My Cancer Journey So Far

[alanbarlee]

G'day again Dave,

 

Your PSA history is unusual, to say the least!

 

Do you have Gleason Grade info from an early biopsy? That can be helpful data in prognosis and treatment planning. 

 

My only suggestion, given the last PSA and imaging results, is to not let the PCa develop and mutate for too long. Some mutated phenotypes can be hard to treat - although there is promising progress with some of those that can be characterised by gene analysis. Time is on your side.

 

In the meantime, ADT and a growing list of second-generation options are good to keep in your sights. (Recent trials show that these drugs are a good deal more effective than Cosudex / bicalutamide by itself - but your medonc will be across that).

 

Keep up your daily exercise - it's one of the best medicines for PCa.

 

Alan

 

    

[Patrick Turner]

7 hours ago, DaveK1200 said:

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

Hi Dave, good luck with your treatments.

I needed ADT, and EBRT, and to not use ADT meant Pca would have killed me years ago. The added salvation IMRT + Cosadex gave 6 months suppression, Zytiga gave 8 months, then chemo failed after 4 infusions, and I needed to go to 4 x Lu177 + enzalutamide to get Psa from 26 to 1.6 now and trending down, so not its the same as Psa at June 2017. Meanwhile my right hip has gone phut, so no more vigorous cycling.

I think all of us who post here are anxious about outcomes and our mortality, and time to our expiry date.

I was told I had aggressive Pca, and the doc wasn't wrong. I've had about 6 x PsMa Ga68 scans so that's $4,200, and Lu177 from Theranostics Australia cost $38,400. No Medicare refunds. 

I will need maybe the same amount of expense again, maybe AC225 if Psa rises and there is enough PsMa avidity,

then maybe DNA tests for Bca2 gene, very probably positive because both my sisters got either Oa or Bca, one died fast, the other narrowly escaped, dad's mother had one or other so its in my genes, but there is no full expectation that any PARP drug etc might work.

I might haul out my small amount of sativa oil a close friend grew for me in 2015 when pain increases or I've been told "there's nothing more we can do" and Psa runs away fast into the hundreds.

Good luck,

Patrick Turner. 

[DaveK1200]

Hi everyone,

 

Guess it’s time for another update.

Alan asked about my pathology results when I was first diagnosed.
So here’s a quick recap...

In late 2016 my PSA was 12.
Biopsies gave a Gleason score of 8.  (4+4)
A PSMA PET Scan showed cancer in prostate, lymph nodes and metastases near aorta, oesophagus and in groin. 

That scan was enough to convince one of Brisbane’s top prostate robotic surgeons that I wasn’t a candidate for surgery, so I was put onto ADT.

 

I started ADT and some complementary therapies about the same time.
After only 2 months I found the side effects of the ADT so bad that I stopped it.

 

Since April 2017 I have had no treatment except for my complementaries, blood tests and scans.
The only things I have taken every single day from April 2017 are Disproven1, Unproven1.
I've had no side effects from either of them.

 

I would never suggest that anyone else should go against their Doctor’s wishes.
However when it’s my body, it’s my choice.
Even my own Oncologist respected my right to stop ADT.

Anyway... my September 2019 PSA has dropped slightly to 10.
That’s down from the 13 that I had June 2019, and the 14 that I had March 2019.
It’s also a bit lower than the 12 when I was first diagnosed late 2016.

I still feel great and my Oncologist is very pleased with how I’m going.
He knows I am taking Disproven1, Unproven1 everyday, and he respects my choice to take them.
He can’t really explain why I’m doing so well considering my diagnosis in late 2016.

Today’s appointment finished with us all singing together “Just keep doing what you’re doing, and see you in 3 months.”

 

Everyone is different and what works for one person might not work for another.
 

I wish everyone good luck.

 

Kind regards

 

Dave

 

P.S.   My old Kawasaki ZZR 1200 now has a stable-mate.
In April I took delivery of a new Royal Enfield Continental GT 650 in chrome finish.

I rode it to Redcliffe so I could march in the ANZAC day parade.
I was told it was the first of that model with the chrome tank in Australia, and I absolutely love it.

[timbaker]

That's fantastic Dave, if I had my time over I may well have tried a similar path, but with two kids I wasn't prepared to take the risk. Four years on hormone therapy has worn me down to the point where I am ready to try some alternatives as the compromise in quality of life feels too severe. I'm seeing an integrative doctor who has ordered a suite of blood tests and I've a couple of other doctor friends with holistic philsophies who have recommended a variety of approaches but it's hard to know who to put my faith in. Ketogenic diet with hyperbaric oxygen. Enzyme therapy. Aggressive treatment with concurrent targeted and systemic treatments to try and push me in to remission. I've even read a  study that suggested high doses of testosterone have put some men  into remission, supposedly "shocking" the cancer into retreat. It all feels like a bit of a crap shoot and I understand others sticking to the prescribed protocol to the letter. But I also respect your decision to trust your instincts. Well played sir and good luck. You're already winning with three years free of ADT. Maybe I'll try your approach. 

[Patrick Turner]

I think Dave has just been very lucky, because I found that I would have died maybe 6 years ago if I hadn't stayed on ADT and say farewell to any possible future sex life. Then I found I needed extra IMRT to PG and combined with Cosadex, and that all failed in 6 months, then Zytiga + continued ADT failed in 8 months, then chemo failed.

I would argue that if any man does not like ADT, then just wait until he has to try chemo. Its vastly more debilitating than any other treatment I have had, and makes ADT look very easy to cope with.

