Richard-binns.co.uk

For the third time in the last year I have been prevented from proceeding with radiotherapy treatment (RT) for my prostate cancer. After thirteen months of Zoladex (hormone treatment) my prostate has not reduced one iota in size; the gland remains the size of a cricket ball. My consultants say the glandis the biggest they have encountered. Normally Zoladex reduces the prostate by half in 13 weeks! I know enough about prostate cancer to realise that a ‘radical’ (curative) prostatectomy, the removal of my prostate gland would result in chronic morbidity. The post-operative complications would seriously prejudice my quality of life. This would also be true for standard beam radiation (RT). Inthe words of my oncologist: ‘I guarantee long-term severe damage to the bladder and bowel.’ My prostate gland size also prohibits radioactive implants(brachytherapy) or freezing (cryosurgery) treatments.
Three options remain. First: have no treatment at all. Men die of prostate cancer when the cells move from the gland to the bones; this is known as metestatic prostate cancer. I’ve been caught early: the cancerous cells are not in my bones; nor are they too numerous; and they are at the low end of therange described as ‘aggressive’ (the possibility of progressing over time). One debit though: these cancerous cells must have been in my prostate in 1995(the start of my problems); possibly even earlier.
Second: continue with hormones. This month I changed from Zoladex (goserelin) to the newer Casodex (bicalutamide). (By stopping the body making testosterone Zoladex turned me into an eunuch!) Casodex is an anti-androgen, blocking testosterone from the prostate. The side effects are less onerous.
One debit: men in their mid-60s do not normally have to rely on hormones as a monotherapy for the rest of their lives. In addition, cancerous cells in theprostate often become resistant to hormone therapy, the latter often becoming ineffective (‘hormone refractory’).
Third: have ‘conformal’ radiotherapy. Using computer software a 3D image of the prostate is created (‘conforming’ to the tumour) which, together with many physical ‘shields’ (special robotic leaves) made to protect, as far as possible, other organs, allow radiation beams to be directed more precisely.
Conformal radiotherapy is in its early days in the UK; my case will be very difficult – because of the large amount radiation needed to kill the cells in my oversized gland. Low doses of radiation would be used each day for six to seven weeks; but even so my prostate would become extremely inflamed.
Despite the shields I would have problems with both my bladder and bowel: reductions in my present excellent voiding patterns with the former (retention even); and both bleeding and diarrhoea with the latter. In my consultants’ words: ‘possible problems’; to be charitable that means ‘probable’;to be realistic read ‘definite’. It is likely I would have to have an operation to bore out the prostate centre. Any problems arising before treatment iscompleted would be seriously prejudicial to its ‘success’! I have four to eight weeks to make a decision. There is one final treatment ‘variation’ open to me: I could decide to continue with hormone treatment and delay the start of conformal radiotherapy.
I chose the latter option, to continue with Casodex (a palliative treatment) – basically to give me time. Recent scans confirm my prostate is still huge (140gm!) Of the radical (curative) treatments conformal radiotherapy remains the only option – but with the certain morbidity described earlier. Somemonths ago I met Prof. Steward at Leicester General Hospital to discuss the merits of angiogenesis inhibitor drugs (which prevent new blood vesselsforming near cancerous cells); but this palliative treatment is currently only available for patients with ‘advanced’ cancer. I’m not there yet; but I am onhis waiting list. A further new radical possibility is ultrasound transducer treatment; clinical trials have yet to start.
I continue with my self-researched ‘good prostate health’ regime (I started in the summer of 2000). I am convinced that my new Far Eastern and Mediterranean eating habits, plus a number of pertinent supplements, all on the website ‘Diet’ page, should give the cancerous cells zero help in theirattempt to proliferate. Certainly I feel, and look, fitter than I have for decades. I continue to be 100% positive.
