Chemotherapy

43 – Trials or Tribulations

20th June 2023

Oh my word – I didn’t realise how long it’s been since I last wrote a blog post. A few kind people have contacted me separately to see if I’m still er, around.

And yep, I sure am around. Although the going has not been easy these past few months and I've found it a bit difficult in what to write.

To catch up – I’ve now been through 8 cycles of immunotherapy and unfortunately CT scans are indicating that the treatment isn’t having any real effect on the tumours. In actual fact, the latest CT scan is showing that my tumours Tom, Dick and Harry are now coalescing together into one mass (or bulk soft tissue) as they like to call it.

Which isn’t particularly good news – although not all bad right now because still not showing any further spread, it’s seems I’m entering a new phase, entitled ‘Disease Progression’.

Well, to a simpleton like me, it’s all been progressing for the last 3 years. But to the medics it’s all expected, when the first two lines of treatment (Chemotherapy and then Immunotherapy), haven’t been successful.

So right now, we’re at a bit of a crossroads in terms of what’s next.

There is the possibility of joining a clinical trial of some new treatments under test conditions. I’ll be finding out more about this over the next 2 or 3 weeks. From prior experience looking at trials, there are a number of known unknowns and indeed unknown unknowns. So quite a lot to consider before leaving the care of my dear Dr Grant and entrusting others, most likely at a hospital in London.

The other – and seemingly only choice, is a 3rd line chemotherapy with Docetaxel, which is a pretty aggressive chemo drug. Scraping the bottom of the test-tube, kind of thing I reckon😉
But at least this would be with Dr Grant and his superb team here in Gloucestershire

Anyway, I hope to find out more soon about both and then will have to decide on a route.

In the meantime, now that Tom, Dick and Harry and joining together into one mass (so to speak), I’ve been giving thought to a new name for it.

After just a few nanoseconds of brain strain, I’ve decided on Big Dick as the new name for my right-lung soft tissue thingy.

Absolutely not to be confused with any other soft-tissue thingies.

Make a note people 😊

Until next time…
Stay safe
Woz

42 – End of the Line

21 February 2023

Fortunately, the title refers to the end of my PICCadilly line, and not to me personally!

Because I’m now on one immunotherapy infusion every 4 weeks, I had to balance the nicety of no needles for bloodwork and infusion, against the requirements of keeping a PICC line in place.

In-place means weekly visits to my local nurse clinic to have the line flushed and dressing changed. Also of course, keeping it secure and dry all the time – especially when showering etc.

Removing it, means I don’t have to do all of the above, but now have conventional needles for blood sampling and a canula fitted each time I have an infusion.

It was a decision that on balance I went with the line removal and for now, just a monthly jab or two. In many respects I had grown quite attached to my line – or indeed how it was attached to me!

Here’s a couple of photos; of my line from a few months ago when in-place, and another of its approximate route when it was in me.

So that’s about all for now.

Oh – just a quick update on treatments. So, I’m still on monthly infusions, but it’s too early to say if the treatment is working, or not.

The plan right now is to have two more immunotherapy infusions – one in March and then again in April. These will be followed by a CT scan, to determine if the treatments look like being successful, or back to the drawing board…

41 – So what’s this Immunotherapy all about?

23 December 2022

They say one shouldn’t spend too much time on the internet trying to find out about cancer treatments. And on the whole, I’d say that’s pretty good advice.

Unless you’re Wozzer that is!

Unfortunately, I have too much time on my hands these days, so checking stuff on the web is right up my street.

And when Dr Grant discussed my new immunotherapy treatment, with a drug named Nivolumab (brand name Opdivo), of course I had to check it out on Wikipedia: https://en.wikipedia.org/wiki/Nivolumab

Immunotherapy is completely different to the more well-known Chemotherapy. The key difference is in the way that they ‘target’ cancer cells.

Here’s my simple understanding:
Our bodies are comprised of literally billions of cells, that provide the complete structure of how we are and how we live eg, nerve cells, blood cells, muscle cells and more. They’re all working 24/7 and can repair themselves if things are going wrong (viruses etc). They can die and duplicate so that new cells replace the dead ones.

Sometimes though, in some people – cell structures can become damaged inside and they start to duplicate uncontrollably, growing as cancerous tumours.

And even worse, they can spread to other parts of the body and begin to grow and develop in or on other organs, known as ‘metastasis’.

And if those two statements are not bad enough, the ‘metastatic’ cancer cells can send signals to our body’s own immune system (antibodies) to stop trying to fight or ‘cure’ them. Which is what makes cancer so scary, because by this step – the cancer is usually incurable.

So, Chemotherapy attempts to reduce the uncontrollable cell-splitting duplications, but unfortunately can and does stop healthy cells from duplicating too. This is why there are generally such severe side-effects associated with this type of treatment.

