Started as a possible PCa-friendly diet to help just me. It's become so much
more than that now.
I have found so MUCH that isn't in the books and booklets - lots of
controversy, lots of pointers and even more controversy. I'm trying now to
tie it all together into a document that might possibly replace those
initial reading booklets to be something much more informative - without the
medical and scientific jargons, the pseudo-semantic exercises in confusion
generated by scientific reports - and much more. Things the Doctors DON'T
or WONT tell us.
I would like to think that with international cooperation from as many PCa
survivors as can be 'bothered' to contribute to this project, we might
achieve a document set in Layman's language rather than any doctor's - that
could be available free of charge to ALL PCa guys, their partners, families
and their friends - nomatter where they come from, paid for by some
charitable or insurance organisation? A document that tells you what PCa -
IS - a document that tells you about angiogenesis in a way that's easy to
understand. A list of reading materials available in all countries; a list
of helpful websites from round the world.
I have included a comprehensive glossary of PCa-related terminologies and
abbreviations that is fairly inclusive. I found that alone to be very
informative.
An essay on dietary recommendations and supplement inclusions by eminent
doctors in that field.
Articles on Vitamin D3,
Vitamin E, the roles of Selenium, Vitamin E and
certain of the B Vitamin groups.
Articles on Zinc and the dangers of too much Copper in the diet.
Essay on things to consider and things to avoid. (Can be added to - like
everything else)
A Précis on the diet I suggest - with warnings that it may not be suitable
for all - consult your Cancer Doctor first.
The Four-week diet schedule that lists Breakfasts, Lunches and Dinners
(Suppers)
YOUR suggested recipes.
An add-to list of light snacks and replacement small meals.
The recipe section regarding the 4-week suggested diet schedule and the
suggested snacks. (Can be added to)
Added section of contributors meals suggestions and recipes.
Addenda and Extras sections.
Finally - the REAL section that will perhaps make the medics sit up and take
note that we are NOT Puppies in kennels or rats and mice in boxes to be
experimented on - we are SURVIVORS - and FIGHTERS - We are HUMAN and want to
go on living! - Personal stories - histories since Dx to the present. Not
just from the Tigers fighting this disease, but from their partners,
sisters, brothers, Dads, Mums, uncles, nephews, nieces, Grand-kids - even
their friends.
No-one can ever be forced to divulge personal medical information to a
world-wide public. I realise that, and some guys will prefer to remain
unknown and pass on un-noticed. That's NOT in my field. I'm well prepared to
say what's happened since Dx to the present - but that's all. You are NOT
going to learn who I first dated and when I last had shots for some social
disease.
That's NOT what this is about. (To set your mind at ease - the ONLY social
thing I ever had was crabs!) But that won't appear in the finished document.
Just a simple - I was Dx on - - - date - and my initial treatment was --- I
then had --- side effects were --- and today I am? That's all. Expand it as
you see fit. Your name will not be divulged unless you say it's ok.
I think my own history speaks fore itself - but here it is as it appears in
the project under Section 3 - 'Personal experiences' - this is a GUIDE only
as to what is required. Change your name if you like - just keep the facts
straight and true. They very well may help someone.
Case History No 1.
Hugh Kearnley, born 23d July 1951. Resident in Glasgow, United Kingdom.
Status: Medically retired, Divorced, living alone and loving it. Other
health factors: Diabetic type 2 (Dx 2001) and history of Coronary Heart
disease since 1991. Recurrent back pain since 1982.
"I had an industrial accident in 1982 that has resulted
since in ongoing lower back pains that vary in severity. For those pains, I
had been prescribed a variety of painkilling drugs. For many years, I was
self-medicating these drugs and this probably helped to disguise the initial
symptomatic pains of my cancer.
As the pains became more severe, I consulted a doctor who
diagnosed me with a Urinary tract infection. He prescribed anti-biotic drugs
and stronger painkillers. This continued for about 5 months, the painkillers
prescribed ever getting stronger.
It is entirely possible that my self-medication disguised
some of my symptoms until it was quite late in the day, so I feel that if
anyone is to blame, it's probably myself. It was a PSA test (12th December
2006) - result of 140 - that made my GP Doctor send me to see a Urologist.
Initial consultation with a Urologist was at Glasgow
Gartnavel General Hospital - a Mr Aitchison, who after a DRE, had me
admitted to a ward to get my pain under control with
Morphine and other
drugs. I still did not know that I had cancer! I was started too, on
Androgen blockade, and the drug used was called Cyproterone Acetate at 100
mg per day in two doses. (The US name for this drug is:
____________________ ) I just assumed since no-one had deemed to tell me
otherwise, that this was another painkiller!
