Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death
Cancer Vaccines, the potential for the prevention of ‘Spreading of Cancer Cells’ are a hot topic at the moment. It seems like every week there is another newspaper and or media article on the latest, potential, miracle cure for cancer patients, a viable vaccine that prevents cancer Metastases.
Cancer Vaccines [of many kinds] have been in development for some time, with varying degrees of success. So far, ‘most’ are only available, [exclusively], via ‘Clinical Trials’.
In order to enact an experimental treatment safely from development thru to mainstream use, they have to be rigorously, scrutinised. Extensive {expensive) clinical trials have to take place. This process usually takes a minimum of five to ten years. I have been trying to access a promising, therapeutic cancer vaccine trial for over four years now. Next week I will have [another] consultation for a trial inclusion [to discuss my eligibility for a trial] via UNIVERSITY COLLEGE LONDON HOSPITAL (UCLH).
Just last week, a close friend and a fellow, Everton FC, Sufferer, during ‘the Game’, asked me a question about Cancer Vaccines, ‘you mean, like flu, or Covid’? How does that work then? If you already have cancer, what use is a vaccine to you (to prevent you from getting cancer)?
I wasn’t, exactly, sure what the answer was, so I did some research.
Metastasisation – the spreading of cancer cells from the primary tumour into surrounding body tissues and organs – is the leading cause of death in cancer patients. With Prostate Cancer, early diagnosis and treatment, prior to the cancer spreading outside of the prostate gland can mean a 50% chance of cure, for example from surgery or radiation therapy. A cancer vaccine cannot prevent the contracting of cancer, however, it can prevent, or significantly slow down the spread of cancer to other parts of the body i.e. the lungs, bones or brain.
Cancer Vaccines are a potential way to stop these cancer cells from entering a person’s blood and then spreading around the body. Scientists from Israel are working to produce the world’s first preventative drug to help stop tumours that cause secondary cancer, as reported by The Times of Israel.
The active ingredient in the drug has shown 90 per cent effectiveness when studied on mice. Current drugs against cancer have worked by reducing the growth of the primary tumour but, until now, no treatment has been available to eradicate metastatic [advanced] cancer. In my case, prostate cancer, once the cancer has spread outside of the prostate [metastasised] there is currently no cure with a (maximum) prognosis of a (3%) chance of a ten year, or over, survival.
The research team at Bar Ilan University has produced a peptide which stops cancer cells from entering the blood and halting any movement to other body parts. The research was published in a peer-reviewed study and has been successfully shown to help prevent metastasis in mice. It could mean the drug can be used as a preventative measure when it comes to stopping the spread of diseased cells which cause secondary cancer.
Stopping the spread of secondary tumours
Currently, prostate cancer spread is, treated, systemically, [palliatively] with radiation therapy (including several radiation treatment options) & hormone therapy. These treatments are often offered simultaneously. Usually, as patients become hormone therapy resistant chemotherapy follows. Hormone therapy helps to slow down the spread of prostate cancer, ‘chemo’ helps to eradicate cancer cells as much as possible. However, chemo has little effect on stopping cancer cells from rapidly increasing and chemo also has traumatic impact on healthy cells, often leaving severe, collateral, damage in its wake.
An Israeli research team believes this new peptide – a chain of amino acids – will be successful on all solid tumours. According to the efficacy rate, mice with breast cancer who received the peptide were at least 90 per cent less likely than the control group to develop secondary tumours.
Professor Jordan Chill, a co-author of the peptide paper, said of this new discovery: “We think this may impede metastasis by stopping the invadopodia from activating, I anticipate it might be used with chemotherapy or other cancer-cell-killing therapies,” he added. Invadopodia are actin-rich structures that are present at the basal surfaces of cells that are capable of crossing extracellular barriers, such as cancer cells.
Clinical (medical) trials are (exclusively)? reserved for very ill patients with advanced cancers. Clinical Trials are often only accessible as last chance saloon options, for patients who have exhausted all other treatment avenues. I have posted about this topic before. Largely due to strict eligibility criteria (designed to ensure maximum credibility of data) trials can be tricky to navigate & more or less impossible for ‘less ill‘ cancer patients.
To find out about available trials, then to try to access them is time consuming and frustrating (with many dead ends). So far for me, Trials are exclusively a process initiated by the patient. At different stages of my cancer treatment (diagnosis, surgery, post- surgery, radiation therapy), I have had seven cancer consultants. However, despite my clear enthusiasm, none of my cancer consultants have [ever] offered any information or advice in regard to clinical trials (maybe this will happen in the future as my cancer progresses & I am more ill)? A clinical trial is my only realistic chance of survival.
There appears to be a general reluctance from within the medical profession to consider trials as an achievable option until a patient is viewed as being ‘sick enough’? This may come from the ‘sponsors’ (funders of such trials), who derive the strict admission criteria and provide the cash for the trials to take place.
Getting accepted onto a trial?
