My Cancer Journey So Far

[timbaker]

Hi Dave,

Very interested in your experience. I know a lot of folks don't give much credence to alternative therapies but I think experiences like yours point the way to what may become mainstream in the future. I'm interested in what you've been doing since your initial self-prescribed treament - if you have a maintenance program and whether any medical professionals have shown an interest in your case.

I guess I'm hedging my bets and doing it all - ADT, early chemo, as well as herbs, supplements, meditation, plant based diet, lots of exercise, intermittent cannabis oil. I was 50 when diagnosed and my wife was 42, so the effects of ADT are a massive blow to quality of life. I've had a good response to treatment and feel great, had a six month break from zoladex which was amazing, but rose from 0.8 to 8 over six months so back on it now.  PSMA scan shows only one small met on left rib. I've had targeted radiation recommended for that as a means of buying me some time off ADT, and some suggestion that in some cases this can even induce an immune response that results in a cure. No guarantees but seems worth a shot. I don't want to take risks with my health but Im at the point where I'm ready to try just abut anything to get at least a break from ADT.

cheers

Tim

 

[DaveK1200]

Hi Tim

Thanks for your interest.

If you private message me I'll be happy to tell you everything.

Dave 

[DaveK1200]

Seeing as Tim asked.

I had a break for a few months and then went back on to my complementaries/alternatives but at a reduced rate.

I dropped the bicarb for a few more months too.

 

As of about a month ago I'm back taking all 3 things but still at reduced rates.

Disproven1, Unproven1, Other

 

By the way,  if you are interested in reading an amazing case report published by a team of medical professionals based at the University of Utah here's a link.  

http://www.wjon.org/index.php/wjon/article/view/957/716

 

[Patrick Turner]

What amount of the Disproven1 plant is being ingested? tincture may be already a dilute solution, and you taking only 12 drops a day, which is a truly tiny amount, and what exactly happens when its ingested and broken down by digestive system?

I'd be one who likes to know exactly what I am taking and how much, and know what it does.

The sources of medical CDB could also be questioned. There are many different CBS oils in cannabis. What you may buy could be severely diluted, so that a full dropper full has almost zero CBD content.

Baking soda is slightly alkaline, and it supposed to make blood alkaline, but the body's control of its blood PH is something extremely well regulated or it leads to huge health bothers. How do you check your blood PH?

Methinks if alkaline food is eaten, the body reacts by making blood more acidic to counter attempt to make blood more alkaline.

What you are doing is all benign, but seems homeopathic, tiny amounts of stuff are expected to have an effect, and the placebo effect kicks in to make things seem like all is better.

Years ago, an Italian doctor began treating cancer patients with infusions of purified baking soda solution to arteries up-stream to cancer site, so blood flow in tumor was definitely alkaline. The tumors appeared to stop growing, but they didn't die, and later the cancer continued. The Italian Govt authorities found nobody got any success with baking soda, and de-registered this doctor; he did more harm than good, and there were no remissions.

Leatrile is another old remedy, with the active ingredient being extracted from bitter almonds banned in USA because it just didn't work.

See https://www.cancertutor.com/laetrile/

In bitter almonds the active chemical is cyanide with benzaldride and glucose molecule attached, and its absorbed by cancer and the cyanide causes cancer cell death, except for one thing, it hardly ever actually works. I read dosage  was with infusion to vein, up to 2,000mg a day, equal to what is in 2Kg of apricot kernels, (almonds)

I ate several Kg over 12 months without seeing the slightest effect on my rising Psa.

But all sorts of absurd claims are made about this junk.

Cyanide is dangerous if pure, and not within a complex molecule like amygdalin, the stuff in the almonds, with trade name Leatrile. 

Lord Noze what bad side effects occurred during Leatrile treatments.

 

And BTW, most ppl make CBD type substances naturally.

A lot of research was done in Israel outside US where all cannabis became illegal. The CBD has so far been found to be good treating some mental conditions, epilexy, and it does things many other drugs just don't do. But the supply of CBD is going to be legal here in Oz, and more about it will be found out. But in Jamaika where average intake is high, there's no lower cancer rates.

Most cannabis sold now is Indica variety, selected for high THC yield, with low CBD, and its what is sending many teenagers insane.

The wild Sativa has high CBD, lower THC, so no paranoia or addiction. If someone wants to discuss cannabis, fine, but there's little evidence it has the slightest effect on Pca. And just what you may buy is questionable, and the sellers include a big army of con merchants selling stuff with virtually no content for huge $$$$ and telling ppl they need to eat a gram a day.

There's more bullshit about cannabis than I can poke a stick at.   A very close friend grew some sativa, I saw the oil extraction, 22grams from 9 plants, and it only took enough to cover the head of a pin to get a high. It sure calmed me for 10 months, made boring TV interesting, and I didn't mind being a zombie at night. Next day I was clear as a bell, I kept cycling, and kept busy. When I gave it up because Psa graph showed ZERO change, there were no withdrawal symptoms, and not once did I have paranoia. So I really got to know about cannabis and cancer. All sorts of claims are made online  about its curing effect, and all are bullshit. 

 

Now I have a friend saying I should try redox solution, whatever it is. He is not pleased that I think its all bullshit until proven otherwise.

Please prove something I ask him, but no evidence yet. He says his wife's skin cancers all vanished, and she feels better. It may be true, but neither he or her are very healthy, and they have addiction to tobacco, and there's no way he or she could come out to join me for a little cycle ride of 60km. Many of my mother's friends smoked, and not one lasted to 80. She died at 98 with very few friends, and that was mainly luck with DNA, not a result of taking care of herself; she sure did that OK, but never exercised much and spent years being overweight. She didn't have an addictive personality, knew what both empathy and tough love were. The point I make is we are all different, and there are lots of crazy ideas out there, and Aunty Destiny can be a bitch. 

Patrick Turner. 

[DaveK1200]

Dear Patrick

Thank you for your comments.

 

Disproven1

 

I am not injecting or infusing baking soda.

I am not using apricot kernels.

I am not using redox solution.

So why bring those things up?

 

Have you ever heard of the debating term a Straw Man argument?

 

Its defined as giving the impression you are refuting an opponents argument while actually refuting an argument that was not presented by that opponent.

 

You are certainly entitled to your opinions, and I am too.

 

I would love to hear your opinion of the case report I mentioned in my previous post. If you feel uncomfortable clicking on a link please Google ...

Pancreatic cancer case report eight years 

That should find it.

It's chief author was Dr Kate Smiley.

 

As I wrote earlier no one is suggesting anyone should stop their current treatments.

 

I just think a few relatively inexpensive supplements are worth considering as long as you run them by your doctor.

 

Nothing in life is guaranteed.

 

Happy Easter.

 

Dave. 

 

 

 

 

[Patrick Turner]

On 3/29/2018 at 10:49 PM, DaveK1200 said:

Disproven1

Indeed, and what are herbs? plants, OK, and you have not answered my questions about what is really in the Disproven1, how much, etc, and probably, its quite harmless, but probably not having the slightest effect on your Pca. 

Rene Caisse sounds like an interesting person, but just because some Ontarians put up a statue of her does not mean the herbal mix she made was effective. I need proof. How are you sure you are getting the same as Rene offered? 

Infusing/injecting baking soda has a large effect on blood PH but it cannot be too large of a bloke might die. The high dose was found to not have any long term reducing effect on Pca. If you are dissolving a couple of teaspoons a day of baking soda in water, I estimate the change to blood PH is completely negligible, so no effect on Pca.