My PSA readings (a blood test ‘marker’ for how the cancer is progressing) have gone down! I am convinced this has come about because of the soya isoflavones/lycopene supplements I started in March 2002: the isoflavones and saw palmetto act as oestrogen-blockers, as does Tamoxifen. Soya alsoacts as an angiogenesis inhibitor, as does Thalidomide (used at Leicester Hosp.). My oncologist and I have decided to stop Casodex and see whathappens if I stay with just the regime! Cross fingers! After the initial blitz with Zoladex back in 1999/2000, which brought my PSA reading down to 1.2, I moved to Casodex. From late 2000 through to early 2002 the PSA readings rose steadily to 3.6. This latter test coincided with me adding lycopene capsules, soya isoflavone capsules and other naturalfoods to my diet. By August 2003 the reading remained at 3.6. The first lesson was that my regime had clearly helped Casodex to plateau out thereadings. Alas, relying on my regime alone does not give me enough punching power; the February 2004 test reading rose to 14.0. So I’m back onCasodex – and now we must hope the combined effect can bring readings down again and keep them there.
(Some other points: my general health remains terrific. I shall continue with the regime – with a vengeance. I wish I had been on a Far Eastern regime for 60 years rather than less than four! In the Far East men have as many cancer cells in their prostates as we do; but only one dies of prostate canceragainst our 15. Clearly their diets mean the cells are less aggressive. Perhaps that will be the most beneficial effect from my natural regime? Finally: bearin mind my prostate gland remains 140gm – four times the size of a normal gland, say 30gm, for someone of my age. In the US doctors always dividethe PSA readings by the density of the gland; and all medics will confirm that size produces more of the antigens (PSA? Prostate Specific Antigens). So,my results tend to equate with those readings for some men which are less than even 1.0 where their prostate density is say 30-40gm. My water flowcauses me no real problems at night, which for my prostate size is amazing. That’s because I’ve used saw palmetto (nature’s equivalent to Proscar orFinestaride) now for seven to eight years. Highly recommended.) My PSA reading at end November was just over 8.0; three months earlier it was 7.8. Looks as if we may find the reading has bottomed at that level.
Waterworks. In late 1997, after a series of urine retention (catheters each time!), I started to take my waterworks (voiding) more seriously; and I also began to use saw palmetto what a difference those natural capsules have made over the years. However, more recently, I have become aware that I ampassing less urine per voiding: down from an average of 250ml in April 1998 to 210ml now. Obviously I go to the toilet one more time, on average, now(from 8 to 7). Nights have never presented a problem for me; though I have found, for example, that a highish salt intake (soya miso soup/ soya tamarisoya sauce) makes a difference; my kidneys don’t shut down and I get up three to four times!!) For some time now I have been applying some ‘lateral’ thinking to the medical theories on both enlarged prostates (BPH: Benign Prostatic Hyperpla- sia) and prostate cancer. ‘Testosterone’ is always considered the hormone which does the damage. Yet from 40 onwards men produce minimal amounts.
I know full well that Far Eastern men have much reduced rates of prostate cancer than we do in the West. Women there have even less breast cancer.
Hence my ‘Good Prostate (or Breast) Health’ régime – with its great reliance on natural oestrogen blockers (weak oestrogens or phyto-oestrogens –such as soya isoflavones and saw palmetto).
But what about BPH? One of my readers, with a Japanese wife, was able to confirm that BPH sufferers in the Far East were only a fraction of the numbers here. I then came to the conclusion, in September, that lifelong Far East eating régimes help men to keep down the aggressiveness of prostatecancer AND keep the prostate gland smaller (less BPH). Testosterone plays a small part – indeed if any! Blocking oestrogen is the main raison être of my régime. Now I have another reason for oestrogen blockers – my BPH problem. Imagine my surprise then when a couple of weeks ago I came across these comments by Dr Sarah Brewer on ‘Saw Palmetto’. I quote: ‘Although the exact cause of prostate enlargement is unknown, it may be linked with the relative lowering of testosterone levels and the relative increase in oestrogen levels that occur with increasing age. Certainly prostate size and volume are directly associated with oestrogen levels. The prostategland may respond to the changing hormone environment by enlarging to absorb more of the lower amount of testosterone available.’ And: ‘ Men in China and Japan, for example, are at least 10 times less likely to develop BPH than Western men.’ She goes on:: ‘their diets all contain weak oestrogen hormones (known as phyto-oestrogens).
Eureka! What Western men have to do is to adopt Eastern régimes. I’ve done that but less than four years ago (they have done all their lives). So what I’ve said at my 30 November meeting with my urologist is to suggest I need, as a ‘test case’, a limited dose of Tamoxifen – or some other oestrogenblocker drug (which is what tamoxifen is!).
