Is this kind of research being done?

[DaveK1200]

Hello everyone,

 

An idea about another possible line of cancer research has occurred to me and I thought I’d put it out there for comments and suggestions.

 

Naturally it needs a bit of background first..

In December 2016 I was diagnosed with biopsy proven prostate cancer and a Ga68 PSMA  PETCT scan showed it had spread.
It showed the cancer had spread to my lymph nodes with metastases near my aorta, oesophagus and in my groin.

 

However, another Ga68 PSMA PETCT scan in May 2017 showed no cancer anywhere.

 

My oncologist was amazed with the results and he suggested it might be because my cancer was super sensitive to the drop in testosterone caused by the 2 single 3.6mg injections of zoladex that I had received in February and March.

 

I asked him if he had ever seen such a wonderful change in scans before.
He answered that they do happen from “time to time”, but was not very specific about it.

 

Anyway, my question is this...
If doctors occasionally see amazing changes in scans like mine, are those patients’ results being correlated by a central body which can look into them and perhaps find a common link as to what might have caused the dramatic improvements?
 

And..

If such correlation/research is already being carried out, why hasn’t someone contacted me so I can be part of any studies?
 

Does anyone have any thought or suggestions?

 

Best wishes

 

Dave

[Admin]

Dave

Jim Marshall (not a doctor) said ...

Studies have been done looking at rapid response to initial ADT.

 

When my PSA went rapidly undetectable eight years ago I looked into it myself.

Unfortunately, while I had expected that this was a good thing, it turns out that a rapid fall may actually be a risk factor for earlier resistance to treatment.

 

There have been no studies that were planned to look at this (prospective studies, giving strong guidance).

The information only comes from looking at studies done to look at results that happened to be gathered for another purpose (retrospective studies, which are not so reliable in their results).

 

Anyway, my personal fast PSA fall on ADT has not meant rapid resistance to treatment. Indeed, eight years later I am still not resistant to treatment. Let's hope we are both in the same boat!

... end Jim

Jim

 

A few weeks ago another retrospective study looked at rapid initial fall of PSA:

 

Medicine (Baltimore). 2017 Sep;96(36):e7823. doi: 10.1097/MD.0000000000007823.
Rapidly decreasing level of prostate-specific antigen during initial androgen deprivation therapy is a risk factor for early progression to castration-resistant prostate cancer: A retrospective study.
Ji G1, Song G, Huang C, He S, Zhou L.
Author information

Abstract
To build a practical model for predicting the progression to castration-resistant prostate cancer (CRPC) after androgen deprivation therapy (ADT).In all, 185 patients with prostate cancer who had received ADT as the primary therapy at our institution, from 2003 to 2014, were retrospectively enrolled. The following clinical variables were included in the analysis: age, clinical tumor, node, metastasis stage, Gleason score, risk groups of prostate cancer, prostate-specific antigen (PSA) at the initiation of ADT, PSA nadir after ADT, velocity of PSA decline, and the time to PSA nadir. Cox proportional-hazards regression models were calculated to estimate effects of these variables on the time of progression to CRPC.On univariate and multivariate analyses, the presence of distant metastasis before ADT (hazard ratio 6.030, 95% confidence interval (CI) 3.229-11.263, P = .001), higher PSA nadir (HR 1.185, 95% CI 1.080-1.301, P = .001), a velocity of PSA decline >11 ng/mL per month (HR 2.124, 95% CI 1.195-3.750, P = .001), and a time to PSA nadir ≤9 months (HR 0.276, 95% CI 0.162-0.469, P = .004) were significantly associated with an increased risk of progression to CRPC.Patients with a rapidly decreasing PSA level in the initial phase of ADT are more likely to progress to CRPC. Our findings provide a practical approach to screen patients during ADT for early identification of those likely to progress to CRPC, allowing treatment to be modified to improve outcomes.
PMID: 28885333

[Admin]

Dave

Just in case you didn't notice, in the study above, the lowest PSA reached (nadir) lowers your risk.

So, like me, your PSA nadir of undetectable makes things more positive.

 

Cheers

Jim

[Admin]

Dave

Here's another posting of mine on the topic from another site in 2009.

JimmyToowong reposted it in 2011 to this site.

The result always puzzles me, and I have asked experts to explain it, but I cannot explain it myself.

 

Jim

 

 

[Colin Glover]

Dave thanks for posing that question and I hope the results continue to be good. My wife was diagnosed with metastasis brain cancer 6 years ago. Since then she has had a tumour largely removed, she had pleurodesis on the lung to reduce the cancer spreading. She has numerous instances of bone cancer and now a new tumour has been found. However throughout this her oncologist has been amazed at how slow her cancers have been growing. We do some things which are a bit different to most but in spite of my asking they have shown no interest. I totally agree why isn't there some searchable database that information can be lodged in, so some of these outliers can be followed up by the rare enquiring mind.