And you have not answered y question as to how you are measuring your PH.

It is a free country, and I'll bring up whatever I see fit to bring up in any conversation. I get told to STFU some times, often by ppl who refuse to read or listen. The so called straw men are relevant because your alternative measures appear to me and dozens of other to be a vain attempt to cure your Pca, like redox, apricot kernels and a whole pile of other junk.

Pancreatic cancer is different to Pca, and unlike Pca, you don't get much time to try alternatives because usually you die fast.

Its unlikely that what is alleged by Dr Smiley works very well, and unlikely it will work for Pca.

 

If any of these alternative remedies worked more often then they really do, news of it spread like wildfire, and we'd all take what appears to work, but that phenomena just has not occurred.

 

There may be cases where the alternative junk works but they are so rare that almost nobody bothers to try them. Alternatives have a terrible reputation. They may make you feel good, but even while I took cannabis oil and apricot kernels it didn't make me feel good because the Psa just went upwards. At that time my Psa was less than 1.0. I need to have a definite positive result before I feel good. I just put up with displeasure of knowing I am going down. Its just not a big deal for me though.

I doubt telling my doctors I was taking cannabis and apricot kernels was ever going to get their approval. Just do it. I knew its harmless, but I proved for me it was useless, and so many things you find on Internet are just all bullshit, so the best attitude to have is to assume all alternatives and quite a few mainstream approved remedies just may not work at all unless proven otherwise.

ADT has given me years of life, but I know a guy who had 1 month benefit before Psa went up again, and Cosadex made Psa go from 7 to 40 in 2 months, and doctors decided his cancer was not at all controllable by any form of ADT, so no abiraterone, no enzalutamide, just straight onto chemo with docetaxel. He was coping well after 2 doses, Psa came down, and its the only thing that seems to have worked much, but for how long? You can't keep having chemo for ever.

The problem with Pca is that even while it is sleeping with ADT, it is mutating, and then cells make their own di-hydrotestoerone. But the mutation just continues and becomes a bunch of variegated cells, so the longer it goes on the less chance there is of anything slowing it let alone curing it. ADT delays the process of mutation. It gives us time. There's a whole lot of us here who are not dallying about with alternatives, and we cannot be convinced they'll ever become mainstream.

I recall it was President Nixon who began injecting huge Govt funds to cancer research which previously was mainly funded by rich folks because they hate dying and parting with life. Anyway, trials of thousands of chemicals were tried to find a stopper for Bca, and the effort meant large teams of paid professionals trained in their speciality, going hard at it for year after year. They have found a few things. Disproven1 is not in the list. Pca research is also funded, and some treatments cost a pretty penny indeed, but many older men are happy to pay a houseful of dough to live an extra 5 years. 

Indeed nothing in life is guaranteed, or permanent, or certain, or entirely predictable, or affordable, but the exception is death. Very guaranteed, etc.

Patrick Turner.  

 

   

[DaveK1200]

Patrick,

 

You wrote "Its unlikely that what is alleged by Dr Smiley works very well, and unlikely it will work for Pca."

 

Your opinion surprises me, because the doctors actually gave credit for his recovery to the chemoradiation therapy.

 

"Based on our review of the literature, this is the first presented case of a patient with surgically unresectable disease who had a complete response to adjuvant chemoradiation therapy for pancreatic cancer."

 

Perhaps you missed that bit and assumed they were in favour of alternatives?

Did you actually read the report?

 

Below is the entire section of the report headed DISCUSSION including the parts where they warn that alternatives are not proven and caution about drawing conclusions from this case study.

 

However, at the end of this section they suggest it might be interesting to conduct a clinical trial of chemo followed by the 2 other things the patient claims that he took. A clinical trial would be great, but I won't hold my breath waiting for it.

 

begin quote from report....

 

Discussion
Pancreatic cancer continues to be one of the most challenging
areas in oncology, with an exceptionally poor prognosis for the
majority of patients. Longevity with advanced-stage disease is
quite limited and there are very few cases of long-term survival
after palliative surgery and chemoradiation in the literature.
Chemotherapy has demonstrated limited success for advanced
pancreatic cancers, and more efficacious therapies are needed.
Based on our review of the literature, this is the first presented
case of a patient with surgically unresectable disease
who had a complete response to adjuvant chemoradiation
therapy for pancreatic cancer. Given this patient’s oncologic
results and long-term survival, we were skeptical of his initial
diagnosis. We therefore obtained his original pathology slides
and had them read by three pathologists from two institutions
who were blinded to the patient’s diagnosis and previous pathologic
interpretations.
Patients with advanced pancreatic cancer sometimes seek
alternative remedies when conventional therapies either fail or
are deemed futile. In this case, our patient chose to use Protandim
and ... . Promoters assert that these agents serve
as immunomodulators, analgesics, appetite stimulants and antineoplastic
agents [10, 11]. There is however no valid scientific
evidence to support these assertions. To the contrary, an
article published in Nutrition and Cancer recently compared
... to paclitaxel to study its anti-proliferative effects in
prostate cancer cells, both in vivo and in vitro. The study demonstrated
no significant difference in tumor size, cell cycle distribution
effects, or cell toxicity after treatment with ... versus control [12]. Although we cannot completely discount
the potential impact of its use, either alone or in combination
with standard chemotherapeutic regimens, caution should be
exercised in drawing conclusions about its efficacy in this case
study. The anti-proliferative effects of... and Protandim
have not been studied in pancreatic cancer. Based on
the observation from this case report, it might be interesting
to conduct a clinical trial of standard chemotherapy followed
by long-term application of the two nutraceutical supplements
taken by this patient: Protandim and ... .

 

end quote

 

The full report includes scan images and is fully referenced.

 

 

regards

 

Dave

[DaveK1200]

Patrick asked me how I am measuring my pH levels.

 

I use Alkaway Diagnostic pH Test Strips which appear to be from a reputable company.

I have no scientific evidence as to their accuracy,  but I have chosen to accept them at face value.

 

Their web site address is  http://alkaway.com/product/diagnostic-ph-test-strips/

 

Here are a few paragraphs from their web site 

 

Begin quote from their web site .....

 

Measuring pH

The pH scale goes from 0-14, where 0 is very acidic (think battery acid) and 14 is very alkaline (think lye water).

In general, the pH of the human body should be slightly alkaline — about 7.4. A pH reading in the Optimal Zone tells you that your insides are happy, while a pH reading in the Danger Zone may mean you’re putting yourself at risk for serious disorders. Even a slight pH imbalance can make you feel tired, cause you to gain weight, give you trouble digesting food, and create aches and pains in your body.

Most parts of the body have a pH range they can tolerate. The skin can vary from 4.5 to 7.0, for example. Stomach acid ranges from 1.0 to 3.0. And pancreatic secretions go from 8.0 to 8.3. But the blood is not so flexible. It has a very narrow pH range: 7.365 to 7.45. If the pH of your blood goes outside that range even just a little, wham, the functioning of your organs is compromised. If the pH of your blood strays too far from that acceptable range for too long, your body will go into shock… then potential go into coma … then maybe death.

That kind of severe metabolic acidosis is rare; however, mild acidosis is now thought to be strikingly common — affecting at least half of the population.

One point makes a world of difference

pH doesn’t work like regular numbers do, where 6.0 is “one point less” than 7.0. It works logarithmically, just like the Richter scale for earthquakes.