My urologist is now going to discuss this with his oncology colleagues. I think they are going to agree – and let’s see what happens. If they say ‘No’; I’ll want logical reasons why not. I need to reduce my prostate size. I want to attack, even more fiercely, my prostate cancer. Watch for further news! Finally. Recently the national press features one of the (I quote) ‘newer’ and most promising radical treatments: HIFU (or HIFUS) – high intensity focused ultrasound. I first mentioned this treatment in August 2002. ‘New’ here; but in Japan, China, Israel and the USA for five years! Alas one of the many criteria patients have to meet is that their prostate glands must not exceed 40cc (or 40gm). Missing that one criterion rules me out: I’ve now been using hormone therapy for five years. If any reader, with prostate cancer and facing the long-term use of Zoladex and/or Casodex, would like to know more about the side-effects then please e-mail me with your phone number. I’ll ring in return. E-mail <richard@richard-binns.co.uk> Since I put the ‘December 2004’ (early in the month) notes up on the website there has been a worrying deterioration in my voiding. Daily voidings have risen to double figures; actual output, per voiding, has plummeted – usually not much more than 100ml; 220ml is an exception. Worse still, on more thana handful of nights, I couldn’t pass any urine and I found myself sitting in three inches of hot bath water – relaxing the prostate – or, several times, takingan emergency Doralese tablet (at 20mg this acts like a tap full-on; better to ‘try’ to slice the thing into thirds; say 7mg each). I hadn’t had to do this topass water since 1998, my last Chianti-driven total retention saga – a catheter job in the end.
In a further letter to my urologist I made a telling, controversial point – of interest to every GP. Read the 7th para in the ‘Dec 2004’ notes. If the last sentence is right then my prostate is growing significantly because, not only is there a ‘lower amount of testosterone available’ (remember only about10% of the ‘circulating’ variety can be absorbed), but Casodex blocks off the stuff completely. So the gland works harder and harder for nowt. I’m sureyou see what my conclusion is: no wonder then that my prostate must be even larger then the last ultrasound count at 140gm.
Two days ago I asked my GP to prescribe Cardura (which my younger brother Keith uses with some success). Instead he prescribed Doxazosin.
Doralese, plus the latter two, are all derived from ‘prazosin hydrochloride’ – an alpha-blocker to reduce blood pressure. (The notes with the pills saynothing at all about BPH!) I’ve elected to have 4mg capsules. To start with I cut a tablet into two: and took 2mg a time. I’ve taken one as I go to bed (to avoid the mid-nightly worries expressed earlier; and the other 2mg at about 6.00 a.m. – the start of the usual four-hour whoosh of passing water (a pattern with me for someyears). No point in taking any more of the drug between lunch and evening meal time as my norm has always been to pass water at lunchtime, eveningmeal time and before going to bed.
So far the results have been very pleasing. Two 200ml voidings during the night; and 3 to 4 from getting-up to lunchtime. You certainly realise it is a blood pressure drug. My blood pressure is/has been bog standard for yonks. My two-steps-at-a-time run up two floors to my flat will have to be watched:slight dizziness! Shame: that, several times a day, helps me to keep very fit. Maybe it will go. Likewise: you feel almost a laid-back ‘malaise’ after taking2mg; maybe that will go in time.
I must get my prostate size reduced – always my bête noire. So, I’m putting pressure on my oncologists to do the following: a) another ultrasound to determine my prostate size; b) a blood test for oestrogen and testosterone levels; c) to consider prescribing, as a guinea pig male, Anastrozole (a friend of mine, of the same age, had a recent mastectomy; then Tamoxifen which proved too onerous; and is about to use the newish drug).‘New’ here, in use five years ago at the Mayo Clinic (their detailed notes are an eye-opener; see whatfollows).
Many cancer tumours (BPH too) grow in response to oestrogen. Anastrozole does better than just blocking oestrogen; it has an effect earlier in the chain of events by stopping the production of oestrogen (a BHP bonus too). The amount of oestrogen that the tumour is exposed to is reduced, limiting thegrowth of the tumour (for prostate cancer too). Can you fault my logic? If so please tell me.
The final two sentences above: no need to tell me; I solved the ‘logic’ myself! The answer was found in the Mayo Clinic notes: among the many side- effects are ‘urinary difficulties’ and ‘increase in blood pressure’. Both an absolute no-no for prostates. Tamoxifen, in reality, is much too toxic andunpredictable for prostate cancer treatment.