 

I have advanced prostate cancer which I have known about for over 9 yrs. I have only recently gone on to lucrin with a good response, so far with little downside. However for some 4 yrs, up to Dec 16 my psa plateaued around 20 and all I was doing was taking a beetroot, carrot, celery, ginger and apple juice every second day, with my wife, for last 6 yrs.  Also bicarb and mollases several times a day for weeks at a time then leave for awhile. So why did it stay stationary for so long then go to 34 but within a 3 weeks of starting ADT drop to 10? A reduction that startled a urologist as he wouldn't see that for some 3 to 6 mths. Wheres the enquiring mind?

 

I saw an external Urologist Registrar at a public hospital this week and he wasn't interested in my progress. He didn't ask any questions. Told him that I was going so well that I didn't see any need for a TURPS now and  I suspected my prostate had shrunk significantly away from my rectum. Could he do a DRE, please. No, we don't do DREs at this juncture. I have indicated I'll more than likely have radiation early next year. Rating 2.5 out of 10.

 

Thanks for reading

PS  I have just read Jim's response to Dave's post. Interesting and all the more reason why my urologist should have shown more interest.

[tonymax]

Dave,

Dont think there is currently any mechanism to capture and evaluate positive outlier results you describe.

It makes sense to me that there should be.

I am currently on an enzalutamide clinical trial with excellent results to date.

Since June 2014 my PSA has dropped dramatically from 70 and has been holding at 1 for some time.

Many guys on the trial got much less benefit in terms of PSA reduction and benefit times.

At my last appt suggested to MO that checks to see why I am lucky might be in order.

He sort of agreed but did not volunteer any process to actually do this.

Next appt is next week so I will raise it again.

Each state now has a Prostate Cancer Registry where data like this for individual patients can be captured.

My understanding is newly diagnosed patients are added to the Registry if their doctor or hospital have signed up.

Most doctors and hospitals are signing up.

But I was diagnosed in 2003 and am not on the NSW Registry.

Also the Registries emphasis is to benchmark doctors and hospitals rather than patient positive outliers.

I am on the NSW Registry Steering Committee as a consumer rep.

I have raised these issues previously there with little success - they are not set up to handle it yet.

Happy to keep pushing them on it.

 

Regards           Tony Maxwell

 

[DaveK1200]

Hi again everyone.

 

Thank you for your comments they are very much appreciated.

 

However I wasn't talking about amazing drops in Psa levels. (Even though that's great too).

 

I was actually referring to patients who had amazing changes in their scans where the cancer seems to have somehow vanished.

 

Thanks

 

Best wishes 

 

Dave 

[DavidAbrahams]

Hi Dave,

With respect to your query there is no national register of Prostate Cancer cases, that should include initial diagnoses, type and grade etc, let alone how men are treated initially and ongoing, plus what is the response to that treatment. There was talk about 4 or 5 years ago that the National Cancer Council had been given funding to establish such a register. Have not heard any more about it so it’s doubtful that it got off the ground.

If there was such a register / database it would go a long way in helping to improve treatment regimes etc. At present it is left to the experience of the treating specialist, what he/she has done or read about.

With respect Scans of any type the findings depend on the skills and experience of the technicians as well as the consultant.

In the 9yrs of my journey I have three incorrect diagnoses or disease classification.

It may be worth your while to have both sets of your PSMA scan results to be read by an independent 3^rd party.

I was given 3yrs to live 9yrs ago, but now moving to the sharp end!!

Goodluck in your journey.

Cheers

David

[Patrick Turner]

11 hours ago, DaveK1200 said:

However, another Ga68 PSMA PETCT scan in May 2017 showed no cancer anywhere.

Hi Dave, The PsMa gallium scan can only get an image of where Pca may be if there is enough Psa being generated to attract the ligand and Ga68. If your Psa is reduced by ADT or chemo etc, the scans show less cancer because less Ga68 gathers at sites of cancer.

So someone who had undetectable Psa with ADT would get scan that showed he had no Pca. But IMHO, the cancer that appeared in your first scans is likely to all be still there, but it is mostly asleep, not making much Psa, and if you continued ADT it will stay asleep, but not forever. But all sleeping living tissues are subject to changes while asleep, and Pca cells slowly change while asleep to grow more testo receptors and maybe grow their own dihydrotestosterone, DHT, that is 20 times more promoting to Pca cells continuing to live, and grow. Your adrenal glands produce a small amount of testosterone that normal ADT does not stop. So this low amount of testo helps the Pca live better while mostly asleep. Other forms of scans such as MRI or CT can't see Pca cells at all very well, and the Ga68 scan is much more effective at showing Pca small spots. But where there are 20 spots in a scan, there may be 200 or 2000 more, but too small to see because amount of Ga68 that gathers at these micro tumors isn't enough to create an image.

 

Dr Hocking at Peter Mac told me in an email that the problem is halt the disease, not just get the Psa low. He had some huge initial success with Lu177, but not everyone benefitted. And we don't know yet how long Pca will be reduced by Lu177, or how to accurately measure doses needed for remission. You and I could easily ask 10 questions but researchers may have 1,000 unanswered questions in their minds. 