That means for each point you drop away from the ideal of 7.0, you’re actually experiencing a 10-fold decrease in your pH! For example, someone with a pH of 6.0 is ten times more acidic than someone with a pH of 7.0. Someone with a pH of 5.0 is 100 times more acidic than someone with a pH of 7.0

Fortunately, AlkaWay Diagnostic pH Test Strips provide an easy, accurate, and affordable way to find out exactly where you stand.

Your urine and saliva hold the key to your health

How do you measure what’s going on inside of your body? By analysing what it’s secreting: urine and saliva.

Thanks to the kidneys, the body is constantly trying to get rid of excess acids through the urine, which can range in pH anywhere from 4.5 to 8.5. The pH of your urine is a good reflection of the pH of your internal environment. If your urine tests high in acids (below 6.75), then you know your body is high in acids too (Not good!). If your urine tests low in acids (above 6.75), then your stores of alkaline minerals are doing a good job of buffering the acids in your body (Awesome!).

Another way to find out the overall pH balance (or imbalance) of your body is to test the pH of your saliva. Saliva pH can range anywhere from 5.5 to 7.5 or more.  If you have enough alkaline minerals, your saliva test should register a nice 7.0 to 7.5. But if your mineral reserves are too low, the acids will overwhelm your system, and you’ll test under 7.0.

Some people even test as low as 4.5 – 5.75, which is not where you want your pH to be. In fact, if your pH tests that low, we recommend you take immediate action to correct this acidity. Remember, because the pH scale works like the Richter scale – i.e. logarithmically – a pH of 5.0 is 100 times too acidic!

 

End quote from their web site.

 

regards

 

Dave

 

[Patrick Turner]

21 hours ago, DaveK1200 said:

I use Alkaway Diagnostic pH Test Strips

I hope they give you useful information. I use similar strips for measuring pool water PH, and when it went a bit acidic after last Xmas it became impossible to control some algae but a couple of packets of bicarb has educed acidity, and I have not had to use many chemicals at all since, and its good to swim in it, especially after an 80km cycle ride.

The quoted material from a website might be correct, and if they are, then what they say about blood PH agrees with my assertion that  blood PH is very tightly controlled and that taking two teaspoons a day of Na H Co3 is not going to make much difference to blood PH and so no difference to cancer growth, which can be so insidiously slow, that some ppl deny it is occurring, like they deny global warming.

 

The Italian doctor who injected bi-carb into ppl's arteries just upstream of a cancer site made PH go more alkaline at the cancer site and while that went on, its highly likely the PH control of patients tried to make blood more acidic, but at the cancer site, blood was slightly more alkaline and Doctor claimed cancer cells died. Later it was proved he made false claims because the cancer didn't die, it later resumed business as usual to kill the patient. It has not stopped the myth about PH able to kill cancer because many ppl see all science as a plot against humanity, and huwomanity, we must not forget females, who seem more prone to being conned by quacks and bullshit artistes about a whole lot of things. 

I probably have a "normal" level of PH in me saliva and piss, because I have a good diet, and get a large regular amount of exercise. So I'll be fit+healthy right up to time when cancer knocks me down, and in nature, many animals are fit to the end, then suddenly decline, and then are rapidly absorbed by the environment. Unfortunately we have this death industry that sucks $8,000 to deal with a dead body, and there's nowhere I can be just be wrapped in a sheet, and lowered into a hole and properly forgotten about. Backhoe hire might be $200.

Put under a tree, it does the tree good. No greenhouse gas from burning me.

 

Steve Jobs tried alternatives when he got pancreatic cancer, but then had to switch to mainstream when the alts just didn't work. He's very dead now, but of course he's left us with mobile phones which utterly dominate millions of lives so much that teachers in schools can't teach the kids, and ppl who I see filling restaurants have mobile out, and conversation is quiet, and nobody reads a book, and to me they are all insidiously becoming dumb arses. But we can call an ambulance easily, or know our exact position within a metre  of two, and thus be tracked. The phones and the Internet are not offering a cure for Pca. But not everyone is tracked because I don't have a mobile, but I do browse Internet a bit. I should get piles of spam from folks offering cancer cures, after analyzing my Net habits, but no, nothing comes. Cancer is still something ya just gotta suck up.

 

I did subscribe to a couple of info sites for Pca, and then they changed to wanting a fee for subscription and suddenly they info became more trivial and in general, not worth a read, so ppl don't like paying for info, and especially not when none of it leads to a cure.

But one of these sites said Provenge is not going so well and has lost its slight reputation. When announced 10 years ago, approx., it promised so much, but it cost $90,000, and a bloke had to go to bloody USA to get it, and put up with yanks, so if you went to USA the total  cost $140,000 including travel costs, and no Medicare funding. Plenty men went though, we don't hear from them, so they musta died. A Chinese company owns it now, they are trying to get it going better, which often means they plan heavier marketing but cure rate is still abysmally low.

But, I could be wrong, I know Chinese are not dumb, and might improve on the idea. And like so many other things, they may do it all cheaper than businesses in "western" nations. One reason is that an hour of Chinese labour costs $4.00, and an hour of US or OZ labour costs $40.00. We don't mind Chinese slaves. 

 

I hope you don't see this email contains a straw man, but if you do, its OK, take the straw man into back and pull 'im apart and lay 'im down around your home grown veggies to get better moisture retention of the soil. 

 

Patrick Turner. 

 

 

 

 

[DaveK1200]

Dear Patrick,

 

Thank you for your comments.

 

As I wrote several times earlier, I am not suggesting that anyone should stop their current treatments.

My GP, Urologist and Oncologist told me that the 3 things I wanted to try probably wouldn’t help me, but that they wouldn’t hurt either.
I’ve never said they were a cure, just that I think they have helped me.

I believe that a few relatively inexpensive supplements are worth considering as long as they are ok by your doctors.

 

By measuring my urine pH regularly I can certainly see a difference in the readings if I ever skip the level teaspoon of bicarb for a few days.

There’s an old saying “You are what you eat.”
So I suspect that anything we eat or drink might have an effect on us, even if we don’t really understand how.

 

I have asked you on several occasions can we please just “agree to disagree”, but so far those requests seem to have fallen on deaf ears.

 

In your latest post you make light of my concern about your “Straw Man” arguments.
“I hope you don't see this email contains a straw man, but if you do, its OK, take the straw man into back and pull 'im apart and lay 'im down around your home grown veggies to get better moisture retention of the soil.” 

 

That was quite funny, even though I suspect it might have been an attempt to downplay your previous Straw Man arguments by using humour.
 

Last Thursday you wrote “What you are doing is all benign” but then you seem to want to conflate those benign things with as many examples of what you consider quackery as you can think of.

In another post you wrote .. “The so called straw men are relevant because your alternative measures appear to me and dozens of other to be a vain attempt to cure your Pca, like redox, apricot kernels and a whole pile of other junk.”

That sounds to me a bit like  “The ends justify the means, so I feel justified in throwing mud at whatever I want to.”

Others reading this might not know what a Straw Man argument is, or how powerful they can be, and how easily they can distract from the original issue.

Here is an explanation and some examples from Wikipedia (I know it’s not always reliable but I think it should be alright in this case.).

A straw man is a common form of argument and is an informal fallacy based on giving the impression of refuting an opponent's argument, while actually refuting an argument that was not presented by that opponent.^[1] One who engages in this fallacy is said to be "attacking a straw man".

The typical straw man argument creates the illusion of having completely refuted or defeated an opponent's proposition through the covert replacement of it with a different proposition (i.e., "stand up a straw man") and the subsequent refutation of that false argument ("knock down a straw man") instead of the opponent's proposition.^[2][3]

This technique has been used throughout history in polemical debate, particularly in arguments about highly charged emotional issues where a fiery "battle" and the defeat of an "enemy" may be more valued than critical thinking or an understanding of both sides of the issue.

