Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death
Prostate cancer (PCa) is the most common malignancy and second leading cause of cancer-related death amongst men in the Western World. The idea to utilise the patients’ immune system to fight tumours has revolutionized the field of anticancer therapy within the last decade. In fact, immunotherapeutic approaches have been triumphant in several highly immunogenic cancers, often called “hot tumours” (such as melanoma, renal carcinoma, and lung cancer, among others).
Vaccine-Based Treatment Modalities
Vaccination strategies are based on activation of the immune system against specific tumour-associated antigens (TAA), e.g., prostate-specific antigen (PSA), prostate-specific membrane antigen (PSMA), prostatic acid phosphatase (PAP), or prostate stem cell antigen (PSCA). Applied with co-stimulatory molecules or loaded on patients’ immune cells, vaccines are recognized by APC cells, processed, and presented with MHC class 1 molecules to CD8 + cells, turning them into cytotoxic T effector cells. Various vaccination approaches have been tested in PCa to date including cell-based vaccines, peptide vaccines, viral/bacterial vaccines, as well as DNA- or RNA-based vaccines.
Yesterday I had a consultation for assessment to be admitted onto a Clinical Trial for a new therapeutic medicine cancer vaccine, specifically for prostate cancer, OVM-200. A potential cure for advanced prostate cancer. Currently there is no cure for advanced prostate cancer, just palliative care. I have been ‘chasing’ this specific trial for close to four years, jumping thru many hoops to get to this point. So close I could taste it. I had built my hopes up, thinking I had done the hard part, now the payoff.
We met, via telephone, myself & Professor Fiona Thistlethwaite, the chief medical co-ordinator for the trial OVM- 200 at the Christie experimental medicine facility, Manchester. Professor Thistlethwaite told me, ‘so far, only three patients throughout the world have undergone the OVM-200 experimental treatment’ (I think she meant throughout the UK), she then informed me that I was not going to be the fourth. I was not eligible for this trial, basically as I am not (currently), ill enough, I do not meet the, strict, trial criteria.
I was genuinely surprised, shocked, deeply upset at this news. Pre-meeting, I was 90-100% sure I would get the go-ahead. Not getting it has completely thrown me off track, so much so that I felt I did not make the most of my pre-trial meeting, my time with Professor Thistlethwaite. Patients don’t often have an opportunity to discuss experimental ‘cancer therapy’ with a person of such prominence, somebody at the forefront of such important studies.
I spent the following day reflecting on our consultation, musing my next moves. I decided I must re-contact (email) Fiona. I believed I had failed yesterday to fully express my ‘feelings’, I felt I had more to ‘voice’ some of which that might be useful for her to hear? Thoughts, & views on trials, from a patient’s perspective.
What follows is a heartfelt patients voice to Fiona and several other, influential, Clinical Trials stakeholders, those who had supported and informed my four-year pursuit of the OVM-200 Trial.
Dear Fiona (et.al).
It is not often any cancer patient has an opportunity to communicate directly with an expert, someone of potentially enormous significance within a specific, often personal, treatment context. Somebody who can directly, (and positively), impact them and also millions of other cancer patients and their loved ones.
Thank you for taking the time, your valuable time, to meet, to consult with me yesterday, rather than just email me. I appreciate that it cannot be easy, telling people, the polar opposite of what they want to hear, e.g., informing them that they do not meet criteria to be included on a specific trial.
I was upset yesterday. Too upset to think clearly. As you know, I have been researching this specific trial for close to four years and I was, more than, hopeful of participating.
On reflection, I feel as though I did not make the most of our meeting yesterday, the opportunity for a meaningful discussion with you. To confer with somebody at the very core of such significant research is a rare and precious opportunity.
Please don’t think of this email as merely a negative reaction to my not being included and please don’t feel obliged to even reply. This is more about me than anything else. I have grown to realise that to ‘release’ any negativity is such a useful (therapeutic) process for me. To share my ‘feelings & thoughts,’ to not hang onto anything negative is essential for my overall, wellbeing.
