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)
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!
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 😊
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:
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
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
1st December 2021
Well, it was always coming, but a bit of a shock just the same. I’ve had a nagging pain in my back for a good couple of months or so. Not a lower back muscular pain and certainly not a sports injury!
I flagged this up at my recent meeting with my Oncologist – the ever-professional Dr Warren Grant. He did say that secondary tumours in the lung sometimes show few symptoms and for those that do, a low ‘nagging’ pain is not uncommon.
So, definitely time for a new CT scan to see what’s developed since my previous scan back in May, when the tumours were still relatively small.
The results of the scan came back last week and yep, it was a bit of a shock – to me, at least.
|
Metastatic (secondary) tumour development in right lung |
||||
| Jan 2021 | May 2021 | Nov 2021 | About the size of… | |
| Tom | 17mm | 20mm | 55mm | Snooker / Pool ball |
| Dick | 14mm | 15mm | 36mm | Ping Pong / Squash ball |
| Harry | 7mm | 11mm | 29mm | Lollypop candy |
I say ‘to me’ because Dr Wozzer indicated that these sizes are not too bad, when considering the overall size of a lung.
“Oh really?” I thought.
Anyway, he decided that now is a good time to begin treatments. The plan is for some ‘palliative radiotherapy’ now and most likely to follow with some cycles of chemotherapy in the new year.
So a couple of days, ago I was back to the Oncology Centre in Cheltenham, for a pre-treatment scan and some body mark-up.
Felt a bit strange (and disappointing) to be walking back in there nearly 18 months after the throat radiotherapy.
In another respect, a feeling of familiarity: The same receptionist greeted me with a ‘Hi Warren’ - obviously remembering me (or at least remembering the tin of biscuits I left back then).
And the radiologist doing the prep work was the ever-friendly William – who is always bright and cheerful and became a good ‘mate’ during the hard weeks of treatment back in May / June 2020.
Will took me through the procedure which was a quick scan to see the tumour locations and then a tiny ink tattoo on my chest, which defines the ‘reference point’ that will be used when aiming the radiation treatment.
I’ve known all year this treatment was coming – and I’m ever so glad that Dr Grant held off until mow. It’s allowed me a good summer and autumn to get around and see family and friends.
Equally I’m now relieved that treatment is commencing. Larry the Lump was well beaten – and remains so.
I also know that Larry's sons - Tommy the Tumour, Dick and Harry have been gearing up all year for a fight and I’ll be taking them on next week, with the first bout of palliative radiotherapy.
I'm scheduled for five treatments (known as 'fractions') on w/c 6th December.
More from me soon after x
4th May 2020
Nope – that’s not a tennis result and certainly not the fight result.
It was just me and my own thoughts up and out of bed at 5.30 am this morning. I couldn’t really get sleep last night – sat up watching telly till around 1.30 – and here I am on the long walk from the dressing room to the ring.
Yep, the crowds are cheering me and shouting amazing notes of support. My team in the corner are all well experienced with me 100%, so no doubts there – none.
But jeez, this has now hit me – here, right now for the first time really. A proper life-changing day.
I’m going to a specialist unit for cancer treatment – my cancer. Not to visit mates of mine that have been through this in the past.
Of course, all the prior month build-up, tests, procedures, doctors meetings – blog posts and musing have been published on line. People, friends, acquaintances from my wonderings around the world have made contact – some I haven’t been in touch with, in years. It’s a warm feeling.
But now today – it’s real.
I’m not scared, my faith in the medics and family is all the trust I need – but I still get emotional and have a little cry to myself.
But I’m not feeling sorry for myself either – I fear more for my dearest and closest that need my support too. I’m a husband and father and a step-father, and no matter what’s happened along the way – there are responsibilities that are always there.
Cancer. It’s such an emotive word.
But really in this day and age, the knowledge, drugs, technology and care are so much more advanced. The odds are on my side. Let’s face it – we all go in the end, one way or another.
