5FU

39 -FU2 Chemo and Scanxiety

12 October 2022

Ooh, I didn’t realise how long it’s been since my last post back in August. They say time flies when you’re enjoying yourself…

Well, I wouldn’t quite call it ‘enjoying myself’, as I’ve been on Chemotherapy continuously for the past 10 weeks. In fairness it hasn’t been so bad for me – I’ve had few side-effects, but still got all my hair and appetite.

Of course, it’ll take much, much more to stop me eating than a few doses of chemo!

I’m absolutely convinced that the Beerotherapy has helped, if only that following high doses of beer, I seem to forget about what’s up with me.

I might have also forgotten to tell my GP about the beer. She spoke to me a couple of weeks ago and says I’m ‘defying science’ when considering my treatment regime. I think my body has defied science for many years really, but I’m taking this latest medical opinion wholeheartedly!

As I write this, I’ve just started my sixth cycle of chemo. Each cycle is 3 weeks and goes something like:
Week 1 (Mondays) - I get two infusions in hospital – Carboplatin and Fluoroucil 5FU along with anti-sickness medication and Dexamethasone steroid, which I also get tablets to take at home.
Week 2 – No new infusions or drugs, just feel the treatments working (feeling of fatigue and occasional sickness), along with forgetfulness which I blame on the chemo, but really I suppose it’s a function of age ☹
Week 3 – This is a so-called recovery week where my body regains its white blood cells and has increased immunity from infection.

At the end of Week 3, I’m back in hospital on the Friday for blood samples and the consultant checks that I’m fit and well enough to start the poisoning cycle again on the following Monday!

So, being in my sixth cycle of chemo, I think this is the last for now. The regimen calls for six cycles of 3 weeks (18 weeks total) and then evaluation of the treatment and its success (or not) of slowing the growth of existing tumours and any spread to further parts of the body.

Evaluation is done by taking CT scans, which I had at the end of September and then my consultant Dr Grant, decides on the next steps. This could be more of the same to follow-on, a break in chemo and then restart when my body recovers or a completely different treatment.

That was a simple enough paragraph to write, but the actuality is more complex and frustrating.

It seems that post-covid the NHS are under pressure to increase scanning for many patients, especially those with cancer (or initial scans to find out) – and this appears to be happening 7 days a week here. This is the good news.

The not so good news is that the next step in the chain is the ‘Radiologist Principal Interpreter’ (as they’re called here in Gloucestershire), to write a report detailing what the scans show. It is this report that goes to my consultant for him to decide on prognosis and treatment.

But now we’re in a position that the Radiologists are completely overwhelmed with the higher volume of scans to interpret, meaning there are lengthy delays in getting these to the consultant.

Which is where I’m at right now – with no report available after almost 3 weeks and not knowing how I’m doing, or what happens next.

Hoping to know more soon(ish) and write an update on this in a week or so.

Anyway – back to the chemotherapy.

I’ve had a few people (via my blog and social media) ask me for a bit more detail about the regimen I’m on. The how and why of this combination of Carboplatin and Fluorouracil 5FU is infused.

So here goes my understanding:

Normally the go-to chemotherapy for my type of primary and therefore secondary cancer, officially known as ‘head and neck squamous cell carcinoma’ is a long-standing treatment called Cisplatin. It’s a platinum-based drug and very toxic – especially to kidneys. And it was determined early on in the process that my kidneys might be damaged, to the point that I’d be worse off with renal failure than the cancer!

In fairness, my poor old kidneys have worked pretty dammed hard, filtering probably far too much alcohol over many sessions. Seemed great at the time though!

So, Cisplatin definitely isn’t for me. The alternative is two drugs, that when combined attack the cancer cells, but with lower risk to my kidneys. That’s not to say they’re milder – I understand that it’s more like 1+1=3, in that the combinations works better than either drug given in isolation.

Hoooked up and still smiling!

For the past so many Mondays, I’m in Prescott Ward at Cheltenham Oncology Centre. It’s a day patient ward for cancer treatment infusions, and we’re in chairs rather than beds. My time there is around 1.5 to 2 hours. The staff – as ever – are amazing and highly professional – even more so because of the Cytotoxic (toxic to cells) drugs they have to handle and dispense. And of course, helping patients with varying stages of cancer.

It starts with a hook-up of a quarter litre of saline, which goes into my PICC line via a pump. This is just to give me a bit more fluid.

Then I get a dose of steroid (Dexamethasone) through the line to help my body resist the immediate effect of the chemo – then finally the Carboplatin is added to my line. It takes exactly 30 minutes for the 570ml of Carboplatin to be administered. That equates to a dose rate of 1140ml per hour.

Following that, the second infusion is the Fluorouracil 5FU. This is highly concentrated and quite strong. So much so that it takes 96 hours to infuse 192ml of 5FU. This equates to a dose rate of just 2ml/hour.

Back in the day patients would be in hospital for 4 days (96 hours) to receive this continuous infusion. But nowadays I have a ‘Baxter Infusor Pump attached to me and my PICC line and it stays connected for the full 96 hours – day and night. I did touch on this in a previous post – but now I’ve detailed some more by request.