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.

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.

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.

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

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.

Meetup with former colleagues at Viet Orchid Travel in Hue City, Vietnam

An Bang Beach, Nr Hoi An Ancient Town, central Vietnam

Fish and Chips served the Vietnamese way, by the delightful Ms Huong – owner of Chips ‘N’ Fish ‘N’ Stuff restaurant in Hoi An, Vietnam

One of the main ‘musts’ for the trip was a cold one in downtown Saigon / Ho Chi Minh City, Vietnam It didn’t disappoint 😉

The new Phnom Penh Skyline – looking at BKK1 area Preah Sihanouk Blvd

My favourite landcapes of Cambodia. Rice fields and Sugarpalm Trees. Near Kep

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.

All the chemo should be out of my system and infection resistance reasonably okay by the time we fly on 10^th 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.

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.

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!

34-Calm before the storm

And this is because a couple of weeks ago I received my latest CT scan results, which like the curate’s egg, is partly okay and the other bit not so.

The good bit is Tom, Dick and Harry are just about still behaving themselves, in that since they had that good zapping with radiotherapy back in December – they’re still not yet back to their pre-treatment sizes.

The not so good is because the scan report states ‘there are multiple tiny nodules in the left lung which are suspicious’. Typical understatement – really meaning that it’s looking like the beginnings of spread to my other lung.

So that also meant re-discussing my treatment plans and a big decision that went with it.

In my last blog post, I was trying to choose between entering a trial program with some shiny new drugs to test on me (and others), or immunotherapy under the care of Dr Wozzer at my local oncology unit in Cheltenham.

But now, considering what appears to be the onset of further spread, chemotherapy will be the first-line drugs treatment. This in itself isn’t straightforward for me, because the ‘go-to’ treatment would have been Cisplatin, but there were (and still are) concerns that my kidneys would be damaged by that treatment.

So, quite fittingly for Wozzer– I’m having a cocktail of two chemo drugs: Carboplatin, which is less toxic than Cisplatin, hopefully with reduced side-effects and Fluorouracil (5-FU), which I think is going to do most of the heavy lifting in attacking the cancer cells.

If we remember back to a previous post when I touched on how cancer cells uncontrollably divide and create serious problems in the body, well, chemotherapy disrupts this cell-division and generally shrinks tumours or at least slows down their development.

Unfortunately, chemo drugs in general can’t just target cancerous cells. Other fast-dividing cells in the body, such as hair follicle cells (leading to hair thinning or loss), cells that line our stomach and bowels; (leading to sickness and diarrhoea); or blood cells (leading to tiredness and bleeding from almost anywhere) are also attacked by chemotherapy – so this is what causes the well-known side-effects that we see or hear about.

Of course, there’s a long, long list of side-effects and it appears that every single patient reacts differently. But it seems for my case that the three listed are the main ones to watch.

How they get the chemo drugs into me and for how long I’ll be on chemo? Well, that’s a longish answer and worthy of its own blog post.

Which is my way of saying I’ll do my best to write that up in a day or so! Until then, I’ll keep on with the beerotherapy 😊

27-Learning new words about Cancer

This came about by doing too much of what I shouldn’t - which is hunting around the interweb trying to find information, about things of which only give me an incomplete picture as to what's likely to happen.

Let me back up a bit. My first full scan, post treatment was done last September – and that was a very anxious wait to find out the results.

Good and bad was the outcome of that scan. Good that the throat tumour has diminished – bad that metastatic (secondary cancer) tumours had been found in a couple of locations.

They weren’t deemed ready for treatment then, but another scan was scheduled for January 2021 to see if there’s any further development.

And there is.

No matter that I try and not worry about what I can’t influence, but waiting for that next scan and the outcome, is never ever far from my thoughts. Every day.

That is definitely Scanxiety.

And so I was ever so glad to have my January PET/CT scan and the subsequent appointment to discuss the results. The scan indicates a third tumour showing in my right lung and the original two in the same lung are still developing.

It wasn’t a great shock and I’m now back under the care of my oncologist – the excellent Dr Warren Grant. He phoned me the other day to get my thoughts and to update me on his thinking.

As ever with me, it’s not yet clear-cut. I will be starting treatment again, but right now it’s not definite when, or with what. By this I mean the choice will be either Chemotherapy or the much newer Immunotherapy treatment.

This is another new word for me. Immunotherapy ' which uses substances to stimulate my own body immune system to fight the cancer'. I suppose it's too much to wish these will be ganja-type substances, but one can hope - eh?

The decision depends partly on whether my cancer would be receptive to Immunotherapy and also on the overall effect of how my body will respond to either of the drugs.

That – and the schedule for treatment will become clearer on my next appointment with Dr Grant in mid-February.

Here’s a video for those interested in seeing how this works in practice.