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.

Going to put it up next year too

If you were around the blog last year you might remember my little aeroplane post http://littledragoncancer.blogspot.co.uk/2014_12_01_archive.html 

And yes I was here to put it up this year as well, here it is flying round the tree

Fig 7: What ho Biggles!

As to next year... well as you know it's not been the best of news of late and I'm back on the FOLFOX which I'd quite forgotten how ghastly it was but I'm prepared to give it a try and then after that there's other things we can have a go at so I've every expectation that a little biplane will be slipping the surly bonds of earth once more in 2016.

A very merry Christmas and a peaceful and healthy new year to you all.

The Drugs Don't Work

So we had a spin in the donut of doom the other week and on Monday I totter off down to clinic to get the results. You know immediately it isn't going to be cute puppies and gambolling pink unicorns news when you see the oncologist has the colorectal specialist red angel of death with him and he's got his best "now this is serious" face on.

Dr Ahmad does a very good serious face.

And indeed the news is indeed pants and about as welcome as Donald Trump at Friday prayers down the mosque. The mouse gene drug and capecitabine that had been at least holding the liver metastices in check have stopped working and they were growing again; not by much, just a few millimetres but definitely awake and doing that uncontrolled dividing thing again.

Fortunately it's not all doom and gloom as my records show I had a good response to FOLFOX, the first treatment I had, so I can go back and have a few cycles of that and see if it works again. Now as you remember from last year this is a coctail of Flouracil and Folonic Acid that's been common to all my treatments (side effects: nausea and vomiting, mouth ulcers, painful hand and foot lesions and probably making you think that Justin Beiber isn't such a bad musician after all) with platinum based wonder drug Oxaliplatin. Now that's the one that alongside all the ususal happy chemo side effect buggers up your nervous system in what's called "peripheral neuropathy"; it's like having permanent pins and needles in your hands and feet with the added joy of touching anything cold is agony.

Oh and I have to go back to carting a bottle of highly toxic chemicals with a tube sticking out of my chest for two days every fortnight. What joy.

Still it's that or in six months someone will be kicking a dead dragon into a hole so we sign the "yes you can poison me" consent forms and we arrange to kick off next week (which does at least mean I get Xmas off).

So not the best Christmas present ever but to compensate I'm on a train heading to London right now where I will visit swanky grocers Fortnum and Mason and go hog wild with the credit card. Eat drink and be merry for tomorrow we chemo!

Fig 67: Happy bunch of lads

Little pinky orange pills

So I'm back on the real chemotherapy now having been found out that we can't just use the monoclonal antibodies.

However the good news is that my new chemo drug is Capecitabine which comes in the form of rather large pinky orange pills which I take for 7 days and then have 7 days off. I have to say it's a lot easier than messing around with the 46 hour infusion of 5FU with it's attendant fatigue, nausea and having to schlep up to Wisbech on a Friday afternoon. "Cap" to its friends is rather clever in that it's a "prodrug" which means that in itself it doesn't do anything but the liver synthesises it into the active drug which just happens to be the aforementioned 5FU.

The only downside is the palmar-plantar syndrome which is quite a bit worse on the pill version of 5FU than the infusion. After two treatments my hands are starting to split, not badly but enough to be painful when it happens and I'm having to be a bit careful around the ponies in case of picking up infections. It's buggering up my feet as well so I do tend to totter around rather than walk when it gets bad but I'm still mobile.

Which is a good job as I've got a dragon to feed.

fig 35: Always feed your dragon fresh cake

She called Raptors Fire, likes cake and has her own Twitter account at @raptorsfire

Maybe not all down to the mouse genes

So last week I trundle into the clinic as usual expecting the standard "ah so you still have a head and are breathing, you can have your treatment" rigmarole and to my surprise I get to see Dr A, my original oncologist.

"So you've had a break and when you came back you went onto just Cetuximab. Why?" he says

"Because Dr M your other oncologist said I had to because the Irinotecan and 5FU was going to turn my bone marrow into mashed potato or something." I replied. Not sure what he was expecting me to say "Oh yes, I took a medical degree and specialised in cancer treatment in the four weeks I was off and decided this for myself!"

Turns out that Dr M shouldn't have done that. Not for any clinical reasons you understand but because of the ludicrous rules of the Cancer Drugs Fund which cough up the cash for the Cetuximab. Now I'm none too keen to start back on the 5FU because quite frankly it's a bloody pain. The side effects are nasty and carting that bottle with a tube stuck in your chest around for 3 days is a pain in the arse quite frankly so I ask if there's any wriggle room in the rules.

So Dr A being one of the good guys pulls up the CDF document and we go through Cetuximab together with a fine tooth comb looking for loopholes. Can we say this is a third line treatment? What about of we say the side effects are really bad from 5FU? Is there an exception if you're a bad tempered fire breathing lizard?

Nope, the rules have been drawn up by government wonks and are a tight as a duck's posterior, in my situation you have to give some sort of Fluorouracil type chemo alongside Cetuximab or no Cetuximab.

There's a silence for a while.

"Look we'll carry on with just Cetuximab for this cycle, leave it with me and I'll talk to my colleagues and we'll work something out."

And that's where we left it. So next Monday I really have no idea what direction my further treatment is going to take. I'm not blaming the medical staff for this rather the rationing of cancer treatments that the NHS foists on us. Maybe there are some good clinical reasons for the Cetuximab rules but the problem is there's no flexibility, not room for the doctor who is treating the patient to say "look I know the rules say this but for this patient treating you this way is working well so we'll do it that way." Just the dead hand of NHS management one size fits all. Computer says no.

However on the plus side staying on just Cetuximab for another cycle did allow me to go to Norwich the following day where I might have accidentally acquired a new friend at the GoGoDragons auction

Fig 45: Rawr!

It's down to the mouse genes now

I'm tapping this into the lappy whilst sat tin the day unit having me chemo and I'm going to have to get a move on as my chemo is going to be a good deal shorter than it previously has been. That's because the clever people who work out what toxic chemicals to pour into me have decided that I can't have the FOLFIRI (Fluorouracil / Irinotecan / Folonic Acid) treatment any more as the side effects are now at the stage where they'd do me more harm than the cancer. Apparently despite helping shrink my tumours it's also been quietly screwing around with my bone marrow and having too much more would cause my bone marrow to fail which, with characteristic understatement, my oncologist informed me was "not compatible with life".

Yeah thanks for that.

So now it's down to just one drug, the monoclonal antibody Cetuximab.  I did blog a bit about this drug earlier this year but essentially its a clever little thing made by combining mouse and human genes and it essentially works by latching onto the receptors that make cancer cells grow and blocking them from getting the signal that causes them to divide.

Now this can just be dribbled into me for a couple of hours once every two weeks so there's no need to go through all the rigmarole of carting a bottle of the old chemo round for 46 hours and a further bonus is that this stuff doesn't make you feel sick. All you need is a whack of clorphenamine* and hydrocortisone to stop you going into anaphylactic shock (told you this chemo business is full of larks) and you're good to go.  So all in all the treatment regime just got a whole lot easier, shorter and gentler but of course it's now just down to the one drug to hold the bugger in check whilst hopefully my own immune system can attack it which is a bit scary. It does feel like you're flying on just the one engine**

However the biggest bonus is not feeling crap after treatment. So as soon as I'm done here I'm off for a celebratory burger at Byrons. 





* Piriton to you and me
** But as a PPL holder I'm quite happy doing that. Twins used to scare me more.