28 Days Later

For those who may not know, 28 Days Later is a film. I’ve only ever caught some of it on TV, but it looks great, if terrifying: some kind of horrible futuristic plague means that infected people are running around at super-human speed in ever-increasing numbers looking hideously depraved, biting other people and transmitting the nasty virus. These people then start looking hideously depraved, running around, biting people… You get the gist of it. I haven’t made it sound that appealing, but it’s directed by Danny Boyle and stars Cillian Murphy, Naomie Harris and Christopher Eccleston, if that helps persuade you.

The relevance to me is not the plot. After all, I may have a horrible disease but it’s not contagious and I’m not running around biting people. Things could always be worse.

The relevance is that today I threw  in the bin the first packet of my nasty T-drug, as it comes in 4-week packages. I have therefore been on chemotherapy continuously for twenty-eight days.

It’s been great having all sorts of different people come with me to hospital recently. It’s also made me realise that a lot of things I now take for granted after 22 months of living with myeloma are quite unfamiliar to most people. So, I thought as I haven’t been blogging much recently about my treatment it might be a good time for a more medical and educational one: what is this chemotherapy stuff anyway? Why am I not bald and still going to work? Why do I look so healthy when I talk about feeling so crap? Etc.

People will all have a certain idea of chemotherapy, and a concomitant image of a chemotherapy patient, in their head. I’ve noticed that I do not (currently) fit the bill: I could not be the poster girl. Nor do plenty of other people in the daycare unit: they might come in on a work call, carrying a briefcase. They might be painfully cool, young and good-looking, talking street and constantly texting.  They clock in and clock out. It’s part of their day. A lot of us are old hands. Admittedly, you don’t necessarily know who is on chemo: but that’s part of the point I’m making, you can’t necessarily tell.

I can’t give you full answers to the questions above. I also can’t tell you about anyone else’s experience of chemotherapy. I have read that there are something like 300 types of chemotherapy drug nowadays. There are also different regimens of the same drug(s), given in hugely varying doses and combinations. People have different susceptibility to side effects, and different levels of underlying disease or other health issues in the mix. So saying ‘I had a friend who had chemo and it was like X’ or ‘s/he could/ couldn’t still do X’ is pretty irrelevant to me, even if it was for a type of blood cancer (there are SO many types of blood cancer), and even if it was myeloma. Myeloma is very individual, and in a few years time it’ll probably be sub-divided into several myelomas, sub-diseases with different treatment regimes as more is understood. I love being in touch with other myeloma patients as we are such a small group and they alone share much of the experience that nobody else can imagine or understand. Still, the more I hear the more I realise how we all have a different experiences and treatments (see my earlier ‘Choose Your Own Adventure Post – if I was more competent and less impatient I would work out how to post a link). Myeloma is not Youreloma.

That disclaimer over, I can tell you some of what I know about my (previous and current) chemotherapy and what it involves. I told you the VTD-VD-T etc pattern but didn’t say much more. So welcome to your Lesson 2. I will try not to go too far in this post as it really just goes on and on, in terms of topic depth that I could go to, like an iceberg.

As I’m being educational, I will do that thing you’re supposed to do of ‘tell them what you’re going to tell them; tell them; tell them what you’ve told them’. This also conforms to the rule of my eccentric and inspirational A-level history teacher that there were always Three Things: ‘Like Gaul, Strauss, and the Trinity’, she said each time, to blank looks on the faces of teenage girls in Wycombe. I always think of that now when I hear three things. That, and the fact that I previously dated someone who’d worked for McKinsey and implied that their entire business model consisted of finding three things to tell the client, put it in a snazzy powerpoint and charge a lot of money. I may have misunderstood…

So blog-readers, I will give you 1) Old-School Chemo 2) Dangerous Triplets and 3) Novel Targeted Agents . Sounds pretty cool, huh?

Part the First: Old-School Chemo

I didn’t blog at the time, but I do have a pretty impressive back catalogue of shocking medical tales and weird photos from 2012. I imagine they’ll come out in instalments, little by little. This is a nice excuse to wow you with some more (headless) photographs closer to the chemo image you have in your head. For my ‘induction’ chemo in 2012, I had 4 cycles of a 3-drug combo – the ‘starter’ I previously referred to.  Two of these drugs I’m on again now, but the third was different. This was a more traditional chemotherapy agent, called doxorubicin, or Dox for short.

It was bright red, just in case you were ever at risk of forgetting momentarily how toxic it was. In some hospitals people would have it on the first 4 days in a row on a drip each day in the daycare unit. I imagine for say 4 hours each time, which seems to be a fairly common way to receive chemo, alongside possibly some fluids, a saline flush before and after etc. A lot of boring sitting.

I, for various reasons, had it through a sausage. Yes, a sausage. It was, in fact, a slowly-shrinking bright red sausage in a clear plastic tube. It was attached to me for 96 hours and gradually released itself into my bloodstream during that time: so I went to hospital to get hooked up on a Tuesday, and again on Saturday to be unplugged.

Here is my first sausage, when I was still an in-patient in hospital:

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Note that a) I had hair and b) my arm is pretty bruised. Relevant because thanks to the Dox, I didn’t have hair for much longer. Also you may be wondering how I was attached to the sausage for 96 hours, and that was via a Hickman Line, which is basically a motorway straight into a vein near  your heart, burrowed under your skin. This was handy as my veins were pretty f—ed. Here is the Hickman Line when it had just been fitted:

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It had two white dangly bits on the end, for taking blood out or putting drugs in. It went into the vein at that spot on the top right (small stitch) and under the skin between that and where it goes in there is a velcro-type cuff which your skin forms a bond to, as it’s a relatively permanent line (unlike a Central Line which is more temporary, or a Picc line which I think may go into your arm). I had this in me for six months, which I find hard to fathom now. Amongst other things, you can’t go for a swim or have a bath. Beyond that, well, you are walking around with a tube sticking out of your chest. Not exactly ‘normal’.

