Patrick's
health before November 2013,
Last Edited 2018....
meye ee-mayel arddress
Other links to my previously posted information:-
March 2014 to November 2014
November
2013 to March 2014
December
2012 to November 2013
November
2012 to December 2012
September
2012 to November 2012
August
2012 to September 2012
May 2012
to August 2012
April
to May 2012
March
to April 2012
February
to March 2012
January
to February 2012
November
2011 to January 2012
September
to November 2011
October
2009 to November 2010
March
to September 2011
November
2010 to March 2011 about radio-therapy.
Previous History.....
7 NOVEMBER 2014.
Psa 0.32 on 30 Sep 2014, down slightly from 0.4 on 4 August 2014
when Psa had doubled from prevous 0.22.
Adhering to strict diet of raw vegetables, and protein equivalent
of an egg a day with very low carbohydrate, no
sugar, no wine, chocolate etc, etc. I increased dose of apricot
kernels from 24 per day to 72 a day.
I've reduced cycling from about 250km a week for last 4 years to
about 150k, and lowered speed because
of knee pains just like I had in 2004. Knees had acute pains in
June, July, but have improved slightly. I will be
continuing ADT until Psa declines further and may have ADT pause
to see if Psa rises without testosterone,
which is now < 0.5 in a normal range between 8 and 38 units. If
Psa does not rise much it means cancer cells may
not be progressing.
Private clinic Woden Orthopedic surgeon offered me dual TKR for
about $30,000 in 8 months time and oncologist
thinks cancer is not spreading so I could have the operation if I
wanted to. But I am not disabled enough yet.
I want an arthroscopy first, which orthopedic surgeon said would
be a waste of time, but docs said that before
last arthroscopy when they did a minimum which was supposed to
last 2 years before knee joints were to be put in,
but I've managed 9 years and done 97,000kms and can still ride, no
bow legs, and X-rays similar to 10 years ago.
Long term effects of radiation are due. No incontinence, bowels
not bleeding much, so life is still wonderful.
I got weight 88Kg in June to 84.0Kg at October, stayed at 84.0 Kg
for a month and I have BMI < 25.
Resting HR is 46, all not bad.
My favorite cycle ride is Watson to Tuggeranong, twice a week plus
other short rides. I had become the oldest
in my previous 'Pedal Power Wanderers' group. I often had more
speed in the last 20km of an 80km ride.
I've ridden a total over 200,000km, and been with many ride
groups, and virtually not made a single friend who
remained friendly during times when bad health prevented me riding
with them.
I must rely on myself away other people.
Knee pain was terrible between June and August but this last week
there was hardly any pain and no need for
painkillers, and I am slowly repairing damage from too much
distance and too many steep hills without a low
enough gear on bike. I won't accept the surgeon's offer for knee
replacement in 8 months. He did say I would beg
for new knees. Not yet.
My daily diet :- Breakfast, 24 apricot kernels, 1 Litre green tea,
2 small apples. Morning tea, green tea and 1
small apple, Lunch, salad sandwich or bowl of laksa+noodles once a
week with green vegies, tofu. Being nearly vegan,
I don't lust for the other dishes with red meat and white rice. 2
small apples, green tea, 24 ap-kerns. Afternoon tea,
green tea, apple. Dinner 5:30pm, bowl of raw chopped kale with
olive oil, turmeric, slight salt. Bowl salad of
lettuce, parsley, tomatoes, red capsicum, cabbage, olive oil. 2
eggs, or some tofu or fish. NO red meat.
Green tea, 2 small apples, 24 ap-kerns. Supper. 4 apples between
6pm and sleep at midnight with no drinks.
Been like this for many months, and when I changed to more
mainstream diet during 3 trips away for 2 days each
during June to help my sister clean out Mum's house. I felt
terrible, and put on 2Kg.
I have a definitely Queer And Strange diet - yet another thing
stopping me ever getting married, besides old age,
being frugal, being a cyclist, being poxed up with cancer, being a
non believer in 1,001 things.
----------------------------------------------------------------------------------------
15 AUGUST 2014.
I saw my oncologist yesterday to discuss Psa doubling and general
medical condition. He said Psa rise from 0.2 to 0.41
is within the range of variations which can occur while prostate
cancer growth is being limited by ADT injects every 3
months. He said if Psa continues to rise injects will nb monthly.
In other words, use same drug, but monthly. I can't see
how that will work betterm and doc has blind faith. It is not his
fault my cancer is not responding any better than it is.
Last injection of Lucrin left me very sore and nearly crippled
with pain for day after. Was worst injection pain so far.
But 3 days later I was able to cycle 30km, then 60km next day on a
fairly hilly course with 30 other ppl and I was
fastest overall, but 2 were quicker up-hill. This bunch are mostly
very slow cyclists who might average 19kph
while I would average 24kph over the same course. I much like them
all, with 1/3 being females. Afaik, all F are married.
But not much "affinity" with them. I really do enjoy riding alone.
No stated or unstated personal agendas to cope with.
I need to re-examine the idea of getting cannabis oil to try to
beat Pca. I am thinking about
http://www.cureyourowncancer.org/dosage.html
But I I must remember that it may not have any effect and that Psa
will rise relentlessly which will indicate Pca is going
to kill me. I have only had 14 months of ADT. Pca suppression
after June 2013 when Psa rose so quickly from 0.08 in
July 2012 to 8.0 in May 2013. My Psa mocked the doctors, and they
really had no answers for me.
5 AUGUST 2014.
The latest Psa result today gave 0.41, which is twice the last Psa
reading of 0.2 at 7 April 2014. This indicates a
doubling time of say 3 months, and by August 2016 Psa could be
over 50, and that would indicate I was very sick indeed.
I was told at the beginning of ADT that the suppression of Pca is
not permanent. My rising Psa means beginning of failure
of ADT, and I could be lucky to get to 70.
For last 2 months, increased knee pain, have reduced cycling to
less than 150km a week. I've had knee MRI and X-rays,
and expect to be told I need two new knee joints. But that is a
big operation, and I am under effects of Aclasta which
slows bone renewal, and since Pca looks like it will increase and
spread, a major disturbance to femurs and tibia may
give a nice place for Pca to begin in my bones. I see an
orthopedic surgeon in 3 weeks to discuss options. I'd like to get
an arthroscopy to tidy up loose junk and clean up inside my knee
joints. I then might be able to walk further than 200
metres without pain and as slow as someone 95. I had the last
arthroscopy in 2005 when I had the same limitations and
pain when walking. But after arthroscopy I was able to manage a
couple of kilometres slowly.
When I stopped the Voltaren tablets, only 2 per day, my resting
heart rate became irregular for the next 3 weeks.
-------------------------------------------------------------------------------------
12 APRIL 2014.
Psa test last week 0.20ug/L. 23% decrease on previous Psa test
about 3 months ago. See the Psa graph which includes
latest Psa result. I did get an infusion of Aclasta at end of
March 2014. This infusion of 100mls contains 5mg of zelodronic
acid which is said to be a one year dose to try to halt rapid bone
density loss, ie, rapid onset of osteoporosis. The infusion
took 20 minutes at a clinic where the clear solution is fed into a
vein via cannula needle. There was no pain, and I was able
to ride 15km back home. Next day I felt fine and rode 75km in a
normal length ride, but I felt slightly tired at the end.
That night when I tried to sleep, I began having fever symptoms of
shivering and feeling cold, even with extra blanket
and electric blanket. That lasted about 3 hours, and finally I
slept and next day I felt tired but OK. I seemed to fully
recover after 10 days and my average bike speed plus ability to
ride 90km+ is just fine. I had flu vaccination a week
ago and apart from a tiny ache at inject site, I feel fine.
The guy doing the zelodronic acid infusion said there would be
some fever within 24 hours, and then I'd be OK after
another 24 hours, seems he was about right. For 4 days after the
infusion I felt minor aches and pains including in my
lower jaw. A side effect of zelodronic acid is jaw necrosis in
less than 2% of patients, and if they are given this once a
month to prevent Pca from spreading to bones.
But, just what is the zelodronic acid doing? If the bone thinning
is halted, then bone replacement is slowed, or halted,
so it seems to me the bones seem to just become passive, without
bone loss or reconstruction or correction of problems.
All cells in the body die and are replaced. The process goes on
lifelong, but becomes less effective as we age.
And bone loss becomes greater than bone cell replacement, so net
bone density reduces. But if bone replacement
activity is halted, then what of the bone quality? Do bones become
fragile anyway? What happens if I break a bone now?
does it heal? Well, I ain't going to curl up into a little
frightened ball because of unanswered questions. Docs say bones
stay strong and reduce risk of fractures. Most online info agrees.
So no need to panic. The purpose of the ONE dose for
12 months is to halt the extra bone loss over normal, and allow
normal bone ageing to "sort of continue".
--------------------------------------------------------------------------------------
I thank those I have met online and who have emailed me to share
their thoughts about Pca. I did very happily attend 3
meetings with the Canberra Prostate Support group in 2013.
http://prostate-cancer-support-act.net/
My course of my treatments was determined during 2010 before I
contacted the group and I think the contact improved
my mental condition to better face the future.
Many stupid people are saying the Psa test is flawed, and those
who have regular Psa checks don't live any longer than
those who don't. But if I had ignored my Psa tests I would be a
very much sicker man than I am now.
Some very sobering facts about prostate cancer can be found at
this website in UK and which seems more informative than
much originating in USA.
http://www.cancerresearchuk.org/about-us/cancer-news/case-study/study-finds-prostate-cancer-tests-underestimate-disease-in-half-of-cases
http://www.cancerresearchuk.org/about-us/cancer-news/press-release/new-imaging-approach-fast-tracks-drug-testing-for-incurable-prostate-cancer
http://www.cancerresearchuk.org/about-us/cancer-news/news-report/genetic-variation-predicts-behaviour-of-prostate-cancer
http://www.cancerresearchuk.org/about-us/cancer-news/press-release/new-kind-of-scan-finds-cancer%E2%80%99s-sleeper-cells
HERE IS A SUMMARY OF MY PROSTATE CANCER UN-HEALTH SINCE 2008 :-
I am one of thousands of men who must live with Pca.
1. My symptoms of disturbed urination came on over 1 year before
diagnosis in late 2009.
2. I'd had regular Psa testing for previous 12 years, and Psa just
went over 5.0 when I sought out a urologist for
investigation.
3. A biopsy revealed a Gleason 9 tumour, which was very bad luck.
4. 4 months later, open surgery was attempted and Psa was 8.0.
Surgery was abandoned because doc thought it would have been
ineffective and there was a risk of "spill", ie,
surgery can spread cancer. I was in the less than 1% of men where
this occurs. Specialist surgeon does 100
prostatectomies a year.
5. The surgeon referred me for radiation 7months later and
combined with hormone therapy for 2 years starting right after
failed surgery.
6. After 2 years the HT ceased.
7. There was a large rise in Psa to 8 again within 6 months and
EBRT and HT was thought to have been to be ineffective
at stopping the progress of the cancer.
8. I've been back on HT since June 2013 and graph shows Psa at
0.20 at April 2014, a slight reduction from 0.26 in
February 2014. Psa could start rising any time if cancer changes
to being able to grow despite HT blocking production of
testosterone.
There is some possibility that the EBRT was not entirely useless,
and that its effect on destroying cancer cell DNA may in
fact bring cancer regression over a longer time span than doctors
expected. However, EBRT may also just alter cancer
cells to become something more virulent and more likely to not
respond to any future treatment when the HT becomes
unable to hold back the Pca progression - something that is most
probable. There have been about 5 new drugs invented
and approved for Pca within last few years but none offer a cure,
and all give only a brief extension of life with a huge price
attached. So OK, I must learn to die when the time comes.
Meanwhile, I am quite happy, continuing to cycle 250km+ a week and
I enjoy living.
--------------------------------------------------------------------------------
NOVEMBER 2013 to MARCH
2014.
Previous History....
2009 to April 2010. Psa 6.3 to 8.0. Prostatectomy attempted
4 April, but abandoned during surgery because of too much
local cancer. No spread of cancer was found. ADT begins April 2010
with Eligard for following 2 years. Side effects after
2 months were hot flushes, and loss of strength and 3kph loss on
average speed on bicycle, less sex activity.
April 2010 to December 2010. Psa 8.0 to 0.25. EBRT in December
2010, and continued Eligard. Dec 2010 to April 2012.
Psa 0.25 to 0.067 ( estimated lowest ). Bone density begins to
decline by 10% during first 12mths of testosterone reduction.
July 2012. Psa 0.08. After ADT paused in April 2012, testosterone
rises to 20 units within a normal 8 to 38 unit level.
July 2012 to May 2013. Psa rises from 0.08 to 8.0 - an alarming
rise of Psa after the treatment ceased. I wrote a letter to
my urologist when Psa went to 6.5, and free Psa % indicated cancer
was growing. He agreed with me that my cancer
appears to have have become a "recurrence" and that cancer has not
been cured and that treatments so far have been at
best partially effective. He said my Psa should have only reached
up to 2.0 after ceasing Eligard, then begun to decline.
My urologist referred me to an oncologist who put me back onto ADT
Eligard in May 2013 to suppress testosterone
production "for the rest of my life," or for as long a time as it
works to stop Pca growing. Oncologist said no cure was possible,
and when Eligard failed, other drugs could be used to extend my
life but with higher costs and greater side effects.
He agreed I might live for 3 to 10 years I suggested. I have
weight gain from 84Kg at end 2010 to 88Kg at June 2013.
But I continue cycling an average 225Km per week. Occasional
bleeding from the bowel begins September 2012, I am
given colonoscopy, found to not require surgery, no cancer found,
and now bleeding is much less often.
May 2013 to July 2013. Psa falls from 8.0 to 0.26 in 8 weeks.
Oncologist is happy and then suggests that intermittent use of
Eligard might be possible after 18 months so that I can get a
break from Eligard beginning in about November 2014.
So how come the reduction of Psa has been so rapid over these 8
weeks? Nobody has given any answer to this question.
Lifestyle changes after May 2013 include a change to vegetarian
diet, and including 35 apricot kernels per day. These contain
amygdalin which may or may not affect the growth and spread of
cancer.
Between November 2012 and May 2013 I had two total body CT bone
scans which did not reveal any spread of cancer.
But I could have Pca in bones mets so small they cannot be seen or
noticed.