Anyway, before chemo, Psa was 12, then 50 after 5 shots, docs declared it had failed, so a month after quitting chemo I got 4 shots of Lu177 costing $40,000+ including more PsMa scans, without a cent from  Medicare.

In the pause after chemo before Lu177, Psa fell from 46 to 25, but bone mets had increased, more new mets were found, so Psa does not tell the whole story. There was little change to Psa after 2 x Lu177 shots, but then Psa dropped more after 3 shots. Doc supervising my No3 shot was Professor Louise Emmett, and she advised me to begin taking enzalutamide because it helps action of Lu177. Then after No 4 shot Lu177. Psa was about 1.4 in May, and its continued to fall to 0.57 about 3 weeks ago, but I would not be at all surprised if yesterday's Psa test shows a rise. But last PsMa scan about 6 weeks back showed no new mets, bone mets were all healing up, no mets in organs or lymph nodes. The PsMa Ga68 scan has PET part and CT part, and CT did not shown any mets that did also show up in PET part of scan which means its probable I have not got mutated mets that do not make PsMa avidity. Such wayward mets are the killers, because basically nothing known can reliably kill them, and I saw a friend die with just such a problem; mutant Pca rapidly grey in his liver, and docs just did not have time to experiment with a few things, watch results, try something else involving DNA analysis and PARP inhibitors that all seem very experimental treatment with low probability anything would work.

Paul Yates used to post here, but he lasted only 3 years after diagnosis with rapidly failing RP, ADT, more IMRT, chemo, after 10 shots, and PARP. He was under 60, had a beautiful wife of 50, two lovely kids, so that family would be in Deep Tragedy mode because Paul paid the bills. 

I see my onco next Thursday, and if Psa is already rising again then I have to seek the expensive advice and treatment that is just not to be found in Public Hospital system.

Meanwhile I feel better now. After 4 x Lu177, there have been very few side effects. But I did get some additional EBRT for a sore hip from my dear doctors at Canberra Hospital to give two nearby bone mets some hurry-up to die. MRI and Xray of R hip showed 30% more cartilage wear than L and I quit the bike over winter for 4 months to let things heal if they could, because there was some small fuzzy part on scans on one side of R hip, maybe arthritis. So doing SFA all winter while staying on more drastic vego diet stopped weight gain.

3 weeks ago I felt quite better, and got back on bike and began to build up distance and speed and can now do 40km eazy-peazy.  

The most damaging to my cycling ability has been the chemo I had last year. It reduced my walking to an old man's shuffle, but over last 3 weeks there's been a good improvement.

It seems our brains make CBD compounds so there is no need to take any derived from Cannabis unless there is some mental problem such as epilepsy which does respond to CBD. Cannabis with high THC is poisonous, and I have 2 nephews who began smoking lots of pot before age 12 and both are incurable schizophrenics in their 30s with one weighing 140Kg. In 2014-2015 I grew my own wild Sativa cannabis with high CBD and low THC and  low yield, and Psa graph showed not the slightest reduction due to the cannabis oil I extracted. Plenty ppl online have made all sorts of claims about cures, even for stage 4 Pca, but not one has supplied any real evidence.

I tried eating 30 apricot kernels a day, thus giving myself 30mg of amygdalin that ppl online said would cure cancer. Nothing happened after many months.

So I wish everyone the best if they try alternative medicines, or rely on ketonic diet + hypobaric chamber or any number of things that most doctors know had no effect on any patients they have treated.

5 weeks ago, I met a young woman of 40 in my local café on her own and who I spoke to for about 2 hours, and this experience was most extremely unlikely to occur because most ppl at my lunch time café are old like me, or young parents, and no single ppl ever show up because to them its a most uncool place to suffer being there with most ppl. The lady was visiting from Canada, staying with a sister in the same suburb. And this lovely young lady said she felt the presence of God to be so strong it was impossible for her to ignore it, let alone deny that God existed. So after 2 hours, I'd mentioned I had a bad hip, and she performed a faith healing ceremony right there in the cafe. Put one hand on my chest, other on my hip, and prayed to God aloud to alleviate my suffering.

I saw all this as a magnificent display and practice of goodwill, and received her prayer with reverence.

Well, it wasn't long before I felt good enough to ride a bike again and so I might ask "Well did God give me a benefit?" I'd like to think he may have, but I remain quite unable to define just who God is, although I do think maybe some ppl have power to channel psychic or religious power to sort of give a miracle. I am not going to spend up to get fresh bunch of X-rays and MRI for check up on what God may or may not have achieved.

I have come to realise ideas about God to be rather toxic during history of mankind where numerous wars and pogroms have been conducted against anyone who dared to disagree with anything in Bible or New Testament. 

If we are to believe Jesus was the only person to rise from the dead, then how come he ascended upwards into the sky - without any space suit? So all miracles in Christian writing are merely fake stories to make Christianity more appealing. The fake stories after Jesus died are like the fake news we see on Internet now. But I always loved Jesus, a real good bloke, and I became a carpenter just like him. And if he returns to us, I'll let him stay at my house, not charge any rent, and get him busy doing jobs around the house. I'll warn him to be careful what he says lest he find himself declared a damn nuisance, and locked up by Peter Dutton, who will demand where Jesus 2 had come from, and say he could never ever settle in Australia. And what, if instead of Jesus, we had Jesine, a 30yo shiela lead the way to better life conduct as Jesus preached?

All I can say is that this young lady I met was not yet another mad person on the loose, more like a self started devout nun, who has largely rejected the material world. But her website offers prophesies and healings. There are no mention of any hourly rate. One wonders how Jesus and his pals the disciples funded their lives while talking to the masses. 