So I think the change to scan in your case is easily explained but gives no evidence there is a lesser mass of tumor present. More proof would be needed before making any positive claims. I would say that if your Psa was declining without ADT over next months you might be one of the extremely tiny number of men where 2 monthly doses of ADT was all it took to give what looks like remission.

The trouble with Pca is that often men think they have beaten the disease when Psa is undetectable 2 years are and RP, or that ADT has Psa undetectable. But over time, so many fellows have rising Psa after RP, sometimes years after, and as soon as ADT is stopped, Psa rapidly rises, and it leads to at least 30% of fellows diagnosed having Pca lay them low within 10 years. An unknown number of men have Pca which initially makes Pca but when it spreads the Pca cells don't make Psa, and for them it is the very worst kind of Pca because ADT won't work, not will Ga68 scans, or LU177 treatment, and its doubtful chemo will. Nobody can be sure that all their metastasis cells produce Psa. Maybe some do, and others don't.

 

There are hundreds if not thousands of stories on Pca chat groups around the world. We all like to tell our story. I read hundreds from the time I was diagnosed in 2009. Not one story about remission. 

Remember when Aids was a real killer? It defied all the research efforts for years until something was found. Remember all the false claims about cures for Aids? Governments slowly realised gay young men were worth saving by big money in big labs. Bravo! Pca is much harder to defeat. Its a slow killer of mainly old men and research is undertaken because old men have money, and they may happily spend $100,000 to stay alive another year. But the real value of old men is limited; society values children and younger women more than old men. But then there's all the other cancers, not to mention the rare cancers which usually are a definite early death sentence.

So there is huge competition for research $$, and there's a priority list and the $$$ go where there is probably going to be success. 

 

I have a neighbour who insisted we can't get cancer if our immune system is perfect, and he suggested his was, which I found astounding to hear from an educated man of 52. I said I thought the problem was that nobody's immune system can ever be perfect, and that some cancers have the horrible character of being able to fool the immune system which does not recognise Pca cells as rogue cells.

We agreed to disagree. Now what's going to happen if he gets diagnosed with Pca?

 

I witnessed so many older ppl in my street and friends and relatives die from cancer I thought it would be very strange if I didn't get some terrible ailment after 55. Sure enough I got my dose at 62.

I heard Sloan Kettering Hospital is heavily researching immune therapy and Garvin Institute in Oz. Maybe they find a way to get our immune system to recognise Pca, or whatever other cancer it is, and maybe if we are lucky then what they find works with say lung or breast cancer can be used for Pca. Don't hold your breath waiting for breakthroughs. A doctor here is sometimes getting fabulous results with hopeless cases by examining DNA of a cancer, and matching the chemo to the DNA based on what is known to most likely to work.

I phoned his office, and asked if any treatment might be available if I had a referral. His lady staffer asked if I was insured, and I said no. She said there could be no treatment for me because I wasn't insured. I said I had plenty to pay for treatment and could give proof and pay in advance, but her answer was NO. In other words, I had my own private insurance, savings, but maybe their clinic had so much trouble getting dough out of ppl that they applied a harsh rule, and they'd get money from an insurance company more reliably than from any other source. It wasn't cheap what they offered, maybe $100,000+, and there was absolutely no way they could or would give a quote or details of costs of success with other patients.  

Has anyone diagnosed my cancer DNA? NO.

After my diagnosis I contacted places of research and offered them my story, and after a cordial hello there was no further involvement. Adelaide Hospital was one, and School of Medicine at ANU where I live in ACT. The ANU did contact me once, so I'd talk to a student for 30 minutes, but they told me 2 with 2 days notice, and I could not attend, but I said any other time, and I gave them my webpage address for my Patrick's Concerns page, and I heard nothing. So there places are saying they do research, but there may be really next to nothing being done, no lab, nobody in a white coat, no monthly published results, and methinks many researchers are scammers trying to attract wealthy old givers who are fooled easily.  

Patrick Turner.

[DaveK1200]

Hi David and Patrick 

 

Thank you for your input.

David.. The idea of a database to hold all results sounds great but as you mentioned it doesn't seem to be going anywhere.

 

Even if it did I'd be concerned that exceptional improvements in particular patients might get lost in a huge sea of data. Hopefully that wouldn't occur.

 

Patrick... I understand that my cancer might be hiding, but my PSA at the time of the second scan was 1.4 as I had been off ADT for a couple of months.

One of the benefits of that type of scan is supposed to be that it can detect cancer at very low levels. I seem to remember reading somewhere that it had a 75% detection rate if PSA was between  0.2 and 1.0 but I could be wrong.

 

Anyway, whether my second scan is accurate or not is irrelevant to my original idea of correlating and studying any massive improvements in such scans.  

 

If all such cases were investigated further then any false results should be weeded out leaving any remaining cases for researchers to study and possibly discover something really important.

 

Best wishes 

 

Dave 

[Patrick Turner]

7 hours ago, DaveK1200 said:

I seem to remember reading somewhere that it had a 75% detection rate if PSA was between  0.2 and 1.0 but I could be wrong.

