metastatic cancer

50 – Four years on and living to tell the tale

27 March 2024

Wow! This time it’s been three months since my last blog post – and the main reason is…
No excuse really!

It’s just coming on to 4 years since my initial cancer diagnosis, back in those crazy days of April 2020, when the Covid pandemic was just unfolding.

As a close family, we’ve been through a fair share of ups and downs. I’ve surpassed most prognoses, which in fairness are at best an assessment on the success(es) of treatment(s) and what generally happens to patients of similar state of health.

It was nearly 2 years ago that things weren’t looking so good and this was the first time Samros and me were introduced to another of the NHS protocols that we don’t know about – until we need to know about them. There we were sitting with my GP in her surgery in mid-2022, discussing end-of-life (EOL) care. There were options open to us about the how, what and where things should happen.

I won’t go into the fine details, but one thing that did happen as part of the protocol is to issue me with a box of EOL drugs, to keep at home and that remains sealed until the medics need to use them. The NHS euphemistically calls it a ‘Just in Case’ box.

So you might be able to imagine our joy when I returned the box to the pharmacy last week, because the EOL drugs have expired their use by date.

It’s a great feeling to outlive the end-of-life drugs and if I say so myself – I love the irony of this. And of course, the smiles I received from the pharmacy staff too.

Medically, our National Health Service continues to excel itself in terms of my care. Since I last wrote – I had a CT scan in January which is still showing no real development of my right-lung tumours – although there is some growth and I’m still being monitored by both the ever-wonderful Dr Grant and also by The Royal Marsden. It don’t get much better really.

The tumour growth I mentioned is, we believe, small but significant enough to affect a nerve somewhere that’s troubled me on and off for the 2-3 years. But it’s now more constant and normal painkillers of various flavours aren’t doing the trick any more.

So, I’m back on morphine and this will most likely continue for the foreseeable future.

I have a slow-release morphine capsule – which is taken orally morning at night time.

It’s a fairly low dose, which dulls, rather than completely eradicates the pain. The slow-release action spreads the effect over around 10 hours. This is in contrast to ‘normal’ morphine which gives a more immediate relief, but over a shorter period.

 

I prefer this low dose, so it doesn’t affect my driving and generally I hope not to become too addicted or dependent in the future. But probably will at some point.

Along with this – I did have lung function tests and a follow-up with a respiratory consultant, to discuss my breathlessness in general and my (clinical trial) damaged left lung in particular.

While the inflammation has subsided in the main – I’m still on supplemental oxygen, although I do try short, level walks without it. Again, this is because I hope not to be dependent – and also for me, I’ve become quite self-aware of the plastic tubes (cannula) that go in my nose.

It could be argued I’m not a pretty sight at the best of times – unfortunately a nose cannula does absolutely nothing to improve that 😉

Anyway – for the time being I’m still on external oxygen when required and I’ll have some more tests and further evaluation / consultation around mid-year. That’s when I should get to know whether this will be a permanent accessory, or not.

And if all of that isn’t enough, we’re finally getting somewhere with the falling-down/ dizzy spells stuff. I had a meeting with a consultant physician at Gloucester Royal Hospital, Syncope dept.

I think Syncope is a much better term for fainting/falling down. Doesn’t sound so ‘old people / silly old git’.

The tests began with blood pressure readings taken laying down and standing up. My laying down reading was 135/59 mmHg, but after 5 minutes of standing up, the reading was just 55/25 mmHg. Not good at all – but nothing new to me as I’d been monitoring my BP with a home test kits pretty much daily.

This has been officially diagnosed as Orthostatic Hypotension, which simply means low blood pressure, when standing – especially from a prone position.

The interesting thing is what causes the significant drop. It’s known as autonomic failure or autonomic dysfunction.

So, as I understand it – our autonomic function(s) are those things that the brain controls and happens without us having to think about it – examples being what makes our heart beat, eye blinking and so on.

Now – when we stand up from a sitting or laying position – our autonomic system is supposed to counteract the natural tendency of blood falling to our legs by gravity. It does this by restricting the blood vessels in our legs and increasing our heartbeat – so that oxygen-containing blood is sent back up to our brain.

When this doesn’t happen – as in my condition, then the brain can sense the lack of oxygen and quickly shuts down functions that aren’t required at that moment. Legs aren’t really required, so the muscles don’t function and this usually results in the fainting / momentary loss of consciousness episodes that occur.

Many people might experience a slight feeling of dizziness when standing quickly, but their body counteracts things quicker than mine is capable of, so they don’t fall down.

These also a discussion that my lower oxygen levels due to damage now to both lungs, is possibly exacerbating the blood oxygen / brain function issue. Well, that’s my excuse for many things that I forget now!

