might just do something and that's got to be better than sitting around in November not doing a great deal and just letting the little bastards grow.

So I'm going to sign up and become a guinea pig. Or guinea dragon in my case.

Wonder if I'll get a wheel to run around in?

They just make you worse.

So what if I haven't written much lately, neither has Shakespeare.

But I thouht I'd better post a bit of an update for you folks who keep up to date via the blog rather than my Twitter wibblings. At the moment I'm on another chemo break and tapping this in whist sat in a cottage in The Lakes waiting for the rain to stop so I can go for a walk up a mountain. From this you can gather two things, vis:

(a) I am still well enough to go mountain walking
(b) The chemo has stopped working so they're giving me time off to work out what to do next.

The chemo hasn't stopped working as such but there is a bit of a problem with it. Well OK quite a big problem as it happens in that I've become allergic to one of the drugs in the cocktail. This isn't a case of allergic in the "I get a bit itchy and sneezy" it's more nurses hitting alarms, oxygen masks and so many steroids being pumped into me I could give Bradley Wiggins a run for his money going up Mount Ventoux.  You may recall that I started having issues of this nature earlier in the year with Oxaliplatin which was stopped in favour of Irinotecan and then I had the problem with the "infection"
during the first cycle of the Irinotecan.

Well that wasn't an infection.

Turns out the villain of the piece is the drug Calcium Folinate. Now this isn't actually a chemotherapy drug something they give you to make one of the chemo drugs, 5FU, work correctly. We originally thought Oxaliplatin was to blame as the Folinate is given at the same time and, well, can't be the Folinate can it. On the Irinotecan it's given separately but again we were thinking it's a delayed reaction, or an infection, or it's because you're a dragon; anything but the Folinate. 

Eventually after yet another crash in the day unit we are starting to home in on the culprit chemical and I get a load of steroids and anti histamines before we start which works for cycle 4 but come cycle 5 after 20 minutes I've fighting for breath and my oxygen sats are somewhere below the "Would you trust Donald Trump to look after a goldfish" poll ratings. Cue oxygen, loads more steroids and after a while I'm at least not looking blue.  Then I hear "The on-call registrar says give it thirty minutes and then start the infusion again."

"The poor bastard who keeps getting poisoned says you can stick your infusion where the sun doesn't shine!"*

So that was that. I am disconnected, no point giving me the 5FU and I can go.  Just to be on the safe side I lurk around the hospital for another hour which was a good move as I started to get that uncontrollable shivering thing again (which was making drinking my latte in the hospital branch of Costas quite difficult) but that went away quite quickly so off home I toddled.

But that was it I was told. No more Calcium Folinate and that means no more 5FU. Quite honestly I'm rather relieved as after 40 plus sessions I was really starting to hate that bloody 46 hour bottle thing but it does mean we've lost probably the best toy in the toybox for my condition. Current plan is to wait to see what last week's spin in the Donut of Doom reveals and then consider the tablet form of 5FU called Capcitabine which apparently doesn't need the Folinate stuff to work but does bugger your feet up good and proper.

Which is why I'm in The Lake District climbing up mountains now.

Or I will be once it stops pissing down.









* I was very polite really.

And then all my hair falls off

"And then all my clothes fall off..."

fig 34: in the best possible taste

Well OK my clothes stayed on but my hair fell off.

I've had the chemo drug Irinotecan before and while they say that hair loss is a possibility it's never been a problem for me before. Sure it thinned a little bit and grew back a bit haphazardly but my nice thick and quite long hair was still there.

Not this time. A couple of days after the Irinotecan infusion my scalp started to feel quite sore, like someone had been tugging at my hair. Soon as I touched it loads of strands just came away in my hand. And over the weekend it got worse, whole clumps start to come out and  by Monday morning I look like a cross between a mangy fox and the guy with the bad comb over in that Hamlet advert

fig 58: unhappiness is a drug called Irinotecan

Yes seriously that bad, I looked awful and I'm still shedding bits of hair everywhere like a moulting dog and I seriously hope these drugs are messing up the cancer as well as they're messing up my follicles.