Straw man arguments often arise in public debates such as a (hypothetical) prohibition debate:

A: We should relax the laws on beer.

B: No, any society with unrestricted access to intoxicants loses its work ethic and goes only for immediate gratification.

The original proposal was to relax laws on beer. Person B has misconstrued/misrepresented this proposal by responding to it as if it had been something like "(we should have) unrestricted access to intoxicants." It is a logical fallacy because Person A never advocated allowing said unrestricted access to intoxicants.

 

Here’s another example involving Richard Nixon (who you mentioned earlier).

An example often given of a straw man is US President Richard Nixon's 1952 "Checkers speech."^[11][12] When campaigning for vice president in 1952, Nixon was accused of having illegally appropriated $18,000 in campaign funds for his personal use. In a televised response, he spoke about another gift, a dog he had been given by a supporter:^[11][12]

It was a little cocker spaniel dog, in a crate he had sent all the way from Texas, black and white, spotted, and our little girl Tricia, six years old, named it Checkers. And, you know, the kids, like all kids, loved the dog, and I just want to say this right now, that, regardless of what they say about it, we are going to keep it.

This was a straw man response; his critics had never criticized the dog as a gift or suggested he return it. This argument was successful at distracting many people from the funds and portraying his critics as nitpicking and heartless. Nixon received an outpouring of public support and remained on the ticket. He and Eisenhower were elected by a landslide.

 

See how powerful and distracting a Straw Man argument can be?

I suspect that you might not really be interested in changing my opinion.
Instead I suspect that you are trying to convince anyone reading this post that you are somehow winning a “battle” as per my earlier Wikipedia quote. ...
“This technique has been used throughout history in polemical debate, particularly in arguments about highly charged emotional issues where a fiery "battle" and the defeat of an "enemy" may be more valued than critical thinking or an understanding of both sides of the issue.”

Why am I writing all this?
I don’t like my opinions being misconstrued/misrepresented.
I don’t like my opinions being lumped into the same basket as everything that you consider quackery.

The phrase “being tarred with the same brush” comes to mind.
 

It also concerns me that you made a statement dismissing the medical report I mentioned "Its unlikely that what is alleged by Dr Smiley works very well, and unlikely it will work for Pca."   I suspect that you didn’t read the report properly.
The report clearly showed that they credited the patient’s response to chemoradiation. "Based on our review of the literature, this is the first presented case of a patient with surgically unresectable disease who had a complete response to adjuvant chemoradiation therapy for pancreatic cancer."
The report then went on to suggest it would be interesting to conduct a clinical trial of the chemoradiation followed by long term application of the alternatives he said he had used. What was so bad about that?

In the future if you can’t be bothered reading a report properly perhaps you would be kind enough to declare that you haven’t fully read it, instead of giving the impression that you are making an informed judgement.

(I urge everyone to read that fascinating report on the World Journal Of Oncology website.  http://www.wjon.org/index.php/wjon/article/view/957/716)

You also wrote earlier  .. “I doubt telling my doctors I was taking cannabis and apricot kernels was ever going to get their approval. Just do it. I knew its harmless, but I proved for me it was useless, and so many things you find on Internet are just all bullshit, so the best attitude to have is to assume all alternatives and quite a few mainstream approved remedies just may not work at all unless proven otherwise.”

 

 In my opinion that was a very irresponsible thing to say because I feel that you should always tell your doctors about everything that you are taking. Even if they don’t think it will help they still need to know what you are taking in case it conflicts with your current medication.
Your statement also reinforces how you are totally against anything that might be considered alternative or complimentary, and you have the right to feel that way.
However, I am glad that the doctors in the pancreatic cancer case report mentioned above were open minded enough to suggest that a proper clinical trial involving the two nutraceutal supplements taken by the patient might be worthwhile.

 

 

Of course these are only my opinions.
I am entitled to my own opinions and you are entitled to yours.

Once again, can we please just agree to disagree?

 

Kind regards

 

Dave

[Patrick Turner]

1 hour ago, DaveK1200 said:

Oncologist told me that the 3 things I wanted to try probably wouldn’t help me, but that they wouldn’t hurt either.

What I would want, and maybe more of us, is to know exactly how things you try could possibly help, apart from having a placebo effect. What do we want? A cure.

When do we want it? 2 years ago would have been nice

There's not a great deal in the rest of your post to help me tolerate Pca any better than I have taught myself.

I see you think I'm irresponsible to self medicate with apricot kernels and cannabis oil, the real stuff I saw my close friend grow. 

Cannabis has been used for thousands of years, and apricot kernels aka bitter almonds are a common foodstuff in countries where millions of ppl have not yet been corrupted by the ruinous habit of eating things which are only sweet, ie, jam packed with sugar and corn syrup and junk promoted by farmers and supermarkets because its a quid, but isn't nutricious.

If everyone was like me, all farmers and supermarkets and food processors would go broke real fast, because only about 3% on shop shelves is acceptable for me.

But then if they were like me, the demand for my wise choice of healthy food would rise, and push up the prices tenfold and make life expensive so for me, so its a benefit that most ppl eat foolishly. 

 

I will be the decider of what I eat, or don't eat, and there was never the slightest need or obligation to involve a GP or an oncologist, nor those who advertise junk food and all manner of garbage, which leads to or exacerbates modern illnesses such as diabetes.  

I respect and like my doctors, but they have not given me a cure, just delayed the inevitable. Its probably beneficial for me to be addicted to cycling, benign, and I sure don't need to ask permission from a darn medico. They like to see me arrive to have a chat dressed in lycra, and I ain't depressed, I am continuing to help myself in real terms that work for me.

 

I disagree with bullshit everywhere I hear it. It upsets many ppl, and I'm glad it does, because so often ppl do things they have no real reason to do. 

Patrick Turner. 

[DaveK1200]

Patrick,

 

Please stop deliberately twisting my words.
It is so obvious.

With regards to you not telling your doctor what you were taking.

 

 Here’s what I actually wrote:
“In my opinion that was a very irresponsible thing to say because I feel that you should always tell your doctors about everything that you are taking. Even if they don’t think it will help they still need to know what you are taking in case it conflicts with your current medication.”

 

Here’s what you wrote in answer to my comment:
“I see you think I'm irresponsible to self medicate with apricot kernels and cannabis oil, the real stuff I saw my close friend grow.” 

 

I believe that’s a dishonest misrepresentation of what I said and yet another classic Straw Man argument.
 

You also wrote:
“There's not a great deal in the rest of your post to help me tolerate Pca any better than I have taught myself.”

 

Well that’s not very surprising because the majority of my previous post was taken up in pointing out where I believe you have misrepresented my opinions.
I haven’t seen you try to rebut any of my points from that post so far, all you seem to do is throw more mud.
 

However, near the start of your post you wrote:

“What do we want? A cure.

When do we want it? 2 years ago would have been nice”
 

I would love that too.
I suspect that many fair minded people who were prepared to read that medical case report I mentioned from beginning to end might just see a tiny glimmer of hope in it.
Perhaps there might just be a chance that there’s something in those supplements that he took that might be worth looking into.

I know that the doctors didn’t say that, but they did suggest that it would be interesting to conduct a clinical trial, so perhaps they think there might be something worth looking into too.

 

You finished off your last post by saying: 
“I disagree with b******t  everywhere I hear it. It upsets many ppl, and I'm glad it does, because so often ppl do things they have no real reason to do.” 
 