Anyway, all the events listed above in early January, came to a grinding halt on the 18th of that month: ‘retention with overflow’ forcing catheterisation.
Read the chapter ‘Prostate Problems’ (click-on in the drop-down menu under the ‘Author’ button).
What now follows are the contents of three emails: Tuesday 1 Feb proved to be a bad day: the planned removal of the catheter. Plan A was to see if I’d manage on my own (I had taken Flomax for four days to prepare for that possibility). But no way: back to the hospital in under an hour, and after drinking plenty of water, to be re-catheterised. Back homeonce more, did some work, again drank plenty of water – but, no, no urine getting through even with the catheter! Back to the hospital in a real state;nowt quite like a vary full bladder unable to empty.
I was then ‘Dyna-rodded’. My word. What relief: water, plus gas, equals aerated water – which pushed everything in the bladder out. Litres of it into a vast beaker. The most stunning sight was the bottom two inches – like a blackcurrant ‘soup’: literally hundreds of small pieces of dark clotted blood –all caused by a catheter in just two weeks! (I had seen a few during the original catheterisation.) No wonder I couldn’t pass anything with or without acatheter. I had been utterly clogged-up. This is called Prostate trauma.
Since 1 Feb I have only seen two bags of light rosé urine (‘bag’ attached to my lower right leg); otherwise all light yellow. I’m drinking gallons of water.
Plan B is now in motion. I’m paying to have a TURP on 3 March – to ensure the surgeon has plenty of time to be careful and skilful and to able tocauterise blood vessels. What is now certain is that I have an awfully ‘vascular’ prostate. BAD NEWS.
The ultrasound I paid for at the end of Jan showed my prostate size at 160+gm. I’ve got to do something drastic as the prostate is pushing up into the bladder, the latter looking more like a Lac Léman shape. Maybe I should have given Floxmax another chance? One thing is certain: I didn’t drinkenough water after the first catheterisation (an out of hours emergency with a nurse doing the job); I continued with my normal daily input of about 1.7Lfluid. Not enough: the hospital staff didn’t ram it home as they did on 1 Feb (urology experts this time). I didn’t stand a chance on my own on 1 Feb, afterthat sensational clogging-up over the period since 18 January.
Finally, one odd sensation continues. I regularly get the urge to urinate, even with the catheter in place. I have to go to the toilet: often nothing comes down outside the catheter; but sometimes it’s a teaspoon worth; and on other occasions as much as 50-100ml. For the latter if you don’t get to the toiletin time you have a real mess on your hands. So, even with a catheter, I cannot be too far away from a toilet – just in case. So much for ‘spasms’ and‘Urgency’! (The latter two problems were still with me pre-Easter in March – when I put the set of three emails up on the website.) Email to readers, friends and my family (9 March) Back home now after the TURP operation and all appears to be going well with the ‘flow’ (alas two litres voided during the night, every night).
The immediate hours after the two-hour brought a very serious crisis. My 160gm vascular prostate (four times the normal size if blokes my age; now no more jokes about the Guinness Book of Records please Liz) and its wretchedly high number blood vessels proved to be real sod. Pints of ‘heated’blood were needed (haemoglobin levels fell dramatically, by over 60%); also plasma; and, over 36 hours, 50 litres of saline were pushed though mybladder. Plus other things two; into various inlets into my body! A ‘real sod’? That was a gross understatement. Even now though I can see the funny side of some ‘happenings’: being tethered, dinghy-like, to eight points around the bed, either taking readings or feeding me with a handful of essential musts. I couldn’t escape that’s for sure! Other laughs followedwhen just three attachments meant I could get up but go no further than my bedside: in the main to cope with sudden ‘spasms’, coupled with ‘urgency’voidings of urine (plus blood) outside the three-way catheter (hope that makes you wince Brian) I had been wearing for three days. (I had got used tothose ‘spasms’ in the weeks before the op.) One spasm at the hospital produced 400ml in no time at all – like Niagara Falls. If I had remained in the bedI would have floated away to the nearby River Avon.