Easier said than done. The first hurdle is research. Researching the shit out of; available scientific & medical research data bases, media articles, medical journals & credible, published ‘papers’, hunting down & discovering suitable trials under your own steam.
Ok if you can, are capable of accessing research? I would suggest that eliminated around seventy-five percent of the (male) prostate cancer populous.
The second hurdle is – discussing what you find with an expert (your consultant, a specialist nurse). Good luck with that! Unless you are a private patient the only access that you will have to your NHS consultant [any NHS consultant] is via their NHS secretary. You will not have any direct email access to any NHS consultant. The failsafe way is to write to them, via their hospital (clinic) address.
Top tip, make friends with your NHS consultants secretary, or at least, try not to piss them off? Try to do the same with your consultant(s), difficult with so little access. Make them (all) care about you, make them want to help you?
If all else fails and you are desperate to get in touch i.e. to request a referral for a specific trial you have identified? A trick I have learned is, contact your consultants via their private secretary or private clinic. Use this option wisely, as a last resort. You do not want to piss anybody off [not too much anyway], as you will need them again in the future? But, we are talking about life and death, your life? If you have to become that squeaky wheel? Then, so be it, ‘fuck ’em’!
The third hurdle [linked closely to hurdle two], is actually convincing a consultant to provide a referral. To even be considered for a trial you have to be referred by your consultant (oncologist). Considering that you cannot, easily, contact them [usually reserved to within scheduled consultation appointments] this is another barrier.
The fourth hurdle – [NHS] consultants are reluctant to provide referrals. They are also reluctant to spend any time to consider any information you provide for them in order for them to make a referral on your behalf? [they don’t have time to read etc.]?
If a consultant refers an NHS patient, especially if this referral involves treatment outside of the patients Primary Care Trust (geographical area), referred to another PCT, there are consequences. There may be a question of financial accountability? They may have to answer for this decision. Bureaucracy and accountability, inevitably, puts consultants off, especially as, experience tells them your chances of success is unlikely. Most consultants do not want an additional, unnecessary, (pointless) layer of shit in their, busy, professional lives.
As an NHS cancer patient and UK tax, NIC, payer, of 63 years I have invested many thousands of hard earned £’s into my own and others, health care. On year seven of a maximum ten, someone who will almost certainly never draw down a penny from my pension. I have huge difficulty with a health care system seemingly exclusively based upon finance. A deliberately, underfunded, under resourced, health care system, where treatment is skewered, unfairly biased, depending upon a patients postcode.
The current, politically motivated erosion and undermining of the NHS suggests an irreversible trajectory towards the end of our, free at the point of access, health care system. Substituted by a profit making system, reserved, only for those who can pay at the point of access. A fully privatised, answering only to share holders, USA style heath care provision.
The contradictions of Trial Criteria.
I have even more difficulty with ‘Big Pharma’ trial criteria, which seems to go against all other medical advise & evidence. Early diagnosis, the earlier the treatment, the better? Early intervention can literally mean the difference between life and death (cure, no-cure), this is especially the case with Prostate Cancer. I can see an [obvious] rationale for clinical trials to test potential cures, within less advanced prostate cancer patients.
I get it, the requirement for strict criteria have to be adhered to, otherwise it lessens the relevance of (expensive) research. Researching, developing and testing new treatments costs multi-millions $’s. Funders, referred to as sponsors, often (exclusively), private companies, have financial motivations & obligations [to greedy shareholders]? From an NHS perspective, a cash-cow customer of Big Pharma (their biggest customer)? The cost of my treatment (so far) must be astronomical? Keeping me alive (longer), costs & therefore pays? Why change this model? Earlier cure less treatment, less profit?
From a purely financial perspective, an early (potential cure) could be significantly more cost effective (for the NHS)? However, this does not consider the economic motivations of private organisations, ‘Big Pharma’ who sponsor trials, fund the development of new treatments, they also profit from every stage of ANY and ALL previous and current treatments.
Big Pharma, would have nothing to gain, would lose (decrease their overall profits) by introducing potential cures for cancers at earlier stages? It costs to keep me alive, it would probably cost less if I am cured (earlier)? Cancer treatment is big business.
From a patients perspective, an inherent problem with last resort treatments (Clinical Trials) is that by the time a patient might be ‘sick enough’, their body, having already been subjected to – major surgery, multiple radiation therapies, multiple chemotherapies, multiple hormone treatments, other life extending drugs/treatments, is already significantly damaged. Future Quality of life has already been significantly impaired, this is particularly critical with older patients, despite any potential benefits that new, experimental, treatments might offer, previous treatments have already caused substantial, collateral damage. Patients are often beyond repair by the time they are able to visit the garage!
Trial inclusion (eligibility) – Unfortunately, you are ‘Not Sick Enough’
The psychology of Hope and No hope is incredibly powerful. A positive attitude living (dying)? with cancer is significant when approaching further treatment. Knowing that there is no choice, having to wait to be ‘on your very last legs’, for the opportunity of a potential cure trial, is hard to come to terms with, to LIVE with.