May 2013. I also began 20 minutes of daily Yoga. This has given me
less backache and knee pains, and greater peace of mind.
July 2013 to September 2013. Psa 0.26 to 0.22 over 7 weeks. Slight
fall in Psa. Not as much as hoped for. Weight loss for
May 2013 to September is about 2Kg down to 85.4Kg. comprehensive
blood tests are not alarming.
I declined the offer for an infusion of zelodronic acid, ie,
Zometa which is a chemical that acts to reduce loss of bone
density.
I have been taking a Eagle Products "bone matrix" product which is
said to include calcium phosphate and other minerals
needed for bone growth. I may take Zometa in early 2014. Zometa
has possible life wrecking side effects. There are
contradictory claims online about Zometa and its effect on
preventing bone metastasis with Pca.
November 2013. Vegetarian diet reduces weight from 88kg in June
2013 to 84.5Kg at November 10. This is a loss of
21 grams per day, maybe the weight of a desert spoon of sugar.
Loss of 3.5Kg is welcome. Testosterone now 0.5 units, and
I worry this is not low enough to stop all tumor growth. Average
bicycle speed rose about 2kph after September 2012,
and hot flushes ceased when testosterone level became normal.
Bicycle speed has declined very slightly since last year while
on the second course of HT. Probably the loss of weight has offset
the weakening effects of HT. For all of winter of 2013,
my average cycle distance was 250km a week with 300km+ on several
weeks.
January 2014. Psa 0.26 at January 7 2014, oncologist happy with
the Psa remaining at the low level of 0.26. Lucrin ADT
to continue, each 3 months. I was able to explain my reluctance to
be given an infusion of Zometa, which can have serious
side effects.
During last November I spoke to the radiologist who had treated me
and he said Zometa was not as bad as indicated and
that it did work to stop osteoporosis caused by castration drugs.
I had then changed my mind and would agree to have
Zometa if it could be given in monthly injections so that if there
were bad enough side effects I could quit the injections to
lessen side effects. But my oncologist corrected me by telling me
that the Zometa was to be given as a 4mg dose which is
the very small amount needed to halt bone density loss over 12
months. Were I to have monthly injections they all would be
4mg so yearly intake would be 48mg, and that is when the
possibility of side effect of jaw necrosis rises to 2% of cases
treated this way. So the 4mg injection would not hurt me.
I was changed from Eligard to Lucrin which was injected to the
main rear right leg muscle I use to power my cycling.
The injection caused some pain on the day it was given, then pain
subsided. 2 days later I rode 50km, and pain increased,
so I waited 3 more days and pain subsided and the next ride was
OK, with no apparent loss of average speed.
Subsequently I have had no pain from the injection site and on a
hot Sunday a week ago I managed 27kph average and
was quicker than the 17 others in my cycle group. Some are 8 years
younger. A link about the history of hormone therapy....
http://www.medscape.org/viewarticle/438957_4
------------------------------------------------------------------------------------------------
So, there is the summary of what's happened so far.
The Dalai Lama once said meaning of life = "There are two things,
be useful, and be happy." The first becomes increasingly
difficult as we age while everyone seeks to ignore us. The second
is up to us alone, and its the real tricky part.
Last October 2013, I attended the ACT Prostate Cancer support
group meeting.
http://prostate-cancer-support-act.net/
The doctor who attempted my surgery attended to give a lecture on
the latest MRI techniques which aid the biopsy
process so that less core samples are needed and biopsy outcome is
more accurate. He also described a video
showing a robotic prostatectomy. He said he did 100 prostate
operations each year. During Q&A which followed,
he said he'd had only 6 cases in his career where surgery was
begun, but abandoned because of tumor size or other
complications.
There was a man of 51 who has just been diagnosed with Psa
58 at the support group meeting. So regular Psa tests
are MUST.
So I am among the tiny percentage of cases where my Psa did not
rise to a high level, yet I had very bad cancer with
Gleason 9 score which has a low 10 year survival rate.
IMHO, if you have a Psa which has reached 3.0, try to get an MRI
and biopsy. One man emailed me to say his Psa
went to 2.8, but his doctor insisted a biopsy and Pca was found.
His Gleason score was 6, and he went right ahead
with surgery.
I know two men who had robotic prostatectomies, and after a few
years with Psa < 0.04, the Psa began to rise
indicating cancer has recurred. One had all my HT and RT treatment
and the other is getting used to the news about
his rising Psa.
If you have Psa = 0.05, and it doubles to 0.1 in 3 months, it
means doubling time is 3 months. After 1 year Psa will rise
8 times, so after 1 year it is 0.4, 2 years 3.2, 3 years 25.6, and
so it does not take long for cancer to get a hold.
Cycling well, average speed between 24kph and 28kph for all of my
rides which average 75km each.
I ride 3 times a week and have averaged 11,000km per annum for the
last 7 years.
During my rides around the town I much enjoy the cafe stops, and
the meetings with cafe staff, and I always try to
be humorous about everything. As Oscar Wilde said, "Life is too
short to be serious".
About my small amount of Yoga. There are different types, and
Hatha Yoga suits me, because it stretches muscles
and ligaments and calms me.
A good article on hormone-refractory Pca is at...
http://prostate-cancer.org/hormone-refractory-prostate-cancer-a-continuum-of-diseases-and-options/
For those interested in alternative therapies for Pca I have more
info at Past history and I
include links to apricot
kernel active ingredient amygdalin, and cannabis oil. Cannabis oil
is subject to research to find if a synthetic and legal
product can be made which may become a cheap and good therapy.
Rather than say too much about alternatives now, Google amygdalin
and cannabis yourself.
Nothing else I ever found holds any hope for an alternative cure
for any cancer.
24 December 2012
to November 2013
Here is a summary of past events since 2008.
January 2008. I get symptoms of prostate gland enlargement, more
frequency of urination, and needing to wake up at
night for a leak. I had seen my father die from untreated melanoma
in 1973, one sister from ovarian cancer in 2005.
My remaining sister had a double mastectomy about 4 years ago. I
was waiting for my turn to get cancer.
I had had Psa tests for many years "to establish a base line".
Nothing indicated rapid Psa increase until 2009 when rise
was from 4 to 5. My Psa was within a normal range of 0.5 to
5.5ug/L. I explained my fears to my male GP of my age
said to me "You are too healthy to get cancer."
I began seeing another GP at the same clinic, a lady of 40, who
seemed more focused. She gave me a digital examination
which seemed to go on for 20 seconds, quite a pleasant experience.
This confirmed my PG was swollen, but no hard lumps.
At 62, I could cycle faster than 99% of other men my age and over
a longer distance, and BMI < 25, resting HR < 50.
September 2009. Psa moved higher and GP referred me to a local
urologist and surgeon who had operated successfully
on a friend and who had a good reputation. I had to wait 6 weeks
to get an appointment, and then another month for a
biopsy. December 2009. The biopsy gave 9 positive samples out of 9
taken, and cell type was "aggressive, and young man's
kind of cancer." A robotic prostatectomy was proposed. This bad
news was given on Dec 24, and when much of the
medical system shuts down for 2-3 months.
But in addition to Pca, I had a kidney ureter constriction problem
which may have been caused by cancer so the robotic
op was cancelled and open was planned to allow fuller inspection
of internals.
April 2010. Finally I get to the operation. But the docs decided
they could not remove PG because cancer had caused too
many "adhesions" and the risk of "spill" was too high, ie, they
felt the surgery would do more harm than it would avoid,
so after taking many tissue samples for testing they sewed me back
up. It seems my cancer was too advanced for surgery.
I was to spend 5 days in hospital in recovery, but 3 days later I
escaped from the hospital after a terrible recovery
time being cared for by the worst nurse on the planet, a real
bitch of a woman, about 35 who expected me to be up
and dancing in the corridor within 24hrs.
At day 2, when I did attempt to slowly get out of bed without any
assistance from anyone, I had the most terrible
spasmodic pains. I collapsed to the floor screaming in pain. The
bitch walked away and left me alone. It was no use me
sending a report to head office about that gross negligence;
nurses would deny it, say I was drug affected etc.
But apart from that bad luck, during 3 other previous stays in
Canberra Hospital, the nursing staff were wonderful.
During the 3 day shortened stay I was told I'd be given hormone
suppression therapy to shrink the tumour size down
to make it a smaller target for radio therapy which would happen 6
months later. I was told a cure was very likely.
But I saw no cause for optimism. No Pca spread had been detected
away from PG, although it had begun to grow
outside the PG capsule.
But because it was not detected, it did not mean there was not
distant spread.
I concluded I must have had the Pca for maybe 3 years at least
before Psa went high enough to cause worry.
December 2010. After nearly months I start a full course of 35
radio therapy sessions, which took me into
2011.
Psa had fallen before the EBRT due to effect of castration drug
Eligard. I After EBRT, I continued with Eligard
for another 18 months, for a total time of 2 years.
July 2012. The effects of the 2 years on Eligard were due to stop.
Eligard injections had happened at 3 month
intervals, but the effect lasts maybe 6 months, but the docs like
to make sure no gaps occur in ADT so injection
effects overlap. My Psa had gone down to 0.08ug/L last July, and
this was considered to be the "nadir" or lowest
point reached after the treatment. It was expected that some Psa
rise up to 2.0 ug/L could be expected within a
month or two after the ADT stopped. Then the Psa should have begun
slowly reducing towards zero which would
indicate Pca has been halted.
The planned follow-up meeting at hospital urology dept was planned
for July 2013.
After Psa nadir was reached in July 2012, my testosterone began to
rise. I discussed it with my GP and asked to
get more Psa tests to track Psa rise and measure testosterone
levels. I became quite upset by the rise of Psa by
March 2013 and my urologist said Psa should have only risen to a
maximum "bounce" peak of less than 2.5uG/L
and then begun to reduce slowly as cancer cells died out due to
radiation effects on DNA.
April 2013. I was referred to an oncologist who saw me on May 8
and gave me scripts for Cosudex and Eligard.
I began the Cosudex on May 8 and had a Psa test which yielded
7.9ug/L. Three weeks later in the 1 month course
of Cosudex, I began Eligard injections, in late May 2013.
July 3, 2013. Psa 0.26ug/L. My oncologist was pleased with
my reaction and has indicated I may be
allowed to stop Eligard in 18 months time and to re-evaluate
treatment. I will be seeing him every 3 months.
He also said I would be given Zometa, which is zoledronic acid
when I next see him. I have just read the paper sheets
about it and it looks scary, especially in regard to possible
jawbone necrosis. The drug is NOT chemo therapy,
but is given to slow metastasis of cancer in bones and to prevent
the reduction of bone density due to lower
testosterone levels. I have had total body bone scans last week
which showed no metastasis of cancer anywhere.
But my bone density has gone slightly less than normal, so my
radiologist told me. But he said young elite cyclists
and swimmers often have bone density well below normal, because
the majority of their exercize is done without
bearing weight on bones because cyclists sit on their bikes and
swimmers are suspended in water.
So I am not sure about taking Zometa.
There are many links to zoledronic acid, eg,
http://voices.yahoo.com/treating-metastatic-prostate-cancer-zoledronic-8593267.html?cat=5
Since I began Eligard, I have been eating 30 apricot kernels a
day, with dose spread out over the daytime with 3
intakes of 10 kernels with cup of green tea or food. I eat 8
apples a day and chew all the seeds.
The apple seeds and apricot kernels are said to be a natural
killer of cancer cells. But I don't know if this is true
for everyone, or for every type of cancer The amygdalin content is
absorbed into bloodstream and from there the
it is allegedly absorbed into cancer cells where it is digested by
the cells to release the cyanide content of amygdalin,
which kills the cancer cells. Mainstream medicine does not agree
this occurs or is possible and a search online shows
that amygdalin is useless and the refined form of it known as
Laetrile does not work and clinics in USA based on
Laetrile have been banned. But not in Mexico.
More about apricot kernels below.
September 4, 2013. Psa measures 0.22 ug/L.
Side effects of treatments and lifestyle changes, 2010 to
September 2013.
Eligard Side Effects. When I first began with Cosudex for 8 weeks
then Eligard, hot flushes began
at about 3 months and continued for the next 20 months. I would
get 3 HF a day but they lasted barely
4 minutes and have been easy to tolerate.
At present during this second course of Cosudex and Eligard I have
not had any HF yet, but probably
they will start again.
Radiation Therapy side effects. For 12 months after RT my bowel
regularity became irregular with and loose
motions and urgency, and slight feacal incontinence. But I only
once lost a bum load of poop during a ride when
I once stopped for a piss, to find I could not prevent myself
pooping. OK, I washed, rode home grubby, but I
was alone and that was the only shit accident I've had. Bowels
later improved towards normal. But in July 2012
I began to bleed out the bum while shitting. It is not considered
life threatening, and occurs with 50% of Pca
patients who have EBRT for Pca. The radiation X-ray beams are not
tightly conformed like a laser light beam,
but spread out like light from a torch.
In Feb 2013, a gastric specialist performed a colonoscopy and
found no cancer and no easily identifiable sites
from where bleeding was occurring. He offered me a cauterizing
operation later if bleeding became a lot worse.
It increased slightly in frequency during months to May 2013 after
which bleeding began to become less frequent
and by September 2013 is quite rare. I may not need any
cauterization.
Bone density reduced 8% after the first 12 months on Eligard 2010
to 2011, without taking any "Caltrate" which is
a calcium supplement and no vitamin D, because nobody said I
should. But I'd begun with higher than average
bone density, so could afford to lose some bone. As soon as bone
loss was found, I began taking vitamin D pills
and calcium supplements to try to prevent further bone loss.
My last BD scan was July 2, 2013, and I was told BD had declined
slightly, and oncologist said it would continue
unless I took Zometa, which is zoledronic acid, or some other anti
bone loss drug that can have horrible side effects.
I am taking Eagle product "bone matrix" which has many minerals
needed by bones, not just calcium carbonate,
and I take vitamin D and I want to postpone Zometa by at least
another 3 months. and maybe have another BD
scan which is not a huge CT scan to have.
My cycling activities between 2007 and 2013 have been continuous
except for minor interruptions, eg, for abut a
week after biopsy, and for a week after each of 4 uretic stent
installations. But after each of these minor events I
built up distances and I have averaged over 10,000 kilometers a
year.