One ‘benefit’ of the op (what follows would never have won any ‘sales order’ in past decades) is that there’s a mass of tissue available for ‘histology’: that means in a few days I shall be given an up-date of how many cancer cells are in the prostate and, most importantly, the Gleason ‘Score’, or ‘Rating’,which tells you the ‘aggressiveness’ of the things. Anyway, whatever, I shall have to continue keeping all battened down as best I can.
Final chuckle: I have restarted Pelvic Floor Exercises (what are they? asks Jim: tell him Jane). First the ‘Lift’ – ‘tighten as hard as you can for as long as you can’; followed by the ‘Wink’ – ‘only held for a second and repeated quickly 5-10 times’. Finally, the ‘Trick’: do a couple before you cough, sneezeor laugh’. All you blokes must be mystified: ask the lady in your life. Real reason for this ‘exercises’? To take control of both ‘urgency’ and to ensure ‘nolack of control’. So there! Keep smiling! Enjoy life! Keep your fingers crossed or anything else that’s handy: the latter is called the ‘Pump’ exercise (no, I’m not going to explain Email to readers, friends and my family (18 March) Progressing well at home. Pelvic Floor Exercises are still a priority. ‘Urgency’ is still a problem. Winning but lots more ‘Lifts’, ‘Winks’ and ‘Tricks’ needed over the coming weeks before I can get a secure, regular royal ‘flush’ every time.
The ‘histology’? Alas, bad news. The Gleason ‘Rating’ or ‘Score’ couldn’t have been much worse. On a scale of 2-10 my score is 9. I’ll not go into detail but asummary would be: two of the most prominent cell patterns extracted in therecent bore-out have been examined by a pathologist and, in my case, a score of4+5=9 emerged. In 1999, when the original cystoscopy was done, the biopsythen gave a score of 3+3=6. Both 4 and 5 are ‘poorly differentiated’ cells. QED:as aggressive as they come.
The most disappointing aspect of the last two months is the out-of-the-blue ‘vascularity’ of my prostate (excessive blood supply). This is the last thing youwant in the gland when you know cancer cells are about. How, when and whythis has happened is now neither here nor there. It’s a fait accompli! I’m con-vinced it is all to do with the body’s immune system and the vital Th1 and Th2cells and the two different jobs they do. (Thymus-derived helper cell type 1 andtype 2.) In my case prostate gland inflammation, infection and damage, bothlong and short-term, prompts the body into healing mode, lowering Th1 levels toallow ‘repairs’ to take place. If cancer cells are lurking this is bad news, particu-larly as Th2 cells proliferate, creating new blood vessels around damaged tissue.
They allow the cancer cells to grow and spread. That’s why I’ve been taking a300mg dissolvable aspirin every day for some time. Now I’m taking three; I wishI had earlier. (If any of you are interested refer to the article called ‘Cancer’sMissing Link’ in this section of my site, under Author).
Anyway, let’s be positive. My urologist and oncologist, with my agreement, are undertaking the following treatment ‘plan’. Immediately after Easter I start a‘Maximum Androgen Blockade’ for three months. I continue with Casodex (whichblocks testosterone from the prostate) and I start again with Zoladex (a monthlyimplant which prevents the body from making testosterone and other ‘andro-gens’). QED: the blockade keeps testosterone from both the prostate and thecancer cells.
The aim is to try to reduce the size of my prostate even further over three months (April to June). The gland has already lost a big part of its ‘interior’: 100gmwere removed in the recent op, leaving 60+gm. Then the ‘plan’ is to use ‘conformalradiotherapy’ to see if we can kill-off the remaining cancer cells. I explained allthis some years ago on this website: see the very start of this now long chapter.
Keep fingers crossed! Be sure that I will be like the ‘frog’ in the ‘Don’t Ever Give Up!’ Cartoon. (I’ve sent hundreds of copies to my readers over the years.) 1) The ‘vascularity’ (copious blood vessels) of my prostate came as a shock: for me and all the medics providing advice and care. PSA readings gave no clue. What should be standard treatment is constant monitoring of the condition, especially for large prostates: for example the use of endoscopyinvestigations in the prostate; or more detailed ultrasounds perhaps (you’ll not be surprised to read that I, eventually, had to pay privately for anultrasound to be done; the pressure, and backlog, on NHS equipment is huge). Does anyone have ideas how this could be done? E-mail Richard A copious blood supply is the LAST thing cancer cells need! What the latter need is a supply of angio genesis inhibitors (agi: which stop the creation of new blood vessels). See Soya Isoflavones in ‘My Diet’ (in this drop-down menu list). The latter have come too late to really help me during the lastyear or two – but, over a lifetime, they have benefited, massively, all Far Eastern men and women with cancers of the prostate and breast. I know workis being done in trying to create ‘agi’ drugs. At the moment Thalidomide, a very potent ‘agi’(the cause of all the terrible deformed limbs in childrenduring the early 60s) is being used but only for advanced cancers.
