PROSTATE CANCER
A five year journey trying for the best quality of life
Our experience ..
Jozef was diagnosed with multiple METS to the bones in June 2013 PSA 100 PSA doubling every month if we did not add anything
He died July 2018 His red cell and platelets count were crashing ..that in my humble opinion started after the radiation of multiple spots in his back for pain relief from bone METS
At the beginning there was a great panic .. We knew nothing..It was a learning curve
His journey was about aggressive disease ...Not about early diagnosis
We were in the public health system..It would have been nice to be able to afford an alternative doctor well versed in cancer
They are scarce and expensive..
We have found we could contribute ourselves
START
I would advice anybody confronted with Prostate cancer ...who wants to be actively involved with his own treatment ....to start with reading the prostate cancer protocol on the life extension site .
.It will show you can have an input..And it is easy to read
lifeextension.com/Protocols...
Also read what Steve Evans had to say
wikicuria.com/CancerCntlPro...
This will hopefully set you up to do some research on pub med ..You will find out there are multiple avenues
In the beginning I had it hard ..Until I got used to the acronyms
My husband could not do the reading ..He read the overall survival numbers ..It was too close to home and depressing for him
When I read the numbers it was to beat them
Over time I joined some prostate cancer groups in the US..
The cancer cured site is about all cancers
.It has Vincent Gammill ..Always worth reading what he has to say ..Leonard is very wise too..
groups.yahoo.com/neo/groups...
groups.yahoo.com/neo/groups...
healthunlocked.com/login?ui...
Yahoo advanced prostate cancer has some very knowledgeable people on it .
.Patrick O Shea is one of them ..He posts his comments on recent Pub med publications
ONE YEAR IN
We went off lucrin after it stopped working ( castrate resistant in a year )
This following link is an interesting take on a life long study of prostate cancer from Prof Thomas Talberg
medicinacomplementar.com.br...
We were on the Thomas Talberg protocol for a long time ...a mix of amino acids and trace minerals
.It would hold back the cancer about 70% ..All about quality of life
This might work much better with less aggressive disease..So I guess this would be interesting for people with an early diagnosis who opt for wait and see
We bought from Gaya nutrition after the Thomas Talberg clinic closed after his death
gaya-nutrition.com/prostate....
This is the original formula
I think the compounding lab in Albion Brisbane makes something similar..It does not include all the trace elements
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I want to share some things I am SURE made a difference . are feasible and do not break the bank. As it is all about living longer with a better quality of life
ABOUT VIT C
I know Prosstay at 10 a day ( 6 gram )( vitamin C and K3 ) gave us 6 months stable
If you can not find it .. (try Swansons
)
Big Pharma patented this and calls it Apatone A ..You can find studies on the web
We added a 60 gram vit c IV a week for a while
Later I made my own liposomal vit c .. qualityliposomalc.com/proce...
It is not too difficult once you done it once ..I My husband did not like the taste because of the lecithin
.
ABOUT PSK
PSK an extract from turkey tail mushroom works ..at slowing the disease
It can be taken with all cancer conventional treatments
Therapeutic dose 3.5 to 6 grams a day for a 30 % extract
We took it for years ..It is on the PBS in Japan (well in their system )
It has synergy with Vit E Gamma tocotrienols ncbi.nlm.nih.gov/pmc/articl...
qut.edu.au/health/about/new...
I also bought PSP from Oriveda for a while
Syd Mara at Oriveda is very knowledgably
Their site has good info about research and what to look for in a mushroom extract as they are not all made equal
In Australia you can buy PSK trammune ..It becomes expensive at 10 a day ..It is about a 30 % extract ..We bought it for a long time ...
Then I bought the extract in bulk and capped my own
To save some money I was told to add cheaper beta glucans to the PSK
I added the father Romano Zago protocol for a while
healingcancernaturally.com/...
A blend of Aloe Arborensis honey and vodka
I added extra vodka so it lasted a bit longer in the fridge ..and
this had the advantage of tasting nice ..
ncbi.nlm.nih.gov/pmc/articl...
ahccpublishedresearch.com/a... this tells you ..You will live longer ..
LOOK INTO REPURPOSING OLD DRUGS FOR CANCER
There is a trial going on in England with terminal cancers
ncbi.nlm.nih.gov/pmc/articl...
For a while we took Cimetidine Mebendazole and Griseofulvin
We took 2x 100 mg Celebrex almost throughout
Look into a low dose nitro patch
We tried low dose Naltrexone at 3 mg at night
We took Metformin
Look into adding a Statin with the Metformin ..There is lots of evidence for that
It can be a bit tricky to get hold of off label drugs .you have to find a sympathetic doctor and take the printout of the research with you ..sometimes you can find a supplement that works the same way .. ex We took Berberine for years ..then we took metformin
ABOUT SUPPLEMENTS
We took heaps of supplements
They changed now and then depending on what we were trying at the time
There is lots of talk about cycling them ..Not staying on the same supplements all the time ..To confuse the system
I would go to see a doctor-naturopath if I was not sure about mixing what supplements and drugs
Ex ..We were taking Berberine for a long time but when we took Enzalutamide we changed to Metformin as Metformin is not metabolised in the liver
Look into taking Propolis ( CAPE ) and Apigenin with Enzalutamide manukahealth.co.nz/en-nz/pr... this Propolis is the only one with guaranteed active ingredients
frontiersin.org/articles/10...
