Complete blog – Page 2 – Wozzers Journey with Cancer

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.

40 – Cancer Scan Anxiety and Scanxiety

10 November 2022

I’d touched on the scan and especially reporting delays in my last post. And it appears to becoming an issue countrywide. One cancer patient I’m in touch with, was still waiting for his scan report, almost 3 months after the scan – and almost in time for his next scan!

So, what on earth is going on?

The system seems to be that once a patient has a scan, the images are interpreted by a Radiologist who then writes a report and forwards said report to the specialist doctor. The doctor then considers the report and decides on the best treatment for the patient.

All good and the system worked pretty well, until what appears to be a backlog due to a combination of Covid delays and lack of trained personnel.

I did a bit of delving, but didn’t get very far with my local NHS Trust. Certainly not without making a ‘Freedom of Information’ request. And I don’t have the energy or inclination, for all of that.

But, talking to a doctor recently, it’s clear that scan reporting is likely to be an ongoing issue for the foreseeable future.

As he put it to me ‘They can keep producing scanning units every day, but it takes around 10 years to fully train a Radiologist to interpret scans professionally’.

In a way then, my 3.5 weeks wait for the results wasn’t a long time in the big scheme of things, but an eternity in terms of anxiety, not knowing how things are.

And unfortunately, it wasn’t the news I was hoping for. The 18 weeks of chemotherapy didn’t shrink any of the tumours, and in fact the largest (Tom) had increased in size by some 50% from 40mm to almost 60mm. Dr Grant was also very disappointed by the results.

If there are any positives to take from this, no further spread has been detected. Whether that’s due to the chemo or just natural, is impossible to tell right now, but suffice to say that because the first-line (chemo) treatment was unsuccessful, then some careful consideration had to be given to the next steps.

These ranged from pause treatment for a few months and then scan again; use a different type of chemo or start with a course of Immunotherapy. We discussed the options and agreed to run with the latter. So later this month, I’ll be back for bi-weekly infusions of a drug named Nivolumab.

I begin next week 16^th November – with preliminary checks and tests and then my first infusion is scheduled for 21^st November and then every 2 weeks after that. I guess quite a bit depends on how I react to the treatment.

Dr Grant tells me that I have to be aware of anything ending in ‘itis’ (inflammation) i.e. dermatitis, colitis, hepatitis etc. This is because the drug alters the body’s own immune system and while generally well tolerated, it can have quite unpredictable and serious effects

Anyway, I’m sure I’ll learn a lot more in the next few weeks – if nothing else I’ll have lots more material for my blog 😊

So, all being well, I’ll write an update after my second cycle in December. Until then, wherever in the world you are – take care x

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 😊

33 – Testing, testing…

31^st March 2022

Wow, how time flies.

Looking back through my blog – it’s exactly 2 years to the day that I went to my local hospital with a bit of a sore throat. Mind you – it’s not a date I’d ever forget anyway!

I find it interesting to look back at the phases – from the shock of initial diagnosis in 2020, through the aggressive radiotherapy and recovery, to the ‘living with cancer’ phase of 2021 and now the palliative treatment phase due in 2022.

I have to say that right now, the issues are far more mental than physical.

Outwardly I look fine and generally feel okay – well, apart from breathlessness and a nagging back pain. Both are the result of the Tom, Dick and Harry tumours. They were stunted in growth when given a good zapping of radiotherapy a few months ago, but the little bastards are telling me that they’re finding a way to recover and annoy me further.

Inwardly though, it’s becoming more of a constant daily, hourly reminder that all is not well with me. While I try and only worry about things I can control, rather than things I can’t – this is for sure becoming more difficult with a poor prognosis and a generally uncertain future.

Still – as we all seem to say these days, it is what it is 😉

On the diagnostic front, there’s been a fair bit happening in these past couple of months or, but no firm decisions right now on the best way forward.

What we do know is that 2022 will see more treatments, just to relieve and hopefully slow the development of the current lung tumours and of course, any further spread to other organs.

And I’ve been a bit overwhelmed with the choices that might be coming my way.

It could be chemotherapy or immunotherapy or a combination of both or indeed, experimental trials.

I’ve started the pre-screening for a clinical trial involving a new type of vaccine combined with an immunotherapy drug. It sounds quite exciting, but of course there’s a few ‘buts’

It’s quite experimental, known as a ‘phase 2’ trial.
This means it’s got past a small sample of patients (generally with very advanced cancer) in a Phase 1 trial.

Phase 2 trials generally aim to find out:

if the new treatment works well enough to be tested in a larger phase 3 trial
which types of cancer the treatment works for
more about side effects and how to manage them
more about the best dose to give

This particular trial is being tested on around 190 volunteer patients in 10 countries.

It’s known as a ‘double-blind, randomised’ trial to test this new type of vaccine treatment combined with an immunotherapy drug that’s been used in the past for a similar type of cancer to mine.

The randomised bit is that 50% of the patients get the real vaccine and 50% get a placebo vaccine. All patients do get the immunotherapy drug though.