Before I got my first PsMa scan I'm May 2016, I recall being told Psa had to be between 2.0 and 10.0, 10 times the figures you are mentioning for a fair indication that there was a significant Pca spread.

The idea of a "75% detection rate" is very vague. Fact is that where two lymph nodes were positive, with size of tumors less than 2mm dia, it was very likely there were maybe hundreds of tiny micro tumors unable to detected, and doctor at Epworth said whatever tiny spots of spread I had were not going to kill me soon but Pca in PG was going to get much worse locally to kill me if nothing was done now, and I'd be dead within 2 to 5 years. 

There will some technical info online somewhere about conditions for best results PsMa. In May 2016, I had two positive upper thorax  lymph nodes near oesophagus and a lot of Pca in PG, and this was after 6 years of normal ADT had begun to fail and after I'd had primary standard EBRT to PG, 70Grey, which I later found had a 90% failure rate with a Gleason 9 tumor. This was stated in website page from St Vincent's Sydney. Its since become no longer available.

 

Canberra Doctors concealed the nasty facts, acted badly to give me second rate RT which should have been 150Grey with brachy therapy, costing far more than an RP, and not available in public hospital. But the system had already failed me by not having threshold for action when Psa reaches 3.0.

In July 2016, at Epworth I had 31Gy additional IMRT to PG and 45Gy to each lymph node. To avoid damage to rectum with more EBRT to PG, a 10mm thick x 30mm dia pad of gel was inserted between my PG and rectum. 3 small radio beacons were injected to my PG to guide the Calypso RT machine. I bled badly after the tiny amount of surgery which involved an applicator needle about 4mm dia. I spent two days in Epworth after that and it was supposed to be an outpatient service. I was the first to get this kind of "salvation radiation" and the doctors just didn't see that my bleeding was most likely to cause prolonged bleeding. So where did the blood go?

Well some went into perineal cavity and would have had a good load of Pca cells, so where did that go? Lord Noze, and these fancy doctors never even considered the possibility the bleeding after radio beacon insertion could have spread my Pca far and wide. 

But at 2am after the minor op for beacon insertion, I am blocked up and cannot piss, and the night staff at Epworth were not the pretty young things eager to please but a grumpy south American immigrant who had such bad English and bedside manner I demanded he phone up the doctor who did the insertion and ask him "what now?" An intern was found, he made the call, and I let them insert a catheter, mindful that my prostatic ureter probably had a blood clot obstructing piss flow, and mindful that it is a fragile pipe which has copped full bore radiation and it would be very serious if it was holed, or completely ruptured. In went the catheter, and thick blood came out, and some had backed into bladder, and blood continued into bladder for 2 days and catheter was removed. I continued to bleed slightly for 10 more days. The unwanted hospital say cost $1,700, and "it shouldn't have happened", but in the land of medical procedures SHIT HAPPENS, OK.

There was a planned 10 day gap between gel and beacon insertion, ( and the 10cc of gel cost $2,000 ) and the start of IMRT with Calypso machine which IMHO is The Best external beam radiation delivery gadget anyone can have.

During the 10 days, I had a good number of emails between doctors and I nearly decided to pack up and go home, but nothing ventured, nothing gained, and I stayed to have a 26 day RT session. But doctor could not supply any data showing that his planned RT would work so I gave him "my uninformed consent" by email and told him to proceed. RT effects, or non performance or failure is very difficult to argue about successfully in any negligence court case. The big private hospitals easily fund expensive lawyers, and if you loose, you pay their fees.  After July 2016, I kept having monthly Lucrin injects and doc put me on Cosudex permanently. The USA doc who had tried all this treatment before in 2011, stipulated 150gm a day for Cosudex to get best Pca cell death during and after the IMRT. I was told to take 50mg a day, and I asked why not 150mg, and I hit a wall of indifference, and was told 50mg was enough. The Psa went from about 6.0 at time of this RT to 0.7 in a month, then to 0.4 by December, then game over, it leveled by Feb 2017. I had both knee joints replaced at Calvary in ACT. But Psa climbed, Cosudex gave me only 6 months suppression.

In June 2017, I had another PsMa scan this time in ACT which I think has a better lot of operators than at Bridge Rd in Melbourne, near Epworth Hospital.

The June 2017 scan showed many more mets in upper thorax lymph nodes and in some more in bones. The report said there was less Pca in PG, so the additional RT at Epworth seemed to have worked a bit, but just how well is quite unknown, and that the two lymph node mets radiated in 2016 were slightly larger, quite understandable because if my horrid type of Pca cells need at least 101Gy to exterminate most Pca cells , then the 45Gy to each lymph node would surely fail. Fortunately, no Pca spread to bladder or other organs was found.

The trouble with radiation is that there are nearly always survivor cells which then keep growing and mutating  and may be unable to be treated with anything, and if they don't make Psa, they can't be easily detected. Plenty of docs would look at my story, and think, "Maate, youse are f-----d".