Finally,  something we can agree on. 

 

Kind regards

 

Dave

 

 

 

[Patrick Turner]

On ‎4‎/‎5‎/‎2018 at 3:13 PM, DaveK1200 said:

Please stop deliberately twisting my words.
It is so obvious.

Twisting your words is not what is obvious to me. Lord Noze what anyone else thinks, and I don't much give a damn.

This is a forum, so prepare for some heated arguments. I am not easily offended, and you need to learn to not be offended, and address the issues, not the man, and this man here has no plans to obey you. The best discussion groups have no moderators and they are lively, and not dulled down to nothing by nobody being allowed to upset or disagree with anyone else. 

 

Most of the rest of your post complains about me not understanding you, but that's another bullshit stance.

What have you to offer everyone about the fight with prostate cancer?

 

There are many beliefs about alternative treatments to mainstream which have all the validity of Father Christmas. There are folks who take astrology seriously, and believe in spirits, Gods, and 1,001 other things which I see no reason to waste one second upon.

Thus, there will be maybe thousands of ppl who will never like my posts, and I don't give a damn and I don't need to be liked, I am here for the stories about cancer, and WTF are we to do about it, and I for one have little time to believe any alternative has any effect on cancer until proven otherwise. 

Fortunately, I have interests away from this group, and I fill 99% of my time not thinking about cancer or depressing other ppl who don't have cancer by telling them about it. I know what's coming, in time, I've read hundreds of stories of guys in many groups before this one, and including the posts by the men's relatives, real sad reading it is. But ya can't live forever, or do much yourself to stop Pca.

If you think you can, prove it.

Patrick T.

 

[DaveK1200]

Dear Patrick,

 

You wrote “The best discussion groups have no moderators and they are lively, and not dulled down to nothing by nobody being allowed to upset or disagree with anyone else.” 
 

I strongly disagree to a situation where people feel they can fire insults at each other with impunity. Almost every week we hear about someone taking their own life because of bullying, and I suspect that unchecked internet forums or chat rooms are often involved.

 

I also believe that a discussion group like that might not really be suitable for an Advanced Prostate Cancer web site. 
Surely we are all in the same boat, we should be trying to help each other and not trying to ridicule fellow cancer sufferers’ views.

 

 You wrote: “This is a forum, so prepare for some heated arguments. I am not easily offended, and you need to learn to not be offended, and address the issues, not the man, and this man here has no plans to obey you.”

 

I am not easily offended either.
However I do reserve the right to defend myself if I believe that I have been misquoted or misrepresented.

 

So you think I need to “address the issues, not the man”.
Most people say “Play the ball, not the man.”, but that’s ok.
I am amazed that you claim that I am “playing the man”.

I’ve always believed that “playing the ball” in a discussion means responding to the actual words that the other person used, not responding to something they didn’t actually say, or describing their views unfairly and then accusing them of talking b*******t.

That’s why I usually quote your actual words and then try to give a logical and fair rebuttal.

 

Perhaps my understanding of what “play the ball” means is wrong?

So I looked for an article about the subject written by someone else.

Within a minute I’d found an article written by a Tony Payne in 2013.

I don’t know him from a bar of soap, but his article seemed logical and fair.
So I’ll quote the bit where he talks about how to know when someone is playing the man and not the ball....
 

“Several little indicators give it away. You know you’re dealing with someone who is playing the man not the ball when he makes a straw man of your view; that is, when he presents your side of things in an extreme or ugly light, or describes or illustrates it in such a way as to make it unattractive. By contrast, a ball-player endeavours to describe and present the opposing view as fairly and reasonably as he would like someone to present his own view.” 
Extract from article by Tony Payne 2013.

 

I think his opinions on what “play the ball” means seem fairly close to mine.

 

 

You wrote: “If you think you can, prove it.”

When someone is asked to prove something, it’s only fair and logical to conclude that they have been asked to prove their claims.
It would be illogical to ask someone to prove something that they haven’t claimed.

So my answer is YES , I can prove everything that I have actually claimed.

I can prove that I was diagnosed with metastatic prostate cancer in late 2016 by my medical records, biopsies and Ga68 PSMA PETCT scan.

I can prove that I only had 2 x 3.6 mg Zoladex implants by my medical records.
I can prove that I purchased the complementary supplements that I took by the purchase invoices, and I could easily get statements from many people to confirm that they saw me taking them.

I can prove that the metastases shown in my first Ga68 PSMA PETCT were not present in the second Ga68 PSMA PETCT scan by comparing the reports from both scans.
 

I suppose the toughest thing for me to prove is that I believe that the complementary supplements helped me.
To prove that you believe in something is always difficult.

However, because I have being saying it since October last year, and that all my friends and family would vouch for my honesty, I suspect a court might find my belief  would be “proved beyond reasonable doubt”.  
I would also be happy to take a lie detector test to confirm that I believe it if anyone is prepared to pay for one and organise it.

 

I know that metastases might return at any time.
I have never claimed that I was cured, only that I believe these things have helped me.

 

This section is headed  “My Story ... Members tell of their own history”.

That’s all I’ve been trying to do, tell what’s happened to me.

 

Unproven means exactly what it says ... unproven.
No more, no less.
Everything that is counted as proven today was unproven at some point in time.

So it is illogical to assume that anything that is unproven is automatically quackery.

At least the team of doctors in the pancreatic cancer case report I have referred to earlier were open minded enough to suggest it might be worth doing a clinical trial of chemo followed by the two other things the patient took.

 

Kind regards

 

Dave

 

 

 

 

 

 

 

[DaveK1200]

Hello everyone,

 

I haven’t been here for a while, so here’s my latest update.

 

My previous PSMA PET scan showed all clear in May 2017 when my PSA reading was only 1.4.

Since then my PSA has been steadily rising at a rate of roughly 40% every three months.

My PSA 3 months ago was 8.5, so when I had another PSA test last week I was expecting it to be somewhere between 10 and 12..

Fortunately this time it dropped a tiny bit to 8.2, which was a pleasant surprise.
I know that drop is too small to mean anything and that it might jump again next time, but staying the same is better than going up.

 

I have also just had my third Ga68 PSMA PET/CT scan.  (A big thank you to the DVA)
My first scan was done in December 2016 at the Wesley hospital, just after I had been diagnosed.
My second scan was done at Qld X-Ray Mater PET/CT centre in May 2017, and it showed all clear.
Last week’s scan was at the Wesley hospital again, so they could directly compare their two scans.
 

I suspected that the new scan might pick up something this time because of my PSA, and it did.
Discussed it with my oncologist on Wednesday, and there’s some good news and some bad news.

 

First the bad news  .. 
I have a new PSMA avid involved lymph node on my left side.
I also have a new small non-PSMA avid pulmonary lesion on my right side which my oncologist feels is not cancerous.

 

Now the good news  ..
My prostate itself appears to be much improved on how it was in my original December 2016 scan.
The latest scan just suggests a “Small recurrent prostatic lesion” which is posterior to the line of the prostatic urethra. 

I didn’t totally understand that, but my oncologist said that my prostate appears to be in better shape than it was 20 months earlier.
That might help to explain why my urine flow is better than it was 2 years ago, and why a certain activity is no longer a “fine line between pleasure and pain”.

My previous right pelvic side wall PSMA avid involved node has resolved. (It’s gone.)
My previous left paraaortic PSMA avid pleural related lesion has resolved too.
My previous paraoesophageal node has decreased in size and shows a small focus of calcification “in keeping with a response to treatment”.  (My last ADT was a 1 month, 3.6mg Zoladex implant in March 2017 ... 17 months ago.)