2) Taking the gamble to stop Casodex in August 2003 (see earlier) for six months was a big mistake on my part, but supported by the medics looking after me. All we had in mind were the cancer cells; no account was taken of the impact in providing testosterone to the prostate – which allowed the glandto grow even bigger.
3) Somewhere along the line all the above links back to the Th1/Th2 cells mentioned earlier. Th2 cells must have created the steep increase in ‘vascularity’ and, QED, the stepped-up aggressiveness of the cancer cells. (I’ve had a long history of inflammation and infection in the prostate over 25years, ever since I started sitting for such long periods in a car carrying out all the myriad research I’ve been doing!) First, the humdrum news. The TURP operation has been a success. Two weeks after the op I stopped taking Oxybutynin (to help the urgency problems).
Bleeding eventually stopped 10 weeks after the op. By then waterworks ‘performance’ was hugely improved - more like one’s younger days. For so long,from mid-January when the first catheter was put in place, proper exercise was a pipe-dream; but after the bleeding stopped I was able to work hard atrestoring muscle power. At the end of May I felt 100% fit again; and looked it too. The Zoladex/Casodex combination continues. One major caveat: hasthe major loss of blood from the prostate gland, starting in mid-January, carried the aggressive cells to other parts of my body? Now the news I’ve been apprehensive about since the end of January I’ve had three ‘scans’ in the last few weeks: first a ‘CT scan’, followed by an ‘Ultrasound scan’, both at Warwick Hospital; and finally a ‘Gamma camera’ bone scan’ at Coventry’s Walsgrave Hospital.
The CT scan confirmed the need for a bone scan. The Ultrasound confirmed that the overall size of the prostate gland remained big, despite the 100gm removed during the TURP op, 7cm at the widest diameter; and the prostate ‘capsule’ had been breached by a ‘tumour’. The bone scan, as you haveguessed, brought the worst news of all.
The cancer cells had indeed escaped: significant ‘spots’ could be seen on ribs; much larger areas had developed on the bottom of the spine; and a bigger amount of cancer had taken hold in a corner of the pelvic area.
How can I relate the eventual outcome of this hammer-blow news? A reader friend, like so many of you, on hearing from me in early June of this possibility, sent me an email: ‘I am sad to read that the prostate cancer is moving towards your bones. All the very best for 17/6/05 and I hope the GoodLord will reject any indication that you wish to have an appointment with him!!’ Well, the ‘appointment’ looks likely to come sooner or later - but certainly much earlier than anyone would ever want to meet ‘the Good Lord’. I shall have to be the ‘frog’ in the cartoon: fighting like a dervish to stop the heron swallowing me! Radiotherapy, conformal or otherwise, is pointless; that isa non-starter. Zoladex, with or without Casodex, initially remains the only treatment to keep the bone cancer quiet.
I shall have monthly PSA blood tests to determine the progress of the ongoing hormone therapy (on 17 June my PSA was 6.6; not much lower than the 8.7 last November). Some time soon I shall meet Prof. Nick James at the Queen Elizabeth Hospital in Brum to determine if any other ‘novel’ treatments,at the clinical trial stage, may be able to help (like e-coli). Chemotherapy will be another toxic possibility. As will Thalidomide, the ultimate andstrongest possible angiogenesis inhibitor; Prof. Stewart at Leicester Hospital uses this for advanced cancers.
I shall continue to keep fighting fit: and I shall continue with my régime - with absolutely no dairy produce these days.
My greatest sadness is the burden my dear Carol has already had to carry and will increasingly have to continue to do so in the months to come. She does not deserve such massive misfortune. Sadness, too, for my family - and especially Keith, a real Rock of Gibraltar brother. All of you I know will continueto be ‘seconds’ in the ring, encouraging and ensuring this frog scraps to the bitter end. Please do not feel unhappy: be positive; keep well; and continueto enjoy life. Carol and I will do so, that’s for sure. More reports, at the end of every two months, will follow.