I cycled 40km to and from hospital for radiation for first 2
weeks, then I became too sore in lower pelvic region I
just swam for 20 minutes each day, and gave up the bicycle. There
was high when passing water. No pills or
anything I ate helped. But within 2weeks after RT I began cycling
again. My testosterone was at very low levels,
perhaps lower than achieved by surgical castration, while having
Eligard injections every 3 months. Average cycling
speed diminished by 3kph but desire to ride fast also diminished.
But speed isn't everything, and I continue to ride
200km+ a week.
After testosterone began to return to normal levels in late 2012
when Eligard action ceased, my average cycling
speed increased up to 2kph despite being 3Kg heavier than when I
was diagnosed in 2009. The increased speed
meant I was generating more power. But I had month off bike with
bad backache which may have been caused
by muscles upsetting a weak spine. But I also had not been doing
any Yoga or accompanying sit ups to strengthen
stomach muscles. But August 2013 cycling speeds have been
sometimes faster than last year. During winter 2013,
I have returned to cycling with the "slow group" in Pedal Power
despite some freezing morning starts at 8am.
My typical average speed on north Canberra country roads has been
26.3kph, and I have been the fastest rider
in my group. I could ride with the Intermediates, or Fast group
but they go a longer distance, and the social mix is
just mainly wall-to-wall blokes obsessed with speed and stuff
about bikes, and no ladies. The slow group has more
ladies, and a couple of them are nearly able to keep up with me,
and they have my respect for their commitment to
fitness. So few ladies are anywhere near fit.
Weight gain. Before my EBRT Pca treatment began in 2010, I bought
a electronic scale made in China because it
could accurately read weight to within +/- 0.1Kg, ( or +/- 4
ounces ).
I've kept a daily diary since 1963 and its now quite a stack of
exercize books. But my records of weight were not
of huge interest until 2006. I found weight had increased from
84Kg in 1993 when I quit cycling to 102Kg when I
recommenced cycling in 2006. The extra 18kg was making me slow,
and unfit, and angry about it. I had been 82Kg
at my very fittest condition at 40.
I then worked as a builder and rode in weekly cycle races with the
Canberra Cycling Club and I recall some weeks
I rode 600km to train up for the races. My weight then was 82Kg,
and with height at 1.870M, my BMI was 23.5, a
nd I guess that was my ideal weight. I did once diet down to 78Kg,
and found I climbed hills faster but lost time on
flat roads, so I'd lost power, so I allowed myself to be 82Kg.
In 2006, when I returned to cycling after a 13 year gap I was
102Kg. But after 8 moths in 2007 I was 83Kg.
This went up and down +/-1Kg up to December 2010 when I had EBRT,
and I was I was 84Kg. Weight climbed to
86Kg during following 18 months, then leveled and when
testosterone returned in August 2012 it went to 88Kg for
awhile. I couldn't stop eating. But by November 2013 I was 84.5Kg
and aim is to get down to 83.0Kg by December
2013. The electronic scale reads weight to nearest 0.1Kg, or 4
ounces, and does not tell you lies, or allow you mind to
dismiss weight gain as "fluid retention" or an aberration. I weigh
myself each morning naked out of bed. I also weigh
at the return after a ride to estimate fluid loss. I am not
obsessive about weight, but unlike so many other fellows my
age, I don't have and extra 20Kgs of fat to stop me viewing my
feet or dick when looking down.
In May 2013, I tried to reduce meat and dairy products and
succeeded. I have felt a stronger urge to limit food intake,
especially meat and dairy, and increase vegetables. Consuming less
than 1/10 of average daily meat intake of Australians
by May and then 0% meat since has done me no harm. I've discovered
chia, or quinoa, and I like it better than brown rice.
I rarely eat any high GI foods, and its many years since I ate
potato chips soaked in poor quality cooking oil, and I never
eat junk foods which comprise 95% of what is sold at supermarkets.
My sugar intake is less than 20grams daily, with
coffee bought at cafes. I was drinking 6 mugs a day of coffee but
have reduced that to less than 1 mug. I have also changed
from coffee at many cafes to black tea, and I only brew green tea
at home.
September 2013. The vegetarian diet feels good. I'm not vegans
though, and I allow Lite milk, fat free yogurt and eggs.
I quit having a large salad sandwich lunch at a local cafe on 3
days a week. I think bread seems to be fattening. I don't
bother eating a large breakfast or lunch because all anyone needs
is one good meal a day. I do have 6 apples and 5
mandarins a day.
My tip for a good life? Always place NEED before WANT, and you'll
get slim, and have ideal weight.
Instead of cos lettuce in daily salad I've switched to raw kale or
occasionally raw spinach and I have raw carrots with
both. So I now have much increased vitamin K levels. These
vegetables taste just wonderful and delicious to me - and I
never get tired of the same old diet. To make them more
digestible, I use a food processor to cut them up finely to save
having to chop with a knife or chew so much. But the large amount
is easy to digest, and is the only way to stop myself
getting hungry between 6pm and 8am next morning, a time when most
other ppl snack lots of junk and put on weight.
I allow myself a bottle of red wine each fortnight and I take 3
days to drink it. I have gone off eating 70% pure chocolate,
maybe one puts on 90 grams after eating a 100gm bar, and to get
that off with a bicycle means hours of pedaling.
Alternative therapies.
I found I could not accept there is a 100% chance of no cure for
my disease. There is always a possibility that some
action might stop my cancer.
Although the possibility of a cure is small, it is always worth
considering.
It is better to consider possibilities rather than agreeing
blindly with doctors that there is no hope.
It is better to hope at least a little before we die. If we can't
avoid dying of Pca effects, then then we may as well die
cheerfully. I am cheerful most days despite being very emotionally
deprived and socially dis-engaged and while being
automatically thought of as "just an old bastard" by the majority
of younger ppl who have yet to be challenged with
any sense of mortality.
I searched online and found a number of quack remedies and false
cures being offered. I always look for evidence
supporting the claims made. Where nothing supports claims, its
better I ignore the claims and look elsewhere.
Two alternatives are worth thinking about.
The First is consuming amygdalin, a natural chemo-therapy
substance found in many seeds and kernels of nuts.
The Second is consuming cannabis oil with an adequate amount of
cannabinoids.
I have begun eating apricot kernels in what will be a long term
treatment from last May 2013 when I re-started Eligard.
About 25 kernels a day is about enough, well chewed, and spread
out over the day. The active ingredient is amygdalin,
I suggest you do your own searches, but I have links below.
September 2013. I quickly increased apricot kernels to 30 a day.
A website of the supplier had had his kernels tested by Government
Dept because they were concerned with claims his
website made and his packaging information. The Dept measured
active ingredient amygdalin content at 1,700mg per
1Kg of apricot kernels. I worked out that there were approximately
1,800 kernels per 1Kg bag which I purchased at a
health food store for $40.
Therefore the average daily dose of amygdalin at 30 kernels per
day = 1,700mg x 30/1,800 = 28.3mg.
In addition, I eat 6 apples including all seeds well chewed and
amygdalin in apple seeds of one apple is roughly equal to
one apricot kernel, so 1mG amygdalin per apple.
So my daily amygdalin intake is about 35mg.
So the experiment costs almost nothing compared to spending a huge
sum of money at a Mexican clinic for Laetrile therapy,
outlawed in USA. Eating an excessive amount of apricot kernels can
be dangerous because the active amygdalin contains
cyanide, formed by molecules of H, C and N. But attached to the
HCN cyanide molecule, there are two sucrose and one
benzaldride molecule. But I won't fill this page with an
incomprehensible chemistry lesson.
I suggest you read up about amygdalin - before its too late to try
something alternative and well before cancer has
progressed so far nothing will stop. I might also try cannabis
oil. Cannabis oil is illegal, but many claims are made about its
curative effects on many cancers because the THC and other
cannabinoids within the oil trigger the immune to recognize
and begin dismantling cancer cells. Cancer prospers where out
immune systems don't fight it like they fight other abnormal
or alien cells all around the body.
Most ppl approach alternative cancer therapies when all treatments
have failed and cancer has advanced to leave them
with only months to live. Such ppl have been much weakened by
successive chemo therapies and RT and cancer side
effects, plus they tend to be old. So one cannot expect
alternative therapies to be miraculous, bearing in mind that
unlike
surgery, or radio therapy, they may take far longer to work. So
instead of waiting until you are nearly dead, its worth
investigating alternatives as additional therapies while you have
some time left. The ADT is not a very aggressive
treatment. Perhaps the alternative therapies may be well tolerated
and work better than expected. I can't tell you if
alternatives work until I have found proof that they have worked.
If I find that in 2 years time my Psa rises rapidly
despite present treatment and with alternatives, then obviously
nothing has worked. But if I stopped the ADT and Psa
did not rise very much at all, then the alternatives could be said
to have had a good effect.
Recently discovered links to useful info about Pca and
treatments....
I concluded the best surgery was obtainable at
http://www.phillipstricker.com.au/
But cost could be $30,000 after Medicare rebates. I was not aware
how good his reputation was
for nerve sparing and after effects and post operative care and
timely operations after diagnosis.
The high price excludes all those wishing a cheap fix will
do.
Next best might be one of Canberra's local urologists, Dr
Haxhimolla, my urologist.
While some said they had no hesitation to pay whatever was asked
for a prostate operation,
many grumbled about petty expenses. If I had had my time over
again, I would have gone to Dr
Striker and found the money. But I had a Gleason 9 at diagnosis,
and its quite likely Dr Striker may
not have done anything different to my local guy. We don't get any
second chance, and I may have
wasted the money.
The stories told by fellows at group were like those told in other
online prostate cancer forums which may
be found by Googling. Those who died were not present. It did me
well to turn up and talk with fellows
besieged by this disease. But exactly what difference does it make
to my fate? NOTHING.
I mentioned alternative therapies but nobody took the slightest
notice.
I should have been diagnosed earlier. The mild symptoms and low
Psa indicated that earlier treatment was
NOT needed.
But in fact a biopsy should have been done maybe 4 years before
December 2009.
Never ever assume your mild symptoms and low PSA < 5.0ug/L
means that
you don't have prostate cancer !!!!!!
But since June 2011, there has been a new MRI scan method which
may avoid the potentially dangerous
and painful biopsy......
So, my advice is get an MRI scan done as soon as any symptoms
indicate swelling of your prostate gland.
A well done scan can detect the presence of a tumour but not what
the cell structure of the tumour is like.
Only a biopsy can find out what type of cell type is in your
tumour if you have one, and whether it needs
to be surgically removed or radiated. I heard from a prostate
support group that Dr Striker in Sydney is
the most "on the ball" prostate surgeon about diagnosis.
http://www.telegraph.co.uk/health/8567990/A-better-kind-of-prostate-test.html
http://www.mrisusa.com/pros-cons-prostate-biopsy.html
https://www.google.com.au/search?q=prostate+cancer+mri+images&source=lnms&tbm=isch&sa=X&ei=toPTUeyPOMOTkQWHmoGoDg&sqi=2&ved=0CAcQ_AUoAQ&biw=1440&bih=641
http://www.canberraimaging.com.au/about-us/services/
June 18, 2013
http://www.cancercouncil.com.au/wp-content/uploads/2010/09/Position-Statement-on-Medical-Use-of-Cannabis-FINAL.pdf
This is from Cancer Council and is position statement on cannabis
for medical use.
There are 3 main synthetic forms of cannabis, Dronabinol,
Nabilone, Nabiximols.
The latter is the one which seems to give best results for pain
and nausea relief for end stage cancer patients.
A trial of Sativex by GW Phamaceuticals is underway somewhere.
June 10, 2013
http://apricotseeds.com.au/stop-cancer-spreading.html
About apricot kernel effects and testimonials by Gary who says it
cured his prostate cancer.
http://cot.food.gov.uk/pdfs/cotstatementapricot200615.pdf
Report on toxicity of apricot kernels and their amygdalin content.
http://www.alternative-health-group.org/amygdalin.php
List of B17 aka amygdalin found in seeds and kernels
More history, links....going back to 24 December 2012.
24 May 2013.
I was concerned that prostate cancer might kill me but I've learnt
to live with the worry.
Psa level on 8 May was 7.9, so rise over 51 days was 1.4.
PSA has remained at 8%, low, so some cancer growth is underway.
The doubling time is presently 8
months and rate of rise has slowed, but it seems increase is very
worrying, and indicates radio therapy
has not worked as well as intended.
The Psa rise means cancer is progressing and of course now I must
do what so many others do :-
Search for an alternative outcome.
I have now discovered cannabis oil ( made from marihuana seeds
from female plant flowers ) is claimed
to be a potent cancer killer. Are the claims true?
There are lots of hits at Google under ' cannabis cancer cure '
and for example, go to the site of Dennis Hill,
a biochemist who had advanced prostate cancer :-
https://dl.dropboxusercontent.com/u/27713298/Web/cure/Home.html
'cannabis cure forum' search gave lots of hits but this one is a
MUST if you want to hear what Dennis did
about his cancer status during a 47 minute interview about
apparent miraculous effects of cannabis oil :-
http://hempembassy.net/forums/After-the-Facts/Medical-Cannabis/Dennis-Hill--a-Bio-chemist-kills-his-Prostate-cancer-using-cannabis-oil/8,3115,4747.html#forumpost4747?PHPSESSID=93a3f81df0baf9d85a2acf3fc0faab47
Another example :-
http://www.endalldisease.com/harvard-study-says-marijuana-cures-cancer/
Was it all bullshit?
There's a forum attached where a typical range of opinions
expressed without much depth or evidence.
A common theme is that cannabis should not be totally illegal
because positive medicinal effects need to be
investigated.
Cannabis with high THD sure does have terrible effects in ppl who
become addicted to the high that smoking
or ingesting hemp may give. I have two nephews who have suffered
terrible mental effects after spending years
between 12 and 20 because they smoked far too much. Young ppl
often cannot control excess intake of anything
that gives them a high. Cannabis product need not be outlawed for
medicine, and is used for cancer patients in
palliative care. Smoking large amounts may not give a cure when
cancer has advanced so far. But it is not
known if cannabis oil taken orally or up the bum or up vagina can
stop cancer at such a late stage.
Dennis Hill says he took an increasing amount of oil at night
before bed with a low dose in daytime to keep
pressure up on cancer, and sleep while high. He slept well. He
didn't miss any work time while he spent
6 months on treatment.