Was my Pca spread 12 months before by the idiot with huge needle cutting into previously radiated PG tissue? There's a curly question if ever there was one, and what sort of answer could I ever expect? Nice reassuring words and all said to protect their arses getting kicked legally. There are large piles of Taureus Excretium said by doctors to patients all the time.

 

 

So I can assume I am riddled with hundreds if not thousands of mets of Pca. Its just what "high risk" Gleason 9 tumors to PG do; they start off years before as too tiny to detect, and certainly detection was more difficult in 2005. Nobody worries until Psa is 5 times normal of 1.0. Where did that figure come from? Normal is supposed to be between 0.5 and 5.0 depending who you read, and some can have Psa 20, but no Pca ( yet). But I saw normal at 40 was 0.7, at 60 was 1.0. Too late to worry now, water is well under bridge. But I should have had biopsy when Psa reached 3.0, not 5 some 4 years later when what may have been a tiny PG tumor that had not spread to become a Gleason 9 monster which had spread. "High Risk" means "bloody horrible!" There are a large number of fellows getting around with Psa = 0.000 after 5 years post RP because they got the PG Gleason 5 tumor early because it produced far more Psa than my cells.

 

We will never hear anything from men whose surgery worked OK because men just don't ever like going back to a terrifying and painful episode years earlier. They have not had to learn to live for years with their fight with Puff The Magic Prostate Grenade which very slowly explodes. 

I cannot assume for 1 second that I won't have a battle with Pca in future years. It is extremely likely Pca will kill me. I tell myself, "suck it up fella", and I have read the overwhelming number of stories of blokes who hoped for better, but better never came. So I can only have what time I have left, try to seek best treatment, but knowing that sometimes I just will never get be able to get it. I have little idea how long I have got for good life quality. It could last until next week, or 5 more years, and if there are no breakthroughs I'll just die like so many before me.

But I have cycled 315km these last 7 days, and overtaken many blokes 20 years younger, so its remarkable what a totally de-sexed 70yo male riddled with cancer can do.

Patrick Turner.   

 

[timbaker]

Hi Dave,

I think this is a fascinating topic and to me it seems crazy that there isn't this kind of research being done. I read your initial post about your cancer journey and believe these sorts of results should be collated and studied in some kind of central data base but clearly it isn't being done and, without wanting to sound like too much of a conspiracy theorist, I would guess one of the reasons it doesn't get done is there is no commercial interest in someone funding it as it doesn't serve a pharmaceutical outcome that someone can profit from. 

There is a great book called Radical Remissions by Kelly Turner that examines hundreds of documented cases of unexplained remissions and she draws her own conclusions about the key factors these cases have in common. It might be a bit too spiritual for some people's tastes  but she concludes that the factors that characterise these cases most dramatically are: a strong will to live, finding a spiritual dimension to your illness, radically changing diet, using herbs and supplements, and quote a few others - https://radicalremission.com - she is in fact trying to create a fairly rudimentary data base where people can post their own cases but there is no mechanism for verifying their credibility so the medical mainstream will never take it seriously. Even so I have drawn some inspiration from these cases and it might be worth you posting your own experience. 

The fact is with any type of cancer, the survival times of patients forms a kind of bell curve - the bulk of patients might fall into a three to five year survival time, but some will die sooner, and a smaller number will live much longer. The curve has a long flat tale representing small numbers of patients who survive much longer than expected. I asked my oncologist about this phenomenon and it is well documented, but he said there is no way to real do credible research on this retrospectively - how do you measure or quantify what people mean by radically changing diet or finding a spiritual dimension to their illness? This doesn't seem good enough to me and there must be a way of doing qualitative rather than quantitative research on these cases, reaching some broad theories on why and how these outliers have survived longer than expected and then design a study around these factors to test the theory. This work as far as I can tell isn't being done. 

I attended two retreats at the Gawler Foundation in Victoria, run by the celebrated cancer survivor Ian Gawler and he told me the thing that surprised him the most when he got better was the lack of curiosity from the medical establishment, and that he hadn't expected it to become a "turf war", that he was seen as a threat to the business model rather than an exciting breakthrough worthy of study. I find this hugely disappointing. Not everyone is going to cure themselves of cancer on faith and veggie juice and meditation but many people have improved their prognosis by these means, and many others have just found a sense of empowerment in feeling as if they can be an active player in their own healing whatever the outcome. That's my rant and I hope one day we move towards this more holistic, integrative model. Congratulations on your great result and I think you should celebrate it and dare to believe that healing is possible. 

 

[DaveK1200]

Thank you once again for your inputs into this thread.

Patrick..   I tried to stress that those figures were only what I seemed to remember reading, and that I could be wrong.

 

Here is an extract from the web site of South Coast Radiology on the Gold Coast.

It is on their "Our News" section and is headed "NEW PSMA PET tracer aids detection of prostate cancer recurrence".

 

In a recent publication in the European Journal of Nuclear Medicine and Molecular Imaging, Dr Afshar-Oromieh and colleagues demonstrated that PSMA PET-CT identified a large number of positive findings in the clinically important range of low PSA values (less than 0.5 ng/mL). Their study evaluated 319 patients, most of whom were suspected to have progressive disease following prior conventional PCa treatment (radiation therapy and/or surgery). All were given contrast-enhanced PET-CT after injection of Gallium-68-PSMA.

