Project Jenny, Project Jan (with Fujiya & Miyagi) – Pins and Needles

I learnt a new word yesterday and I didn’t like it – Neuropathy.

Before I get into that I better relate what happened on my visit to the hospital yesterday. I had to be there one hour before my appointment to give blood samples. Then around 10.30am I saw an Oncologist. He declared himself happy with my state of recovery – all the wounds are “healing nicely” – and it was a green light for the start of Chemotherapy. We went through the side effects again: decreased ability to fight infections, nausea, tiredness, hair loss, diarrhoea or constipation, changes in taste and a tingling or numbness in the fingers or toes. That list is roughly in the order they gave it to me. We’ll come back to it later.

Next question was whether I wanted to start the same day or come back another day. Strange question – today of course seemed the right answer. I was to learn why.

For the rest of the day I had a slow lesson in the reality of receiving chemo as a day case. My takeaway from previous meetings was that it required a two-hour intravenous drip. Nah!

Here’s a more realistic schedule:

09:30 Blood tests to ensure white cell / platelets / anemia not an issue; allow 60 mins for result to reach doctor
10:30 See doctor, who will give the ok for chemo to proceed in that cycle and raise the prescription
11:00 Best case for when Pharmacy start to prepare your chemo dosage; has to be done just-in-time
01:00 Likely time when drugs are sent to the Oncology day unit, whereupon you get called in to start
01:30 Settled in, they start with fixing the cannula (needle), flush it and start the pre-infusions of glucose and other stuff; two bags of 50ml each at 300ml/hr
02:00 Switch to the chemo bag – 250ml of Eloxatin (oxaliplatin) at 125ml/hr. This is the mythical 2 hour chemo i/v.
04:00 Switch to the post-infusions – lost count but had around three 50ml bags. Heard them mention calcium and magnesium but had no idea why. Then flush again and remove cannula.
05:00 We’re done. Leave.

This happens on every day 1 of each 3 week cycle. It’s an all-day thing. Luckily I only have a 3 week cycle (some people around me were on 2) and I only have 6 cycles (a guy next to me was on #8 out of 12). Because I started a week later than first guessed, my last visit will be on Feb 1st. I assume that my cycle starting Dec 21st won’t be affected by Xmas, else that may slip to later

Having to allow a full day for the treatment isn’t a major deal. Frankly, I was allowing a day for recovery anyway.

But unfortunately the impact of the whole experience is what I have severely underestimated. I thought my Jihad on cancer would just involve dropping a few propaganda leaflets and taking a little bit of collateral damage. I wasn’t anticipating the full-on Shock and Awe assault that came my way. It started around half-way through the infusion. The veins in my arm started to feel like something very unpleasant and painful was flowing through them. It was like one of those vampire films where they show the blood being replaced with the vile serums (is it always green?) of the hungry bloodsucker (sorry about the analogy – I’m reading Twilight and saw an episode of True Blood).

Now go back to the list of side effects above and look at the last entry in the list.

We’re talking about chemotherapy-induced peripheral neuropathy (CIPN). This is where you experience sensory symptoms such as numbness, tingling, or burning sensations (especially if you touch something cold). Your sensory nerves (but not your motor nerves to the same extent) get damaged by the chemotherapy agents. I didn’t know this before, but their active agent is platinum – this is what kills the cancer cells. So it’s like a silver bullet, only better. I really need to stop with the horror movie references now.

Touching cold things may need to be put in context here. A metal knife or fork from the cutlery drawer is too cold. A plate from the cupboard is too cold. A swirl of autumnal evening wind is far too cold. A can of iced coke from the fridge will cause spasms in the throat when you drink it. I keep coffee beans in a metal cannister in the freezer. It took me ten minutes and a pair of winter gloves to get at them this morning (I wasn’t going without my coffee for anything).

The good news is that today the symptoms are wearing off – my arm is tingly but not painful unless I touch something cold.

It turns out that the chemo may cause symptoms during or immediately after the first dose, or the platinum compounds may manifest several weeks after the last dose. Sometimes it’s the same level, sometimes the effect is cumulative. I think that the effects are temporary, but drug sheets and medical advice are never that unequivocal. It turns out that a study showed patients who were given calcium and magnesium infusions before and after oxaliplatin reported less CIPN. That would explain the extra stuff they put in. It also helps if you apply heat – those beanie bag things you put in the microwave are good.

I could complain about this to the doctor, but the alternatives are to give smaller doses several times a week, or give the dose over six hours rather than two, or have a permanent slow-drip attached in something looking like a drinks bottle over many days. They also do something called a stop-and-go treatment plan.

None of these are appealing. Bear it, seems the best alternative.

If it gets bad, maybe non-steroidal anti-inflammatory drugs (NSAIDs) might work. There’s also some very exciting research that cannibis is beneficial in treating symptoms of HIV-associated peripheral neuropathy, and a new drug Sativex is under investigation for MS and Cancer-related pain. Wonder if I can help them out?

After all that, it seems like the fatigue and the nausea are not going to be an issue. I’m taking the anti-sickness tablets just in case for a few days until certain. The tablets are called Domperidone. Say it quickly and it sounds like Dom Perignon as in champagne. Say it around me and I may start to cry. There is a difference.

That leaves one final potential nasty – if I get a ‘flu or food poisoning I won’t be able to fight it so they’ve warned me I may have to stay in hospital overnight if that happens. It’s too late now to take precautions, ironic because my letter of invite for the swine flu vaccine arrived from my GP late last week.