I used to drive 35,000 miles a year over 12 years in one job. More chance of a fatal on the M6 or the foggy M62, I used to reckon.
Crossing Monivong Boulevard by Central Market in Phnom Penh was another life-threatening act – every time!
And perhaps the way I always envisaged (and nearly did) die, was in a real sleazy bar in downtown Saigon. Now that would have been cool…
So that’s all off my chest and I’m feeling much better for it.
Climbing up into the ring now. Just hope I don’t trip over the bloody ropes and knock myself out, before I throw a punch 😉
Love to you all x
30th April 2020
I’m back in Gloucester Royal for the final job to be done, prior to treatment commencing.
I was booked in by my care team. A couple of days earlier, Laura my specialist dietician called me to outline the what and why.
The ‘what’ is a PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach. PEG allows nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth.
The why is because I’ll have to take fluid feed directly into my stomach, for the times when I’m unable to eat by mouth.
Laura continues… ‘I don’t want you losing weight, Warren, you must maintain weight to close a possible to where you are now’
‘Do you have the correct notes with my name on? I ask…
‘ I’m 20 stones as it is and was hoping this condition of mine might knock a few more off, without much effort from me’ I’ll be happy around 100kg and a six-pack. Well, even a 12 pack at a push.
No way she says – I want you on blue top milk (full fat) and good protein, carbs and all.
I think this is going to be a bigger struggle than fighting the cancer 🙁
Anyway, I digressed.
So I’m under the care of Dr Li for this procedure just done under sedation. Pop the tube down the throat all the way to the stomach. Then poke a hole into the stomach from the outside, pull through and tie in a nice bow. Or something like that 😉
The way to a mans’s heart…
That’s perfect for me – my lovely wife Samros certainly knows how feed me with amazing tastes she conjures up, but Peggy to the peg might just have the edge when the going gets a bit tough.
Friday 1st May 2020
I get a phone call from the Radiology team. They can program my treatment earlier than expected – can I came in to Cheltenham Oncology on Monday 4th for my first treatment.
Yep – I’m up and ready for this – just bring Larry the Lump on. He’s in for a shock when he sees the team in my corner…
27th April 2020
It’s my first visit to the Oncology centre in Cheltenham General Hospital.
Around 20 minutes drive from home. It’s good to get out on the road during the lockdown
I’m being fitted with my mask, which will be used for all the radiotherapy sessions. Met in the reception by a very amiable and likeable chap – Liam. He explains the process to me.
And it’s amazing!..
Today’s session is purely mechanical and analytical. Preparing for the treatment. There’s a CAT scanner which today is just being used for measurement analysis (not diagnosis), a steel bed which is the same dimensions as used for the actual radio LINAC treatment and a very special perforated polymer sheet.
The polymer sheet is soaking in warm water and Liam positions me flat on my back, with between a headrest and what I’d describe as a bum stop. So that fixes my line.
The the pliable polymer sheet is places over my head and shoulders and still being pliable, is fixed by clips to the steel bed. So that will be my X and Y position for all future scans.
But now comes the magic – I have to lay perfectly still for around 15 minutes or so. In this time, as the polymer is cooling, it shrinks completely tight against my head and neck. A bit like vacuum forming, but without the vacuum suction.
Now the radiologist team can place marks on the mask, line it with lasers (these can be seen in the photo) so that I’m perfectly positioned and check against this reference scan, throughout the 30 sessions of radiology that I’ll have.
As the mask will be a companion of mine throughout and a close a copy as of me as anyone could see, it needed a name.
So please let me introduce…
Big Manny – the Mask
🙂
21st April 2020
I meet my next specialist – and I guess who will become the most important person for me for a while. I’m now firmly under the care and attention of the Oncologist who will be leading the team taking care of me. Although at that time I didn’t realise what an amazing team it is.
Anyway – he introduces himself – Dr Warren Grant.