 

Further on they write...

Various authors have concluded that PSMA PET-CT can detect small PCa recurrent or metastatic lesions with significantly improved sensitivity when compared to all other medical imaging examinations. This will increase early detection hopefully leading to successful short term treatment of the disease provided by our Urology and Radiation Oncology colleagues.

 

 

Tim..    Your comments really hit the nail on the head.

When you wrote what Mr Gawler said to you about the lack of medical curiosity he encountered, that's how I feel too.

 

Do you remember Professor Julius Sumner Miller and his famous catch phrase ....  "Why Is It So?"
I'm probably being too harsh but the phrase "rolling in his grave" springs to mind.

To paraphrase him..   "If someone appears to have had an amazing  response -   Why? "

 

All the best to everyone out there.

 

Dave

 

 

 

 

 

[Patrick Turner]

I just spent an hour 

2 hours ago, DaveK1200 said:

I tried to stress that those figures were only what I seemed to remember reading, and that I could be wrong.

Hi Dave, Indeed, but figures are figures, and I suggest you ALWAYS quote the url so we all may read what you read, to see if there's a lot more to the issue.

I just spent an hour reading details of scholarly articles about PsMa Ga68 scans and my conclusion was that Psa had to be above 0.5 to get 48% reliability of Pca progression detection, but this was 100% with Psa 20, and that in most trials of PsMa scan tests the median Psa > 1.7, see  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407340/ 

 

I am 100% skeptical of the website https://radicalremission.com/ and I see Kelly Turner looks like a model of 25, too young to know very much at all. The site is riddled with adds to make money,  and I think the whole site is a Pile Of Taureus Excretium.

 

Kelly Turner is not a relative of mine, but even if she was, my attitude would still be, "Darlin, youse are all BS unless you prove otherwise"

 

I saw the original story of Gawler and his bone lesions were shown on TV way back before 1980 and then he said he got rid of them by meditation, kind of willing them the go away. He got others to adopt the same ideas and all sorts of claims followed from so called believers but you don't see much evidence to support claims, and if there were, we'd all have gone down the Gawler path.

People believe in miracles at Lourdes, but you don't see piles of crutches or wheelchairs left behind from ppl getting  a fix.

Prayer just doesn't seem to work, and nor does the modern equivalent, meditation, or positive thinking. 

 

The medical research industry has good reasons to ignore the vast sum of blatherings by purveyors of alternative remedies.

Research is evidence and numbers based, a firmer foundation for finding a cure for Pca than anything resting on bullshit.

 

Consider a hypothetical remission from Pca after some extremely slight amount of treatment. The reason why remission occurred may possibly be found, but its likely that no amount of time and resources could find the reason, and even if they do find a reason it may be completely impossible to reproduce the same remission in anyone else, most likely because DNA editing is still an extremely undeveloped science, with nearly all discoveries leading to another huge number of questions.

 

There's a pile of conspiracy theories about Big Pharma, Big Medicine, and how they want to never find a cure for Pca because there's far more dough to be made to get blokes to repeatedly pay for scans and treatments that don't work, and if a cure was found, it would put a vast number of ppl out of work, on the dole. But LED lights replaced incandescent lights, transistors replaced vacuum tubes, and now electric cars look like wrecking the existing car industry. If a cure for Pca was found, it could never be suppressed, there's no solidarity in all industries or consumers, so theories of conspiracy are BS, and if a cure becomes possible, the ppl displaced will be transferred to other activities because the world is not short of problems waiting to be solved. 

 

Nearly all young curious people engaged in medicine or research is propelled by the wonderment of curiosity, and most are taught a great pile of facts so these ppl look carefully based on what is already known, to avoid the waste of time by reinventing the wheel time after time. Their quest is based on realities, and a strong sense of doubt, the ally of all progress, not spiritualism which is a bunch of neurotic fantasies, often invented by nutters to con others to donate $$$.

 

I take what Dave says seriously, and I know I have ZERO effect on anyone believing in something I think is BS, but I do think I remission from Pca means that the Psa must go to undetectable levels without any continuing medical treatment, so I'd be interested in seeing what Dave's Psa will be in 12 months time if he refuses further treatment. Everyone wants remission. Wanting dominates human consciousness. Life just does not give us all that can be wanted, and I am far to rational to expect it ever would.  

 

But I cycled a good 78km yesterday, making 315km for the week, the waitresses were cheerful at 2 cafes, and there was much about the world in newspapers I read, some truth, some BS, and I felt happy, and today its injection day for Lucrin, a chat with doctor, a good smart young man, and really, there's not much that I have to complain about now. Rationality is in the eye of the beholder, and there's many who'd say that some old bastard cycling 315km in a week must be stark raving mad. OK, OK, but hey, wanna get on your pushie and come out on a ride with me? Lemme tell ya, the world sure ain't flat, OK, its because I hafta cycle up all these horrible hills, and into the mass of air which refuses to step out of my way. Wind always seem to be a headwind, never from behind. Its all OK, ya just go slower each year but the pleasure of just being remains.