I prefer to not worry about life existing after death, I doubt it does, and the only propelling idea for a tolerable life as an old man with little use if any to anyone else is I enjoy daily wonderment of being alive.

I have a few friends and no enemies, never went to jail, made many ppl happy with my work, didn't have any real bad habits, and insisted all women I met practised their idea of liberation. I didn't have kids, and don't mind that at all when I think how the world might be in 50 years. 

And I hope Dave has continued luck with his Pca . 

Patrick Turner. 

 

[DaveK1200]

Hello again,

 

Just a couple of things to add.

 

I didn’t stop the ADT because of sex,  I’m not that foolish or shallow.
It was because of constant tiredness, pain, hot flushes and the inability to concentrate.
At a wedding reception someone asked me where I lived and I couldn’t remember my own suburb.
The final straw was when I thought I might not be able to ride my motorcycle anymore.

 

Maybe Patrick is right about CBD oil not really doing anything?
In early 2016 my next door neighbour was diagnosed with Thymoma cancer and was told he only had about 12 months to live.
When I started taking Disproven1, Unproven1 I mentioned it to him and he started taking them alongside his chemo.
Initially he was on a lot of chemo and lost all his hair but for the last few years they’ve had him on a much lower dose every 3 weeks or so and his hair has all grown back.
About a year ago he stopped taking the CBD oil because it was too expensive at about $150 per month, but he kept taking the Unproven1 which is only about $20 per month.
His scans for the last 2 years have been stable showing “no significant growth”.
His doctors can’t work out why he’s still around.
He seems to be doing ok without the CBD oil, just the lighter dose of  chemo and the Disproven1, Unproven1.
So the only thing we are both taking is Disproven1, Unproven1, it’s our “common denominator”.
I’ll keep taking Disproven1, Unproven1 as I don't want to change anything while I seem to be doing well.
Maybe it’s helping, or maybe both my neighbour and I have just been very lucky.
Who knows for sure?

 

Kind regards

 

Dave
 

[Patrick Turner]

On 9/4/2019 at 3:09 PM, DaveK1200 said:

I didn’t stop the ADT because of sex

I was never sure why you stopped ADT, but after reading so may other men's stories about ADT, sex what important for some, and not others, and I could not have cared less about having a functioning Rodger because if I had not had ADT I would not be here now. And I've been single for countless years. I can fully sympathise with giving up ADT if its causes loss of mental abilities, but in my case I did not much like the hot flushes but I was an extremely fit cyclist in 2010 when I began ADT, and soon the flushes lessened, and I was able to continue working at a job where careful craftwork every day involved much decision making and dealing with a public who bought electronic products or had me repair / modify / re-engineer their old gear, and survive with an net income about the same as the dole. I think I was and remain a very odd type of person in this regard.

I had not the slightest trouble continuing to cycle an average of 220km a week for many years after my Pca diagnosis. I've often had an urge to acquire a nice tight roady 350cc single for round town use, but really, the bicycle is safer, with a better health benefit, and far less damage if I have a crash. I did once have a BMW R75/5 for about 8 years from 1972 onwards, and went to many places..... I had others, but BM was by far the best motorcycle to have, so reliable, good brakes, enough go, good handling, and good on the dirt, and I had ladies willing to jump on the back for what was one form of very vibrant intimacy indeed.

 

CBD oil may indeed cause some reduction of Pca for other men. There was /is one Dennis Hill, who claimed he was a biologist, and from Texas, and he said CBD oil cured his stage 4 Pca, so I just followed what he said ought to work and got ZERO result. Was Dennis an A grade BS artist? could be. There was a Rick Simpson also saying CBD fixed Pca, but he grew the stuff, and that's was many sellers say to get sales. All lies, IMHO. 

Keep going with the Disproven1 if you believe it works. Some pray to Jesus, some believe in diet, goodness knows how many things ppl do which they believe will give them a fix. 

As years have rolled by I have had guys trying to sell me all sorts of stuff in some fancy bottle and I tell them I'd love to buy some if only they can be honest about testimonials which I tell them have been written by "professional" testimonial writers where of course the person speaking does not exist, and everything mentioned is 100% complete BS. And I ask the seller of the stuff ( aka snake oil salesman ) could he please explain what exactly is in the bottle, and there's never any answer except more sales talk. I ask for a free sample, but none is given.

Pardon my natural skepticism, but it led to my good survival so far.

Who knows for sure about anything?

At my age, the only certainty is daily uncertainty. But I could have said that at any age, so much stuff could have happened but didn't, and some stuff did happen which I thought wouldn't, and we all just got to cope, and I think I've got through life without getting PTSD from it.

I spend time at HealthUnlocked group and there are a pile of very unlucky blokes there with advanced Pca, and I can resonate well because I have had a succession of failed treatments. If Lu177 had not worked as it seems to have these last months, I'd be up the creek in barbwire canoe without broken paddle. Instead, I'm back on bike again after a kerfuffle with chemo and having a bad hip etc...…

Those that are lucky to have a successful RP after Dx will not want to post anything to Pca groups because their worry and pain is over, and these are real lucky blokes. We dunno how much luck we might get or how long it will last.

Keep well man. Enjoy the Royal Enfield.

Patrick Turner.   

[DaveK1200]

Hello Patrick and everyone else,

 

Thank you all for your kind wishes.

 

I had a BMW too at one time, an old R60/6 which I kept for a few years when I got back into riding after a break of about 7 years.