So, apart from the right-lung tumours and radiotherapy scarring, my left-lung damage do to severe pneumonitis and my autonomic disfunction thingy – I’m doing okay!!

And this is what people are saying to me – ‘you look well Woz’. Even my GP and Oncologists say this.

So it can’t be all that bad.It even makes for some moderately interesting subjects to write about 😊

Until next time…

Woz

49 – Dodging Bullets

23 December 2023

Blimey – December already!

I didn’t realise it’s been two months since my last blog post, and while I’ve felt not much has changed – and it hasn’t really, I have at least made some gradual progress.

The treatment regime for pneumonitis has got me out of the worst of the problems and the lung inflammation has subsided. But I’m pretty certain there’s still some lasting damage to what was my good lung – and I’ve got more lung function tests lined up during February 2024 to try and quantify the situation.

The smart money at this stage seems to indicate I’ll be on supplemental oxygen long term. And while I’m getting more used to being hooked up to a machine and I can get out and about, it isn’t much fun at all really.

Still, on the bright side the last CT scan that I had in mid-November shows that the tumours in my right lung are still ‘stable’ – that means no growth (or disease progression as the medics say) since April, a good 6 months or so. I’ll take that as a win any day!

And yes, that’s given me another Xmas to celebrate – which is four Xmas’s since being pronounced Stage IV incurable, back in September 2020

I feel I can now share some history of prognosis discussions over the past few years:

In September 2020, the expected survival for my cancer of between 9-14 months. Skipped past that.

In Jan 2022 it was 50/50 I’d see the year out. Skipped past that one too!

In May 2023 it was just a matter of months. That took some getting around in my mind, but I reckon I’ve dodged this bullet also.

Because here we are at Xmas 2023 - I’m still doing okay and working on milestones for 2024 😊

Anyway – the clinical trial is stopped and won’t resume. I won’t be able to have any immunotherapy treatment in the future because of the serious risk of inflammation of one or more organs. So, as there’s currently no disease progression, I’m on observation only (no drug treatment), with CT scans until things change. Then it’ll be the 4th (and final) palliative chemotherapy – but hopefully not for a while yet.

The CT scans are still planned for every 9 weeks in London. It’s a relatively easy day trip by train. Last time I was on it, I noticed that both of the symbols on the Priority Seats could relate to me!

And on that humorous thought, it just remains for me – and on behalf of Samros and Nisa to wish all of you a very happy holiday, with a peaceful and prosperous New Year!

48 – Fighting Back

16 October 2023

Well, as a period in my life – I have to say the past month has been the most stressful I’ve ever experienced.

I mean, not much really shocks me medically any more. Three and a half years of cancer – interspersed with periods of Radiotherapy, Chemotherapy, Immunotherapy – experimental trial drugs, all kinds of scans and three PICC lines and a PEG feeding tube, there isn’t much that I can’t (or haven't) taken in my stride!

But this Pneumonitis and its potential of facing down death, really had me and Samros on the ropes.

Anyway – one month later – and very close crucial medical care, along with a specific drugs plan have made me feel that things are generally going in the right direction. Not out of the woods completely and there’s still a lot of treatment to be administered.

 

Inogen One G3 Portable Oxygen Concentrator

To help me get out and about, I’ve been issued with a portable oxygen concentrator.

This natty little unit, runs on a rechargeable battery and works by filtering the atmosphere to create oxygen-rich air by pulling surrounding air into the oxygen machine, compressing it, purifying it and removing nitrogen and other impurities.

The purified, oxygen-rich air is then delivered to the patient, at variable pluses of air, depending on the patient’s prescription, or effort and levels of breathlessness.

 

I can get between around two and four hours battery life, depending on effort expanded. I don’t usually need it operating when I’m at rest – just when on the move. It has a mains charger and a car charger to keep everything topped up.

I have to say that this is really helping with my mobility now. I wear it using a small backpack, which is designed for carrying the unit, and has compartments for the mains charger and spare bits and pieces.

I call it my Buzz Lightyear Flying Pack

A few weeks ago, I was limited to just a few metres of walking – by that I mean literally 10 m could leave me gasping for breath.

I have to say that this is really helping with my mobility now. I wear it using a small backpack, which is designed for carrying the unit, and has compartments for the mains charger and spare bits and pieces.

I call it my Buzz Lightyear Flying Pack

A few weeks ago, I was limited to just a few metres of walking – by that I mean literally 10 m could leave me gasping for breath,

Talking of mobility, it did get me out to a restaurant here in Gloucester, with my girls- managed a lovely picture – if I say so myself.

L-R: Nisa, Woz, Verity and Rachel

 

I’ll keep on with the positive thoughts. It’s what is getting me through this.