The Baxter Infusor elsotomeric pump, to give its full name is known as an  OPAT device. OPAT stands for Outpatient parenteral antimicrobial therapy, which simply means self-administration of complex drugs in the community (at home), under telephone helpline supervision.

Handle with great care, I reckon

The ‘pump’ itself is a work of genius. It doesn’t have any metal moving parts or electrics. Instead, it has a pressurised balloon filled with the 5FU chemo.

This is inside a sealed container and connected to a fine flexible pipe of around 90cm long, which attaches to my PICC line. By day I wear it in a pouch attached to my belt.

How the Baxter Infusor is plumbed to my PICC line
Daytime wearing of the Baxter Pump - attached to my belt and hidden under my clothing, so that hardly anything is visible.

At night, the pump is placed behind my pillow – but with only a short pipe (the pump that is), I have to be careful about how I move!

The ‘pump’ action is a combination of the pressurised balloon expelling the chemo through the fine tube and a flow regulator that is attached to the PICC line. Between them, they rely on body heat and I suppose a bit of capillary action to keep the flow moving at the correct dose.

FU2 Chemo is inside the balloon. The balloon deflates each day in line with the calibration marks.

On the fourth day – a community / district nurse comes to me at home – timed as close to the 96 hours (from the previous Monday) and disconnects the pump, flushes my PICC line with saline, changes my PICC dressing and then that’s pretty much it until the next cycle.

The empty Baxter infusor still has to be handled carefully and I’m provided with a special container to hold the pump, which I have to take back to hospital for specialised disposal.

And that’s pretty much how the chemo drugs are administered. Hope it helps someone who might be starting this process and hasn’t bored the remainder of my followers of this blog.

Until the next update of scanxiety and what’s coming next for Wozzer…

Take care and stay safe x

38 -Back on the Picc Line

9 August 2022

Well, I’m back from the long awaited trip back to Vietnam and Cambodia. And thanks to the superb pre-trip planning by my medical team, which included a ‘final’ Full Blood Count just a few days before departure, to ensure my immune system was back up and running for full infection resistance.

And it was - so there was no stopping Woz 🙂
I didn’t even need so much as a paracetamol for the two weeks away!

Of course, beerotherapy helped. As did the local medicine (Lychee Martini) in copious amounts. Well at least what I remember of those sessions 🙂

Purely for medical research - Lychee Martini infusions.

I’ve already had a new Piccadilly line inserted, by the ever professional Lauren and her able assistant Donna.

I still can’t get over how a complicated procedure is completed so quickly and almost painlessly.

And believe me, inserting a fine plastic tube 520mm (yes that’s just over half a metre) through a vein from my shoulder and around my chest to terminate near my heart, is no mean feat.

Ultrasound scan prior to PICC line being inserted. The 'hole' in the middle of the monitor is a highly magnified cross-section of one of my veins.

Anyway, the line’s in and is planned to stay in for the next 3 months or so, while I continue with another four cycles of three weeks each, chemotherapy infusions.

So that was me yesterday, back in the Oncology centre in Cheltenham for my infusion of Carboplatin and then hooked up to my ’chemo pump’ which contains the FU2 Chemo that will slowly but surely be infused over four days this week. This is the third of a planned six cycles of treatment.

Then it’s just a matter of waiting to see what nasties the treatment has in store for me over the next few weeks, while I wait for the next cycle to begin at the end of August.

In the meantime, I’ve added some pictures from the trip so I can keep looking back and remembering what a splendid time I had with family and friends across the two countries.

 

Until next time, feel free to be jealous 😉

37 – Up, up and away

24th June 2022

‘We’re not trying to poison you Warren – we’re always trying to balance effectiveness against quality of life’. This was explained to me by my Oncologist, Dr Grant, as I’d finished my second cycle of chemo – totalling six weeks so far.

And as ever, he has it bang on the nail.

I say this because I seem to have tolerated the chemo quite well. Fewer side-effects than I was expecting and overall, felt okay – all things considered.

I have four more cycles of three weeks to do, but this will recommence in August.

The reason for this pause in treatment  is that I’ve been passed as ‘fit to travel’ – therefore the trip I haven’t been able to take since all this started in 2020, is allowing me one more visit to see friends and family in Vietnam and Cambodia.

It’s a relatively short trip for me – just a couple of weeks, so I don’t push my luck. Samros and Nisa will be able to stay a week or so longer. But enough time for me to revisit some of my favourite places in both countries.

Among them will be around Ben Thanh Market for excellent street food in downtown Saigon (HCMC) and Kep – a small town on Cambodia’s south coast, which is famed for its amazing seafood.

All places of course offer good and cheap Beerotherapy, so I’ll be suitably 'hydrated' throughout.

All the chemo should be out of my system and infection resistance reasonably okay by the time we fly on 10th July. My PICC line has already been removed and will be reinserted when I’m back, ready to start treatment again.

But between now and then, it definitely feels like freedom for me – no tubes or medication for a few weeks!

And on that happy note, I should start thinking of packing but as ever with me, will just do it on the morning we fly 😊

I’ll be back on here with an update around mid-August.

