HPV16+

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.

47 – On Trials at Chelsea

9th September 2023

Yes, beating the transfer deadline by just a few hours, Wozzer can reveal that he’s on a free transfer from Cheltenham Town to Chelsea. As a lifelong Manchester United fan, this took some serious thinking about 😉

Well, actually it’s really that I’ve transferred from Cheltenham Oncology Centre, to the Royal Marsden Hospital, which is just along the Fulham Road from Chelsea FC, but that sounded better!

Even though I’m one of the few people Chelsea haven’t signed recently, I can reveal there were some preliminary discussions with my agents about playing on the Outside Right, but they insisted I was better positioned Right Outside.

Anyways, back to reality. Here we are some 7 weeks into the clinical trial and so far, so good. The whole experience at The Royal Marsden has been outstanding – everyone is very organised; treatment appointment times are met and information flow from medics to patient is always up to date.

After the issue with the canula and leaking of contrast dye for the CT scan (described in my previous post) and the amount of blood sampling required going forward, I’ve been fitted with another PICC line.

While it has its inconveniences (weekly flushing and dressing changes) and keeping it dry with a special sleeve when showering, it’s so much better than stabbing my poor old veins, that have had over 3 years of needles and cause quite a few problems.

In terms of treatments – currently I have two drugs. They are both known as Immunotherapy drugs and intended to train my body to better recognise and attack the cancerous tumours, without too many harsh side effects, as in generally the case with say, chemotherapy.

Sampling blood is so easy and painless, with a PICC line

That’s not to say I get off scot-free. One of the drugs is a powerful vaccine given by injection into either upper arms (one jab in each) or thighs (again one in each). I have to say it hurts like hell for a few minutes, then subsides over 1-2 weeks- but with inflammation and pain around the injection sites.

This is definitely grown-up stuff, much more painful as any normal flu or covid jab! The other drug is intravenous, so that goes through my PICC line and thankfully painless.

The reason for using two drugs is - to my understanding – that neither is particularly strong enough to deal with the tumours individually – and the trial is to determine if the combination of two give a better result than the individual parts. Kind of 1+1=3

Currently, it’s too early to say if the trial drugs are working – this will mostly be determined by CT scans. One is due on 12th September, which MAY give an initial indication – but my guess is the following one around mid-November will have more meaningful results.

I find it best not to speculate on possible results and scenarios– just take it as comes!

Ongoing monitoring of my general wellbeing is done each visit by way of blood-sampling (a lot of blood) and also vital signs checking and interview with the trial doctors.

All of these tubes are filled. That must be almost an armful 😉

This (and any scans etc) usually take place on the first day of hospital visit and then drug treatments are on the next day. This is now settling into a pattern of every 3 weeks. I stay overnight in a local hotel near the hospital. The drugs companies cover my reasonable hotel costs and other expenses.

So, for now – even though it’s near Chelsea, I’m pretty happy with how things are going.
More in a few weeks – or when I have updated news.

Until then, stay safe and well 🙂

 

 

 

46 – Preparing for a Clinical Trial

24th July 2023

Bit by bit, I’m getting there.

I previously mentioned the mishap at Gloucester Railway station on 22nd June, when I collapsed on my way to probably my most important meeting of this year – a pre-trial consultation to see if I qualify for the screening process and subsequent entry to a clinical trial, to test some potential new cancer treatments.

And so, a week later on 29th June, I did make it to the meeting with Professor Harrington and a couple of his research team. My eldest daughter Rachel came with me, ostensibly to take notes – but in reality, to catch me if I decided to keel over again.

Thankfully I stayed on my feet – unaided

Impressive Entrance photo credit - Amanda Slater

The consultation started exactly on time at The Royal Marsden Hospital, in London. No hanging about, which can happen and just adds to stress levels.

Prof Harrington is clearly a leader in his field, but had a very easy-going manner about how he interviewed me. And we went through a lot, from my cancer history to prior lifestyle, current medications and a physical checkup, Then the meeting continued with a detailed explanation of the proposed clinical trial and allowed me to work through my list of questions, which were either answered there and then, or certainly in the 20+ page of trial description, treatment scheduling that I was given.

Everything looked good to me, but I wasn’t permitted to say ‘yes’ there and then. I had to consider the trial paperwork and then return to hospital a few days later (4th July), to initial and sign consent in person.

Very professional and correct.

Once the consent was signed, we started again on a full physical examination, blood samples taken, ECG and finally a ‘baseline’ CT scan with contrast was undertaken. Baseline means a reference scan - so that all future scans and imaging of my tumours can be compared back to this original.

CT with contrast is actually two scans. The first pass in the scanner is without the dye, then a small pump injects the dye into a vein and a second pass in the scanner is done. The dye helps to improve the images and highlight cancerous areas within the body.

Scanner with contrast dye pump (top left)  Sample Image - not me 😉

Unfortunately, when injecting the contrast dye into my veins, the dye leaked out into the tissues under my skin, this is called ‘extravasation’. It’s not serious, but pretty uncomfortable for a few hours – and then a couple days for the swelling to subside.

Swollen tissue from dye extravasation

So, this meant another visit on 7th July to re-scan me. Thankfully this went well, and all of my screening interviews / test results / scans etc have been sent to the drug company that is behind this particular trial for the final decision on my suitability to enter the trial.

I received positive confirmation a week or so ago and this coming week, I begin treatments in what is honestly something with an unknown outcome, but very much worth doing in any case.

I have a full schedule, with various treatments and tests on days 1, 8, 29, 50 and 71. Following this there are subsequent treatment intervals of around 3 weeks, with comparative CT scans every nine weeks.

All in all then, while it's been a pretty hectic month for me with a few trips to London, I'm very glad to be on this trial and starting soon.

But also I'm pragmatic enough to know and understand that a clinical trial is just that - a trial.

And it's primarily in place to test the drug(s). The patients on a trial I suppose, always hope this might just be the 'miracle drug'. Realistically though. it'll simply provide data and other information for future development of cancer treatments.

But for me, right now - after having two longish lines of treatment without success and being faced with a third (and probably final) course of chemotherapy, this trial allows me an additional line, while being extremely well looked after.

And that can’t be bad at all 🙂

 

7-Getting down to business

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.