Also .. the report says “no skeletal lesion seen” which was a great relief because I have been having some minor rib pain from time to time. I suspect that might be from a motorcycle accident in 2015 where I shattered 7 ribs.  (I bought a replacement bike of the same model and colour just 2 months after the crash.)

 

Overall my oncologist said that my scan was much better than my first scan taken 20 months earlier. 
He was also pleased that my PSA had not gone up this time, and that I am looking and acting so well.

He has always known what I have been taking and is fine with it.

He suggested 3 options, and because things have been progressing slowly for me he was happy for me to take any of them because we should have time to adjust if necessary.

Option 1. Just keep doing what I’ve always been doing and if the PSA jumps too much in the future we should go to option 2 or 3.
Option 2. Have a course of bicalutamide tablets.
Option 3. Have a Zoladex implant.

 

He also said that if I was very anxious about it, and if I really felt that I should be doing more, then he would suggest the implant.

 

At this time I have decided to stick with Option  1.
I am feeling fine and things seem to be slowly improving, and I am reluctant to interfere with that slow improvement.

 

If things change I will certainly consider ADT again.

 

Kind regards

 

Dave

 

[DaveK1200]

Hello everyone,

 

I thought it might be time for a December 2018 update on my progress.

 

My Oncologist sent me for a bone scan because of my concern about minor rib pain.
He rang me with the good news that it all looked ok.

 

I also had another PSA test and it came back exactly the same as 3 months ago ... 8.20

I’ve been having PSA tests every three months since first diagnosed late 2016.
My last 5 PSA results are:             4.00        5.30        8.50        8.20        8.20
I know it might start rising again in the future, but it’s encouraging to see it hasn’t gone up in the last 6 months.

My December 2018 PSA is lower than it was 2 years ago, and my Oncologist said that my September 2018 Ga68 PSMA PET/CT scan was  better than my first similar scan December 2016. So for now I’m happy to continue taking just the Disproven1, Unproven1 twice a day.

I haven’t had any conventional cancer treatment since March 2017.
So, as at December 2018, that’s 21 months taking nothing but alternatives.
The Disproven1, Unproven1 don’t seem to be having any side effects on me, so I think that’s great.

 

I’m feeling and acting the same as I did 4 years ago which was well before I was diagnosed.
Most mornings I walk up and down 4 flights of 15 stairs and then do 30 push ups.
So my cancer doesn’t seem to be affecting me in any way, apart from the constant worrying about it.
However, if things change in the future I am prepared to reconsider my options.

 

I noticed that my previous entry in this thread didn’t receive any comments.
I hope that I didn’t scare people off, because I would really welcome any comments and/or constructive criticisms from anyone on this forum.
All that I ask is that any criticisms relate to what I am actually taking, because I’d rather this thread didn't turn into a generic "Conventional Medicine versus Alternatives" debate.
(Maybe I should start another thread in The Lounge just for that?)

 

I’ve attached a pdf with a summary of my journey so far.

 

Hope everyone has a great Christmas and New Year.

 

Kind regards

 

Dave.

My Cancer story.pdf

[alanbarlee]

Dave - I reckon that your'e in a very good place - and that there's no need to look the gift horse in the mouth (so to speak!)

It's particularly good that you're committed to maintaining an exercise program - the more the better. It's also good that you're maintaining a regular watching brief on your PSA and scans.  You may have sent your PCa to sleep, but there's no way of predicting when it will wake up again.

 

Meantime, you've got a life to live, in all its wonderful dimensions - so consign your awareness of your PCa to the 3-monthly PSA checks, and forget the rest until you need to revisit your many options down the track.

 

Have a GREAT Christmas!

 

Cheers,

Alan 

 

[DaveK1200]

Hi Alan,

 

Thank you for your kind words and good advice.

 

Best wishes for the future.

 

Cheers,

Dave.

[Patrick Turner]

7 hours ago, DaveK1200 said:

I noticed that my previous entry in this thread didn’t receive any comments.

Hi Dave, maybe some who post here are unable to defend their beliefs on alternative medicines or their perceptions of their Pca status when challenged by anyone. I myself enjoy anyone who pulls apart my pet theories to point out my "alternative facts" to consider. I tried cannabis, apricot kernels but there waa ZERO effect on gradual Psa rise during a long stretch of ADT which I did not cause me any problems I could not handle and I did not mind becoming totally sexually dysfunctional. My Pca has been vastly more aggressive than yours, and methinks yours has been quite tame, a wussy fatal disease, which you may die with, rather than from, its direct action may not be as bad as something else that becomes a future bother that cannot be stopped.

 

I myself have 3 enemies, aging, side effects from treatments which I would have been a fool to not accept, and the cancer symptoms. Although I am riddled with bone mets which are not easy to kill with chemo, I am now able to cycle 96km in a day ( yesterday ) and I did 281km last week, and at speeds I have not seen for some years before a double knee replacement done when Psa was below 1.0, when Cosadex was still working.

But when that failed, Psa immediately whooshed up, then I had Zytiga Psa nadir of only 2.0, then Psa went up, and then bone mets got bigger and more numerous, and this year I had 5 Docetaxel shots over 15 weks and Psa went up, not down, so was deemed a failure, so I had first Lu177 some 6 weeks ago and have my next at Jan 4.

After awhile, ADT or blocker drugs become similar to sweeping Pca under carpet, or kicking Pca can down the road. The Pca remains, and mutates while asleep, and I had to resort to Atomic Warfare in form of Lu177. 

 

Psa before Lu177 was 25, down from 45 at last chemo, and Psa remains at 25, so maybe soft tissue mets are reducing and bone mets are not yet responding much. No doctors have a clue how I might fare in future.

I did have two pauses in ADT in 2012 and 2015 and after my abandoned attempt at RP, and both times Psa went up like rocket, so without ADT I'd be very dead right now.

Anyway, none of your alternatives appeal to me but they are all fairly benign, so to me it matters not if you can argue they are your saviours, because most ppl who refuse mainstream medicine for cancer die early, and none survive to tell us how well alternatives worked, and support that by having full analysis done, something that would be hugely expensive and not able to lead to a conclusion that all ppl should try the alts.

 

I know a man whose luck with Pca has been definitely a short straw, he took 3.5 years to get to same stage as I did at 10 years after diagnosis in 2009, which BTW was about 4 years too late because in 2005, I bet I had a Gleason 4 or 5 when Psa was near 3.0, about 3 times the normal for a man who is never going to have any prostate gland problems.

 

Psa went to 6 at diagnosis with inoperable gleason 9, with 9/9 positive biopsy samples, and cells given aggressive and young man's type. This meant I had a probable huge number of mets at diagnosis and none could be seen until mid 2016 when they slowly but surely got big enough to appear in PsMa Ga68 PET scans which came along only months before mid 2016. So the mets were all suppressed by ADT like the primary PG site where I had 70Gy standard 4-beam EBRT, and another 31Gy "salvation" IMRT at Epworth in 2016. Doc at Epworth said he would kill all Pca in PG with 31Gy but following PsMa scans show that this was not true, and there was plenty of work needed to be done by chemo and Lu177. 

I have next Psma scan in Feb 2019, maybe, and I'll see more what my Pca status is. Psa becomes a less reliable measure of Pca status as the mets grow. Nobody knows what mutations exist which have become immune to anything any doctor cooks up for me, but this is one reason cancer treatment eventually becomes useless. 