But is this whole story an elaborate hoax???? Well, I don't know,
but I don't expect Medicare to pay for
cannabis oil.
But a search on Google does not reveal anyone who can refute the
claims of Rick Simpson or Dennis Hill.
There are plenty of bullshit artists who type rubbish in forums
without even reading anything Simpson or Hill
has said, or listening to interviews, or seen the videos.
A common dismissal is typically..."Well if cannabis worked then
drug companies would want to make money
by adopting it asap.."
But drug companies can't patent cannabis, a natural plant, and how
to extract the oil is well known and does
not involve any more skill than doing a medium difficulty recipe
in a home kitchen.
Anti cancer drugs involve large investments and lots of tests by
experts to make sure the drug doesn't
cause undue suffering or death of patients.
But once approved for sale, a new drug can be as lucrative as
having a license to print $100 bills, and investors
make a lot of money. For example, my Eligard I have been injected
with today costs about $1,200 per shot.
I need 4 per year. There are thousands in Oz and many thousands in
USA all needing this drug to stop
testosterone production and lower cancer activity and reduce Psa.
It does not cure prostate cancer. Well,
when you do the math, the amount of money for gross sales is
millions of $$ for what is about 1.0mL of an
injectable substance in a small packet that resembles a pack of 5
minute Araldite from a hardware store.
Its cost of production may be only $12.00 for each injection kit.
Net earnings would be lucrative, and drug
companies would not like to lose the huge profits now made from
cancer treatments because some arsole
manages to find a "magic cure".
But remember when someone found that stomach ulcers were not
caused by stress? they were caused by an
infection, and easily cured with an ant-biotic. So the stomach
ulcer industry was stuffed. Not a big loss though.
Now a doc has proved that a large % of people with chronic
backache can also be cured with antibiotics
because the back ache is caused by an infection. This avoids the
patient having complex and dangerous
spinal surgery to relieve pressure on nerves or to fuse vertebrae
together.
Any "magic cure" is a benefit to ppl all the world over.
What we have done so far to cure cancer has only been marginally
successful and very expensive for
patients and for national Medicare schemes. A "magic cure" removes
the costs and society benefits, and
those unemployed in health care "industry" move to other work. In
mt world all ppl want to live to 100 in
good health, and where there are more old ppl getting ill, the
"magic cures" make society more able to pay
for treatments via taxation and Medicare or from their own
pockets. We do not need to be sympathetic to
Big Pharma.
But just look at the tobacco industry. What a bunch of rotten
arsoles they are!!!! Just look how they continue
to sell their poison, and how they have opposed every legal way to
limit their poison productions all around
the world. They have money. Money corrupts, and the cancer drug
industry also is a Big Medical Supplier
with enormous funds and they would welcome cannabis oil as a
cancer cure just like a pork chop is welcomed
into a synagogue. They HATE change. They HATE forced reductions of
product varieties. In fact, its better for
them that ppl never die of cancer but live long lives with cancer
and always depending on the next "wonder drug"
to keep them alive a few more precious months.
So I have no sympathy for the cancer drug industry which should be
allowed to pass way if any "magic-cure"
such as cannabis oil becomes mainstream. The resources used for
the present industry would simply switch to
some other aspect of medical substance supply. That costs money,
but hey, have not the big companies made
enough already? They can afford change, but they hate change.
Capitalism always whinges about taxes,
regulations and change. Fuck 'em!
Cannabis oil ought to be able to be manufactured under strict
conditions and maybe with an additive to prevent
ppl getting stoned. Packaging in capsules allows easy use and a
known dose size. The supply to thousands of
cancer sufferers will be at a low and tolerable price, and with
respectable quality control, and society won't mind
if it can only be prescribed by doctors. The fact cannabis oil
causes ppl to get stoned is now extremely dangerous
to the general population because ppl will take drugs at any time
and then make business decisions, use power
tools, drive cars, truck, buses. I don't expect drug approval
authorities to approve the use of cannabis oil any
time soon.
So, to get, it, you have to make a purchase on the black
market. There will always only be a minority of ppl
who will buy a bag of marijuana and then apply well publicized
ways of extracting the cannabis oil for medicinal
purposes only.
Cannabis with high THD is quite different to hemp oil because
although hemp is the same plant, the hemp
has extremely low THD content, and its easy to get online.
Cannabis oil isn't so easy to get.
A common theme in all discussions of alternative medical
treatments is that mainstream medical cancer
treatments always seem to involve extremely expensive chemicals
and equipment, eg linear accelerators for
radiation therapy, and the "Establishment" ie, society as a whole
is easily persuaded into accepting all the cancer
fighting "industry" and its horrendous costs partly caused by
capitalist monopolies and control over patents.
Along with this greed comes the manipulation of statistics with
much possible data included or omitted to
make cancer cure rates look better than they really are for a
specific surgery, radiation therapy or chemo
therapy. It is usual for all established mainstream cancer
fighting CEOs and wealthy doctors with investments
in the industry to always denigrate alternative treatments without
ever even conducting tests of their own to
establish truth. The whole industry tries hard to ensure maximum
take up of mainstream industry products
and knowledge as generated by major research hospitals including
say Sloan Kettering, and John Hopkins
et all. Doctors are routinely pestered with bribes to use certain
drugs, and governments are relentlessly lobbied.
Cannabis is a very dirty C word among many medical product
producers and government agencies.
The perception is that cannabis is what dirty low life hippies
smoke and it is stuff that wayward children use
to mess up their young lives. And then these ppl move to other
worse drugs like cocaine, heroine etc.
But I have seen many ppl who have not become addicted and who have
not destroyed their life. I
smoked dope between 20 and 35 and I never ever found it
addictive. I did smoke cigarettes from
19 to 34, up to 15 a day. Then I gave up, cold turkey, because a
GF said I smelt bad. OK, I didn't smoke
tobacco ever again. The GF left to feed her habit of aimlessly
wandering the world ( Travel, its called )
and spending all her money, and changing men often, and being a
dopey cunt who could not make a
good partner to anyone for long.
But before trialling cannabis, I need to talk to more ppl about
it. I'm cautious.
Mainstream cancer treatments may be much less effective than you
think. Here is a big challenge to
propaganda put out about mainstream cancer treatments, and
challenge to American Cancer Society
doctrines....
http://www.worldwithoutcancer.org.uk/hoax.html
In this document, vitamin B17, aka Laetrile, or Amygdalin is
claimed to be a powerful natural chemo agent
found in many bitter taste seeds such as apple seeds and apricot
kernels. The guy says 3 apples a day including
all the core seeds well chewed up would give an ideal daily dose
of 100mg.
Since 2006, apples became very important because they act to
suppress appetite, as well as give fair nutrtion
providing you eat the skin. So for over 5 years I have eaten maybe
5 apples a day and often chewed up the core
and seeds. The seeds are not poisonous, unless you ate far too
many, say 200 apples a day.
I've seen horses eat apples whole, and I had a mouse move in to my
house for a month. It survived by eating
apple seeds which fell to the flow while eating apples. I found
the remains of seeds I'd dropped.
I caught the mouse which was in fine health, and released him to
the outside world where I am sure he / she
found a welcome change to diet.
So I have been ingesting a fairly large amount of Vitamin B17
which should have protected me against Pca
but has not. But had I not eaten so many apple seeds, would my
cancer be worse? I don't know, but right
now, my cancer is a real killer.
Another old guy tells us of a Chinese remedy with acupuncture
therapy :-
http://www.youtube.com/watch?feature=player_detailpage&v=7V7ALIvuTqc
Wondered about Psa significance? hear more on Psa testing in
USA :-
http://www.youtube.com/watch?v=elQ5mPctibQ&feature=player_detailpage
But the guy who runs a local cafe said raw spinach was good for
ppl,
http://en.wikipedia.org/wiki/Spinach
I'll include it raw in my salads. I tried some tonight, just
straight, no olive oil or salt and it was delicious,
and I guess my body is saying "Yea, that's what I need!"
Spinach won't cure me, but Popeye did OK with it. He even scored a
very nice girl friend, Olive Oyl. :-)
May 8, 2013.
My biggest concern right now is just how I might die.
Since last Easter, I did write letters to my specialist urologist
and radiologist who treated me
for my prostate cancer since late 2009 when I was first diagnosed
with the disease.
At that time, I got a Gleason score of 9, and PSA had only just
gone above the top of the normal range
figure of 5.0ug/L, a point where the report from the testing lab
suggests the patient needs further examination
for prostate cancer.
The significance of the Gleason 9 score wasn't immediately
apparent to me, but treatment options and treatment
outcomes along with survival rates become far worse for anyone
with Gleason over 8. about 30% will die within
10 years, and its just so easy to be in that 30%.
Today I saw my radiologist who recommended hormone blocking
therapy as I had it for 2 years 2010 to 2012.
He recommended bone density CT scan, and there wasn't anything
else he could offer. I think he wanted to
see where he'd applied his knowledge, and where it hadn't worked
as intended. Prostate cancer can vary
between being rather tame, and with some cancer varieties, a man
can watch it for 20 years and it won't
kill him and he will die at 85 with some other darn thing. Or else
maybe the cancer is a vicious bastard that
will laugh at the radiation, and may get worse because of
radiation, and not take much notice of being
deprived of testosterone.
I saw my urologist last month, and he agreed with my letter's
content that I could not be cured.
There would never be permanent remission.
He referred me to an oncologist who I saw today. I've also sought
second opinions from a urologist in Sydney,
and the opinions of the research doctors at Adelaide University.
All say I must go back onto hormone suppression
drug therapy, Eligard, and hope for the best.
Today, my oncologist said that Intermittent hormone suppression
therapy would not be very effective, and I
must stay in a chemically castrated state for the rest of my life.
I must have a pile of CT scans yet again within 2 months to see if
Pca has spread. I'm in more serious trouble
if they find I have metastasis, ie, cancer spread to bones or
elsewhere.
He also said I might expect a couple of years where the Eligard
will hold back the cancer growth and then PSA
will rise again as cancer learns to grow without testosterone.
Then there would be other chemo therapy drugs which would be used
in succession and as each one began to
have no effect, the next would be used, all with increased side
effects, so that eventually the treatment becomes
worse than the disease, and treatment ends up being not effective
at all, and then its time for pain management,
palliative care and death. The whole sequence of events could
happen within 4 years, and the oncologist could not
predict how long my cancer will let me live, or how long each
chemical pumped in would work.
But I do see what seems most likely to kill me, and there is
nothing I can do about it, unless someone can prove
otherwise, and nobody ever has proven anything more positive might
happen.
I've had plenty of emails from blokes promoting cures for which
there is no supporting evidence. Plenty of fellows
have died after placing hope in false therapies, and they are all
silenced forever, and those saying the wacky
treatments were effective are those selling or dealing, ie, they
are spammers of bullshit.
So now I have to cease thinking that "she'll be right" like I did
last year when PSA had gone down to 0.08 after 2 years
being castrated, and after EBRT.
My cancer has bounced back in a big way, and PSA rise has
surprised doctors and myself with unpleasant news.
Doctors have not won. Well, it ain't their fault, cancer was
designed and delivered by The God Of Genes.
What I can say is....
I was diagnosed too late.
Cancer onset happened fast during 2008 when urine flow suddenly
worsened, and I had to wake up at 2am for a leak.
PSA did not rise very much, or rise suddenly more than it had been
for previous 10 years of PSA checks.
So cancer was "aggressive young man's type" and had plenty of time
to grow big enough to give 9 positive cores
out of 9 core samples taken. Cell type showed bad cancer variety.
Cancer was probably in-operative at time of diagnosis in late
2009. At first I was offered a robotic op, but later
that was changed to open op which was attempted in April 2010, 4
months later. The op was not possible,
there was too much cancer adhering to so many things around the
prostate gland, so after taking more biopsy
samples the docs sewed me up, and later told me I needed
anti-hormone drugs and EBRT later in 2010.
So the medical system used would need to be more flexible and
allow men who are worried about their
prostate gland to have it cut out if they want to before any
disease occurs, or before PSA reaches the
upper limit of the "normal" range, ie, 5.5ug/L, and especially if
they have symptoms of pissing problems.
This may mean getting a biopsy well before PSA goes above 5.0.
Many men will have BPH, and no cancer
and just have a swollen angry PG, and low PSA. But they can't get
a biopsy. Biopsies are usually done
by thrusting hollow needles at high speed through rectum walls
into PG, a very painful procedure I had
with no anesthetic. A "gun" is stuck up your arse, and doc fires
away, and it feels like he's stapling
your rectum to your spine. There is a risk of infection from
bacteria from rectum getting into needle holes.
I met a fellow who'd been in hospital for 3 weeks and seriously
ill from such an infection, so docs don't
like doing biopsies, and patients don't like them, but its the
surest way to find out if you have Pca or not.
The whole "baby boomer" generation of men are now in "prostate
problem territory" and the whole medical
system is weighed down by increasing patient numbers and not
enough doctors and hospital space.
So you can now see why Pca kills so many more than would if
treatment was more timely, and effective, ie,
begun before the tumor forms, or just after it starts.
I have a limited knowledge of genetic science and DNA properties.
But one would think it prudent that all
biopsy samples be kept for analysis to define the DNA structure to
see if there are commonalities between
different samples taken from thousands of men being diagnosed each
year. The a register of treatment
history be kept for each man so results can be viewed against DNA
samples. Thus DNA profiles should
predict which treatment would be best, and if any treatment is
advisable. Computers would facilitate
the co-relation between DNA and treatment.
So medical research needs to act smarter, more folks in labs doing
work, less ppl flying around the world
to yak at each other at expensive dinners at resort hotels. The
Internet allows us to talk science very well,
no need to waste research $$$ on air fares.
Some sites I found......
This one deals with mortality rates for various Gleason
scores.......
http://prostatecancerinfolink.net/2009/11/12/prostate-cancer-specific-mortality-and-gleason-grade/
This one has many stories from many men about their experience
with Pca :-
http://www.yananow.org/query_stories.php
General stuff to know...