 

I just got back from a 3000klm 6 day ride on my old Kawasaki ZZR1200.
We zig zagged through some of the best bike roads in NSW including the New England Hwy, Oxley Hwy, Thunderbolts Way and Bucketts Way.  I have the greatest admiration for the firefighters after seeing the charred landscape around Stanthorpe and Tenterfield.

I love my new Royal Enfield for shorter day rides.
 

Patrick, I will definitely keep going with the Disproven1 as you suggest because I believe it is helping me.

At my last meeting with my Oncologist he said that he hadn’t really been given me any sort of treatment since early 2017 and that the two small injections of ADT I had back then were like “spitting at the cancer a couple of times”.  He added that if he had actually been treating me instead of just observing me, then he would have been delighted with my condition.

 

Patrick you wrote in your last response that “I ask for a free sample, but none is given”.
In October 2017 I sent you a message via this website, but perhaps you may not have read it.
Here is a copy of what I sent you...

Hello Patrick,
I understand how sceptical you are.

I'm fortunate that I'm a Vietnam Vet and the DVA covers the costs of my conventional treatment.

Disproven1

I have a few spare sitting in a wardrobe that aren't doing anything at the moment, and you are very welcome to have one.

 

I'm not an agent, and I don't sell them.

In fact I have no business interests in anything other than my own computer software company.

I just want to help if I can.

 

If you somehow make a "miraculous recovery", then you can pay me the $52 that the bottle cost.

If you don't, then it's on me.

 

Have a good weekend and enjoy riding your bike.

If it's not pouring down tomorrow I'll be riding up Mount Mee for a coffee.

 

Kind regards

 

Dave.

 

 

Patrick, that offer still stands if you’re interested.

Disproven1
 

I’ll try to add a still shot from my helmet camera video taken on the Oxley Highway and a photo of me with my new Royal Enfield.

 

 

Best wishes to everyone.

 

Dave.
 

[Patrick Turner]

Hi Dave, you are bringing back memories of the motorcycling I did, and of the risks I took with speed. I found my BM could nearly fly, and how I survived without smashing myself to bits is a Miss Terry. 

Glad to average 20kph on a bicycle now after so much Pca treatment at 72. 

The RE looks nice. I met ppl with Norton twins that handled like a dream. Some put Trumpy donks into Norton featherbed frame, and then there were the Norvins, 1 litre Vinny donks in featherbed. Some put Harley sportsters also into Norton frames.  

Bathurst in 1960s was such a rich experience.....

I did once get a long ride on a Norton Dominator, and it felt like it was on rails, and of course you could get over-confident. But for touring, BM was The Best, it was comfortable, quiet, and there was so little vibration, and parts didn't just fall off, and hardly anything went wrong in the 8years I had one, and ladies quite liked being carted around as pillions.  

I'll digest the video on [substance shown not to work] when I get time, I have to spend 3 days away in Sydney, as a nephew is getting married on Friday. 

I have some hip trouble still, but can still cycle, maybe its radiation fibrosis because strength in muscle has weakened a bit, its tender to touch, could be permanent, so OK, I pedal harder with other better leg. 

I am in splendid health if you saw my blood tests. But chemo has left the worse lingering side effects, and I only had 5 shots. I've hardly any dry mouth from Lu177, Psa now 0.4, wait and see now, but l'm also eating extra Vitamic C, but have zero idea if it does anything. Looking now for a good massage lady, maybe that works with hip, worth a try.

Stay well pal,

Patrick Turner.  

[DaveK1200]

Hello Patrick and everyone else too,

 

Patrick, it was great to hear of your memories of Nortons and your beloved BMW.

 

With your love of bikes I thought you might be interested to hear that I tagged along with the Historic Motorcycle Club's recent ride.

 

The new Royal Enfield seemed to fit right in alongside the classic old Ariel, Triumph and AJS bikes.
(Apart from the disc brakes of course.)

I'll try to attach a photo.

 

I sincerely apologise if I've broken the forum's rules, my heart was in the right place as I just wanted to help.

 

Anyway, I promise that I will never name any unproven alternative/complementary therapies publicly on this forum again.

 

With regards to PSA results, I noticed in another thread that you mentioned "lowered Psa test results over a long period of time" as being important.

 

My long term PSA result summary is as follows....

 

November 2016 at time of diagnosis of metastatic prostate cancer: PSA 12

Jumping forward to 2019....

March 2019:  PSA 14

June 2019:  PSA 13

September 2019: PSA 10

 

I'm quite happy with that long term trend and so is my Oncologist.

 

Best wishes to everyone.

 

 

 

Kind regards

 

Dave

 

 

[Patrick Turner]

Hi Dave, 

Well, if you are happy and your oncologist is happy with Psa results over last 3 years, then there is not much I have to say about that. But not all of us are so lucky and my Pca generated a small amount of Psa from the beginning, and at Psa of 12 before chemo the PsMa scan showed I was riddled with countless mets and a huge threat, and if nothing was done I'd be in palliative care. Chemo didn't work, but is seems Lu177 has, and with added Xtandi, but for how long I have no idea. There's nothing to be done now except wait and see, with Psa at 0.4. 

 

I don't think you should be so hard on yourself about mentioning alternative therapies here. Many ppl believe that what they eat, or don't eat, matters, and that exercise matters, and that adding a number of alternatives that are un-proven do matter, all making Pca growth slower, or retreat. But nothing is proven, and associating lower Psa to a herbal remedy, CBD, apricot kernels, ground up cane toads, vitamin C, doses of roundup, baking soda, may not prove anything, mainly because any similar result in anyone else hardly ever occurs more than random chance.