Apart from sexual extermination by medicos, I am still fully continent and don't need a nappy. What a luxury!

 

I do hope your good luck continues. 

 

If your luck, worsens, you may live on for immune therapy to have matured so it gives much better efficacy than it now has reached during the present research being done around the world. Provenge was said to be a marvel, giving men a year, FDA approved it, and many blokes shelled out $100,000, but the mean life extension had to be revised down to 4 months, and who thinks $100,000 is too much to pay to dodge a coffin for 4 months? Well not many, and I've lost track what new owners have devised, BUT, one guy emailed me to say some blokes got 9 years with very low Psa so they must have been the few who responded when Provenge therapy began, and their altered white cells continue to recognise Pca as the enemy and each new generation of white cells has kept Pca down.

 

Marsden Hospital in UK has not yet perfected IT much yet. I don't know the latest, but about last year only 15% got  good response with a few who have close to remission, were so bad before with 3 months to live. 

15% rate of getting more than 50% Psa reduction may not be justification for approval by UK NHS regulators, and really, IT research is like opening up Russian doll, and researches keep finding thousands of dolls and that many obstacles in their way. So far, some side effects of IT can be horrendous because altered white cells attack some healthy cells you depend on for QOL, or to stay alive. 

I've had 3 score years and ten, and 11 years more than my father who secumbed to melanoma, and a sister of Oa, and my other sister narrowly avoided Bca with a double mastectomy early enough. My father's mother died of Oa before 60. But one grandfather died of old age at 92 like mum at 98, and other grandfather before 55 because of booze. None of us leave Earth alive, so count you blessings, and don't worry too much about tomorrow.

 

I rode a BMW R75/5 for 9 years after 1972, and never had a bone breaking crash in well over 100,000km.

But if I rode now and crashed, there'd be a bag of broken bones to pick up.

A bicycle at 60kph down hill is quite a thrill. Better than sex, a most overated activity.

I still don't mind a good hard 4 hour grind in a ride, and is somewhat very many times what you consider  an goodly amount of exercise. Cycling up hills is like walking up stairs. Some hills of 10% slow me to 9kph, and puts my old heart at its max of about 130bpm and a 2.5km long hill is a climb of 250M or about 1,500 steps at 170mm each. There may be double or triple that much upward elevation spread over a 80km ride. My amount of exercize is what my body demands I do to keep BMI 24, waist 95cm, and resting HR at 46, while eating less than half what others eat. And when a young man with a smug look on face overtakes me, I ask, "what took you so long?" and maybe he replies, or just ignores me. The irony is he don't know I am an Old Bar Stud, chemically castrated, and downgraded by RT, and chemo. He should be much faster.

But the real quick are those under 35 in the cycling club, they have me wishing to be 30 again.

One or two shielas overtake in each year. They have more testosterone than I do, but most have sugar tummies and bums, and just can't keep up. 

Stay well Dave,

Patrick Turner.

[DaveK1200]

Hi everyone,

 

Thank you for your comments and good wishes.

 

I was especially interested to read Patrick’s comparison of my Pca to his own Pca.
Patrick wrote...

"My Pca has been vastly more aggressive than yours, and methinks yours has been quite tame, a wussy fatal disease, which you may die with, rather than from, its direct action may not be as bad as something else that becomes a future bother that cannot be stopped."

 

Patrick is undoubtedly correct in saying my Pca is currently less aggressive than his,   but why?

My oncologist can’t really explain it, except to say  “Sometimes these things just happen”.
That response prompted me to start a thread sometime ago in The Lounge section of these forums.
It was titled “Is this type of research being done?”  and was eventually locked, but I think it can still be read if anyone is interested.

 

My diagnosis of advanced metastatic prostate cancer was based upon digital examination, multiple scans and biopsies (Gleeson 8).

My oncologist expected my PSA to continue rising steadily once I stopped ADT.

 

Luckily it now appears to have levelled out lower than it was when I was first diagnosed, and my latest PSMA/PET scan looks better than the same type of scan taken late 2016. 

Of course that situation might change at any time.

 

My oncologist will probably never concede that Essiac tincture and CBD oil might be helping me, and I wouldn’t expect him to.

At this stage he just wants me to “keep doing whatever you’re doing”,  get 3 monthly PSA checks and see him every three months.

 

A Very Merry Christmas to everyone.

 

Kind regards

 

Dave

[Patrick Turner]

1 hour ago, DaveK1200 said:

My oncologist can’t really explain it, except to say  “Sometimes these things just happen”.

Nobody can explain the differences in Pca between one man and the next, but then we have to realise we are not clones, and everyone has very different DNA, and thus so does the cancer with the result that what works for one man to reduce Psa and Pca tumours may have the opposite effect in another man; I have seen examples of that happening. 

One should remember the cowpat formula which always applies itself to make truth extremely elusive.

COWPAT = 1 / N squared, ie,

Chance Of Working Perfectly Any Time = 1 / Number of variable factor squared.

So for anyone's cancer treatment, 

Cowpat = 1 / ( maybe 5 variables we might identifiy if there were funds and manpower available ) squared

= 1/ ( 5 x 5 ) = 1/ 25 = 0.04 = 4% chance of working.

But something "working" needs definition, maybe we could say "possible remission" instead of cowpat and so we might end up with probability of remission = 4%.

Its much more realistic for me to say my possibility of remission = 0.0000000000001%, N cannot be quantified fully, so it is a high number, and therefore all I can do is chase up whatever can delay things getting worse to ruin my QOL. The only certainty is that uncertainty prevails to dominate our existence, and especially so during our senior years when many parts of ourselves have become less resiliant to stress, and more likely to malfunction just like parts in an old car, or anything else that just wears out, and we are very complex structures and it takes only small part to fail and the whole structure fails. 

But remarkably, what doctors have learnt has so far kept me alive for many years more than if I had been born 300 years ago, a time when doctors in western societies were little better than witch doctors, and he could hasten you to your grave if you bought his services. 

In 100 year's time, cancer may be banished, at least for the rich, but then we might be cyborgs with unimaginable composition and having to deal with very hot weather and a vast array of problems that would worry these beings just as much or more than what worries us now, our looming end. 

To ease the problem of an end, countless evolving societies have invented beliefs in an after life, and rivers of blood have flowed over which belief is correct or not. Ah, the tragedy of humanness is in view here. 

I've tried to de-clutter my brain of things to believe in for which there is no suporting evidence. I have accepted that the possibility of an afterlife = 0.0000000000001% and just why should I or anyone else exist after they die? 

Stars form but don't last forever, and so do all the planets and other civilizations that are very likely to exist, to have existed in the past, or will exist. There is so much Miss Terrey, we just cannot understand her. 

Why is life likely elsewhere? its because for a small area of Space, cowpat = small number, but for an infinite number of small areas cowpat = Infinity x 1 / N squared. 

I have only a little finite brain, so I can't be expected to know much that involves infinity or eternity and so I don't mind not knowing all things. Einstein didn't, nor did Hawking, but it has been fun to consider the things I did learn about, and consider what you learnt about.

It is a warm 32C day here. I had a blood test this am, then cycled 87km with a lunch stop at an Italian restaurant where the food was excellent, so what more could I have wanted?

Patrick Turner. 