The double-blind bit is that neither the patient or the people delivering the treatment, know (or certainly won’t say) who is receiving the vaccine and who is receiving the placebo.

So all in all, this is really about the drug companies testing product combinations for possible future wide-scale treatments, using the latest ideas around. For the patient, it’s a gamble as to whether there’s any additional benefits – and by this, I mean survival time against more shall we say, the more conventional types of chemotherapy or immunotherapy.

Although, this trial might just be the ‘miracle cure’ that the world has been waiting for!

I’ll be discussing all my options during April with both the clinical trial team in Somerset and my own Dr Wozzer here in Gloucestershire. Pretty sure one way or the other, I’ll be having treatment before the summer.

Immunotherapy is definitely the hot subject in the oncology world right now. I’ll research and then write up some more on this, hopefully next week.

Until then – take care x

32 – Palliative Radiotherapy – what does it do?

14 Dec 2021

Now I know how a ready meal feels. Cook on full power for 4 minutes and then rest for one minute.

I’ve now finished my fifth and final (for now?) fraction of Radiotherapy. So that’s been one treatment a day for five days. As I mentioned in my previous post, there’s no mask for body positioning in the treatment machine (LINAC), just a small tattoo on my chest.

Each day, I’m positioned on the machine and then the radiologists use lasers to ensure my body and the machine is in exactly the correct position. Then I must lay perfectly still for a few minutes as though my life depends on it. And to a great degree, I suppose it does!

I have to say I’m pleasantly surprised that the side-effects are not so bad at the moment – certainly when comparing with the extremely tough treatment to my throat last year. This treatment is really to ease the pain in my back, that’s been caused by the tumours increasing in size.

So, they are hopefully shrunk a bit in size, but my understanding is that it’ll be a few weeks before the full effects are known.

I’ve also had the time – and inclination – to read up some more on what radiotherapy does and what these treatments are given in ‘fractions’, rather than one good ‘zapping’ – so to speak. When I say ‘read up’ I really mean ‘skim read’ of the bits I can understand.

So here goes:

It starts off with the billions of cells that we have in our body. Normally they ‘just work’ and keep all our body working in tip-top shape. Different types of cells in the body do different jobs. But they are basically similar. They have our DNA which generally controls how the cells behave.

Cells come and go. They make copies (reproduce) in an orderly and controlled way and are needed to keep the body healthy. Sometimes they get damaged, and our body has amazing repair teams that can fix cells very quickly and get them good as new.

BUT, some cells get confused by instructions from our normal DNA and they start reproducing (mutating) in a disorderly way and become uncontrollable.

In the worst cases, they can’t be fixed by the repair teams. These worst-case mutated cells can become ‘cancer tumours’

Of course, there are a number of treatments to either kill-off the cancerous cells, or at least hinder their growth. These range from chemical therapy (chemotherapy) to radiation therapy (radiotherapy) and even newer treatments such as Immunotherapy.

I’ve also spent the past few weeks on my own self-administered treatment of Beerotherapy. I’m finding that high intake doesn’t actually control the tumours, do I do forget about them for a few hours. Treatment will continue for as long as I can get to the pub.

Anyway – back to radiotherapy!

The machine that I refer to is a medical linear accelerator (LINAC). I wrote an article on this last year here

It uses extremely high-power energy beams - let’s call these micro-bullets – moving at the speed of light and accurately aimed at the tumours. They’re ‘fired’ from outside the body and because they’re so minutely small and incredibly fast moving, I don’t feel anything while the treatment is being done.

Inside my body however, a number of things begin happening.

First, obviously the micro-bullets are also damaging good cells that are adjacent to the tumours – but my body’s repair teams get straight to work on repairing these. The really clever bit is that the cancerous cells that are getting blasted are not able to repair themselves anything like as effectively – and so bit by bit they become reduced or sometimes destroyed.

And this bit-by-bit thing is helped by what the medics call ‘fractionalisation’.

Which means that instead of one single dose of energy – in my case 20 Gy (grays) of energy (equivalent to around 200,000 normal chest x-rays) is given to me in five fractions of 4Gy per day. In this way my healthy cells are being repaired 24/7 and ready for the next treatment.

An analogy (admittedly not a great one) is to consider a car with four road tyres and a spare in the trunk. If the driver was unlucky enough to have a puncture in each – it would most likely to be less disruptive to have one puncture each day and repair it, rather than five punctures in the same day.

All the while, the cancerous tumours are in big trouble, because they don’t have the efficient repair teams to fix themselves.

So, fractionalisation is far better for the body. Of course, not all the healthy cells repair overnight – or even over days or weeks. Some of these also get damaged beyond repair and this becomes what we know as side-effects from the treatment.

And unless I’m one in a billion – I’ll feel these side-effects over the next few days, weeks or even months.

Which leads me nicely towards the holiday season. No more treatment until at least mid-January, when I see Dr Grant again and find out what comes next.

And that leads me nicely in to wishing you a very happy Xmas and a peaceful and prosperous New Year, wherever you are in the world.

Take care

Woz x