David
Heritage and Sibylle live in England. He was 62 when he was diagnosed in August
2008. His initial PSA was 299.0 ng/ml, he does not know his Gleason Score and
he was staged T4. His choice of treatment was ADT (Androgen Deprivation Therapy).
Here is his story.
When I experienced chronic bone pain in my lower spine
and upper back in the summer of 2008 I was sure and terrified that that the vertebral
osteomyelitis I had suffered from 10 years earlier had come back to disable me
again.
In 1998 I had been admitted to hospital in screaming agony but there
was no correct diagnosis until 1999 after transfer to King's College Hospital
in London. Before that I had been told, after my family had been told, that I
had cancer of the spine and would be dead in a few months. As a survivor I had
monitored all my results very thoroughly and declined treatment for the incorrect
diagnosis; hence my transfer.
I left hospital after four months, at only
55% of my normal body weight, after long term and sickening massive intravenous
antibiotic doses but was unable even to sit up for several months, my lower 5th
vertebra having initially dissolved to mushy chalk. It took two years to become
mobile and eventually engage in manual work on my 35 acre smallholding.
The
interim period and whole episode was incredibly stressful, in fact hellish, for
my beloved Sibylle and family as they had moved, with an aged mother ,after my
hospitalisation to the house/cabin that I had only 90% completed.
In 2006
having sold up and moved to Worcestershire I collapsed during an energetic "hedgelaying
" demonstration., After nearly killing me with steroids my GP took X rays etc
and after an ultrasonic cardio echogram I was found to have suffered from chronic
heart failure. have an enlarged heart and failing left ventricle. My consultant
,bless him, said "Well I really don't know what to say except that your heart
is knackered" Me "Is that a new medical term- should I start reading any new books
then?" Him ,after a pause "OK but maybe not War and Peace"
This condition,
results also in water retention, and disguised the fact that I had probably been
developing PC for some time possibly years - maybe it already existed at the time
of the osteomyelitis diagnosis.
My 2008 recurrence of bone pain led to
a fob off until I told my GP I would not leave the surgery without some serious
pain control and specialist appointment. The referral, because of my history and
suspicion was to a leading orthopaedic hospital which resulted in a prompt bone
biopsy and diagnosis, August 2008, of prostate cancer. Subsequent scans including
MRI at the Birmingham Cancer Centre showed that the cancer had spread to the pelvic
region, upper thoracic spine with deposits on the lymph nodes.
The notice
at Birmingham read "Birmingham Cancer Centre" in huge letters but to me, dragging
myself in, severely drugged with morphine etc it simply said "you've got cancer
and you're going to die very soon "
There were no options given, no alternatives
explained by the kindly but stressed Italian consultant whose command of English
did not help. I should simply embark on a course of Zoladex and some bone chemo
treatment. My GP was shocked and actually said that I must have been really bad
in an earlier life. When I suggested - perhaps even in this life, he retorted
"Oh no - it says here that you have never smoked!! which was true .
(To
be continued as I am now knackered, partly from the memories, partly from the
effort and possibly by the hour and red wine ,supped of course purely for its
anti-oxidant properties)
Later:
This is a continuation of my initial story.......I shared the earlier medical
history as I believe, from my experience, that medical conditions/symptoms can
overlap. Tunnel vision by us or our medical advisors can easily occur in these
circumstances, often resulting in an important or main issue being missed.
An
analogy I would draw of this is the airport metal detector. You go through and
when the alarm is triggered you surrender your pocketed keys to the guard. You
expect this to be the end of the matter but oh no! as you are forced back through
the device just in case you still have something dodgy on your person. So why
did I and my advisors assume (ass-you-me)that because one condition was confirmed,
none other existed?
For
almost a year prior to my 2008 PC diagnosis, I had been planning to walk across
northern Spain, via the Camino de Santiago, from the French side of the Pyrenees.
When I got the "bad news" I declined immediate treatment and set off on my journey
as soon as I could get a flight. The only way that I could carry my light but
still 8kg pack was through massive doses of painkillers including immediate and
slow release morphine. A quarter of my payload consisted of 5 weeks supply of
these drugs plus heart medication and vitamin supplements "D" and "C".
My
interest in the Camino was not because of its history of religious pilgrimage
but mainly for its earlier Celtic roots and routes plus the scenery and promise
of autumn sunshine without the heat of southern Spain and getting my head together.
What I did hope for was that the Camino, having been a conduit for positive thoughts
and prayers over more than a thousand years, in conjunction the positive thoughts
and prayers of my loved ones ,aided and abetted by relaxation exercise and sunshine,
would help rally any internal and external strength that was there for acceptance.
I
was not disappointed.