Australian Cancer Council, about Pca......
http://www.cancer.org.au/about-cancer/types-of-cancer/prostate-cancer.html
Nearly all patients who present with localized disease will live
beyond five years, with the 10- and 15-year survival
rates being 93% and 77% respectively. Well the word "nearly" isn't
scientific; science is numbers. I was diagnosed
too late in late 2009, and have had Pca since maybe early 2008, so
now its 2013, and sure, I've survived 5 years,
but I have Gleason 9, much worse than most others ( sorry for
unscientific "most" ) and so what I my chances of
another 5 years. Not very good at all. And bad enough to not worry
about making any long term plans, doing a
house renovation, falling in love, or doing anything much except
getting used to dying, and finishing some silly non
inconsequential projects to take my mind off crap. Does lycopene
from cooked tomatoes work at all?
Go to
http://www.cancer.gov/cancertopics/pdq/cam/prostatesupplements/healthprofessional/page3
Here they say something applicable to my case.
In one study, Pca patients who had EBRT or surgery received
lycopene supplements twice daily for 1 year.
There were six cohorts in the study, each receiving a different
dose of lycopene (15, 30, 45, 60, 90, or 120 mg/day).
Psa levels did not respond to lycopene treatment. Plasma lycopene
levels rose and appeared to plateau by 3 months
for all doses. The results indicate that, although lycopene may be
safe and well tolerated, it did not alter serum Psa
levels in biochemically relapsed Pca patients.
Does flaxseed oil work at all?
One controversy related to omega-3 fatty acids is whether ALA and
flaxseed, which is a rich source of ALA, are
beneficial or harmful to prostate health. According to medical
oncologist and Pca researcher Snuffy Myers, M.D.,
flaxseed and ALA, contrary to popular marketing, are not helpful
for overall health nor for prostate health. Myers
also says there is little to no evidence in the medical literature
to support the use of flaxseed or flaxseed oil, that these
products are hyped by marketers, and that people should turn to
fish and fish oil as the best sources of omega-3
essential fatty acids. Snuffy Myers is worth a search!
http://www.prostateforum.com/about-dr-myers.html
In 2018, I cannot find anything about Dr Myers, who may have
died.
Dr Myers has some very interesting things to say in a video speech
about the confusion in minds of oncologists
concerning the use of an increasing number of chemicals which have
become known to work when hormone
suppression has failed. Taxotere was the single well known
chemical used after HS is found to stop Pca progression,
but now a number of other things are used. To find out more how
well many oncologists cope with aggressive Pca
with rapid Psa doubling times can be found at
http://askdrmyers.wordpress.com/2013/03/27/new-drugs-confuse-your-oncologist/
In 2018 this link worked but stopped at 3/4 way through the
video.
Dr Myers has a large range of books to read. But of course, to buy
them all, and digest all of what he says might cost
hundreds of $$$. Probably, it would not be cheap to be treated by
Dr Myers, and one must travel to the US.
So, my concern is about the level of understanding that my
oncologist has for my particular form of Pca.
I know I have a bad case of of Pca, with aggressive cells, and PSA
doubling time of 3 months. It is unknown what
effect re-starting ADT will have, and if Psa were to continue to
rise or doubling time increase, then the cancer needs
to be assessed as being more aggressive than anyone thought, and
treated differently.
Dr Myers above says the fastest doubling time for Pca is 2 weeks,
and an oncologist may never see a case.
Doubling times can shorten, and Pca can develop to be castration
resistant and by that time it has spread.
The likelihood of treatment failure is glaring at me brightly,
because so far, plans A, B, B, C, D have failed to cure cancer,
or stop its progression and it may be all over by 2017. [ Well not
quite that bad, PTs comment in Feb 2018 ]
19 April, 2013,
After Easter I drafted a letter to my urologist specialist and my
radiologist who supervised my EBRT during late 2010
to early 2011. I delivered them them directly across the counters
of their offices. The urologist staff could find no
evidence of having received a fax with my last Psa result of 6.5
so I scanned and emailed one later in the day.
Within 2 working days, The urologist staff phoned be with a date
for consultation on 17-April 2013. The radiologist
phoned me next day and wanted to see me on 8 May..
The urologist said that indeed my Psa was high, and its sudden
steep rise rate meant that cancer was active, and
spreading. He said that after the treatment I have had, it would
not have been unusual to see one or more temporary
Psa rises called "Psa bounce" not exceeding 2.0, then followed by
Psa fall to 1.0 and slowly downwards during the
first year after treatment. The continued drop in Psa while not
having any treatment indicates treatment has been
successful. He said that it would be impossible to achieve any
success with any surgery. Although "salvage operations"
are performed in some cases, it could not be offered to me.
I wondered how many of his patients were cured with surgery or
with ADT + EBRT. It is secret information. They
don't like the public knowing because public try to compare
outcomes and see who is best.
He then said he would draft a referral letter so I could be
treated by an oncologist who would closely follow and
supervise whatever treatment was available. He suggested that
probably I would be ADT again as they had worked
well to reduce cancer activity to a low Psa nadir of 0.08 last
July. Perhaps I may be given intermittent drug therapy
and possibly a bone growth agent to counter the effects of bone
density loss while not having any testosterone.
So, my urologist confirmed my own diagnosis that ADT + EBRT was
not effective in giving me a cure.
He'd failed. He probably knew I was fucked the minute he looked
into my guts and saw the cancer was outside the
capsule, was a Gleason 9. Had probably spread already. Docs hate
dealing with failures.
And it WAS prudent that I had asked for the additional Psa tests
which were not specified by any doctors during
any follow up since last July. I've given myself an extra 3 months
to begin my real battle with cancer.
I've never ever assumed for one minute that ADT + EBRT would give
me a cure, and I had every reason to believe
I could not get a cure, unless proven otherwise.
So how come I have ended up in this situation?
Well, the normal range for PSA is given as 0.30 to 5.5 and the
medical establishment, ie, GPs, specialists and hospitals
DON'T recommend any action if Psa is within the ""normal range""
for one's age, or less than 5.5.
4 months ago Psa went up to 2.7, no action was recommended, even
though the level was a bit above a "bounce" level
expected.
But allow me to go back to about early 2008, 2 years before
diagnosis.
PSA had risen steadily since 2008 to about 4 with no sudden rises.
But I got symptoms of slow urine flow and
waking up at night, and the PG was swollen. AND most likely it was
because of cancer. no action was taken until
2009 when PSA rose just over normal, and by the time of biopsy in
Dec 2009, cancer had rapidly increased to
give 9 / 9 live samples, and then the operation attempt followed 4
months later in April 2010, but docs said there
were too many "adhesions" and risk of spill, ie, cancer was local
but in-operable. Then came ADT + EBRT later.
For me to have had any chance of having a successful operation,
either endoscopic or open, I should have been
given a biopsy in mid 2008, and that most like would have been
positive, and an prostatectomy would have been
possible later in 2008. But my Psa hadn't gone high enough to
justify any action.
I recall getting strange pains in rear as far back as 2004 where I
was woken in morning with rectum ache which
then went away soon or after I stuck middle finger up to massage
PG. I think that was when Pca began. When
I began cycling in mid 2006, those symptoms vanished, and perhaps
it was a bit of proctititis, but I cannot know now.
So it seems I slipped through the net for early enough detection,
and this shortcoming of the medical system means
I have maybe lost 10 years off my life.
It is a cheeky statement I have made here, but if all men acted
earlier, the expense of much more frequent biopsies
would send up the national cost of cancer detection, and be
considered economically unjustifiable. But if one man
has $200,000 treatment costs because he is diagnosed too late for
surgery, then that's poor ecomomics for sure.
It is said few men are diagnosed positive with a PSA below
5.5. Nothing is perfect, eh?
I could probably say that the EBRT was not entirely useless. There
has been virtually no change to urination function
so I might assume that my PG is not swollen, and indeed much of
the cancer within my PG and in surrounding capsule
may be stopped in its tracks. But the cancer may have spread to
areas which were not radiated to the same extent,
and may be spreading to bladder, or to some other site. Psa is
generated from cancer cells in such sites.
The extent of spread is entirely unknown now and I guess my
oncologist will specify yet more scans, possibly a
PET scan, with radioactive isotope to pin-point where cancer may
now be. It may be possible to give further
radiation therapy.
For those feeling rather alarmed by what may happen to them if
they fear diagnosis, or are dealing with life after
diagnosis, there is a good site with a .pdf you can download at
http://yananow.org/StrangePlace/StrangePlace.pdf
I also found another online resource to seek a "second opinion"
http://www.prostate.com.au/second-opinion/
This is based at St Vincents Hospital in Sydney. It may be limited
to Australian residents, but I am not sure.
I have waited 5 days so far a reply to my submission after filling
in the details.
I'll let ppl know if I get a reply.
Last week I Googled all ABC Radio National News for stories on
latest prostate cancer treatments.
I came up with a story about research going on at the Dame Roma
Michell Cancer research establishment
at Adelaide University. I searched for details and found emails
addresses for the professor.
I have emailed and the professor was very interested to hear from
me and I have been accepted as a
"patient advocate" by Adelaide University, and I may be given
trials of treatments, but I am not sure yet what
is involved, but I DO WANT TO BE USEFULLY INVESTIGATED by research
people. They are all very
interested in finding effective treatments, because they stand to
gain a lot, as well as make patients very happy.
I've had emails from very well meaning people suggesting a large
range of alternative therapies, including
electro-magnetic field application, flaxseed oil, cooked tomatoes,
increasing blood alkalinity, etc.
But when I ask for evidence that any of their recommendations
work, they can't give me any.
For example, if you drink/eat flaxseed oil, just how much ends up
active in the bloodstream? If some does
end up in bloodstream and is found to kill prostate cancer cells,
then just how much killing goes on?
How much flaxseed oil to I need to consume to get cancer killing
to occur faster than cancer growth? what
about men like me with more aggressive cancer types than other
men? I have SO MANY questions, and
not one single sensible answer.
There are some incomprehensible opinions held by experts. One such
expert is Professor Eastham of the
famous Memorial Sloan Kettering Cancer Centre in New York. He says
that over-treatment is much more likely
in the US than in Australia or NZ, where there was more "active
surveillance" than US, but for myself, I would
have benefited from the "over-treatment".
The full article is at
http://www.medicalobserver.com.au/news/prostate-cancer-best-managed-down-under-expert-says
But in the Age newspaper, early operations on prostate cancer may
not work very well.
http://www.theage.com.au/national/health/surgery-for-earlystage-prostate-cancer-not-saving-lives-20120719-22d6e.html
Right now, I am back at SQUARE 1. I can't wait to see the new
doctor in my life, the oncologist.
Meanwhile life goes on while I think often I may not live very
long.
28 March, 2013,
Easter has arrived, and I have had a few days to think about the
content below regarding my Psa graph since 2008.
I've also searched again for websites which present discussion
about what happens when EBRT has failed to stop Pca.
I found a couple of sites :-
http://prostate-cancer.med.nyu.edu/faqs/faqs-radition-therapy
http://www.pccnc.org/patient_resources/understanding_diagnosis/#gleason
I'm not going to post here all of what I read, but where Psa rises
by an amount of 2.5 above the "nadir" or
lowest level for PSA which should follow EBRT, then it may
be said the cancer is growing and NOT cured.
But my Psa nadir was mainly brought about by ADT, Eligard. Psa
went down to 0.08 at 18mths after EBRT, and
2 years after beginning ADT. Well, now I'm at Psa 6.5, rising
fast, and free PSA is 8%, and nothing suggests this is
OK or acceptable.
My GP wasn't alarmed, and seemed rather ignorant of the issue.
This is to be expected. GPs vary in their levels of
accumulated knowledge. They are not a specialist, and most GPs act
as facilitator between patients and the specialists
and rest of the medical and hospital establishment.
If I don't chase my specialist with a letter or two, he won't
chase me, and I will die sooner rather than later.
Hving been diagnosed as a Gleason 9, aggressive cells, without
high PSA, is a real worry, because when I read
about % survival outcomes for Gleason 9 and EBRT, its not a happy
picture at all.
25 March, 2013 :-
Psa has moved up to 6.5 ug/L and the test summary tells doctors
that there is a high risk of "prostatic neoplasia"
which means new tissue could be forming, and probably it is
malignant. So cancer may be growing, and not halted.
While so little is known, we now know the Total Psa is above
normal for my age and presently has a doubling
rate of 3 months, and "free PSA" is 0.55ug/L and 8% of the Total
Psa. free PSA should be well above the 8%.
Free Psa is described at
http://prostatecancer.about.com/od/symptomsanddiagnosis/a/psapercentfree.htm
My GP said Psa of 6.5 is not outrageously high, and that although
it is slightly above the normal maximum of 5.5,
it may not rise much further and may yet begin to decline which
would indicate the RT and drugs have worked OK.
And I didn't beleive that was possible.
Meanwhile, I've never ever found any graphs of Psa levels versus
time for men who have had initial ADT with Casodex
pills followed by ADT Eligard, then EBRT radiation therapy after
the first 6 months of drug therapy, and a further 18
months of ADT.
So I have no clue what to expect after my previous treatment, and
I must consider it is always possible that treatment
has failed, and that this cancer will kill me.
So I have published a graph of my Psa vs time with treatments.
As anyone can see, the history graph shows I took action when Psa
went over 5, and began to rapidly rise.
I began Casodex for 2 months when Psa reached about 8 after failed
surgery. Then I switched to Eligard ADT for 22
months. At 13 months after diagnosis, size of PG was reduced bt
ADT. 35 EBRT sessions were given Dec 2010 thru
Jan 2011. PSA continued to fall, and I estimate lowest level
achieved was about 0.07, last June 2012. By about
August, the effect of the last injection of Eligard began to
cease, and testosterone production recommenced and the
total Psa is back up to 6.5, and I am at square 1 again.
Psa is doubling each 3 months and it could be 104 within 12
months, alarming.
The latest Psa has just been sent to my specialist urologist, and
perhaps he may make some recommendation for
immediate treatment, so I have to wait for a response, if any. I
expect to go back to ADT for the rest of my life.
Some may say they cannot understand why I'd bother to tell the
world about my life.
1. All men need to know they could get prostate cancer, and they
should not deny this could happen. I'm adding to
the pile of what's been said about the disease and although my
case history is different to others, the more any man
knows, the better he can survive whatever Nature serves him. A man
has zero control over his DNA and genes.
2. All men should read other men's experiences to become wiser.
Wisdom not shared is knowledge obscured.
Wisdom should be freely available, to minimize the time people
spend acting with ignorance and captivated by bullshit.