 

[DavidAbrahams]

Prostate Cancer, unfortunately is still seen as an "OLD MAN'S DISEASE".

Until such time as, Government Agencies, NGOs, such as PCFA, Cancer Council's etc cease to promote PCa as such we have this immediate hurdle to get over,  let alone managing the many idiosyncrasies of the disease and the impact of the treatment. (worse than the disease)

Another hurdle not talked publically, but worth noting, is if you are unfortunate enough to have AMPC or APC is that the suits in Government see us dead men walking, therefore there is little point in spending additional dollars on fancy data bases that would be extremely beneficial for those following on a similar journey.

To close "The Power Of Positive Thinking" is an extremely powerful tool especially when one has to have discussions with "people" who do not like to hear about other treatments! Travel Safe and Enjoy Life. Yours Aye.

[DaveK1200]

Dear Patrick

Thank you once again for your comments.

 

I’d like to make a few points and I will try to keep it as brief as possible.

 

You suggested that I should ALWAYS include a url.
The reason I didn’t include a link is that I have always been very wary of links in forum posts because of the possibility of them being compromised with viruses or redirections to malicious web sites.

 

You then went on to quote the results of what you found about Ga68 tests which did not really sound very different from what I have been saying from the beginning. I believe that it is the best scan currently available and can be useful with very low PSA levels. I never said it was perfect.

 

When I started this thread I never intended it to be about my particular scans.

 

I was hoping it would be about the general idea of someone collating and investigating cases where there seem to be “amazing” improvements in scans that had been taken and interpreted by trained professionals.

 

Many such cases would probably turn out to have logical explanations and could then be eliminated.
That might include my case too, but any remaining cases might be immensely valuable to researchers.

 

That’s what I was hoping for, and I tried to explain that to you yesterday when I wrote..
“Anyway, whether my second scan is accurate or not is irrelevant to my original idea of correlating and studying any massive improvements in such scans.”     
I am past caring about the fine details of the trials percentages of the scans, and I’ll just accept my oncologists view of the scan reports.
So please give it a rest about the scans.

 

You started off the post with “Hi Dave”, so I suspect that anyone reading it who had not read all the previous posts might reasonably believe from your criticisms of the radicalremission.com web site and the story of Gawler that I was the one who had brought those things up. 

 

In fact those things were brought up by someone else in the thread and the only comment I made about Mr Gawler was that I agreed with what someone claimed he had said about being disappointed with the lack of curiosity in the medical profession. 
I would probably agree with anyone who said that, including you.

 

You then went on to give your opinions (which you are certainly entitled to have) of alternative and complementary therapies.

However, I had not mentioned anything to do with alternative or complementary therapies anywhere in the entire thread.

Again I suspect that your post would give someone who hadn’t read it all a completely different impression.

You used words such as ... bullshit, nutters, conspiracy theories, Big Pharma etc in a post that started off with “Hi Dave” when I had not mentioned anything remotely like that in the thread.
That too could easily give a reader the idea that I am a nutter who is full of BS,  and that’s something that I find quite offensive. 

So perhaps you’d care to apologise.

 

Best wishes

Dave

 

[Patrick Turner]

3 hours ago, DaveK1200 said:

That too could easily give a reader the idea that I am a nutter who is full of BS,  and that’s something that I find quite offensive. 

So perhaps you’d care to apologise.

I am so sorry to cause offense, but not for one second did I set out to upset anyone.

 

Perhaps you could consider the nature of what happens in forums like this one, and although I replied to you, I addressed issues raised by yourself and also timbaker.

There may be many ppl reading both our postings and everyone else's, and its quite possible many readers just want to read, but don't want to contribute a post. 

 

Unfortunately, when I opened the page at https://radicalremission.com/  I found it to be presented in such a way which screamed at me "we are out to con you", and good looking Kelly Turner was 150% unconvincing. Good ideas don't need pages full of adverts. I just want the truth, the whole truth, and nothing but the truth and with supporting figures. There are many websites with a story about alternatives or whatever, but they often turn out to be platforms to advertise from. Often there are books and bottle of products to buy. I would dearly like to hear from someone with Pca who'd gone to "radicalrem" or similar, and had found the way to beat their Pca, and was willing to share the methodology with us all, and present evidence to support the claim. 

 

Between 2001 and about 2010 I spent an enormous amount of time at an old Usenet site rec.audio.tubes , now almost defunct but in 2003 there were 100 posts a day, and I'd often compose 20 replies with answers to questions, or to get informed about what I didn't know. But in 2001 the Internet had just become mainstream and many non scholars, idiots, psychopaths and deranged men who hadn't completed university, or had serious bi-polar conditions etc suddenly found a place where they could "socialize" without ever being forcibly removed. One reason I stayed so long was I developed immunity to insult, and wherever possible, I spoke to the technical issue, not to the man, and I didn't give a shit if someone made me look like a dickhead. I was insulted regularly and thoroughly for years by 3 individuals out of 100.