[timbaker]

Hi Dave,

That's great news mate, well done. I admire your courage in backing yourself and forgoing the conventional treatments. Believe me, any day off hormone therapy is a good day. If I had my time over again I might well try your approach as hormone therapy has been devastating for me, at the relatively young age of 50 at diagnosis, in JUly 2015. It has very nearly cost me my marriage, my career, my mental health and I often question if cancer could be any worse. I have had a couple of breaks from it which has been amazing but PSA keeps rising and my dedicated lifestyle regime - plant based diet, meditation, exercise, various herbs and supplements -don't appear to do much to halt it. Having said that my scans have been great, a lesion in my right femur gone, one small met on a rib bone which I have had targeted radiation for  and no other signs, even on a PSMA PET scan, Awaiting scans next month to see how the rib is looking and if we get a drop in PSA and anther holiday from hormone therapy. I think one day we will look back and regard this form of treatment as brutal and inhuman. All the best and hope things continue to go so well for you. Are you still taking the Unproven1 Disproven1, other now? Thanks, 

Tim

[Patrick Turner]

Hi Tim,

I have met one man in the chemo ward who said his wife fled soon after his diagnosis of Pca.

But hey, from a long time ago I realized its a miracle that any marriage survives the "in sickness and in health" clause which I once agreed to at an alter. I had a wife reverse out of marriage, and I just closed the door quietly and carried on with my life alone, "for better of for worse" and at the time it felt like she'd died, but I recovered.

I found many women liked / adored sex, but did not value the man attached to Rodger, and they'd leave a man even he was a perfect lover who remained faithful and smiling while paying all the bills. I saw what went on around me.........   love, like many things, had to be proven to be true.

I learnt I could never depend on anyone 100%. I had to cope alone. I didn't go insane.

So when Pca came along, inoperable, Gleason 9, and at 62, I was forced onto ADT and I handled it with hardly a tear. Suck it up Bro a voice said in my head. Sex is over. Better to be alive than dead, and Psa rise from diagnosis to attempted but abandoned RP showed my Pca to be what doctors said it was - aggressive But plain ADT injects kept Psa below 5 from mid 2010 to mid 2016, and that's when the battle began to heat up because mets began to show in the then new fangled PsMa Ga68 PET / CT scans. I assumed ( wrongly ) that I only had 2 mets in lymph nodes. I had salvation IMRT at Epworth for the mets and PG. I began Cosadex, which lasted 6mths and Psa went from 5.6 to nadir of 0.4, then up again. The next PsMa scans showed a pile of mets in bones and elsewhere. They may have all been there since before diagnosis in 2009, too small to show in scans. I was diagnosed TOO LATE, because Psa was quite low for a large amount of tumour.

So ADT supressed the growth of mets for quite some time. So no man can assume anything about his Pca. 

Zytiga worked for 8 months, Docetaxel did not seem to work, Psa went from 12 to 45, so now I am on Lu177, but before No 1 shot, Psa was 25, and 5 weeks later its 25, so it may have gone below 25, and is now rising while on Lu177, but I have another No 2 shot on 4 Jan 2019, and I have ZERO idea whether anything is going to work or not work.

But if I die, well, I die, other ppl have, and so what? I am not indispensible or precious to anyone else, but I do like living right now, and this last week I cycled 364km and feel very healthy. I remain on ADT injects, but my adrenal gland is working again after quitting Zytiga so I would have low levels of testosterone which may be fueling Pca progress, but nobody can stop this, and Pca progress may be enabled by the Pca being able to generate its own supply of testosterone - researchers say the ordinary ADT and consequent Cosadex, abiraterone, enzalutamide create conditions to spur the cancer to make its own supply of wanted chemicals. The Pca mutates as time goes by and a proportion of it survives whatever is thrown at it, and so each treatment merely gives more time with good QOL. And the QOL was very possible despite having had all physical aspects of my sexuality entirely exterminated by ADT.

The fact has been that since 64, when all things stopped, who on earth was around who could have been a partner? I've been single since 1978, after a young wife left, and ladies I found were allergic to commitment, or crazy, or whatever, and none of them wanted the "until death do us part bit", and I found most dear ladies became completely anti sexual by 50, but it happened in many women before 50 and with my ex wife at 22 for reasons far too difficult for me to explain. So any man who still has vibrant intimacy with a partner at over 50 might count his blessings, and I might be sad, but I saw so many ppl were wrecked by personal involvement outcomes, so I now don't feel bad without a partner. I'd love a partner to bits but I never meet any ladies, have no female friends, they are never to be seen in any cafe alone, and many are fully occupied by their kids and grandkids, which is noble indeed, but something I just cannot share.

We have all heard of LGBQT ppl, and I don't fit into that grouping because I remaim 125% hetero, but they ought to add a "D" to the list for those who have been DESEXED due to choice ( hardly any ) or medicals, ( a lot) or from tragic accidents at work, in  car, or in war from an IED, ( dunno how many ).

Many millions of other ppl have far worse lives than mine with longer lasting chronic diseases. So what right have I got to complain? Anyway, one day, maybe someone will work out a better way to make a man last longer below the waist. But I'd rather be valued for what is above my waist, and because I never managed to get around to having my own kids I did not get valued, but then there's never the constant requests for money or duties to relatives so all in all I have no reasons to be depressed. 

I will have a nice quiet day of rest tomorrow, and fill my ears with offerings from ABC Classic FM because they choose far better music than I ever could, and at my stage of life, I find Mick Jagger very boring, and ever since I first heard him screaming he could not get any satisfaction, I wondered what was wrong with him.

 

One friend left a bottle of champagne, and I must drink it veeerryyy slowly, being a tee totaller since 2014, apart from one memorable party a bloke had for turning 50, when I downed half a bottle of shiraz.

I like cheering up doctors when I talk to them; some are uber gloomy, but then I like the ppl who work in cafe's to feed me, and the waitresses laugh and make me want to be 23 again.

 

I wish everyone a very happy-happy day for tomorrow, try to look on the bright side.

 

Patrick Turner. 

[DaveK1200]

Hi Tim 

 

Thanks for your best wishes.

 

I wasn't really forgoing conventional treatment as I had 2 months of zoladex adt alongside of my complementary therapies.

 

I thought if ADT was the best they had to offer and it was only delaying the inevitable with no chance of a cure, then I'd pause it for a while and try to get back my quality of life as the side effects were awful. That seems to be working for me so far. Fingers crossed. 

 

I dropped  the  bicarb some time ago because  it made me feel a bit off after a few days. So it's just the Disproven1, Unproven1 for now and of course 3 monthly psa tests

 

Cheers

 

Dave.

 

[DaveK1200]

Hi everyone.

It's been 6 months since my last update.

My December 2018 PSA was around 8 and had been roughly the same since June 2018.

However my March 2019 PSA jumped to 14 which was a 75% jump in 3 months which concerned me quite a bit.

I saw my oncologist in March 2019 and was expecting him to suggest going back on ADT, but he told me that the psa was only one part of the overall picture. He said he'd rather see a patient with a psa like mine who wasn't losing weight, had no pain and able to live a normal life than someone with a low psa who was in discomfort and obviously unwell.

So we decided to just keep going with the Disproven1, Unproven1 oil the same as I have for over 2 years.

In June 2019 I had another psa test and I was worried that it might have jumped again, possibly into the 20s or 30s.
However much to my relief it went down from 14 to 13.

My June 2019 oncologist appointment went well. He was very pleased with the psa result and with my appearance and lack of pain or other symptoms.

He pointed out that my latest psa of 13 was almost the same as my psa of 12 when I was first diagnosed December 2016, even though I'd only had 2 months of ADT in that whole time.

So because of my overall appearance he was happy for me to keep doing what I've been doing and see him again in 3 months.

Best wishes to all.

Dave.