3. I have absolutely nothing to hide. So IMHO, its better to know
the truth from day 1.
4. Although I have my public profile, I have never been pursued by
haters.
But right now, I feel very well.
Last Sunday I cycled with 13 others in the Pedal Power "fast
group" which does the longest distance at the highest
speed each Sunday, all year round. Usually there are 3 groups,
slow, intermediate. Sometimes a total of 60 turn up to
ride, about 90% men with some women who are mostly in the slow
group, and quite understandable.
But last Sunday, there was a particularly athletic lady of about
35, and she was faster than many of the men in my group.
I have not ridden with this group for the last two years after
losing so much strength and speed due to cancer treatments.
But last Sunday I averaged 28.9kph for the 93km on undulating
country roads through countryside north west of
Canberra. The route included morning tea break at Tallagandra
Winery along Murrumbateman Rd. The average age
was about 48, so I was left behind the fastest among us whenever a
steep hill came up. The ride included about 5
regrouping stops and over all I calculated I was only 2 kph slower
than the two fastest riders, and I concluded that
the performance I knew 3 years ago has almost completely returned.
This could lead me to think I have beaten my cancer, but I'd never
be so stupid to be so certain about this villain within me.
In addition, I've put on maybe 3Kg over the last 3 years, and I
ride a steel framed bike made in 1988, 1.5Kg heavier than
most other carbon frame bikes. Even with my excess weight and age,
there were times where I could stay with leaders,
and take a turn at the front. Some have asked me why I don't buy a
carbon frame bike with lighter wheels and and so on,
but my reply is "Why?, I just rode past you, so no need to spend
$5,000 to travel 0.2kph faster...."
The total distance I rode last week was 310km, and week before
last 291km.
I may find that a return to ADT will mean average speed will drop
again to 23kph, so I won't keep up with the other guys
and will be left behind alone. I have spent most of the last two
years riding alone with reduced strength and speed, and I
didn't curl up and die, or become depressed, or become completely
dysfunctional.
I've seen so many die of cancer, and seen so many hope for so much
where hoping was never to make any difference.
I'm only optimistic for a cure if there's real evidence, and right
now I see no evidence of that at all, just a slow decline.
So I should just finish all my little projects to take my mind off
the negatives. And as usual, I'll face it all completely alone,
like everything else, as I have for decades.
---------------------------------------------------------------------------------------------------------------------
12 - March 2013.
Not much to say since Dec 2012.
I am enjoying the reduced workload in retirement. People cannot go
on forever expecting me to be there for them.
I have no idea how much longer I might live, and I don't worry
about it now as much as I did last year. If the next Psa
shows big Psa rise I will re-start ADT.
---------------------------------------------------------------------------------------------------------------------
20 November to 24
December 2012.
Being officially retired sure agrees with me, and the best thing I
did after last September was to refuse to
repair so much badly made stuff for which so many paid far too
much, and expect me to slave away at slave
labour wages to fix it. But there was still some of it to do.
Health is now "variable."
Last August, Psa had declined to 0.08 after 2 years on ADT, and
after EBRT for PG. September Psa rose to
0.5, October was 1.2 in October, 20 November it is 2.7. The rate
or amount of Psa is not alarming any doctor.
My back ache went away
---------------------------------------------------------------------------------------
September 2012 to
November 2012.
My Website.
Since 2001 when I began my website I have had only ONE email
address which now is no longer valid.
It was fetching a huge amount of spam and searching bots and
nuisance emails.
To email me now, you have to read my new email address shown in a
.gif image at my index page.
Once you send an email, future emails will work automatically.
Health issues.
Last September I mentioned how I was getting on just after
completing the first lot of treatments for kidney
problems and prostate cancer.
Kidney problems.
The kidney problem was a constricted (blocked) ureter which
required stenting over 2 years. But the constricted
ureter began to work OK again all by itself, and a few months ago
the ureter managed to dislodge the expensive
memocath and I passed into bladder and then out while urinating.
This surprised all then doctors. It now seems the ureter is still
working OK along with kidney and kidney is not
threatened with failure and needing to be removed.
Prostate Cancer status.
Before last august, Psa drifted down from 0.14 in February to 0.08
by mid 2012, after 2 years ADT, and EBRT
in Dec 2010.
After the last injection of Eligard in early 2012, its effects
began to wear off by August. Psa was 0.5 at
18 September, and then 1.2 at 18 October, and obviously it looked
like a very fast doubling time for Psa.
However, no follow-up consultation has been available so far
within the Canberra Hospital system.
My studies online via Internet have me wondering if the treatment
so far has been useless in
halting progress of prostate cancer. I don't know if I have
"radiation resistant tumours" which
do not curl up and die after being heavily irradiated, but move
right along to become ever
more capable of killing me.
Testosterone level last October was 16, in the middle of the
normal range.
So with returning levels of testosterone, all my prostate gland
cells surviving after EBRT would begin making
Psa again. And if the Pca has spread widely then those cells also
would produce Psa which would add to the
measured total. So I could expect PSA to rise to about 3.0 without
it being above normal for a man my age 65,
and without being scared to death.
Over time, all radiated cells which include all prostate gland
cells should stop making Psa because they die off,
and don't regenerate. All the tissues "down there" within the
target volume of prostate gland which were exposed
to radiation beams from 4 different directions have become
"wooden", still partially functional, but with altered DNA.
But nobody can tell me just what Psa levels I might expect during
the next year if all has gone well.
Online sources say Psa should slowly decline after EBRT. I think I
am a long way away from being cured.
Last week I received a bowel cancer testing kit courtesy of the
Australian Government's national bowel cancer
screening program. Basically, it means recipients over a certain
age need to send TWO samples of shit to a lab
for testing for presence of blood. Well, in my case, over the last
two months I've spattered the toilet bowl red
with blood from bleeding on maybe 6 occasions spaced about 2 weeks
apart. Now its a fact that about 50%
of blokes will get a bleeding bowel 2 to 3 years after EBRT for
prostate cancer, and online info suggests it is
not life threatening and the condition resolves with time, or if
not, there are several possible treatments. But over
a longer period the bowel is more likely to get cancer because of
EBRT side effects. Welcome to getting old,
one bleeds occasionally from where young pp are terrified to see
blood. OK, so getting old means all this
shit happening.
Yesterday I received a letter from Canberra Hospital saying I had
a 'follow up' appointment with Urology
Outpatients in July 2013. Well, this wasn't what I expected after
my doc had requested I speak to someone
knowledgeable about the cancer strategy.
Today, 20 Nov 2012, I went to a GP and told her all about my story
and she definitely wasn't impressed by
response from CH, so she sends off a letter to the urology
specialist, one Dr Haxhimolla, in whose care I
remain. He will get her letter and decide if I need to be spoken
to any sooner than January 2013 which would
the soonest I could see him if there was not any referral. The
fact is I ain't the only dude who wants to talk to
a specialist about strategies. There would be many men and women
in his list of patients, and we all have to
wait our turn, and those with need of urgent action get seen
first.
So, I cannot do much more than inform the system here of my
condition, and let the specialist make a decision.
Dr Haxhimolla is a man I have great respect for.
He managed to save a kidney I may have lost, and I respect his
reasons for NOT proceeding with a
prostatectomy in April 2010 when it appeared that surgery would
not have worked to give a cure. I've met
blokes whose cancer has returned after surgery, and they have had
to have all my treatment on top of the
surgery.
Back ache is keeping me off the bike for awhile. Swimming does not
reduce back pain. I've got a
prescription for Voltaren which is slow acting type and stronger
and perhaps this will reduce inflammation
and pain to allow more work in shed, swimming, and lawn mowing now
needed because of huge growth
this spring after a year of good rainfall.
-----------------------------------------------------------------------------------------------
August 2012 to
September 2012
Since last August, I feel better with start of Spring and relief
from cold which was said to colder than
last 15 years.
The latest big rise in Psa level indicates the fight I have with
cancer is not yet over.
The effect of stopping ADT and increasing testosterone has
elimintated hot flushes. Psa test last August was
0.08, and I felt like I was winning, but of course there is no
certainty I'm winning at all. Psa for 18 September
is 0.5, so the PSA has risen about 6 times in about 6 weeks,
coinciding with rise of testosterone production.
So right now, I can only think that the radio-therapy and 2 year
course of Eligard may have failed to stop
my cancer progression.
Google says a lot about Pca continuing after EBRT and / or ADT.
Radiation resistant Pca is common.
In 2009, doc said my Pca was aggressive, Gleason 9, and yet they
said 2 years ADT and EBRT were
my best option, but no doctor has explained to me about what might
happen if my treatment fails.
The question is, will Psa just peak at 2.0, and go down, or just
keep going up?
For those needing to know more about returning prostate cancer and
treatment effects see...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1477547/
http://www.ncbi.nlm.nih.gov/pubmed/7716843
It would be just my luck to find myself with non-curable prostate
cancer no matter what is thrown at it to
stop it.
If I had a an RP op and then radiation as well, like many do, it
looks certain there would be complete
ED and probable incontinence. I know men who had PC return after
initial RP operation, and then they had
to have EBRT within a couple of years, and it fucks all thing up
down below. There are operations to insert
prosthetic erectile and continence devices, at a huge private
expense not covered by Medicare. But after PG
radiation, doctors don't like operating in any radiation affected
area because blood vessels do not heal fast
and a man can bleed to death. I have follow-up meeting at Canberra
Hospital 27 September with urologist
and see what happens. I can only be worried about it.
Sex function has increased, no ED. No incontinence. But, I do have
occasional bleeding from the bowel,
very common with guys who had PG radiated. EBRT gave me few side
effects, not even any red patches
on my skin, like sunburn, as many others did, so its possible the
dose of radiation used on me which is
supposed to be 70Grey was not a strong enough level to affect my
healthy cells or perhaps my cancer cells.
So the cancer may kill me and the fight is not over. There is no
doubt that the older you get, the better you
was.
My cycling average speed had risen to where it was about 2 years
ago, ie, from 23kph to 25kph. I've kept
records of each day's distance and time and average speed. Today,
23 September, I rode a good 54km at
average 28.2 kph which is 3kph quicker than say a year ago. In
2008, along the same route I averaged
32.5kph. But my speed is not up to where it would have been had I
not had the treatments, allowing for
natural ageing effects.
Since 2006, I have probably ridden about 65,000 km, last year I
did 11,000km, and during my 6 racing
years some 25 years ago I would have done 130,000km, and I did
most of those km alone, accompanied
by Nature, Universe, Space, Time, and numerous magpies who attack
at this time of year. Today I had 4
bird attacks, and I had one puncture, but it was otherwise a near
perfect sort of day.
------------------------------------------------------------------------------------
7 August 2012.
A strange thing happened 2 weeks ago. I thought I had a urinary
infection because I was sore down
below and went to a GP about it. He gave me antibiotic pill
script, and off I went. But 2 hours later
I managed to piss out the "permanent" uretic stent which the
hospital crew had installed last February.
No drama, just like an oddball sensation of pissing a jelly bean,
no pain. So I wash the stent and take it
to the GP, "Look what pissed out" and then phone my specialist and
his office tells me to admit myself
as an emergency patient at the hospital. It was 2pm when I arrive
and become one of about 50 people
all waiting for treatment. But they put me on "fast-track list",
and I was seen by a doc at about 5pm and
admitted when they found a bed in the orthopedic ward. Some had
been waiting 5 hours for their
"emergency" treatment. So they must have been on the "regular
track" and maybe there was even a
"slow track" now so typical of large city hospitals. But, its
better than no hospital, and its totally cost free.
The hospital took what happened with me very seriously, and
planned an operation sometime next day
to replace the stent with another temporary one which meant
fasting, but I was allowed dinner, so I had a
good one at the hospital restaurant because it is much better food
than the junk they bring around on trolleys.
I had a CT scan next day, and they decided not to replace the
stent with a temporary type because the
scan showed the ureter which had been constricted, or blocked, had
begun to function again, and the
original problem appeared to have "resolved itself". I thought a
miracle had occurred.
I have no religious faith in any saint, god, pope, priest or
anyone else posing as a religious leader.
All religions start wit a good idea, and Christ did teach a good
way to live, but many ppl gather around
to practice the religion and soon you have heirachy and ppl at the
top become corrupt, and the original
ideas all twisted, and then there are endless religious wars and
millions die, so religion is evil.
I have faith in my own moral inner strength. There is Natural
Goodness in others. Our species is not all
evil. Religion is a by-product of civilization which began about
10,000 years ago when folks started
farming and didn't have to spend all day hunting and gathering to
survive. Idle ppl soon discovered
1,001 ways of behaving badly by sinning and having wars all based
on books written by lunatics
wandering the deserts for too long.
The stent is a coil of very expensive special heat sensitive wire.
It looks like a 75mm long coil of stainless
steel wire wound to make a tube about 4.5mm dia. The wire dia is
about 0.5mm, so the length of stent is
very flexible, like a floppy long coiled wire spring. When such
stents are installed, a flared section is
supposed to be formed at each end so that the last 8mm of length
is expanded to about 8mm dia so that
each flare locks into the soft flesh of the ureter pipe. The 220mm
long ureters between kidneys and bladder
have muscle tissue along their length. The ureters are in fact
drain pipes for urine flow, and are part of the
bodies sewer pipe system. These muscle walled tubes work
constantly with peristaltic motion to allow urine
flow in one direction only to bladder, and the amount per hour is
less than a cupful. Any solid object within
a ureter tends to be squeezed by muscles along its length towards
the bladder. Kidney stones can have sharp
edged shapes and hence many cause pain if they are passed down
pipe work. But a stent is made with a
shape which is unlikely to cause pain. The CT scan revealed my
40mm long section of constricted left ureter
had muscle motions going on, but perhaps that had been going on
for a long time, even though part of
ureter was constricted. Temporary "pig tail" uretic stents cannot
be moved along by the uretic muscle action
because the two ends of the 250mm long plastic pipe used have
coiled ends, called a pig-tail. These coils
lay in the bladder and "delta" of the kidney output, and so they
cannot be moved along by peristaltic muscles
or by gravity. But pig-tail ends can cause bleeding and pain,
rubbing around where tissues are soft.
They also get encrusted with junk deposits and must be replaced
each 6 months. "Permanent" uretic stents
such as the "memocath" I had inserted are supposed to not move for
their life, estimated at 10 years.