In fairness I’ve had so much love and wishes from my darling wife, my family and many amazing friends from all around the world. I would be letting too many people down, if I was any different.

Stay well people x

47 – Reaction to Immunotherapy

A couple of weeks ago – 12th September, to be precise, Samros and I were back in London for another round of treatment. Samros was with me, because a few days earlier – I had another unexplained collapse. Legs just went from under me – and I went down like a sack of spuds.

I decided, for the first time ever – I couldn’t trust myself to be unaccompanied for 3 days around London, in case of any other mishap. And I’m ever so glad we both went.

The day started off at hospital as any other. I had a scheduled CT scan first, followed by the blood sampling and finally the review meeting / consultation with the research / trial doctors.

And that’s when everything changed.

“Warren. We’ve just examined the CT scan you had an hour ago and I have to inform you, that your left (non cancerous) lung appears to be highly inflamed. We need to do more tests but the strong suspicion is you have Immune-Related Pheunomitis.”

Samros and I continued listening. “This can be life-threatening and potentially life-ending condition”

“We have to pause the trial immediately and begin oral high dose steroid and antibiotic treatments, to try and control this”.

Well of course the medics had our complete attention, although we were also in a daze, trying to believe the unbelievable.

Assessed as Grade 3 – adverse event Common Terminology Criteria for Adverse Events (CTCAE)

Pneumonitis is an ‘itis’ or inflammation. The pneumo bit is of course, related to the lungs. Other similar itis’ include hepatitis, colitis, meningitis or even dermatitis.

All can be triggered by Immunotherapy treatment actually over-stimulating our body’s own immune system, in such a way that the body begins to ‘attack’ itself. It’s a known, but fairly rare side effect of treat.

I felt like saying ‘so, it might be a bit serious huh?’ But no one was smiling.

And it’s about as serious as it gets. The next 4-6 weeks will range between ‘crucial and critical'. It all depends on whether the drugs treatment can overcome the inflation’ in which I’ll prevail, or – and let’s not beat around the bush – this condition could very well take me down.

Which is pretty ironic that a man that’s survived over three years of Stage 4 cancer without too many dramas, could succumb in such a highly regulated and closely observed clinical trial, to something probably immediately worse than my cancer.

Medically, when something like this happens, it’s called an Adverse Event and are graded 1-5. I’m currently graded 3. So, I’m being treated as an outpatient, but with close observations at home and taking oral drugs. Any regress, however slight - and I'll be hospitalised.

I’m also now hooked up to oxygen at home for most of the day. I have cylinders to take with me for any outside journeys, including for my now one or two trips to London for assessment each week.

My lovey Samros has had to reduce her working hours to weekends only, so she can be my carer during the week. At weekends, Nisa takes over that role, brilliantly! This agreement (taken with the medics) is about the only thing keeping me from being taken as an inpatient into the Royal Marsden in London.

Hospitalisation needs to be a last resort for me. If I get worse, it will become a Grade 4 Adverse Event, which is being treated by IV and strong immunosuppressive drugs, which all have their own complications.

That’s about the highest grade .

Well, there is a Grade 5, but patients never know. Because that is death.

So currently, it’s fair to say we’re getting by day by day. I don’t feel so bad, but mainly that’s the high does of steroids masking my ills.

 

Wozzer with the must (not) have accessory. Shown here with a plug-in oxygen condenser

Breathlessness is a serious problem though and if I try and do almost anything without my medical oxygen connected, I’m feeling poorly within seconds.

This is because I've very little lung capacity to make oxygen, which is then trnsferred, via my blood cells to muscles, throughout my body. So the reason for the falling has been explained, that my brain senses a lack of oxygen and immediately prioritises oxygen to the heart.

In order to do this, the brain will cut oxygen supply to limbs etc that don't need it at that precice moment. Therefore my collapses were caused by low oxygen to the brain, whice cut supply to my leg muscles - and down went Wozzer!

 

 

Still, I’m living to tell the tale – and hopefully will have more regular updates over the next weeks and months.

Only Wozzer could have something more serious than cancer 😉

Really serious.

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!

34-Calm before the storm

8 May 2022

It’s been a relatively hectic couple of weeks, and I’d been getting around to updating my blog, but well, I’ve been too busy enjoying myself.

We recently had a meetup of four generations of the Garber clan, from baby Miller (10 months) to Great Grams at four-score and and bit more 😉

Also, if I wasn’t feeling ill enough – I had the urge to go see a match at Old Trafford and my beloved team of mis-fits – Manchester United.

Brother Mike managed to get 3 tickets, so me, he and my lad Alex had a splendid boys-day (and night) of beers, burgers, footy and then more beers!

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…

31st 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