So drastic times call for extreme measures and so I go into town, find an old fashioned stripey pole barbers shop run by a sixty odd year old guy whose Teasy-Weasy skills begin and end at "number two on the sides and half off the top" and ask him to cut the lot off. Which he does.

Excellent, now I look like a particularly scruffy toilet brush.

However after the purchase of a new razor and a few minutes scraping in the bathroom I now have a nice smooth head. And to be honest I don't think that it looks too bad Sure it's not good and I preferred having hair but it could be worse.

I could have that comb-over.

Infected

So after the news that the liver mets have ganged up on me and formed one big one the time comes to see if we can do something about it and quite frankly not a moment too soon. Over the past couple of weeks it's becoming increasingly painful and I've decided to step up to the opiate painkiller Tramadol more or less full time. Now Tramadol is at the, as one of my friends puts it, "opiates for girls" end of the spectrum of fluffy clouds and pink unicorns narcotics but even so it does mark a bit of a sea change in managing the disease.

But anyway onto chemotherapy. FOLFIRI this one is called and you may recall I've had it before and so last Wednesday late on in the day off I trek to the day unit at Addenbrookes and off we go. There's a bit of a false start when the nurse is convinced she's got the gripper needle in my port but as soon as she flushed it I got a searing pain so I'm convinced she's missed. But no worry, new needle is sorted out and off we go. So we thought.

Anyway everything is going peachy,, irinotecan goes in no problem, right up until the end of the calcuim folinate bit when I start to feel a bit cold and shivery. Now the air con in there can be a bit random so I just put my jacket on but I keep shivering.

And keep shivering.

After five minutes I'm shaking so hard I look like I'm having some sort of fit, my oxygen sats are down at 91% and my blood pressure is so high you could use it to operate hydraulic machinery. At this point the on call doctor is summoned who recognised me from the last set of oncology wobblyness and he thinks I'm having a reaction to the Irinotecan whereas the nurses think it's an infection. If it was a reaction it was certainly not like the one I had on Oxaliplatin which was quite a classic anaphylaxis one and personally I'm not convinced it is, especially when the usual hydrocortisone / chlorphenamine does diddly squat and my temperature is now heading north past 38.5C. It's not colinergic syndrome either which is one of the things Irinotecan can give you.

There's a bit of round the houses backstage and conversations with the on-call consultant and I'm asked if I want to carry on and then go home with a few antibiotics. Now the dragon's lair is quite literally in the middle of The Fens, at least 25 minutes from the nearest ambulance station* and a good hour from the hospital so I'm not exactly keen on going into neutropenic sepsis under those circumstances so after huge doses of IV antibiotics and blood cultures being taken it's decided I should stay the night at the Hotel Addenbrookes who, miracle of miracles, have a bed free!

Anyway to cut a long story short a couple of hours later I start to feel better and after a night of "rest" (only disturbed by every single beep, buzzer, bell and thing that goes "ping" known to medical science) I'm feeling a bit like my scaly green self again and after a thorough check over and even more antibiotics I'm hooked up to the 5FU pump and set loose into the world and everything proceeds as well as these things ever do (fatigue, nausea, constipation, evil humours of ye spleen, etc)

I did get my discharge notes through the post today and although the blood cultures weren't back the white blood cell count was elevated above normal and the doctor's summary was it was an infection of "unknown origin". If you remember back at the beginning of this we had a bit of a problem with the port and at the time the nurse was thinking that maybe as it hadn't been accessed in a month there may have been some infection in the line that's got dislodged but I suppose we will probably never know. Either way if it is an infection that's kind of good news as it means I'm not allergic to yet another chemotherapy agent and I can keep getting treated.

And finally with my public service hat on if you are a chemo patient reading this I know they tell you all about infection and to ring them if your temperature goes above 38 but do heed them. Mine went from "why am I a bit shivery" to "oh shit this is looking serious" in the matter of 30 minutes so please don't hang around and wait for it to get better, because odds on it won't.