 

But where men have high PsMa avidity, Lu177 seems to give a good benefit to many, and seems like I have got that, but then the other info posted here about results of research by Professor Hoffman at Peter Mac show that Lu177 can only kill Pca that has high PsMa avidity, but where there is variegated forms of Pca with no Psa or no PsMa expressions, then a man gets limited benefit from the new Lu177 therapy so research has a long way to go.

 

Nobody has told me I have any mets appearing in CT part of PsMa scan that do not also appear in PET part of scan so it looks like I only have one type of slow growing Pca. How good is that, as Scomo might say 🙂

I have no objection to ppl mentioning alternatives that they feel work for them, and I didn't know there was such a vast number that Big Medicine say do not work. Anyway, use of unproven remedies is usually a benign thing ppl do because some like the feeling of empowerment of doing all they can themselves.

 

I am thankful Big Medicine has developed what it has because without it I'd be extremely dead by now. I happened to be lucky enough to not need to take part in trials to get access to Lu177, and to be able to buy it.

Now I read yesterday that the ground up turmeric ppl say cures Pca has been found to have lead oxide added to increase the colour and hence lead ppl to judge it to be best quality. The turmeric comes from asia or somewhere where those growing it and marketing it are equipped with high levels of ignorance on chemistry and poisons, and the only ethic they have is "get more dough" I'll not use turmeric, just in case the paper report was true. But if what paper did say was true, then I'd be a gibbering idiot by now, badly damaged by lead poisoning.

But last time I looked, seems like that ain't true, but then while in Melbourne in 2016 where ppl have The Finest selections of food to choose from, I was able to buy turmeric fresh and its a dull brown when cut up for cooking or for salads. Its superstitious to say that bright coloured foods are best for you; it just ain't necessarily so. But who am I to prevent expressions of superstitions?

 

About 6 weeks ago I met a lady of 40, visiting from Canada who said she feels the power of God so acutely that she had the power of healing. It seems she's a kind of self appointed nun, shunning men and money, and after speaking to her for over an hour, she gave me a healing prayer for my sore hip that was preventing any cycling, and onco and radiation docs said I needed a hip joint.

But then the second orthopedic surgeon I went to later, and who is a keen cyclist said no joint is needed and to keep cycling, and I asked about the pains, and the scan report said there was a tear in right gluteus max, and something wrong with a tendon, and there was slight cartilage thickness reduction, but said nothing about bone on bone. So problems I now have may heal over time, but maybe not if I didn't get off backside and do stuff.

The scans were before the healer tried to heal. Anyway, pains did not subside much after healing prayer but an old lady who knows about remedial massage did make things a bit better, and a young bloke who does massage of meridians seemed to make things worse, but now, a couple of weeks later I'm cycling quite well with higher average speed, so I'll continue, and jury is out on whether God helped or not. I doubt it. Does that mean I have to go to Hell because I doubt God? Frankly, I don't believe in God as so many imagine him to be, and sending someone to Hell for Eternity for a variety of sins would qualify God to be the greatest sadist of them all.

The healer and I are good friends, I accepted her healing which was her way of giving good will.

 

Yesterday was a very nice spring day for a cycle ride after lunch, and I read about the Distinguished Gentlemans Ride of motorcyclists here who began a ride at 9am, then proceeded to Kingston Hotel to gather after, so after my lunch at 12pm I cycled over to thus pub to say hello. There were only 4 or 5 still there, and they wondered why I was there, and I just said "I'm stage 4..." and the penny dropped. I had a good talk to them, very enjoyable.

Perhaps you might peruse the site at   https://www.gentlemansride.com/

I tried to join up as a member but seems they don't accept cyclists, but one was riding a 90cc Triumph tidler, and not one of Triumph's larger models. I saw one around last Thursday, 800cc, kinda large and clunky compared to the BMW R75/5 750cc I rode in my 20s. I did once have a Honda 100cc, set up with dropped bars and lower seat for café racer style, and tuned exhaust pipe and it made a nice buzz-bomb that could do 100kph+ down hill. Great for city use in Sydney. I even took a girl on back to top of Mt Kosciusko in 1971. Rangers booked me for parking there. Chased me in a helicopter, so zealous, but vehicles had just been banned there. 

I imagine the DGR guys rode in many places in Oz yesterday. The fellow I spoke with said the world wide ride raised $25million for Pca research last year in association with Movember thing.

 

So after my chat, I cycled about 40km more, and got home at 4pm, for a total of 53km. I'll probably be able to cycle across town for 58km tomorrow, because there's a very nice coffee place there.

I'll continue with massage and stretches, and I wonder if Jesus is on my side or not.

I am not sure Jesus really healed anyone, but one wonders if the healing and other miracle stories were added in texts on his life many years later to gain converts. It is a very human thing to spread fake news to get followers.

 

Try to stay well everyone, life's worth living, no?

Patrick Turner.

[DaveK1200]

Hi everyone,

 

Just received my latest December 2019 PSA results.

Good news...  down slightly to 9.6
 

Here are my last 4 results...

March 2019:                       14

June 2019:                          13
September 2019:               10
December 2019:                  9.6

I have never had chemo or radiotherapy.
My only conventional treatment was two months of ADT (Zoladex) at the start of 2017.
Since then I’ve only been taking my unproven alternatives.

 

Still feeling great and enjoying life.
Went for a 5am group ride on Sunday and had a ball. (still shots from my helmet cam attached).

 

I wish everyone a Merry Christmas and a Happy New Year.