Encrustation junk deposits is supposed to not happen. One might
say that I can't expect a stent to remain
where it is if I ride a bicycle but its all on the road and fairly
smooth surfaces so the vibration is less than
if I walked, and much less than running, and my torso is bent over
at about 35 degrees, not vertical like a
runner. Doctors prefer me to exercise, and not one has suggested I
quit because it might make their solution
to my problem fail.
When the stent "fell out" I immediately had visions of suing a
specialist doctor for faulty workmanship.
Oops, one cannot easily do this, even if one suspects lousy
workmanship. I calmed down for the hospital
stay, and didn't mouth off at anyone unpleasantly, but if any of
the doctors involved read this text, they
should wonder why the fuck such a thing can happen and whether
their stent installation methods need revision.
I'm still "intact", and not suffering severe pain as a direct
result of what a doctor did or didn't do. There is no
point to a legal campaign. The issue of mine is NOT RESOLVED yet
and I have a CT scan next Monday
13 August where radioactive substances will be used to check if
the ureter has become blocked again after
all stents have become absent. Its highly possible in my mind
because one might expect the ureter to remain
open after 2 years of having stents, but then re-close again after
some time when there is nothing there to keep
the ureter open and able to pass urine along to bladder.
My stent had a flare on its upper end only, and therefore was
prone to being able to move toward the bladder.
I don't fully know why, but docs put one flare
at one end of the stent maybe because the constriction bgan at
bladder and extended to 40mm up the L ureter,
and flaring the bottom end would have not anchored the stent in
place so methinks there wasn't much to stop
the stent drifting to the bladder. Over time, the lower free end
of the stent found its way into the bladder where
it then found the bladder's urethra outlet, and began its journey
to the outside world over a couple of weeks,
so hence my discomfort and slight pain over two days whilst riding
a bike and driving my car.
I was discharged from hospital after two days. The stay was like a
forced rest, a forced holiday and I had
fabulous nurses. But I was surrounded by 3 geriatric patients in
an orthopedic ward because they'd fallen over
and broken something. All 3 were stark raving mad with varying
levels of dementia and incontinence.
The care for them involved craning them out of bed for showers and
a shit, and they took 30 times more
nursing time than I did. And they complained non stop, and didn't
have a sense of humour.
One nurse told me "If only all my patients were like you!" And I
replied with "Darling, if only all my ex-wives
had been nice like you I need not have divorced one of them."
Trouble is, I was 40 years too late to marry one of them.
The truth is, being in hospital is the only time I ever feel
loved.
-----------------------------------------------------------------------------------------------------
11 July 2012.
Last week we had about 6 days of -5C mornings, yet no doubt
someone will tell us next spring that we
have had the warmest winter for 20 years because of global CO2
emissions. Nobody here wants to pay
4 times higher electricity bills to scrap all coal power plants
and replace with solar, or nuclear.
Australia makes 1.4% of world wide CO2 emissions, all the world
needs to stop CO2, not just us,
and its a case of "Watch out, you might get what you have not paid
for!"
My health is improving. I ended my course of ADT with Eligard
officially last April. But its effects are
continuing and I still get hot flushes but they don't last as long
or occur so often.
Eligard effects probably will take a few more months to wear off.
But in just one month I have lost 1Kg
and last week I cycled 330km at average 22.5kph in atrociously
cold conditions.
Maybe some MOJO is coming back.
Last time I did Paddy's River Rd about 10 weeks ago I thought I'd
die. And I was heavier,at 86Kgs+,
and my weight seemed to be increasing, but this last week my
average morning weight has been 85Kg.
I think I could get back to 82Kg which was my racing weight in
1988. I've not had a drop of wine or a
single bar of Lindt dark chocolate for a month, despite the
freezing weather. Cycling in cold weather
probably burns more calories than in hot weather.
PSA test I had last week gave 0.08. My doctor was pleased that the
PSA level is slowly falling.
I'm having another test in mid august to see what the trend is. If
my testosterone levels go up, it should
cause cancer cells to try to multiply. We suspect they won't
because the radiation has altered their DNA,
so they'll die, but while they do the PSA is likely to rise a bit,
before fading down later if all goes well.
The fear is that some cancer cells will not die, but become more
virulent mutant cancer cells which may
be much harder to treat over years ahead.
The memocath inserted to a ureter last February seems to be going
OK, and only once or twice have
I noticed it was there, and only after very long bike rides. Seems
like it was successful therapy to keep a
kidney I may have otherwise lost. My thanks to Dr Haxhimolla and
staff at Canberra's hospitals!
Nathan Pritikin once wrote a great book I read during 1980s. I'm
trying to keep his ideas alive, and
myself.
http://www.pritikin.com/home-the-basics/about-pritikin/38-nathan-pritikin.html
April to May 2012.
The memocath uretic stent continues to be well tolerated in my
body, and I'm having no obvious kidney problems.
I had a "perfusion renal scan" where docs used radioactive
substance pumped into a vein and the progress of
the substance was tracked in body plumbing by an electronic gadget
capable of reacting to the slight radioactive
emissions and producing a detailed image of body plumbing. Quite
marvelous sort of gear they have at hospitals
now. A very pleasant young lady radiographer presided over me.
That was 11 days ago, and neither my GP
or specialist urologist has phoned to request I attend an
appointment. That usually means they probably didn't
find anything horrid I need to be told.
I'm still getting hot flushes, so testosterone must still be below
castration levels. I can still feel small lump of
Eligard or scar tissue or whatever under my skin, so this stuff is
still working, many weeks after the official time
of 13 weeks for it to be active. Such Eligard injections are
active for longer than the 3 months, and the successive
injections overlap each other, to make damn sure plenty of Eligard
is there to suppress testosterone.
My prostate cancer status cannot be known. And it won't be known
until my testosterone
production re-starts, maybe gradually over the next 3 months, if
at all.
--------------------------------------------------------------------------------------------------
March to April 2012.
The 'memocath' uretic stent seems to have settled in nicely and
causes me no pains at all and no internal bleeding like
the temporary pig-tailed stents I had. I can cycle 120km in a day
without ill effects apart from feeling tired.
However, 120km would be a maximum limit, and need to be on a
fairly flat road.
Today, Sunday 29 April, I did a 92km ride including Paddy's River
Road between the Cotter and Tharwa. There are
many steep hills and there was a strong cold headwind, and my
average speed was only 20kph, at least 3kph below
what I could do only 3 years ago.
There is a good discussion group for people suffering prostate
cancer at
http://csn.cancer.org/user
Once there, its not too hard to select to read posts from many
blokes
with prostate cancer, and you may compare your own experience with
others.
You are not alone.
The makers of Eligard have a Web page describing the drug, and
with graphs
showing the levels of eligard against testosterone levels.
http://products.sanofi.us/eligard/eligard_75.html
-----------------------------------------------------------------------------------------------------
February to March 2012.
Its now 8 weeks since the memocath was inserted by the urology
team at Canberra Hospital headed by the very
able minded Dr Haxhimolla. Over the last 6 weeks I have gradually
had less reminders that I have had something
foreign lodged within my body's plumbing, ie, into one ureter. So
far, so good, and I am cycling 220km a week at
23kph average. I can cycle 100km without any fear of bleeding or
severe pains.
I have been booked for a follow-up renal perfusion cat scan with
radioactive stuff on 17th of May, and a better
story about the state of kidney function may become known.
My balls have shrunk, but am not incontinent, Psa has been 0.1 for
a year, and no trouble with ED, and I can
jerk off in 10 minutes like at 25. The plesasure is beginning to
decline.
-------------------------------------------------------------------------------------------------------
January to February 2012.
28 Feb 2012. It is now just over a week since the memocath was
inserted. Last Sunday I rode 100km around a
rather tortuous route including many steep hills. I felt no stent
pain until the 61km point when the body let me know
all wasn't quite right when passing water. I spent the next 39km
taking it easy, but there was no continuous pain,
and pains didn't get much worse, and pains were not very painful,
more like a kind of strong brief heat sensation
probably associated with muscle contractions around tender tissue
after constricted ureter had been dilated, ie,
stretched in diameter and then followed by stent insertion.
There wasn't the slightest sign of any internal bleeding, and
after my ride I recovered OK from the tiredness.
Yesterday, I did 93km, a flatter course, but several km where I
went absolutely flat chat to get away from a 25 yo
guy trying to chase me down after I'd overtaken him. He gave up.
Stent pains were slightly less, and today there
are almost no tell tale signs I have any stent. I think the
plumbing my urologist carried out seems to be "settling in" for
the long term expected stent life of 10 years.
17 February 2012, I had the operation to replace a temporary
uretic stent with a memocath stent and I'm feeling
better already. The test of whether it causes me grief or not is
when I head out for a bike ride next Sunday.
I had 3 temporary stents each 250mm long, curly ends, for their 6
month life-span and still managed to average
200km a week on the bike, although at reduced speed, and on
smoother roads. Anyway, so far, the memocath
stent caused not the slightest pain, or any feeling that I have
some foreign bit of fancy plastic-metallic pipe inserted
where one is especially sensitive to blockages or objects such as
kidney stones. The memocath is supposed to last
10 years.
13 February 2012, I got a call last Friday am, 10 Feb 2012, for me
to attend a pre-admission clinic at Canberra
Hospital for an operation next Wednesday 15 Feb 2012 to instal the
permanent memocath in a constricted 40mm
length of a left ureter. It involves cytosopy and stent
installation by means of tubes endoscope and tools up the
dick and past the bladder, and up into the ureter. Such
constrictions can occur without any known reason,
and because it involves fiddling around with pipes and stuff via
the sex bits of of ppl, they don't wanna talk about it
much.
----------------------------------------------------------------------------------------------------
November 2011 to
January 2012.
There is very little to report since last November. My general
well being is OK, but I side effects of ADT
continue. But I just had my last injection to reach 2 years of
ADT. So by around next April, the effects of ADT
will decline, testosterone should return, Psa results might
indicate effectiveness of primary treatment.
I'm cycling well but have had bad leg muscle cramps and pains at
night, plus numbness in hands for the first hour
on the bike. The remedy for cramps was a visit to my good
acupuncturist who stopped the cramps, but muscle
aches continued, so I tried a good local Chinese massage salon.
That made a dramatic improvement.
Last week I had massage for the hands and my arms. During today's
92km ride, very little numbness.
I'm not having any trouble with my temporary uretic stent which
should have been removed last November.
The hospital system is a bit of a mess, lots more cases of Pca for
the urologists so work they do with kidney
bothers has to wait.
-------------------------------------------------------------------------------------------------
September to November
2011.
The uretic stent problem would not be fixed until 2012.
My problem is that about 1/4 of the length of one ureter has lost
its muscle function, and it has tried to
become constricted, thus preventing urine flow, and left
untreated, I'd lose a kidney. It is necessary that a
permanent stent be inserted across more distance than the
constricted section of ureter. But there is an
assumption that if the ureter constriction has not changed in
length over a 12 month period, then it probably
won't change much in future, and a permanent "memocath" stent may
be effectual for many years if not for
the rest of my life. But if the ureter constriction were to
lengthen in future then the good section
of ureter would become constricted and block urine flow and I'm
back to square 1.
I'm still cycling OK.
Next July I retire "officially" when I turn 65, and the prospect
of getting the Old Age pension, about $340
week, from the Government seems like I shall experience many
Christmases all on the same day after Next July.
It may seem strange to you all, and especially those who have a
lot of superannuation, but $340 a week is much
more than I've ever been able to earn from the audio business.
March to September 2011.
I'm still waiting to get a memocath permanent uretic stent to
overcome a problem with one ureter which had
begun in about 2009.
Psa is 0.1 ug/L, very low, and way below a figure of 4.5 when
doctors become alarmed about my PG.
Doc says Psa is low 15 mths after beginning ADT because ADT is
like surgical castration.
Most but not all Pca cells cannot grow without testosterone, but
many just sleep with ADT.
After next April, when I pause ADT, my testosterone production
should begin to re-start and wake up the
sleeping Pca. Doc tells me Pca DNA is fucked up so they should not
grow.
Doc said when testosterone returns, Psa will rise slightly, and I
must not panic, because some rise is normal
after this long term ADT, and then Psa begins to fall as the
cancer cells fail to divide, then die away. I've heard
cells might change to something even worse, so I shall have to
face that maybe. I cannot know if I have beaten
this cancer until at least another 12 months has passed.
I have no ED or incontinence yet. I expect full incontinence and
total ED in years to come because all the
nerves controlling these were all fully irradiated. Nerves are
like wires, and pass electric currents, and I'm not
sure of how soon radiation will stop their function. But one 75 yo
customer told me he'd had my treatment
when he was 65 and he's doing fine. Yes, fine, but we ain't all
the same.
One side effect of ADT reduced bone density. I had a loss of 8%
during my first year on Eligard, so now I
take vitamin D and Calcium supplements. I probably down 3 litres
of milk and 2 litres of yogurt a week. Maybe
this years bone loss will be less. I began with 10% higher than
average bone density, so some loss is tolerable.
I've cycled 200km a week since March, regular as clockwork. Most
rides are 33km across town to
Tuggeranong for a coffee and a single small square of baklava from
the Little Istanbul cafe. I don't have to
order, they see me arrive and 5 minutes the coffee and baklava is
at my table and they give good service with a
smile. The cafe is run by muslims and I have no complaints.
Bowel function after radiation has very slowly improved, and best
on days when I ride a bit. But on days when
I don't ride, pooping is a bit irregular, maybe 3 times a day. (
OK, no need to tell me I'm full of shit :-)
-------------------------------------------------------------------------------------------------------
November 2010 to March
2011.
I began RT on 18 November 2010 at Canberra Hospital's Radiology
dept. I was initially marked with three
tiny tattoos for aligning the EBRT X-ray machines with one tattoo
spot on left and right hips where skin is thin
and one in front of the pubic bone. These positions move very
little relative to the position of bones.
This session with CT scanner took about 20 minutes after a short
wait and the results gave a fairly accurate
shape for the beam shape of the X-ray machine. The beams may then
be aimed accurately at the organ needing
treatment with minimal effects on surrounding tissues.
A week later I began the 35 sessions of daily radiotherapy, Monday
to Friday, with an occasional day off.