My hopes are that my thoughts might also be a tiny bit useful for yourself and others. An honest, frank, patient focused perspective? If you could please spare a few minutes to fully read, it would mean so much to me.
As a patient, yes, I have a vested interest in the valuable work you do. I, undoubtedly, see things (more) from a specific (personal) perspective. However, please don’t think this email is (only) about me. I care deeply about the wider context, the implications of prostate cancer treatment for others both now and in the future.
I have a 40-year-old son, Aubrey, who, has his own 10-week-old son, Fennec. I have a 17-month-old grandson, Henderson, to my daughter Perri, living in Australia. Perri is 7 months pregnant with who will be my third grandson, due 25th December. By default, thru no fault of their own, as they are closely related to me, ‘My Boys’ all have an increased risk of developing Prostate Cancer.
My wish for this epic ‘voicing‘ email is that I might provide some useful context, food for thought (for you), if and when you are involved with devising further clinical trials. It might help you to consider, mine/their futures. A patient’s insight something, in addition to data and spreadsheets, a very much human perspective of terror, hope and future fear.
For all of the reasons you (we) disused yesterday; health & safety (risks of untried drugs on, relatively, ‘healthy‘ cancer patients), measurability (validity of results), relevance (scale and scope) etc. Clinical Trials are predominantly, exclusively?, administered to patients with advanced cancers. Strict criteria have to be established (and strictly adhered to) otherwise this lessens the relevance of (expensive) usually privately funded, research trials.
Without adhering to strict criteria there is a risk of making data irrelevant, therefore useless. This is a completely rational, necessary and understandable scientific process.
However, this does present medical contradictions. Within medicine we are told, the earlier the diagnosis, the earlier treatment can start, the better the prognosis? In many cases early intervention can mean the difference between life and death (cure, no-cure). This is especially the case with Prostate Cancer.
There might be a rationale for early intervention trials, for example, with OVM-200. A meaningful trial within earlier staged/less advanced prostate cancer sufferers to test the drug’s effectiveness at an earlier stage of their disease?
The problem with any last resort treatment is that by the time a subject meets the current selection criteria, is eligible (ill enough), for, potentially, life saving trials, their bodies are often ravaged., having already been thru; major surgery, radiotherapy, chemotherapy, several hormone treatments and possibly other life extending drugs/treatment, they are significantly, damaged. Quality of life has been impaired, so much, that any potentially lifesaving, last chance saloon treatments are too late.
Quality of life has been damaged beyond meaningful repair.
Yesterday, literally minutes before our meeting, I bumped into a work colleague, a brief, corridor conversation with Eddie, a talented musician/artist (if you are of a certain age, you might remember China Crisis)?
Eddie has prostate cancer; diagnosed approximately four months ago. He delayed his treatment so that he might tour the USA. On his return he underwent radical proctectomy surgery. Eddie had his first post-surgery meeting just two days ago, where he was informed of his, post operative, biopsies and PSA results.
He was jubilant, telling me his PSA is now just 0.003. Pretty much the same as mine back in 2016 when I was in the exact same situation (mine was 0.002).
I remember my first post-surgery consultation, like it was yesterday. My wife, like Eddie, was also jubilant, hearing the news that I had a, practically, zero PSA. However, I knew this was not not great news. I realised the genie was, now confirmed, out of the bottle. My cancer had advanced. Despite such a low PSA (0.002) I was now in a palliative care, (no cure at this current time), situation. My consultant did say this ‘no cure situation’ right at the end of our meeting. My wife, Gail, chose not to hear Mr Weston say that bit.
Just 5 years previously, such a low PSA would not have even been detectable? Many prostate cancer patients would have (then), believed they were cured……that is, sadly, until they were, in fact, not?
Imagine a world where Eddie, myself and An Other, any other, Peter, John, Jimmy (Eddie’s older brother), five middle aged men, five work colleagues, all with advanced prostate cancer.
Real people, humans, with families, hopes, dreams. Full of love, full of life, & full of hope. Imagine that their first treatment could be a (potential) cure not a NO CURE?