* we tested this some years ago when me and my 16.2hh mare parted company at speed

Down to one

"their eyes met... to form one enormous one that could see in all directions"

Well not quite but it does turn out that my liver mets, aka "The Grouchettes", which had been whittled down to two are now one, because they've grown together.  Which is a bit of a bastard but does account for why it's been a bit uncomfy in the abdomen department for a little while. Also apparently it explains why my right shoulder has been painful for the past few weeks. According to Doctor P there's a link between your diaphragm and that bit of the shoulder so pressure or pain down there actually reflects up here

Which is another nail in the coffin of that "intelligent design" argument.

Anyway the plan is to give it some more chemo and see if that gets it back under control. Irinotecan this time as Oxaliplatin now makes me fall over and panics the nurses in the day unit.

Oh damn that means that awful atropine injection doesn't it.

Warp drive powered dragon

For some reason the liver team where I have my treatment have taken a bit of interest in me and have ordered up a bunch of new scans in interesting machines that I've not been in before so that they can have a proper look at the nasties lurking within.

The first one of these is a MRI (magnetic resonance imaging) scan. These clever things work by using a very powerful magnet to wobble the water atoms in your body in a precise way and measuring the very weak radio wave emissions they give off as a result*.

Fig 7. Magnetic clanky machine of doom

The procedure for this is first of all to make sure you've got nothing at all in your body that might be ferrous metal because these magnets are strong and would cause metal in your body to move about. The  magnetic field of the one I was in was 3 Tesla and to give you an idea the magnet that holds your fridge door closed is in the order of 5 milliTesla. Naturally you're not allowed to take any metal into the scanner so you're going to be standing around in your underwear and an ill fitting NHS gown for a while.

Also remember I said the radio emissions were weak? Well this means the antennae that detect them can't be far from your body so the tube you lie in is very narrow and you lie right inside the tube so this is definitely not going to be a fun experience if you're claustrophobic. Added to this they strap you to the table so you can't move and make the pictures blurry, Now I'm generally OK with confined spaces but after 30 minutes in here even I was starting to get a bit perturbed.

Oh yes and just to add some more fun for my scan you get a needle in the arm which is hooked up to a pump driver (the bit of kit on the stand in the left of the picture up there) so they can squirt chemicals into you at various intervals. And just to finish they strap another detector right above the liver and what can only be described as a dinner plate attached to a vacuum hose right above that, the purpose of which will be revealed later.

Now in order to get the water in you wobbling in just the right way the machine alters the magnetic field in controlled bursts and this causes small expansions and contractions in the gubbins of machine and this makes quite a bit of noise, so much that you have to wear ear protection. Now when Mrs Draunculus had one of these done privately a few years back she had headphones and got to listen to Enya. Mine's done on the NHS so I got a pair of those disposable foam earplugs. The noise this thing can only be described as a metallic clanging, buzzing, squeaking cacophony, kind of like being inside an early Einstürzende Neubauten gig. Added to this you have to hold your breath on occasions so the person driving the machine occasionally yells instructions to you via an intercom. For some reason best known to medicine you don't hold your breath in, you have to hold it out which is actually quite hard.

So after half an hour of being stuck inside this clanking, warbling Moog synthesizer gone mad the purpose of the dinner plate is revealed. It vibrates. I have no idea why it does this but apparently bouncing your liver up and down very rapidly is required for a couple of the scans. Personally I suspect that it's something the radiographers just do for a laugh.

So that was the MRI done and a week later I'm back for the next scan which is a PET/CT one. Now CTs you already know all about from the Donut of Doom posts but the PET, which stands for Positron Emission Tomography, bit is all new. This works as you might expect by detecting positrons, which are basically the antimatter equivalent of electrons. Now your body doesn't naturally produce these so they have to give you some which is done by injecting you with a type of sugar that's been dosed with a short lived radioactive molecule. Certain things in your body, like cancer cells, just love sugar and hoover it up, particularly if the patient is a dragon who hasn't been allowed to eat or drink anything but water for several hours (oh yes, they starve you before you get scanned for this one). Radioactive sugar is of course a bit tricky to handle so you get a cannula shoved in your arm and the glowing stuff** which comes in a special lead-lined syringe is ceremonially removed from a metal box and squirted into you.