The X-ray machine I was assigned to broke down twice but my
therapy was continued using the remaining 2
older machines. There were no side effects until the second week
when I had to give up cycling the 40km trip
to hospital each morning. My urination became very painful and
bowel function became very irregular.
I began swimming about 700metres a day. I much welcomed the
occasional mid week day off for X-ray
machine maintenance, and for public holidays of Xmas and New Year.
Before each RT session I was required to make sure I had plenty of
water in my bladder, and a clean bowel.
After arrival at the hospital I changed into a blue gown and
waited my turn after a short wait.
There were usually 2 or 3 radiology staff who settled me lying
back down on a hard based movable table
with leg and head supports and hand grips to minimize body
movement. Laser beams on the tattoos allowed
body alignment within 1mm accuracy. My body was then raised on the
bed to be within about 300mm of the
rotating head of the large Lineac X-ray machine, about the size of
a small elephant. ( There was an elephant
in the room, ok? :-)
The X-ray machine shapes the beams according to the shadow shape
of the treatment area determined by
the CT scans also taken during the process. X-ray beams may be
applied from any direction around 360
degrees of rotation but for PC there are 4 different directions,
vertically up, down, and horizontally from left
to right and right to left, through hip area. The 4 possible
applied beams are aimed to intersect at the PG which
is the target. The accumulated X-ray exposure at the target volume
is highest, and may total about 70Gray.
At nearest levels at skin entry points there is about 1/4 of the
radiation levels at the target. I was told the
X-rays would cause skin reddening on each hip, upper pubic and at
lower back region, similar to a bad
sunburn, but I didn't have any burns like many others I met during
treatments. The "burn" goes deep into
everything in the beam path. Levels of beam intensity have been
carefully chosen by experts to cause
minimal risk of mutations and damage to healthy tissues over the
short or longer term.
EBRT has been done for many years now.
The Grey is a unit of radiation, after the scientist Mr Grey
who in 1940 defined the unit of radiation.
The average radiation dose from an abdominal x-ray is 0.0014Gy,
that from an abdominal CT
scan is
0.008Gy, that from a pelvic CT scan is 0.025Gy, and that from a
selective CT scan of the abdomen and the
pelvis is 0.03Gy. So EBRT giving 70Gy is like having 2,333 CT
pelvic scans. It would seem irrational to
worry about occasional chest X-rays or tooth X-rays when CT scans
gave maybe 20 times more radiation,
and EBRT thousands more than CT scans.
The accumulated radiation levels are highest at the beam
intersection at the target volume of your tumor.
Docs say PG cells that are weak after ADT will become inert after
the radiation while nerves and healthy
tissue survive better.
But long term EBRT side effects may include incontinence, ED and
bowel damage. Problems are on the
way.
There is some beam dispersal once arriving in the body, and at
each beam entry route there are 35 shots
of entry radiation, and 35 shots of exit radiation. But that's
less than at the target where there is 140 shots
total. Plenty of online chat groups describe unhappy stories about
medical side effects but few ppl chat about
having no troubles.
I finished RT on 11 January 2011, and most short term side effects
of painful urination went away within 2
weeks. Just exactly what was radiated was recorded. One quickly
gets used to the machine and the actual
therapy is all entirely pain free. I asked a radiologist why there
were only 4 directions for the beams, rather
than as many as possible to reduce radiation levels outside the
target area. She said it has been found there
are worse side effects to tissues outside the target volume when
the ingoing rays are distributed evenly around
the 360 possible degrees of direction. So it was better to have
four "tunnels" of high exposure to the target,
rather than spread it out. When I asked about IMBT, or Intensity
Modulated Beam Therapy, aka IMRT,
she said Canberra Hospital does not have it yet, and if it did it
would not be better treatment for Pca than
exists now, despite claims. But the IMBT is better for cancers on
heads and throats and other sites.
There are presently 3 EBRT X-ray machines at Canberra Hospital and
I was assigned No3, the latest.
The slightly older machines don't have quite the same ability for
accurate positioning immediately prior to
X-ray shots, but they are just as effective. I was lucky to be
assigned to the latest machine with the best facilities.
Some thoughts during treatments. During the 2 minutes of actual
treatment it was easy for me to lie perfectly still,
be brave, and think of Australia, and wait for radical
penetration.
There's no going back to how you were before therapy, and even
with a "cure" you will be affected. God
cannot help, because he isn't there. Probably my high level of
cardio-vascular fitness and mental health allowed
me to tolerate the EBRT far better than many others.
By 9 March 2011, nearly 8 weeks after RT was completed, I returned
to cycling 200km a week at about 24kph
average, and I have got back to a strict diet like Nathan Pritikin
said we all should have in 1970s. His ideas are
online if you search the name. Knee pain and other skeletal pains
increased during RT but have now reduced.
My doctor was well pleased with how I handled the radiotherapy,
and pleased by my progress afterward and
with all my cycling and swimming activities. I still have a
temporary uretic stent which causes temporary internal
bleeding if I cycle too far. I will have a minor operation
in mid April 2011 to remove the temporary stent and insert
----------------------------------------------------------------------------------------
October 2009 to
November 2010.
In December 2009 I was diagnosed with prostate cancer. Men of 62
have about a 1 in 25 chance of getting Pca.
Of all men diagnosed with Pca, at least 25% will die from the
effects of the disease. Early diagnosis should prevent
a death caused by PC, leaving a man to die of some other
condition.
My symptoms of prostate problems first appeared in about 2007 when
I needed to pee more often. I had been
getting regular annual PSA tests which were within the normal
range for my age up to about late 2008 when the rate
of annual change was some concern for me. In September 2009 my PSA
went to 6.7, a rise of 2.0 in just one year.
I was scheduled to consult a specialist urologist in November
2009. It is possible a man's PSA is high but he has no
cancer. The rate of change in PSA levels is what interests doctors
and tells them something could be wrong.
But I also had other problems.......
In October 2009 I had ridden my
bicycle at about 35kph over a wooden plank of timber lying on a
road and I nearly
crashed. A front wheel buckled and the steel frame bent so that
front forks were re-aligned to be about 5degrees more
vertical. The later repair job cost about $200, but I survived
this jolt to my body without falling off the bike.
But then my urine went cloudy. Tests were negative for any
infections but an ultrasound scan showed I had a blocked
left ureter with calcium deposits and a swollen left kidney
which wasn't working, and it could not be ignored. The kidney
may have been dysfunctional for a year or more. And I thought
the blockage could be caused by cancer. So I had two
problems I would be discussing in November with my urologist, Dr
Haxhimolla, a teaching surgeon and urology expert
here in Canberra. My dear Dr H arranged for me to have a
temporary stent placed asap which meant sometime in
February 2010.
Following the November discussion,
I had a prostate biopsy 4 weeks later in early December 2009.
The biopsy
procedure was done without anesthetic, with a special needle
firing gun inserted up the rectum. It felt like having my guts
stapled to my spine, and I couldn't withstand more than 9
attempts to get 12 samples. That was the painful procedure
I ever had. On 24th December 2009 I was told all 9 samples were
positive with aggressive cells, and Gleason score
was 9, and I was booked for robotic surgery. An operation for a
temporary uretic stent was booked for February
2010, and a possible RP as soon as waiting lists allowed. During
January and February the medical professionals
like to take holidays and go to overseas conferences, and many
change their positions at hospitals so its not a
good time to need to be treated. But during these months I had
CT and MRI scans. All were negative for cancer
outside the prostate gland itself. But such scans do not show
really tiny amounts of cancer spread. On the 7th February
2010 I had the endoscopic uretic inspection and more biopsy
samples taken. I had a temporary uretic stent inserted.
No more cancer was found. This little operation was like having
a terribly painful kidney stone inserted, and I needed
several morphine injections after the op. But after 2 days the
pain and bleeding subsided and I recovered after a
very miserable week. Probably the wounds left after taking
biopsy samples caused most of the pain. My urologist
changed plan from robotic RP and re-booked me for "open RP"
instead.
After February 2010, The stent prevented me riding much further
than about 50km without bleeding. This prevented
my long Sunday rides with my friends in the local Pedal Power
cycling group. But the doctors did say I might bleed
sometimes from physical exertions because the curled ends of the
stent rub tissues in the kidney and bladder and
thus can cause slight bleeding which would be temporary. They
did say I could ride a bike - but not how far or fast.
So instead of averaging 200km a week as I had during all of 2008
and 2009, I was forced to cut back to about 100km
a week in 3 rides of up to 50km, and at a slightly lower speed
and on smooth roads. But I was able to gradually
increase distances. I found out more about the "uncertainty
principle."
The RP attempt was on April 21, 2010. Afterward, my surgeon said
he could not remove the prostate gland due to
risk of "cancer spill" which meant that the operation was not
likely to stop the spread of cancer, plus there would be
immediate side effects of permanent severe nerve damage. But
although my Pca was outside the capsule, pathology
found no spread to lymph nodes or elsewhere. This agreed with
the total body CT bone scan I had had.
( I cannot be 100% sure. ) The doc said my ureter blockage was
caused by a change to shape of the bladder and
prostate region. My urology surgeon is the best man in town but
he cannot work miracles. The temporary stent was
left in place until it was replaced
in September 2010.
But right after April 2010 surgery my surgeon recommended ADT
and following EBRT instead of any further surgery.
Towards the end of my 3 days in hospital I had a visit from one
of the hospital radiologists, a handsome young man who
spoke with silver tongue while exuding nothing but confidence.
He told me a cure was extremely likely with the hormone
and radiotherapy. X-rays would be beamed in from 4 different
directions and will kill the cancer cells but leave healthy
cells unaffected.
I absorbed all this wonderful information rather like a man who
is given details of how to modify a pig to enable porcine
flight. "Yes Doctor, I hope is it all works out..." But I
thought it just would never work.
I began ADT with a month on Cosudex then began 3-monthly injects
of Eligard to under skin of stomach.
It is temporary chemical castration. It is assumed most prostate
cancer cells cannot grow and will die without a supply
of testosterone, an assumption that is quite wrong. I was told
that after 6 months on Eligard the cancer tumor size
and prostate swelling would reduce to make the target smaller
and easier to target with EBRT. The oncologist said that
full recovery is possible and that damage to nerves, bowels,
bladder, skin and hip joints is all likely to be minimal.
More facts about Eligard may be found at
http://www.eligard.com/about-eligard/default.aspx
Doctors love the positive outcomes. Negative outcomes are
published daily in the death notices in the local newspaper.
Much information about PC is available online Sloan Kettering
and John Hopkins hospitals in the US. What they say is
a bit more sobering than the "hopeful" sound of my radiologist,
and I could not know if the ADT and EBRT would work
much to extend my life.
Lady Luck was unkind. Before the Psa zoomed up in 2009 I had 1
in 25 chance of getting PC. Before the biopsy and
with PSA = 7, I was told the chance was 1 in 3. After the biopsy
I was told I have an aggressive form of PC.
Strategies like "watchful waiting" would be suicidal for me. I
thought I was lucky not to have to drag a partner with me
along this awful journey.
Should I have had a biopsy my PSA reached 4.0? My GP said the
risk of hemorrhage was high and that many biopsies
would be negative because other benign prostate conditions can
cause the PSA to rise. But I found I could ride a bicycle
a week after my biopsy later as if nothing had been done.
BPH without Pca is easily treated with pills. But in Pca
discussion groups there were many men who had three biopsies
after their PSA reached 3.0 and when cancer was finally found
they then arranged for the prostate to be removed.
This is best practice. In Australia it seems the Medical
Establishment waits until PSA reaches about 7 before "further
examination" is recommended. But my GP was right about the
dangers of biopsies, because during radiotherapy I met a
fellow who had terrible bleeding after a biopsy and he was in
hospital for 3 weeks, and was very sick indeed.
The PSA test and digital exam are both unreliable. My lady GP I
had been seeing at this time gave me my first digital
exam and she could not feel any hard lumps or abnormalities
although she said my PG was quite swollen. The digital
exam was a very nice experience, and there is nothing to fear
and you should not feel embarrassed.
The effects of the medical interventions meant I reduced the
work I did and income was much reduced to about zero.
Meanwhile I had a couple of friends. Without them I would be
utterly lost. They demand nothing and don't fuss over me.
With just a few good friends you don't need dysfunctional wives
or relatives. But many of my friends do have relatives
and make my problems look trivial. My father died of untreated
melanoma at 60, my sister from ovarian cancer at 60,
my other sister had a double mastectomy at 62. My mother of 94
is still alive and living independently like I do.
I'm not sure where the cancer gene came from. After seeing 3
close relatives touched by cancer I was just waiting
for my turn to come along and sure enough it did. I probably had
PC since 2005. I had witnessed two neighbors of
72 who died from PC and probably they got their disease at about
my age but at the time their condition went
undiagnosed before there was a PSA test and before anyone sought
a digital exam like I did, and before men realized
they needed to see a doctor more often for a check up.
The operation in April 2010 left a long scar to my abdomen and
forced me off bike for 10 days. Once I began the
slow release implants of Eligard in June 2010 my ability to
cycle up hills slowed and I began getting hot flushes.
My weight increased from 83Kg to 86Kg by about August. I found I
got fatigued sooner and there was some
increase in osteoarthritis-arthritis aches and pains which
mainly effect me during mornings and it took awhile to
begin a day's activities. I still was not sure if the Eligard
was working or not, but I later learnt that the hot flushes
indicate testosterone is below levels one would expect from
surgical castration, which was the standard treatment
for prostate swelling and / or with cancer present, in the days
before Eligard or much knowledge about hormones.
Castration of rich old men was done as far back as 1880s
according to copies of the Lancet magazine which have
been scanned and published online - Interesting reading! In
about September 2010 I bought new scales with
electronic read-out with 0.1Kg resolution. The new scales
confirmed my waist measurement increase. I responded
by increasing cycle ride distance and eating less and by
November 2010 at the beginning of radiotherapy was back
down to 83.5Kg. The combination of Eligard local side effects
and zero testosterone tends to make a man get a fat
stomach. I had to be cruel to be kind to stop the trend.
One does not become feminized without testo but but you soon
find yourself "prematurely aging", and blokes
who struggled to keep up with you now ride away leaving you
behind, and you know you are on your bloody own!
By November 2010 my PSA had fallen to 0.83 from a high of about
8 prior to treatment commencing in April 2010.
This was very good news.
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