SUPPLEMENTS WE USED ON AND OFF
Most of them are anti inflammatory
DIM
Sulphoraphane ( brocco max )
Resveratrol
Nattokinase
Artemissin
Pomegranate
Lycopene
Frankincense Terry bosmed ..I added 5 loxin
Jozef took throughout 2000 Omega 3 ( life extension )
K2 MK7 when we were not on Prosstay
Vit D 10 000 a day throughout
Selenium .. Boron ..
Zyflamend ( anti inflammatory )
hindawi.com/journals/crionm...
mskcc.org/cancer-care/integ...
Propolis from Manuka health
Genistein
Resveratrol
Quercetin
Sulphoraphane
flax seed extracts
Biohawk Ginger ( Brisbane Prof C Hawkins )
Tumeric..( curcu brain )..Today i would probably try to make it liposomal
Melatonin 20 mg at night
nature.com/articles/s41698-...
ncbi.nlm.nih.gov/pmc/articl...
Google each of the supplements with prostate cancer and pubmed to find out more
If you get conventional treatment
Google your supplements with the therapy and synergy see if anything comes up
I bought a lot of supplements from Swansons and Iherb in the US
Iherb is the easiest to use and the fastest to ship It has free shipping
au.iherb.com/?gclid=EAIaIQo...
CONTACT ANYBODY
I would contact anybody any where ..If I thought it might help
I would write a friendly short letter or email with a straight question
I found lots of generosity ..If you can not afford a drug find out if there is a compassionate list
I once was given the advice..Do not fret about the treatments you can not afford ..It has proven wise
ABOUT PAIN
Pain control became a big thing some of the times
What I learned
DMSO HAS BEEN A GREAT HELP .
I bought the 70 % gel from Biovea
biovea.net/au/product_detai...
I rubbed his back all the time ( works for about 4 hours...sometimes much longer ) and it dissolved the osteo lumps on my right hand that did the rubbing
I added frankincense and oregano oil ..For the anti inflammatory action and the nice smell
(Read up on the oils ..they are not all the same quality )
When the pain was stronger I would add 10 ground up Endones to a tub and rub it in
Local pain relief without the intestinal issues of the opiod
Jozef also had a badly slipped disk and this kept him all right throughout
MAGNESIUM
ancient-minerals.com/produc...
I found it was great to relax the muscles ..a lot of pain has a muscle spasm component
If the DMSO was not working well enough... I would add the magnesium.on top .Not vice versa ..as the DMSO has to applied to CLEAN skin
So I washed his back every day
PALMITOYLETHANOLAMIDE
Look into palmitoylethanolamide for pain ( the nerve component )..Not a gimmick
neuropathie.nu/treatment/pa...
This is used a lot in the Netherlands normally referred to as PEA PURE
You can buy it from the compounding lab in Albion
Jozef took it for years
This is some of what I wished I had been told at the beginning of our journey..
It is to be taken as advice..It is only so you can find your own way .. I personally found the research empowering..To feel less of a victim
..All cancers are different ..Just look into the research and decide for yourself if you want to add to your treatment.....a little or a lot ..
.It is up to you
Talk to a sympathetic doctor …
.
I think most of the things we added were of incremental benefit …
They did not cure him
I do feel we have stretched his journey ..
Without adding to the burden..
an American doctor treating cancer patients with a combination of traditional and natural therapies replied to the question ..... if any of his supplements were of any value ....with the answer
My patients die in a reasonable condition .
.
THE POWER OF HINDSIGHT
WHAT WE MIGHT DO DIFFERENTLY
May be look into Gen reg ..I came to this info a bit late
rgccusa.com/files/9614/1342...
I think I would have liked the test on natural substances..It might have given some guidance on what supplements to try first
The tests on chemo therapy drugs is of no value if you can not access the drugs recommended.. Because they are not available .. super expensive and not on the PBS
Then maybe go for a more aggressive ADT double or triple blockade first up for as short a period as possible ..Then go for High Testosterone replacement
Through this whole journey I have never been able to get testosterone.
I would have also liked to try Deithylstilbestrol intermittently at low dose
onlinelibrary.wiley.com/doi...
I added oestrogen patches to Enzalutamide after it stopped working and his PSA dropped 14 % in 10 days . But ....by then we had the crashing red blood cells and platelets ..It was too late ..
A FINAL NOTE
After reading up for 5 years ... I think inflammation is The big worry
Cancer is an inflammatory disease..so anti inflammatory supplements the first port of call
especially if you were to have to have an operation .. Talk to your anaesthetist and see if you can have Ketorolac during the procedure ....read up
ncbi.nlm.nih.gov/pmc/articl...
Just hoping this could help or empower somebody .
.
Els
5-year survival rate?
QoL-Lick the spoon 
5 year diagnosis anniversary!