 

Kind regards

 

Dave

 

[Patrick Turner]

Hi Dave, let us hope your good luck with minimum Pca treatment continues.

Keep a close eye on any sudden rise of your Psa. 

The pics on bike indicate a smoky Glasshouse mountain ride?

 

On 13 Nov, my Psa had dropped to 0.32, indicating Pca activity was 1.3% of what it was before I began Lu177 treatment just over 12 months ago when Psa was 25.

The scans have confirmed I have had a good result with Lu177.

I'm continuing with permanent ADT, plus enzalutamide.

But nearly 3 weeks ago, I had a small intestine blockage that led to The Worst 11 Days in hospital I've ever had, and included to another tummy op where they found part of small intestine had become stuck to previous 2010 surgery scar tissue when an RP was attempted, but failed. Docs looked around my innards and found no sign of any tumours, and no sign of any damage from the RT I have had. I've now survived 10 years since diagnosis.

But before hospital visit, I was cycling very well, speed was good, fitness was brilliant, but after 11 days in hospital with non functioning digestive tract  I lost 7Kg.

It is now a week after leaving hospital and I am eating almost normally, but weight has not yet risen. It has not fallen much either. I might recover fully soon, and if so, I should be able to ride faster because my body volume is 7Litres less, so less wind resistance, and speed up hills should be maybe 5% faster because I'm lighter.

BMI is now an unintended 22.0.

Today, I met a man of 45 giving blood at my local pathology clinic, and he'd had horrid year after falling off his farm motorbike. A handlebar broke a rib, pushed it inwards, where it lacerated his heart, causing two successive heart attacks. So wearing a flak jacket might be a good idea on a motorcycle. His other problem was after there was some rain at Captain's Flat, (70km east of ACT), and he'd drunk some, without boiling it. He got badly poisoned, not knowing why.

Let us hope it rains soon. But BOM says rain is not expected till April, and there's still a lot more bush to burn than already has burned.

Many have far worse problems than you or me.

Patrick Turner.  

[timbaker]

Hi Dave,

Congratulations on your continuing good results. I'd encourage to register with this new study, the Ironman Registry, a large scale qualitative study seeking to learn from the actual lived experience of men with prostate cancer, so hopefully the medical mainstream can learn from cases like yours. 

 

https://ironmanregistry.org/

 

All the best, 

Tim

 

[DaveK1200]

Hi Tim and everyone else,

Tim, thank you for your congratulations and suggestion about the iron man registry.

I visited the site and was very impressed by their home page and their goals.

When I went to the clinicians and researchers page it seems that their intent is to statistically analyse the different treatments that are already available to see which appear to give the best outcomes. They aren't looking for new ways to treat PCA, that's not their role.

That type of statistical research is definitely worth doing as it could help so many people.

However, I couldn't really contribute because I'm not taking any form of conventional treatment.

I suppose they might put me in a No Treatment or an Alternative Treatment category, but I suspect that would be statistically insignificant and useless.

It would be even worse if they lumped me in a "lucky people who did well for no apparent reason because that just happens sometimes" category.

I have heard that said many times and I acknowledge that may very well be true.

However, there's also the chance that what I'm taking might actually be helping me, but very few people will acknowledge that possibility.

Merry Christmas everyone

Dave
 

[Patrick Turner]

16 hours ago, DaveK1200 said:

Tim, thank you for your congratulations and suggestion about the iron man registry.
I visited the site and was very impressed by their home page and their goals.

I have signed up to the site. I assume they'll send me pages of questions to fill in about my Pca.

But my full medical history with Psa graph and is available at my website for anyone to read.

Whether any information gained by the ironman site leads to some breakthrough in treatments is completely unknown. I have lost count on how many times I have filled in surveys about Pca and my mental or physical condition and attitudes to Pca and I have zero clues to how it helped anyone better understand men with Pca. There was never any later report sent to me to sum up the findings of surveys with list of treatment recommendations.

It seems I'd have to give blood samples for analysis for iron man registry ppl to look at. If they want it, they'll have to pay all costs. I have heard about men getting blood analysed for Brca2 etc, because most conventional treatments had failed, and costs can be horrendous. But there must be hundreds of patients who have left behind a huge medical record of what worked at least for awhile until Pca killed them or something else did, and to me this is a huge mine of possible useful info, but maybe only useful if there was DNA analysis done, so that researchers can see what didn't work. I think researchers need to look at negative outcomes from treatments given by doctors, and negative outcomes from alternative treatments selected by patients, and not spend all their time stabbing in the dark for something new to make themselves famous, but not lead to big numbers getting a long term benefit. 

I might try to ride my bike to get to cafe today. Its only 2.6km away, but its a start after my gut blockage caused by adhesions, a nasty side effect of open RP surgery in 2010. 

Patrick Turner.

[DaveK1200]

Hello everyone,

 

I thought it time for another update.

 

First I’d like to say how much Wendy and I enjoyed meeting everyone who attended the Greenbank “Face to a Name” meeting earlier this month.

 

My wife Wendy really loved her chats with “the Girls”.

It’s good to remember that we are all real people, and not just names on a computer.

We’re all in the same leaky boat.
(Even though we might be trying different ways to stop that leaky boat from sinking.)

 

Anyway, here’s my latest news ....

 

I had another PSA test this month and it’s dropped a bit again.
It’s been falling for the last 5 tests in a row.

My PSA was 12 in December 2016 and after 2 months of ADT it dropped to a 1.4 low.

Once I stopped ADT in early 2017 due to intolerance my PSA steadily rose for 2 years until it reached a high of 14 in March 2019.