Observations: these cannot change past events but will interest you nevertheless.
This month I read the following on the Mayo Clinic website: ‘A small percentage of prostate cancers don’t lead to elevated PSA. In these cases PSA level may be normal or even low, despite the prostate cancer. Some scientists believe these have more genetic mutations than others and allow this formof prostate cancer to grow and spread more quickly. One group of researchers found that PSA helps slow the growth of prostate cancer in laboratorystudies by slowing the growth of new blood vessels (angiogenesis) that cancer needs to survive. This may explain why prostate cancers that don ‘tproduce PSA tend to grow and spread more rapidly than prostate cancers that do produce PSA. More research is needed to determine prognosis andtreatment.’ The above fits my ‘case’ over the last few years to a tee: 100% spot-on! The NHS. In July 2002 I asked for an Ultrasound scan, to check the gland size. A three-line letter confirmed the ‘volume is graded at 139mls’ (gm). The letter continued: ‘In one spot in the right lateral lobe, there is a swelling which breaks the capsule. This will be discussed at the next Multi DisciplinaryMeeting.’ It was and no undue concern was expressed. At the time my PSA was a low 3.6.
Despite the fact that I have seen consultants, consecutively a urologist and oncologist, every three months for the last six years, nothing was done post July 2002 to assess prostate gland - until I pressed hard for a further Ultrasound test in January 2005.
The NHS is a ’10-minute service’. Pressures, stress and sheer volume of work (three incoming phone calls came when my oncologist broke the bone scan’s ‘very bad news’; and the meeting started an hour late!) prevent consultants diligently managing their patients problems and constantly reviewingthe treatments needed.
Now it’s pretty obvious that further Ultrasounds should have followed in both 2003 and 2004; plus the use of endoscopy, which would have shown how vascular the gland was becoming (excessive blood vessels, the single worst situation as blood provides the essential oxygen for cancer cells to thrive andbecome ultra aggressive).
No wonder then that Japanese men, for example, with their life-long diet of soya (Nature’s weak but best angiogenesis inhibitor), tend to have far fewer aggressive prostate cancers (they certainly have the same number of cells; autopsies prove that). My two to three years on a similar régime is like spittinginto the wind - but I shall continue it with a vengeance, especially the elimination of all dairy produce.
I’ve had four ‘rewarding’ consultations during July and August: first in Coventry with my oncologist Dr Caroline Humber; followed by two with Professor Will Steward at University Hospital in Leicester and Professor Nick James at University Hospital in Birmingham; and then a final ‘recap’meeting with Dr Humber.
The encouraging news is that I have several optional treatments - all legally and currently available as prescription drugs. However, first, let me describe A. Hormone-related therapy Cancer of the prostate depends on testosterone for its growth. Androgen drugs (also called pituitary down-regulators), such as Zoladex or Prostap, act directly on the pituitary gland and prevent a signal reaching the testes, which manufacture testosterone.
Casodex and Cyproterone are anti-androgen drugs which stop (or block) testosterone from reaching the cancer cells in the prostate. Note: testosterone is still made. (I’ve had both Zoladex, in 1999/2000 and the last five months, and Casodex in 2001-2004.) Hormonal drugs like Stilboestrol release man-made oestrogen which prevents a signal from the pituitary reaching the testes.
B. Hormone-refractory prostate cancer This can occur some years after successful use of the above drugs. The cancer sells eventually find ways (refraction) of growing and spreading, helped by the blood supply, without the need for testosterone. Often the cancer spreads to the bones: as a resultpatients are then left with fewer treatment options for the disease. ‘Hormone-refractory’ makes any drug, on its own, ineffective.
Available treatments for my bone cancer are (in the order I would use them): 1. Combined ‘androgen’ drugs like Zoladex and Casodex, both at maximum doses.
2. Alternative hormone therapy - changed to make the cancer cells ‘think’ again. One example would be Stilboestrol combined with a steroid like Prednisolene or Hydrocortisone (both corticosteroids).