Until then, take care x

36 – First Chemotherapy Cycle

I’ve just completed / survived my first week on the chemo cocktail, so perhaps a good time to reflect on how things have played out so far.

Starting a new line of cancer treatment gives rise to trepidation and uncertainty – it’s a fear of the unknown. Doesn’t matter how much I research the side-effects, it’s clear that even identical treatments on patients, generally produce widely different outcomes. So just got to deal with it as it comes, I suppose.

Monday 9th May was a lovely sunny morning as I walked into Cheltenham Oncology Centre. Very much the same as when I started radiotherapy almost exactly 2 years previously, as a cancer ‘newbie’.

But now the centre is very familiar –many of the staff know and greet me – but in that special way that they have of being welcoming, although not particularly happy to see me in there again.

I’m an hour early for my appointment in the chemo ward. No point to sit waiting at home, I’d rather wait in the unit and hope they can get me in early. Which they do.

A hospital volunteer greets me and leads me to the chemo unit and my ‘reserved’ chair. There are six chairs in my section and most are occupied.

My allocated nurse – Kat introduces herself and goes through the double (and it seems triple) checks just so there’s no mix-up in treatments to the wrong patient.

I’ve really dropped lucky with Kat. She’s super-efficient, but also wonderfully funny – and I can tell by her interactions with other patients, this is not an act. I think it’s marvellous how nurses can work on this type of unit, knowing what they know – and yet remain remarkably upbeat to ensure the patients have a relaxed time there.

Kat sees my PICC line ‘ooh – lovely’ she says. ‘I can do all sorts with this.

Lovely for me too, I have hopeless veins for needles and cannulas.

Kat hooks me up to a saline drip – get some fluid in me to begin.

This is followed up by a good shot of Dexamethasone, which is a steroid. It’s used for many treatments, but in my case to help the body transition with the chemotherapy drugs. After that I get a dose of an anti-sickness medication and then finally hooked up to the Carboplatin chemo. This infusion takes around an hour.

Kat puts it all together and places the Infusor into a small ‘bum bag’, which attaches to my belt. That’s me and the Infusor ‘married’ for a few days. I can’t disconnect it and must get used to it being there – including while sleeping, without of course, allowing the line to become tangled or disconnected.

It’s pretty amazing how we adapt to new things. In 60 odd years, I’ve never slept on my back – but immediately I find that wedging the Infuser behind my pillows, gives me enough play in the line that I can (almost) sleep comfortably.

Showering isn’t easy – I have a waterproof sleeve to cover the PICC line and then protect the Infuser pump by placing it in a plastic bag and then tied to my wrist. Kinda works though!

And that’s it really – my first week on chemo hasn’t been so bad, all things considered.

I’m feeling fatigue – but that’s easily overcome by having a lay down. I’m well experienced in this anyway. Hopefully it’ll stay this way and we’ll see how my second cycle goes in early June.

In the meantime, I'll be thinking how to best re-brand the 5FU Fluorouracil, to someing more catchy and memorable.

How about FU2 chemo?

😉

Take care all x

 

35-Preparing for Chemotherapy

So, it was agreed that because of the tumour progression, the return of back pain caused by the tumours and the signs of spread to my other lung, that Chemotherapy would be better as a first-line treatment and likely to show faster-acting relief than immunotherapy. For now, at least.

Believe it or not, this isn’t as scientific as we’d think. The decision is down to each individual patient in how they feel, disease progression and to a degree their own choice – after discussion all the options with the professionals.

Once the decision was made, as ever here in Gloucestershire – the NHS were very quick to swing into action and book all my pre-treatment and prep appointments. This included a thorough Q&A session with a chemotherapy nurse, blood tests and the insertion of a PICC line (peripherally inserted central catheter)

Image courtesy of Macmillan Cancer Support

Because I’ll have a number of chemo infusions, it’s better to have a semi-permanent very thin tube inserted into my upper arm, and around 500mm through my veins to a position near my heart. Once in it can stay in for a few months and receive medications and also be used for blood sampling etc – all without the use of needles. Perfect for me!

I had to admit to a bit of trepidation as I was told this is done with a local anaesthetic and awake, while watching progress of the tube through my body on an ultrasound scan monitor.

Pretty amazing is all I can say! The PICC team were very efficient and the whole procedure was over in around 25 minutes. Apart from a slight feel as the Lidocaine anaesthetic was injected, I never experienced any pain.

Big thanks to Lauren for a very professional, calming, and quick procedure x

Well, I’m all set to begin the first of my planned 18 weeks of chemotherapy. This is administered in 6 x three-week ‘cycles’.

Each cycle will comprise a one-time infusion of Carboplatin, followed by four days of Fluoroacil 5FU chemo at home, which is delivered by a small pump (which I must wear 24/7), at a rate of 2ml/hour for 96 hours.

This pump has a tube which is connected to my PICC line and I have to eat, sleep and shower (somehow) with this whole contraption in place. At the end of each cycle week – a district nurse will disconnect the pump, flush out my PICC line and re-dress the line entry point in my arm.

Then it all starts again three weeks later!