If only life was that simple?
We (you) are yet to find out how effective OVM-200 is. Early, positive (UK & USA OVM-100), results do not prove much about the longer term effects of OVM. OVM might be effective now but for how long? Plenty of previous drugs/treatments had similar early, optimistic, results. Cancer is a clever disease, it learns, it evolves, it fights back. Only time will tell if OVM-200 is, in fact, ‘the one’?
Real world Economics – Researching new treatments costs muti-millions of £’s, trials are expensive. Trial Funders, often (exclusively), private companies, pharmaceutical companies, ‘Big Pharma’ have their own, specific, (financial) obligations and agendas. However, from an NHS perspective, the cost of my treatment (so far) must be astronomical? Keeping me alive longer, costs?
From a purely financial viewpoint, an earlier cure, a potential early intervention should be more cost effective, although I am sure OVM-200 isn’t inexpensive? Maybe you (we) are already heading towards this aim? Once the treatment has been proven (effective) long-term?
Somewhere, further down the line, where those comparisons might be made? A more accurate assessment, then this ‘phase’ of trial, earlier intervention trials, might be possible? The wheels have to turn in sequence; however, this follows that the wheels turn slowly?
Not Sick Enough.
The psychology of Hope versus No Hope is all-powerful.
Cancer, living with cancer is difficult, for the patient but more so for those around you, especially those who love you. A positive attitude is significant. Waiting until your very last legs for any opportunity of a cure, is extremely difficult to LIVE with. Living minus (any) hope is not living.
John, another work colleague and cancer victim, has been absent from work for several weeks. I had bumped into him just prior to him having to take sick leave. He looked ill, gaunt, stressed. He didn’t say much at the time, clearly, he didn’t want to talk.
John, is of a similar age to myself, he commenced his treatment a couple of years before me. When he had heard about my cancer diagnosis, he sought me out, we work in higher education at, The Liverpool Institute for Performing Arts, Paul McCartney’s fame school. A dream job working with talented creatives of the future.
When we first met, John was fit and healthy looking, a strong man, bright, optimistic and fun. We talked cancer, we became ‘cancer buddies‘, supporting each other whenever, and however, we can.
John had opted for radiotherapy, not surgery, as his initial, primary treatment. His radiotherapy was performed out of the Christie, Manchester (Dr Logue). John’s daughter is a radiographer at the Christie. When I began campaigning for what was then, very much, experimental (in the field of prostate cancer), SABR, radiotherapy, John had recommended Dr Logue to me. When we met (over eight years ago), John considered himself cured, cancer free….
That is until he was not?
John has recently developed secondary cancer(s).
He is currently in year ten of his cancer treatment and he is very ill.
During yesterday’s consultation we discussed not being sick (ill) enough to be included in this as a positive? We also touched upon the significance of the aggressiveness of cancer, how everybody is different, statistics being irrelevant within such an individual prognosis, my cancer being, relatively, steady & stable.
I totally appreciate this; however, it is only true until it is no longer the case? When it turns, and with advanced prostate it invariably does, it is just a matter of when, it is like a switch? Sudden & often catastrophic.
Please don’t get me wrong, I am definitely a glass is half-full, optimistic, person (but also realistic). I am relentlessly proactive in reseaching any potentially possible, favourable treatments, literally every treatment I have undergone so far has been driven by my own ‘will’ to be treated in the best way…. so that I can survive.
Sadly, we live in difficult times, there are always limits to what can be achieved. It is not always possible to achieve, appropriate (necessary), treatments visavee care. There are excessive demands on ever scarcer resources.
Without many small battles I am convinced I would be in a much worse place. Sadly, I have found myself becoming THAT ‘squeaky wheel’ as I am not prepared to simply (believe), to convince myself I will be around for ever without pushing for as much as possible.
The reality is my clock is ticking louder than it was before I was diagnosed, and I will not confuse my mission to live by over-believing in miracles. I cannot afford that distraction, anything that might inhibit my ability to squeeze every last molecule of pleasure I have left of LIFE?