John, a work colleague, and prostate cancer patient has been absent from work for several weeks. I had bumped into him just prior to Christmas. He looked, gaunt, stressed, ill. He didn’t say much at the time, clearly, he didn’t feel upto talking even though we are cancer buddies.
John, (of a similar age to myself), commenced his treatment a couple of years prior to me. When I first met with John, despite two years of, active, cancer treatment, he was fit, healthy looking, strong… a bright, healthy, optimistic and sociable bloke. We talked cancer. He was trying to assure me ‘it will be alright’ within my own recent diagnosis.
Due to an, up until then, undiscovered heart condition, John opted for radiation therapy [not surgery] as his primary treatment. When we first met (sevenish years ago), John considered himself cured, cancer free….he told me so, very much, as encouragement, to give me hope with my cancer.
Cured – That is until he was not? It must be close to nine years since his initial diagnosis. John, now, has {several}, confirmed, secondary cancer(s).
I have, previously, applied for several cancer vaccine trials. I was excluded as I was not sick (ill) enough to be included, despite matching ALL, detailed, (published), trial criteria. I have been told that I should consider this as a positive. As in, look on the bright side? You are not that ill (yet)? That, surely, must be a good thing? You are not that sick (yet). Not sick enough.
I get it, if Patient A (myself), currently with, advanced (no cure) but still relatively stable cancer, compared to, Patient B, who has exhausted all other treatment options. Who should get onto a trial first? A or B? A no brainer? Patient B. It’s hard being Patient A especially as I know that one day (soon), I will be patient B.
Patient B.
When prostate cancer does take a turn for the worse, inevitably it will, it can be like a switch? Sudden, and often catastrophic. That is my future and my worse fear, that when that day comes when I am Sick Enough, it will be too late for any meaningful, positive, change.
Despite everything I am still a glass half full person. I believe I have a realistic approach as opposed to a pessimistic approach to my cancer. I am proactive with my treatment driven by a keen ‘will to live’ and an even bigger will to future proof , to mitigate any potential consequences for my male family, (forewarned is forearmed).
We are ALL living thru difficult times. Due to increasing demands upon, ever decreasing, resources, it is not a given to expect anything close to appropriate treatment or care any longer, in any health area. Health care is even more of a lottery than it ever was. Try getting a F2F GP appointment, try contacting ‘a consultant’ try requesting a [prostate] PSMA PET scan? In 2019, I had to arrange my own, critical, PET Scan, in Australia. A private scan that worked out a fraction of the cost of a private PET Scan in the UK (see my previous posts).
My reality is, post-pandemic, a stark statistic of just 3% chance [10% pre-pandemic], for a 10-year life expectancy for advanced prostate cancer patients. Having just past year seven, without any trial intervention, a 10 year, post diagnosis, life expectancy is my current benchmark.
I have a 40-year-old son, a 6-month-old grandson in the UK. I have a 2-year-old grandson, and a 2-month-old grandson, in Australia. They are all biologically, at greater risk of contracting prostate cancer simply because of their Granda’s genes. I am currently enrolled on a Genealogy Trial, to try find out as much about my DNA as possible, data that help them in the future. The guilt I carry for having prostate cancer genes is, at times, hard to bare. I try not to think about it. I try to find as much as I can out about it.
Dying to Live
I have and (still do) think about dying, it’s hard not to. I used to obsess, not so much now, it’s not that useful to? I find that I don’t think about dying so much when I have Hope. Specifically, the hope of a life extending trial. Dying isn’t that important to me, LIVING is. I am finding it harder to Live recently? Just my imagination? Or, the start of an inevitable health decline? Hopefully not.
Dying (if you let it) gets in the way of living? Living is important to me, making the most of any Living I still have left. Currently, I have less control of my life. I do (still) have control of my Living. I do not have any time spare, to waste it on dying.
At 63, I am very lucky, I have lived. I have loved and been loved. I am still loved. I feel love now, more than I ever felt in the past which is hard to admit and something I deeply regret, not loving more when I could (can). When diagnosed with incurable cancer I had no grandchildren with none on the horizon. I now have three! My three beautiful grandsons allow me so much hope, optimism & fill me with what I can only describe as pure joy.
Despite Covid I have managed to meet, to hold & smell (two of ) my beautiful grandsons. I will meet grandson number three, (for the first time), later this year. I hope I get the chance to live long enough to tell them all, ‘Grandad jokes’, to love them (even more if that is possible) and for them to get to love me, to know me long enough so that they will not forget me when I am gone.
I might have incurable cancer, but, I am also, incurably, in love with life. I want to live some more. I cannot just be ‘dying to live?’ This is why this trial, the next trial (any trial), and the hope trials allow, are so important to ‘no-cure’ cancer patients.
Thanks for Reading
Peace & Hope
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-022-09424-4
Dying to Live 