3 Chemotherapy where several drugs and minerals are used: think of the mix like a cocktail - the contents and quantities put in the ‘shaker’ depend on the patient’s needs. An example: the toxic Docetaxel or Taxotere drugs mixed with the likes of Tetracycline, Thalidomide, Vitamin D, Melatonin andmany others.
4. Bone-targeted therapies: Bisphosphonates (to strengthen bones) or Radio-isotopes.
5 The new Tyrosine Kinases Inhibitors (angiogenesis inhibitors) which, though they cannot kill cancer cells, do stop blood vessels forming, the latter needed for the cells to flourish and spread. These now replace Thalidomide. Three years ago Prof Steward gave me the details of TKIs when they wereat the phase II stage of a ‘clinical trial’.
The last two words give you a clue to the treatment I have chosen instead of those listed above. Professor James has suggested, and I have accepted, that I join a current phase II ‘clinical trial’ of an AztraZenica product - ZD4054 (no name yet).
What is ZD4054? ‘Many cancers make substances that help their growth. ZD4054 is an investigational new drug that blocks one of these substances called endothelin-1. Experiments have shown that blocking endothelin-1 reduces the spread of cancer to bone and for the cancers that have alreadyspread to the bone, reduce bone pain.’ By coincidence I already know of Abbott Laboratories’ Xinlay drug - which has just been given permission by the U.S. Food and Drug Administration to make the drug available to men with late-stage prostate cancer (in the bones) which does not respond to hormone therapy (like me) - even though thedrug is not yet fully approved.
The drug is akin to ZD4054. Indeed I wonder is there is some link between the two drugs , though not yet official and out in the open! Abbott say their drug is: ‘a critical step in our goal of making new therapies that are less toxic.’ The same seems to apply to ZD4054. Abbott continue by claiming‘Xinlay is an investigational, oral, once daily, non-hormonal, non-chemotherapy, anti-cancer agent that belongs to a class of compounds known asendothelin-A receptor antagonists. They antagonise (block) the effect of endothelin-1 (ET-1), one of the proteins thought to be involved in the stimula-tion of the spread of cancer cells.’ All those words apply equally to ZD4054! ( Apparently clinical trials for use of the drug earlier in the disease are underway in the States. Also work is being done to measure the drug’s effectiveness with other cancers. No wonder then that the Bank of America Securities team believe that, once the drug is approved in late 2005, Xinlaysales will reach $300 million in 2006 and ultimately $1.5-2.0 billion annually.) So, all good news - if the two drugs prove to be that effective! I have two months of tests, scans and other pre-treatment examinations before I start the trial at the end of October. The sole debit is that one in three of the patients taking part in the UK trial, just 42 of them, will be taking daily placebo pills! Abbott also say ‘For patients where prostate cancer spreads to other organs (including the bones), it remains incurable.’ That may well be but there are plenty of ways of fighting the beast.
Some of you have seen me recently. You already know that ‘my contribution’ to the scrap is two-fold: to keep super fit and to stick like a limpet to my terrific food régime. The fact is I look and feel fitter than I’ve been at any time since 1960! Keep your fingers crossed for me.
Expect the next update at the end of this year.
1 June 2006 The maximum androgen blockade, Zoladex and Casodex together, have failed. Not surprising really, as my PSA has risen in s sharp line from 61 on 15 December to 255 at 25 May 2006. WE should have abandoned the ‘blockade’ on 20 April this year, when the PSA read 187; but the ‘registrar’ (shewas a wishful thinker!) thought I should try the drug combination for another six weeks.
On 1 June I visited the Queen Elizabeth Hospital in Birmingham but, alas, Professor James was not there (I last saw him on 12 January). After an hour spent updating a new doctor, who then updated a new ‘registrar’, followed by me updating the latter, we agreed to bypass the stilboestrol and pred-nisolone (a corticosteriod) option and go ahead with chemotherapy (Docetaxel, otherwise known as Taxotere).
However, I must await six-eight weeks because I must allow Casodex to disappear from my system; Zoladex, amazingly for me as it has been a major failure since last summer, will continue.
So, I’ll start the chemo towards the end of July. I hope to see Professor James on 13 July to confirm the choice made by his team. (Bone pain has started to rear its ugly head, but not too seriously. The chemo should help me combat this, especially if the pain increases.)

Source: http://www.richard-binns.co.uk/pdf-file/health.pdf