The current statistic of a 3% chance of 10 years life expectancy for men with advanced prostate cancer is my lowest benchmark. I will beat that stat. I will be one of those who prove the saying ‘Lies, Dam Lies and Statistics’.
Saying that, at the (exact) time I was told that I had prostate cancer, if I had been offered ‘ten years’ in that moment I would have bitten your hand off?
23rd December 2015 -3.30PM the day of our ‘works’ Christmas Doo.
Nothing extravagant, just five work colleagues, party hats, the usual, typically overcooked, conveyor belt, overpriced, Christmas meal. Followed by a few drinks and early(ish) home. I had volunteered to organise our office festivities this year. We had left it late, too late, so expectations weren’t high. At least it was an opportunity to wear a posh suit or a nice frock.
I received a call at work from my GP (receptionist) asking me to come into the surgery on my way home. I was slightly surprised but not overly concerned. I had undergone a comprehensive series of ‘tests’, two/three weeks previous. If there was anything ‘wrong’ they would have contacted me before now? Surely?
23rd December 5.30PM GP Surgery
‘Hello Dr Brooks, hello Mr Reynolds….’
Rewind back in time a bit….
Man Health. Carol, my older (and only) sister had been badgering me for at least 12 months to undergo specific health check-up’s.
Her husband, Eric had recently died from bowel cancer. Their daughter, Emma (my niece), had since discovered substantial pollups in her bowel and was undergoing a series of biopsies followed by surgery. Her consultant informed her that all close relatives (myself) should be tested immediately and afterwards, regularly screened for life.
Possibly good timing?
I had been experiencing common, male, age-related, bladder ‘issues’ as in – sleep disruption to urinate, latchkey anxiety, becoming more frequent and some erectile dysfunctionality. I had never for a second considered prostate cancer.
I am not born from great stock. Both of my parents had died young. My mum aged only 46. My sister is in (long term) remission for breast cancer. I also have other underlying health conditions, Diabetes & hypertension, 21st century Life and Living.
Early December, after reporting my niece’s consultants (written) advice to my GP a comprehensive round of checks and tests were agreed. My GP suggested that ‘at my age’ (then 56) that we should include (my first) ‘prostate condition’ test.
I instantly presumed this meant a prostate examination via my anal passage. I was pleasantly surprised that it was a simple (PSA) blood test. I walked straight from the surgery to an adjacent phlebotomy clinic. Tests completed.
If there was a problem, they would have notified me within a few days, a week tops? Right? After a week or so I was no-longer anxious or concerned.
23rd December 2015 5.30PM –
‘Hello Dr Brooks, hello Mr Reynolds….’
‘The good news is that your blah blah blah (bowel) test results are clear….but, there is a problem with your prostate. Based upon your PSA level you probably have prostate cancer. I am going to need to perform an internal rectum examination to confirm, is that ok’?
In my Mind – Well No!
Voice – Yes of course.
Mind racing. BP bursting. Sweating. Flushed ….
Have I been to the toilet today? Did I have a shit?
Did I shower afterwards or before?
Considering the situation and the context, (he is a doctor, this is his job, this is not a man you just ‘talk cars’ with, he is a professional), However, in reality, in the moment? Good luck with being rationale.
Brace. Brace. Brace… and done. Over.
Well, that didn’t take long at all. Clearly, I am not going to bleed-out, I will not be physically scarred for life! Psychologically? A man you have known for over thirty years, almost, but not quite, a ‘mate’? Definitely not a stranger? Has just stuck his ‘fat’ finger up your bum? Stupid? Absolutely.
But also, so True and the major factor and reason so many men do not get early (enough) prostate diagnosis?
And, how come I had never noticed before, how fat Dr Brookes fingers are?
Seconds later – things take a turn for the worse.
There was no ‘you had better sit down’,
no – ‘do you want a cup of tea. a glass of water’?
No, ‘do you want to call someone, your wife maybe’?