Over the 96 hours, the liquid would magically go out, the spring would get longer, the sausage smaller:

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Not so old-school in terms of the sausage. But doxorubicin is, in fact, a ‘traditional’ chemotherapy agent, i.e. powerful and indiscriminate. It targets fast-growing cells. Cancer cells grow fast, but so do other things such as hair and nails and skin. This is why I spent the next few weeks making hair-balls before getting a Grade 1 all over. Photographic evidence is on the wrong computer but will follow in due course in some hair-related post or other (a bald top-of-head shot is anonymous: even I wouldn’t recognise me!)

Part the Second: Dangerous Triplets

You may have noticed that I had three drugs together and I’m having three drugs together now. In myeloma, there is a tendency to do this as overall they find more people get a good response than with one drug alone. This is a ‘triplet combination’. It’s also fairly common to have two drugs, which is unfortunately referred to as a ‘doublet combination’ by many myeloma articles. I say unfortunately because my inner pedant gets a little bit angsty: ‘Noooo! Surely your doublet is what you wear with your hose?’ before remembering that clever people working on cures for myeoma can say what the hell they darn well like, and actually doublet does kind of make sense.

I’ve no idea how it works medically (and frankly doubt that they do for now) but intuitively I can see how one thing alone may have an effective mechanism, but that will only have results if you’re using another mechanism at the same time. If you’re kicking Myeloma the Puny in the balls, that’s a good thing to do: but if his hands are free he might just punch you right back in the face. If you are also holding his hands behind his back, you can give his balls a right good kicking. And some of these treatments are a lot more subtle: I read about one new drug which causes ‘cell stress’ and it made me think that would be really annoying stuff like constantly hiding his house keys and his mobile phone and giving him spam marketing calls in the middle of the night. Sometimes just adding one little thing to the mix might tip him over the edge to go away and crawl back in his hole where he belongs.

Part the Third: Novel Targeted Agents

Fear not, each part is getting shorter: your lesson is nearly over as my teacherly enthusiasm is waning and my desire to watch telly is rising.

Nowadays, there are lots of other ‘novel agents’ for myeloma which are more targeted at specific cell mechanisms, so they aren’t such a blunt instrument. I’m now on two things in this category, alongside the infamous Dex (steroids). They do have side effects, but not hair loss, which is a relief. I will lose it again later in the year, as I’ll be having a very large dose of proper old-school chemo – but for now having a full-length barnet is very hand for going about normal life, work, etc.

The velcade, as I’ve mentioned, is an injection in my stomach on days 1,4,8 and 11 of every 21-day cycle. The T-drug, which I haven’t yet named as that really merits a post of its own one day, is a pill which I pop every evening. Every bloody evening. Previously I was ‘drug-free’ (apart from all those other supportive drugs like anti-virals and anti-fungals and god knows what) from days 12-21, so I’m struggling a little with the idea of permanent chemo. It sucks. Although I’m not sure if technically it’s a chemotherapy agent, it’s pretty strong.

Velcade, to give one example, is a proteasome inhibitor. I can’t remember what exactly that is, but it’s something to do with recycling waste products. So basically Myeloma the Puny drowns in his own fetid rubbish, and then dies. Many millions of times over. Very satisfying. There are a few similar of these, all ending -mib. Velcade is the brand name for bortezomib, and there are now trials in the UK of the next generation carfilzomib, which seems to be as potent but with fewer people getting peripheral neuropathy – a very nasty side effect which (touch wood) I have not experienced either time so far, but affects a lot of people on Velcade.

I don’t have any cool pictures of velcade (which would just involve big red blotches on my now extra-flabby stomach, and my vanity cannot take that). I do, however, have an excuse to post a target-related picture for the targeted therapies, and thus fulfil a long overdue debt to say thanks for the name of this blog to a great guy called Phil:

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Phil came up with the name, the logo and indeed sells the t-shirt! You can order them online here: http://www.thetrophycabinet.bandcamp.com/merch/myeloma-my-arse for £10 with a minimum of £5 donation to Myeloma UK. I’m going to order a few I think myself to save him schlepping to and from the post office, so let me know if you want one if you’ll see me anyway! Or do buy direct.

I racked my brains about a name for a blog, but the spirit of Myeloma, My Arse! was just unbeatable, so I asked Phil’s permission to steal it. As he’d set up a WordPress blog (although never used it), the address with that name was taken, but I could use the title – and you’ll see that ‘Sodding Myeloma’, my own invention which came a close second, got to be in the address at least.

I have no idea if Phil would want me to say anything much more about him here, so I’ll err on the side of not. But he’s in a band, as you’ll see. He also has myeloma. I’ve met him enjoying a pint, when a few of us got together in January. As he’s been through two SCTs (the thing I’m doing later in the year) and is enjoying a good remission from the second, that is all very inspiring.

Right, that’s enough blogging. It’s Friday night, after all. I feel compelled to rescue a slight shred of street cred by pointing out that my fantastically supportive friend Jakhilde of Battersea did drop by for dinner earlier before a party which I frankly couldn’t have handled and opted for TV and blogging instead. For once I had the food in my fridge and the energy to do the Ready, Steady, Cook! myself, and repay a small fraction of the hospitality I owe. So I’ve had some social activity, as well as a lovely afternoon consisting of lunch and chauffering from my uncle and aunt Patryk and Eliska the Mighty  (introducing my maternal family name!)  with a relatively painless 1.5 hour hospital interlude in the middle.

Yours, technically now 29 Days Later,

Helga the Great x