Once the pain was under control (5 days to have level of
Morphine established) I was allowed home on "Pass" - which I assume meant
that I could come back in at any time) I was sent for a whole-body bone
scan and x-rays. When the result of the bone-scan came through, I was sent
to see the Urologist again - this time a very young foreign doctor who
explained nothing apart from telling me that I had Metastatic PCa and that
the Mets were quite extensive and that I would now have an injection -
goodbye - next patient please? Shock! Utter bemusement! - What - ME -
Cancer? - What - where - why - when - Huh? At first I thought it was a joke
but when a semi-reality set in - I went home and got very drunk indeed.
I was given another drug at the time I was admitted to hospital in
December - called "FLOMAXTRA" (US name: ________________ ) that was given to
help a very restricted and painful urine flow. Wow! - I was back to my
normal fire-hose afterwards without having to get up three and four times in
the night to dribble just a few teaspoons. A full night's sleep - brilliant.
I had my first injection of a drug called an LHRH Analogue - "Triptorelin"
(US name: _________________________ ) and had elected to have the monthly
injection rather than the 3-monthly one.
Some of the side effects were pretty rotten - hot flushes,
hallucinations, shivering fits. The emotional instability - probably the
worst part - sitting reading a book about how a new gun for a tank was
developed - and I burst into tears for no reason - stuff like that. The SE's
went on for long enough - and even on 22nd February I am having some awesome
sweating sessions - both night and day, but worse in the early hours and
have had to change beds a few times during the night.
The 'real' intended effects of the androgen blockade drugs didn't hit
through for a week or so. I noticed no more waking up with an erection in
the morning - not that those did happen every morning. I passed one of those
women you see perhaps once a year - the one that has your hand in your
pocket to suppress the coiled sleeping snake snapping awake.that time, not
any reaction from the wee man! I felt so disappointed - and later, laughed a
bit before bursting into tears yet again. I don't know if all the other
guys were affected like that or if they even had any side-effects.
I knew nothing about this disease and had to go searching
for information from anyone I could find and pester for long enough.
It took another 5 weeks before I saw an Oncologist. I asked a lot of
questions, but got a lot of negative answers. I was supposed to have had
someone there with me at this consultation, but that person didn't make it
and I had no time to arrange for someone else.
I am not eligible to take part in any drug trials because of
my Cardiac history. I had no biopsy because there was no need after the
bone-scan - no Gleason score because there had been no biopsy - no MRI scan
because I was not to be screened for a drugs trial. No CT or Cat scans for
approximately the same reasons. The x-rays have to be re-done because they
were indistinct. That same day I had another PSA bloods done and the result
was 0.3 (from 6th Feb 2007)
The Oncologist wanted me to cut down the Morphine and I
think I overdid it the first night - waking up in a lot of pain about 4 AM.
I'm still experimenting with lower doses to find a satisfactory level.
I'm a pretty big guy - heavy as well as tall and I've lost coming up for
three stones now, since August last year - quite unintentional. My GP says
that losing weight as fast will leave waste products my organs may not be
capable of shifting, but latest bloods say everything looks ok.
My current medications for cancer and cancer-caused pain are:
Triptorelin (Decapeptyl) SR 3 mg injection once monthly.
(US Name: _____________________________ )
Cyproterone Acetate 50 mg tablet once daily at night.
(US Name: _____________________________ )
Tamsulosin (FLOMAXTRA) 0.4 mg one at night. (US Name:
_____________________________ )
Morphine Sulphate 30 mg MST, one 8 AM + one 8 PM
Morphine Sulphate 10 mg (Sevredol) up to 4 each day for breakthrough pain.
Other medications taken regularly are:
Amlodipine 10 mg; Bisoprolol 2.5 mg;
Aspirin 150 mg;
Isosorbide MonoNitrate
20 mg;
Lipitor 40 mg;
Metformin 2 G.
As required: Co-Dydramol 10/500
Supplements I take are:
Milk Thistle
Green Tea Extract
Pomegranate Extract
Vitamin E - 800 iu per day
Vitamin D3 - 3,000 iu per day
Vitamin B strong complex - 1 tab daily.
Vitamin C - 1 x 500 mg chewable daily.
Nearly forgot - 200 micrograms Selenium first thing on waking.
Considering a Lycopeine supplement when I can find one in UK.
That's All Folks!
I get the feeling that some information has been withheld and my treatment
isn't all it might be. I will update this as and when new information of
relevance comes to light"
22nd February 07.
************************************************** ****
Case History No 2.
Case History No 3.
Case History No 4. - and so on.
If you think that your experiences may help to inform someone else - please
respond.
I'd also like the Experts in our group to look hard and correct whatever
they see is wrong.
As I say in my introduction to the project - I'm a Baby at this disease. I
need the grown-up boys & girls to set me right.
Those already with the project:
LEAH,
HEATHER,
JOHN LOOMIS.
Thankyou for your time.
HUGHIE.
My 'project' 
She runs when she wants to,