Since then my PSA has steadily fallen and is now down to 8.7 in March 2020.

My last 5 PSA results are ...    14,  13,  10,  9.6,  and the latest is 8.7

 

I have not had prostate surgery, chemo or radiotherapy.

 

I also had my fourth PSMA/PET scan done at QScan, North Lakes 13/03/2020.
That was Friday the 13^th,  and I wasn’t really happy because I’m a bit superstitious.

 

Wendy and I met with my oncologist at St Vincents Private, Chermside the following Tuesday, 17/03/2020.

We were all delighted with the results.

My previous scans had shown metastases near my near aorta, near my oesophagus, near my groin, and in my left pelvic side wall.
In this latest scan the only cancer showing outside of my prostate is the one near my groin, and even that is smaller than it was in my previous scan in September 2018.

 

My Oncologist is amazed.
He fully expected that once I stopped conventional treatment in early 2017 my PSA would continue to steadily rise and my scans would get progressively worse.

 

I asked him if the 2 months of ADT way back in early 2017 could still be having an effect.
He emphatically answered “No”.  

 

I also asked him, hypothetically, if I had only just been diagnosed and this current scan was my very first PSMA/PET scan would he have recommended surgery. 

He answered that, hypothetically, some doctors might suggest surgery but he would have leaned more towards targeted radiotherapy on my prostate and the spot in my groin. 

 

He then added that the reason he hadn’t recommend radiotherapy for me 3 years ago was because of my original late 2016 PSMA/PET scan.

 

He also said that he wouldn’t recommend it for me now because what I am doing seems to be working for me, even though he had thought it wouldn’t.

 

“Just keep doing what you’re doing” has become our catchphrase.

 

He has always known what I have been taking and he accepts my right to make my own choice, even if he thought it wouldn’t help and told me so 3 years ago.

 

He then asked me if I would give him permission to discuss my case at a Multi Disciplinary meeting with other specialists.

I believe those meetings are often used to discuss the best way to treat a case, but that is not what he wants to do.

He said that he wanted to bring it up at the meeting because my case is so unusual and he wants to get the reactions of the other specialists.

 

 

 

I wish everyone the best of luck for the future.

 

Cheers

 

Dave Kenny

 

[DaveK1200]

Hi everyone,

 

I had a phone consult with my Oncologist this week.
He’s doing phone consults whenever possible because of Covid 19.
It was really strange having a phone consult instead of our usual face to face meeting.

He said my bloods were generally ok, but my Vitamin D levels were a bit low.
I joked that my wife is always trying to get me to clean the pool with my shirt off and I’m not sure if that’s so I can get more Vitamin D or if she just likes seeing me that way.
Anyway ... I agreed to get out in the sun a bit more without overdoing it.
 

My Oncologist also told me my June 2020 PSA result was 10.
I asked him if I should be worried about the small rise.
He explained that I shouldn’t be concerned about it when compared with my results over the last year or so.
He said that PSA tests have a “margin for error” and when that is taken into account my results are quite stable.
So I was delighted to hear that.

 

My last 6 PSA results are:

 

March 2019:         14
June 2019:            13
August 2019:        10
December 2019:  9.6
March 2020:         8.7
June 2020:             10

 

We finished the phone consult agreeing that there is no need to change anything , and he is very pleased with how I’m going.

 

If anyone has any comments or questions please put them in this thread, or send me a Private Message, or an email to  DaveK1200@outlook.com

 

 

Kind regards

 

Dave

 

 

[alanbarlee]

G'day again Dave,

You would have to be one of our really weird cases - in a good way!

I'd be a little doubtful that your PSA plateau and variations is 'testing error'. You clearly have prostate cancer (Gleason 4 +4) that has metastasised - but for some reason, unrelated to the usual treatments, which you haven't really had, the mets have become dormant, as the 'stationary' PSA indicates.

It would be interesting to know what your oncologist's conversation with the multi-disciplinary team came up with.

You might want to consider enrolling in an exceptional responders trial (I know of one based in Sydney, at least).

Keep in mind that you still have your prostate gland, and that there is some evidence that there is 'communication' between the primary and mets - which in your case might somehow be a good thing - at least for now. Systemic treatments are usually very good at extending life in the context of Stage 4 cancer, but the downside is often ultimate drug resistance, caused by cellular mutation (evolutionary adaptation to the treatments), which can make the cancer harder to treat. Hopefully you're at least postponing that effect by successfully deferring systemic treatment. 

If things should change for the worse you have plenty of shots in the locker. Primary radiation therapy (IMRT or brachytherapy)  or systemic lutetium could be considered to reduce your tumour load and to possibly help to activate other systemic treatments like abiraterone or enzalutamide. There would also the possibility of trying a GNRH antagonist (degararlix or a new one, relugulix), which work a bit differently to the usual ADT agonists (like Lucrin and Zoladex) that you had trouble with.

For specific genetic variants,  PARP inhibitors and immunotherapy have recently emerged - lots of possibilities! 

In the meantime, you're doing great while keeping your powder dry! 

Best wishes,

Alan

[Patrick Turner]

2 hours ago, DaveK1200 said:

He explained that I shouldn’t be concerned about it when compared with my results over the last year or so.

I think you are in a lucky position where an oncologist isn't worried that your Pca threatens your life any time soon. As time goes by, an increasing number of treatments are accumulating to make you last longer if your Pca activity does become cause for concern.

Perhaps I might provide everyone with my present Pca progress to illustrate a contrast of what may happen.

In late 2018, after ADT and chemo failed, I began Lu177 in November 2018 with Psa 25, and countless bone and soft mets.