 

The majority listened and learned, and took the trouble to back up their opinions with facts and details; they knew how scholarly men discuss without using an axe.

 

Over a period of years, one of these enemies suddenly became an ally because I was able to easily explain in one post as big as this one why there was a negative feedback network based on electrostatic fields in triodes. Another seemed to go mad with his bipolar condition, and faded away, the other just gave up when another group he'd wrecked went out of existence real fast, aus.hi-fi. The bipolar guy knew more about electronics than everyone else put together, and I learnt from him, but I was the only fellow to tell the group when he was wrong, and then why, and that maybe hastened his final burn out with fits of rage lasting weeks. I got very used to the cut and thrust of arguments whenever men get talking in a group.

Other Usenet groups were 3,000% more toxic, like soc.men, or soc.women, where nearly all posts were glowing rivers of hate. I was silly to have ever thought it might be possible to meet socially nice ppl at these groups.      

 

Please do not assume you are within any of above person categories!

 

After about 2006, all the men who had been savaged by the tiny handful of psychopaths got so offended they all left. Not me. The offended then went to join little moderated chat groups where I found the discussion was almost content free, only about basics they could not understand, and they could not think scientifically. Nobody ever challenged each other. Throughout 2001 to 2012, I designed, built and earned an income by supplying very fussy men with audio gear. I always had at least 6 reasons why I did or said anything.

 

Here at this group, I probably will learn a lot, but I do have the tendency to want ppl to back up what they say. BTW, I have NO FEAR of using my own real world name. I have no fears of posting urls because since 2001, I've never had any computer troubles or a mob arriving at 2am wanting to burn down my house. I just don't much fear the world, because I live in a wonderful part of it, instead of say Mosul.  There's nothing worth hacking with my site, and I don't mind who rummages though all my emails; maybe they might learn something! I do question rather a lot more than some ppl might like. 

 

The PsMa Ga68 scan has frightened a lot of men who thought their Pca hadn't spread. I would like to be told why I am stupid for thinking that where Psa < 0.5, the PsMa  scan may not reveal as many mets as found when Psa = 5.0, ten times higher. I would say that where Psa was low, then PsMa would also be low but where ANY mets were found, there's bound to be others, maybe thousands of micro mets, and I assume that's my case where the last PsMa scan showed about 15 mets but there may be thousands more, and the worst of those may grow to laugh at the doctors and kill me. After I had 2 years of ADT 2010 to 2012, with EBRT at end 2010, Psa went down to 0.08. Maybe I have beaten it I thought. But no, after an ADT pause of 6 months, Psa rocketed back up to 8.0 in 2013 same as 2010 when docs opened me, then found they could not remove PG. So Psa gave me silly idea about my Pca. The beast was merely sleeping, and very slowly growing while asleep, and this is what happens with a lot of blokes who go on to be within the 28% of diagnosed men who die from Pca. 

 

IMHO, The ONLY evidence of a remission for me or anyone else from Pca would be if we had Psa fade down to zero and stay there for years - without any further medical interventions including ADT. 

There may be 50% of men diagnosed with Pca who have managed get successful RP, EBRT etc, no mets, and it seems like they were cured, different to remission where Pca gets on the march big time but then retreats to become nothing. We don't hear from the cured because they don't need to chat about Pca any more, and this group is for men with advanced Pca, ie, with many mets, and remission for any of us is highly unlikely. 

 

So for me, and many others the main challenge is to understand the enemy, and get a better idea about scans and other treatments and be prepared to live with it and accept that doctors, new treatments, alternatives, prayers, mediations, positive attitudes or family support will most likely never give a cure, and we must learn to live with it and die from it, and for me at least, the slow fade down seems inevitable, but its more tolerable than a wide variety of other more horrible exit modes.  

 

So far, since 2009, abiraterone is a new thing which may give me 2 years. It wasn't around in 2009. I don't know if the Docetaxel  is any better than what may have been used in 2009. Lu177 looks enticing, but results of it use have not led doctors to use it as primary treatment when tumor mass is very low and Gleason score is low. It does seem silly the System wants me to get worse before use of Lu177, but the reason is that Zytiga may cause Pca to actually halt, even slightly reduce, before it works out a way to defeat Zytiga. Then Lu177 might make sense, and I will have had 2 years of high quality of life without Lu177 side effects. 

 

Some might say because I wasn't positive, I got Pca. I don't see any evidence suggesting realistic thinking that includes awful possibilities causes the Pca to happen. Some might suggest Pca could be cured by focusing the mind on imagined workings of immune system cells, and willing them go into battle more bravely etc. I cannot believe it makes any difference.  

I do not get to have full control over much of what happens as I age. 

But I hope tomorrow is a nice day for a good cycle ride. 

Patrick Turner. 

 

[Admin]

This correspondence is now closed.

 

Convenor Jim Marshall will speak on some of these issues at the next round table (on Friday 24 November 2017).