Then you wait for an hour whilst the sugar is taken up by your cells and then you can go and get into the machine which is a bit like a regular CT scanner but with a longer tube you lie in. The scanner whirrs around and does a CT scan and then it starts measuring positrons. Now you can't directly observe a positron but if you remember Star Trek you'll know that the engines of the Starship Enterprise work by putting matter and antimatter together which annihilate each other and convert all their mass into energy*** and this is what happens when your positron, produced as the radioactive sugar decays, bumps into an electron but without the massive explosion above the Vatican or you achieving warp speed. Conveniently the energy produced is a pair of gamma rays which even more conveniently shoot off in exactly opposite directions so when this pair is picked up by opposite sides of the detector it knows its got a positron and where it used to be and by combining thousands of these events along with the CT image it can build a picture up of the tissues where the sugar was taken up.

And all you need to do is lie there for half and hour as you're propelled past the detectors a few centimetres at a time.

So that's the scans done. Now we have to wait to see what the clever surgeons and doctors make of them. Watch this space.






* I had to have two goes at my physics "A" level, you can tell can't you.
** It didn't actually glow, which was disappointing.
*** The bomb in very silly film Angels and Demons worked the same way

Update. Nothing is happening.

I know I've been neglecting the blog. Well one main reason is that nothing much is happening which in cancer terms is a good thing. The chemo has been trundling along as it should with no dramas or new weird side effects and the last set of scans showed no growth in any of the tumours. So all is at least stable and rather dull.

Dull is good, I like dull.

Anyway because I've been a good dragon and taken all my medicines I'm allowed a 4 week chemo break so this is getting typed up in the Emirates business lounge at London Gatwick from where very shortly a large aeroplane* is going to whisk me away for a few days in the sunshine before poking and chemicals start up again.

See you on the other side!


* It's a long way and I only have little wings so I get someone else to do the flying.

Busted

So I'm at the usual clinic on Monday and one of my oncologists goes "I think I found your blog, are you the little dragon?"

Oops! I had to do a quick think if I'd had a moan about the oncology team on here but I guessed not as they've all been top notch. In fact the only grumbling I tend to do is on Twitter when the clinics are running their usual hour and a half behind schedule. and you daren't go to the bog because you're paranoid about missing being called.

But it was nice to hear that the doctors like my blog and actually find it useful to get an idea of what their patients are going through and, especially the day to day stuff that doesn't tend to come up in clinics which tend, at least for me, to be a check on how the chemo side effects are going and making sure I have the requisite number of platelets, white blood cells and legs* to allow the next lot of chemo to get dribbled in the following Wednesday.

Which is what's happening now. And it's making my feet itch.



* Four. I am a dragon after all.

Liver and Onions

The liver is a funny thing, for such a large organ it doesn't have very much in the way of pain receptors so when there's something up with it it rarely tells you directly but presses on other nerves so you get the ouchies elsewhere.

Mine's decided to go for the "you've just been kicked in the ribs by a shire horse" nerves and also the "you've overdone it on the sun lounger" ones so it feels like I've got a very localised form of sunburn in a roughly liver shaped area. Now hopefully once the chemo starts working the grouchettes in the liver will shrink and it'll stop being painful but for now I've had to step the pills up a notch to Tramadol which is on the lower rungs of the opiate drugs. Fortunately these don't have too many side effects and I'm sure the fluffy pink unicorns I keep seeing will go away shortly.

On top of that the chemo isn't exactly going smoothly either. The last lot of Oxaliplatin got the day unit all flustered because as soon as it went in my hands and face went bright red and my lips did a reasonable impression of Mick Jagger - cue much anti histamines and steroids being poured into your dragon and then spending the next few days flat on my back with fatigue. They've dropped the dose for this cycle but even so it's a bit itchy when it's going in.

Still I really can't complain as I'm still here and according to the statistics I shouldn't be. If you go back to the beginning of the blog you'll see that this week is my second "cancerversay" and when all this kicked off I was given a couple of years to live if the treatment worked. Sure we're in the last chance saloon as far as conventional treatment is concerned but we're still here and sticking two fingers up to the bastard.