By August 2019, when a second followup PsMa scan was done, the soft tissue mets were all gone and Psa was about 1.6, with bone mets healing. By November 2019, a year after starting Lu177, Psa fell to 0.32, maybe with help of Xtandi which I'd begun in April 2019 during Lu177 shots.

But 0.32 was Psa nadir, and ever since then Psa has risen and is now 14, with countless bone mets, but NO soft tissue mets anywhere, which is very good news. So my Pca seems to all be in my bones.

So now with Psa galloping upward, I have talked to oncologist today about last week's 7th PsMa scan. Ga SUV is high enough to get a further benefit with more Lu177, and I begin talking again to doc at Theranostics Australia in 8 days by use of ZOOM which I cannot get the work yet, but I know an IT guy who will get it to work as well as Skype did in past.

My doc said TA doc has already seen latest PsMa scans and said I should get nice benefit again from Lu177, which is in line with latest research by team at PeterMac hospital in Melbourne. 

My doc also listened to my dismal family history where many of my relations have died of suffered from disease of reproductive organs, Oa, Brca, and also melanoma. I am most probably Brca1+2 positive so my doc referred me today to a resident Canberra Hospital geneticist who will be in contact to look carefully at my blood to look for mutant Pca cells and test for Brac1+2, and maybe put me onto PARP drugs, Olaparib maybe. This therapy could be done while Lu177 is given.  

So in response to my rising Pca, wheels of the medical system are turning to favour me and I could not really say better treatment would be available anywhere else in the world. My doc was pleased to see me today looking healthier than ever in lycra at nearly 73 and cycling 200km+ a week without any symptoms of Pca. He's even bought a bicycle himself, and is enjoying the health it has brought to him. He has no time for 200km a week, but even 50km would give a benefit to CV system.

I have been through this rising PSa stuff before, and had many more mets when I began Lu177, and after 2nd infusion of that in early 2019, there were 3 weeks where I cycled 960km. Psa was over 20. I have no idea if my exercise helps or not, but I sure enjoy two wheels.

Last year's Lu177+ scans cost about $40,000, well spent, and maybe it will be same again this year, and luckily cost does not matter, and I really have nothing to whinge about. I watched a lady being interviewed on ABC who said she'd sold her house and spent $1 million to stay alive to enjoy her grand kids while she fought with breast cancer. That is really loving life. 

I don't know when I will lose my war with Pca, but I might just be lucky, and get another 5 good years.

That's maybe enough time for some more promising research to convert into efficacious therapy for advanced Pca.

After the chat with my onco I cycled on to get 60km for the day, and thought about what had been said, and I enjoyed perfect June weather in sunshine with no wind.

Patrick Turner.   

 

[DaveK1200]

Hi Alan and Patrick,  (and everyone else too.)

 

Thank you for your good wishes.

 

Alan wrote .. “You would have to be one of our really weird cases - in a good way!”

 

Thanks Alan,   however I believe there would be many others around the world doing similar to what I’m doing.

Here’s a PUB MED abstract about a patient much worse off than me who appears to have done a lot better than expected.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5624684/

 

 

Prior to my phone consult I decided not to ask my oncologist how his discussion with the multi-disciplinary team went.

If he brought it up himself that would be fine, but if he didn’t then I felt it better to wait for a face to face consult to better gauge his reactions.

 

Best wishes to Alan, Patrick and everyone else.

 

Kind regards

 

Dave

DaveK1200@outlook.com

 

[Patrick Turner]

Hi Dave, the prostate cancer nurse at Canberra Hospital said she knows of men who have Pca with Psa 10 that remain unchanged for a long time. In 2 weeks since the nurse told me that, presumably to stop me worrying, Psa went to 14. It was 0.32 last November, and rate of doubling is FAST, so action is needed, and fortunately, I'll probably begin more Lu177 treatment in July, not far away, and with anything else docs think might help.

I have countless bone mets. 

Stable but seemingly high Psa is not unknown, so I'd agree your case is not weird.  

But for most of us with advanced Pca, there's nothing weird or nice about our Pca which seems intent on killing us, despite a procession of mainstream medicine treatments, and all alternative herbal or other remedies have zero effect on out Pca progress. Anyone who has a stable Psa after diagnosis is a lucky man, but its usually just luck and nothing else that determines that, ie, their DNA behaves like that and the secrets of their DNA cannot be transferred to other men.

I knew a man who posted here and who died last year, and his luck was real bad because RP failed, EBRT after RP failed, ADT lasted 3 months then failed, Cosadex made Psa rise from 7 to 40 in 2 months, chemo worked for first 2 doses, and 10 doses made Psa rise back to 40, and left him with horrid side effects that make ADT look like a picnic, and although Lu177 would have been a benefit docs tried PARP inhibitors because he was Brca2 positive, and that caused a delay of a month, and Psa went from 40 to 432, and then a whole bunch of new mets appeared in his liver, and he got so sick he could not have Lu177, so he died last year, less than 3 years after diagnosis and under 60 leaving a beautiful wife and 2 kids behind, which was a terrible disaster for them.

But most of us can enjoy a long time with a reasonable QOL living with Pca as a chronic disease, but I spent $40,000 just to stay alive last year. There are plenty of men my age 73 who don't have Pca, and who may never get it, and their Psa may remain < 1.5 even at 85. Many under my age have a list of health problems that make my problems look trivial. Taking a walk around my hospital here is a humbling experience. 

I hope your luck lasts. 

Take care on the motorcycle,

Patrick Turner.