No, kissing me first….No foreplay, just straight to the ruff sex.
Dr Brookes, is an old school doctor, formal, straight to the point……
‘Based upon your PSA test results and rectal examination you have prostate cancer’. In a matter of sixty or so, unpleasant, seconds we have moved from ‘Amber’ you probably have to ‘Red‘, you have cancer.
I could tell Dr Brooks was shaken, sorry for me, almost apologetically (like it was his fault I had prostate cancer? Apologetic for my dreadful situation. I felt I should re-assure him. ‘It’s not your fault Dr Brooks’? I didn’t (I couldn’t). Afterwards, I wondered how many others he had ‘given the bad news to’ that day? That week? ….Ever?
Truthfully, the whole thing, the big reveal, could (should) have went better. I suspect that his feelings, his emotions had inhibited his ability to manage the situation more empathetically. Our emotions were out of control.
Unknown Territory
I cannot recall much else that was said. I know it wasn’t much…., something about referring me to an oncologist (urologist), after Christmas. Then just Blind Terror. Once he had said I had the ‘big C’ I literally had no clue what to say or do. I attempted to talk mumbling something indiscernible …… I think I shook his hand, I noticed my feet, my legs, shuffling involuntarily towards the consultation room door.
TERROR
Terror
Terror
I continued to walk, 20 or so meters towards the exit to the carpark. It felt like an out of body experience. Detached. Odd. Almost like ‘this’ wasn’t happening to me, it was happening to that ‘other’ John. Not me, the John who has cancer.
Automatic doors. No. You need to push the blue button. The big blue button that I had never noticed before despite going in and out of those doors maybe 100 times?
A cold rush of fresh air, welcome cold air, a huge, cold, much needed slap across my face.
It was a stunning, bright, December, early winters evening, cold as fuck, fresh, clear sky’s with what looked like millions and millions of unusually bright, stars.
Ecstasy
I looked up and around me. It hit me. A huge unexpected rush.
Everything looked enhanced, vibrant, fucking amazing!
I felt ALIVE. Every sinew, every atom, every cell of my body felt alive.
For a few seconds I was more alive than I have ever been.
Then I was alone.
More alone than I have ever been.
I wept. Sobbing, alone.
I spent a lot of time thinking about dying, it was hard not to (for me). I don’t think about dying when I have Hope in my life. I learned that it is not that useful to think about it too much?
Truth is, dying isn’t that important to me anymore, LIVING is.
Dying (if you let it) gets in the way of living?
Living is important to me, making the most of Living, squeezing as much as I can out of a now, limited, life. I do not have time to spare, to waste on dying.
I am very lucky, at 63 I have lived. I have loved and been loved in return. When diagnosed I had no grandchildren with none on the horizon, I now have two and by the end of the year I will have three! I still have plenty of loving to give.
Despite Covid I have (will) have opportunities to meet them all (again), to hold them, to smell them, to tell them ‘Dad jokes’, to Love them. I am incurably in love with living, I want to live some more, I want to live forever. I cannot just be ‘dying to live?’ That is why this trial (any trial, any Hope) was/is so important.
Hope is the key to life.
I have learnt many things since I found out I had incurable prostate cancer. Some things which I probably would never have considered or at least not to any meaningful level. Things that might be worth sharing (mainly) with the millions of others who will find themselves in the same boat as myself today, tomorrow, the next day ….. and the next.
Since starting this process, via my own research, I have discovered much, practical advice that I share, that might help others who have their own interest, their own connections with prostate cancer. Advice, knowledge, I wish I had known at the beginning of my own prostate journey….
What has ANY of this got to do with you?
You are important, doctors, scientists, researchers are literally our future. Maybe reading about me and Eddie and John, our human (patient) stories, possibly a context that you don’t always, or often get to experience or are exposed to? What I have learnt, how ‘we’ feel, might help you, if not now, in the future? If not you, somebody close to you, someone you care about?
It will certainly help me to believe it might.
Thanks for reading.
Peace x
Dying to Live 