In
the first two weeks I experienced a tough and painful journey including torrential
rain and storms through the Pyrenees but that did not detract from the heady pleasures
of unspoilt forests, simple villages and miles of ripening corn and vineyards
in Navarro. The kindness and encouragement of strangers of many nations but especially
local people was uplifting and will never be forgotten.
On
reflection I must have looked like "death warmed up" at that stage. This seemingly
endless, mostly alone, slow trudge, turned out to be a wonderfully soul searching
and meditative process. All the time I was visualising the cancer being beaten
and opening up to the possibility of that success.
In
the medieval town of Estelle I was physically guided by some clergy of the Cistercian
church of San Pedro, without request, to the cloisters where I sat alone continuing
the thought processes of my journey. After a while I was just filled with such
a feeling of tranquillity that I had never experienced in my 63 years and tears
of relief flowed silently down my cheeks. I cannot explain this phenomenon or
the fact that after immediately discontinuing my pain control, I was totally pain
free after two more days walking and the pain has never returned.
I
continued my pilgrimage to Santiago de Compostella with much gratitude, a new
spring in my step and then on to the unimaginably spectacular coast at Finisterre.
On
my return to The Birmingham Cancer Centre in November, no one could explain why
in three months without treatment my PSA could reduce from 299 to 99 . Nevertheless
I was persuaded that the level was still far too high and eventually in December
I agreed to a first stab of Zoladex and two 15 minute sessions of "bone chemo".
Within two weeks my PSA was 3.5 and by March 2009, just before my second jab of
Zoladex, it was 0.50.
I
then concluded that the treatment had satisfactorily reinforced what my body had
already started and declined my June and September stabs. In October though I
was nagged by my GP into resuming treatment which I did in November as my PSA
result from earlier that month showed a rise from .5 to 1.8 in only two months.
I still don't know the significance of the two numbers on my results report. The
printout reads :- "total PSA level 1.8 ug/L < 4.5 "
I
searched out YANA when I recently learnt from a news report that Zoladex could
be detrimental to people like myself, with a serious heart condition. The report
was based on a study recently concluded by researchers at Kings College London.
Only then was I alerted to other possibly more suitable ADT drugs.
Based
on this new information, my treatment experiences and PSA fluctuations my gut
feeling is that I would be better off on another ADT drug and probably intermittently.
(the name escapes me at the moment but the one that prevents attachment of testosterone
to the prostate cells rather than Zoladex which prevents production of testosterone,
which the heart benefits from ). [David is
likely referring to Casodex or Eulexin see Hormone
Therapy for Prostate Cancer ] I have also experienced heart
incidents in the past 6 months and had recently to drag myself out of a black
hole of depression.
I
think that the alternative ADT therapy is likely to assist in all these areas
and will discuss the options at my next oncology appointment in January. I shall
report back fully then but in the meantime post my experiences and findings in
respect of nutrition for PC sufferers.
Cheers
Dave
Later:
I am a "foodie" and keen cook and so not surprisingly I consider my diet as an
important part of my treatment. Whatever we all think about the scientific basis
of our nutrition, if we believe it is effective it probably will be.
As
it happens there is a lot of evidence out there that certain nutrients will help
our cause. As a result of my reading and conclusions I incorporate the following
into my daily diet and because I am the cook , most of it into the family fare.
It is very easy to do:-
COOKED
TOMATO AND GARLIC easily incorporated into sauces,soups (hot and cold) and occasional
bloody marys.
WALNUTS
are added to cereals or as drink snacks.
TURMERIC
is added to sauces curries etc and yellow bread, pasta rice and potatoe are very
common in our house.
COCOA
is drunk instead of coffee and made with SOYA MILK which is also used in breakfast
cereal
85%
COCOA, DARK CHOCOLATE is a regular treat.
GRAPESEED
OIL is used in light frying ,grilling etc.and included in bread making.
BREAD
however is the simplest way I incorporate a variation of ingredients into one
staple and this is so easy with an electric bread making machine. Typically in
a wholemeal loaf I add turmeric, softened garlic, grapeseed oil and often tomato
to the basic ingredients. The result is delicious, unless you eat it with strawberry
jam.
I
just imagine it all in the front line of my war on PC ,seeking out those free
radicals and causing any recalcitrent cancer cells to self-destruct. Additionally
I take VITAMIN C as a frequent cool drink plus VITAMINS D,E amd SELLENIUM.
Now
this may not have a complete scientific foundation but I'm pretty sure it won't
do me any harm and the psychological benefit of my self-help I just know will
improve my lot.
Cheers
for now Dave
My
sincere thanks to Terry Herbert,this site and the kind and encouraging people
who have e-mailed me since I posted my experience .
David's e-mail address
is: gasworkswharf@yahoo.co.uk