Another Wozzer I thought, that’s an amazing great omen 🙂 I’m sure he felt the same about his new patient…
He has the confident but calming style of confirming what is what. ‘You know you have throat cancer Warren, and the good news is there’s no spread away from the throat. There were some patches seen on a lung but the MRI scan confirmed they are nothing to worry about – although nothing will be left to chance and we’ll keep an eye on that going forward’.
And so, it’s down to work. No messing or waffling. The treatment is fairly aggressive he says – six weeks of radiotherapy x 5 days a week and additionally two cycles of chemotherapy on weeks 1 and 4.
Honestly that left me reeling a bit. I was expecting radio only and had already researched some that reckon it’s enough on its own.
There’s good reason though. He continues… ‘This particular type of cancer has a good possibility of eradication, with a human survival rate of around 75% after 5 years. Of course I’ll take that – and try and increase the percentage.
The cancer has an official name: Squamous cell carcinoma, left oropharynx, with TNM staging of T3 N2 M0 HPV16 positive.
The explainer below is courtesy of Cancer Research UK
TNM stands for Tumour, Node, Metastasis. This system describes the size of the initial cancer (the primary tumour), whether the cancer has spread to the lymph nodes, and whether it has spread to a different part of the body (metastasised). The system uses letters and numbers to describe the cancer:
• T refers to the size of the cancer and how far it has spread into nearby tissue – it can be 1, 2, 3 or 4, with 1 being small and 4 large
• N refers to whether the cancer has spread to the lymph nodes – it can be between 0 (no lymph nodes containing cancer cells) and 3 (lots of lymph nodes containing cancer cells)
• M refers to whether the cancer has spread to another part of the body – it can either be 0 (the cancer hasn’t spread) or 1 (the cancer has spread)
From this it’s clear the cancer has been developing for a while (T3), but it’s never given me any indication, save the mild sore throat on and off over a couple of months. The main thing Vicki advised me later is M0 means no spread to other areas of the body.
Dr Grant continues… ‘We’ll being treatment in around 3 weeks, say mid-June and finish at the end of July. On average expect the treatment to intensify as it progresses and then some months of discomfort, but hopefully feeling better towards the autumn time’.
Before treatment begins, there’s more to be done and more of the team assigned to me, make initial contact:
Speech Therapist; Dietician; Radiology team for Mask making and Endoscopy team for inserting a feeding tube. And Lead Nurse Vicky is never far away.
Just amazing – and I don’t know half of it yet, except this Gloucestershire NHS Foundation Trust is an extremely well-oiled Rolls Royce of a machine. Every single person I’ve been in contact with – or staff that have phoned me are not just professional, but very personable – without exception.
It’s easy to say this, but I really mean it that I’m feeling pretty good about my condition – because I have total faith in this highly experienced team, who seem to give me the impression that I’m their only patient 🙂
And lets not forget we’re in the middle of a pandemic, causing the UK’s greatest ever drain on NHS resources right now.
18th April 2020
It’s around week 4 of the UK lockdown. Feels like month 4 for many, but for Wozzer there’s lots to prepare for. And of course if there’s anyone nerdy enough to sit researching things, it is he!
I’ll need online deliveries of shopping for sure. A friend told me that Sainsbury’s were prioritising the ‘old and sick’ Well, really I didn’t think I was either – but I might be both.
Sure enough, on the Sainsbury’s website, just register with my email and lo and behold… Sorry, came the reply – you’re not on the Coronavirus Vulnerable list.
OMG – but I’m old and sick.
So, a bit more web research brought me here at the official government website to register
Half a dozen or so cancer types listed… cancer with chemo (nope); cancer of the blood (nope); radical radiotherapy (definitely not it’s in Gloucestershire, so hardly radical); stem cell (nope).
Bummer, my tonsil cancer doesn’t qualify.
Is there another way? I hunt a bit more and check about Aldi delivery. No problems or restrictions for Tonsil cancer listed, just pay £23.99 online and have a box of food delivered.
Simple as. Save money – especially for budget cancer patients 🙂