i've just joined this group so will summarise my experiences. I have a very understanding oncologist who has been very supportive but also refers to me, not always in jest, as her "difficult one".
The reason is that I have rejected most of what is referred to as Standard Care here in the UK. I was diagnosed in December 15 with PSA of 16 and one visible met in a lymph node. I suspect that due to the limitations in resolution of the "standard" PET/CT scan (Choline) I was already advanced with multiple micro bone mets but we just couldn't see any. After doing a lot of research, including reading many published medical papers I rejected both radical prostatectomy and ADT - the former just did not work as far as I could tell from the evidence and carried horrid QOL consequences and the latter was also not a "therapy" as far as I could tell. The whole concept of chemical castration, which is what ADT is, seems bizarre to me. It's also based on research from the dawn of endocrinology so is more than 70 years old. There is now a lot of good quality research out there which tends to support the view that testosterone is not the villain in PCa, but that is a topic for another time.
I opted initially for proton beam therapy in Prague. The results were initially very encouraging but by spring 2016 PSA was rising again and scans showed a significant tumour in my arm and also possibly one in the skull. The latter was not unequivocal so I opted for EBRT to the arm. This did not work very well. Come spring 2017 PSA was on the up again so this time I arranged a Ga68 PSMA scan which showed multiple bone mets including one in the skull and still in my arm.
So in summer 2018 I visited Helsinki for 5 cycles of Lu177. This therapy was not available at all in the UK at that time (thanks to the "wonderful" NHS - not!). The results were spectacular. PSA fell from 80 to 0.78 and follow up Ga68 scan showed no remaining bone mets except for some trace uptake in the skull.
The latter appears to be the bastard of the piece for me. This year my PSA started to rise sharply again. Doubling time was about a month. This means that over a year my PSA would have grown by over 4000 times - if that is a proxy for lesion volume I would have had a tumour the size of my head in a year. I'm guessing this would not have been survivable.
So - again still with the support of my onco I have started a second round of Lu177 PSMA, now in Windsor in the UK. It's too early to know results but I will keep this group posted.
Throughout all this I have never had any other treatment. No ADT and no chemo. This is partly because I am not convinced they have any real therapeutic value at all, partly because neither my wife or I liked the prospective side effects and partly because I found some good data by the German pioneers of Lu177 PSMA that prior treatment with chemo, etc. produced worst outcomes.
I hope that my experience is some interest and value to the group. My best wishes to all of you and thanks for sharing your own experiences.
Written by
Notewell
To view profiles and participate in discussions please or .
Thanks for your detailed post. I know little about the Lu177 treatment that is getting many posts here. It is relatively new in the USA. Most men try it after the usual treatments that you skipped. Please continue to keep the forum updated, and best wishes!
Thank you for sharing your decision making. Decider #1 in our family is my husband, and he did opt for radiation paired with ADT, then Zytiga, and soon to get chemo. But part of me, his cancer sidekick, wonders hypothetically, "What's the outcome for men who don't or won't do this or that?" In a weird way, you're a guinea pig for those of us who have these thoughts. Interestingly, you and my husband are kind of in the same place, though he's five years since dx, not your four. (Did he get an extra "good" year due to ADT?")
He's got chemo coming up next. He hates ADT, though his short-lived Zytiga in addition to Lupron, didn't cause too many extra side effects. Throughout, he's lived what I call a "Lupron good" life--traveling, working, motorcycling, running, biking but all while feeling flu-like and often fatigued. The six-month break he had between Lupron and its resumption made him remember what he felt like before PCa slammed: healthy. But he had a scary fast doubling time while off Lupron, so he went back on it, then added Zytiga, which didn't work. Now chemo is looming. There's a part of me that registers this irony: he has to get a port embedded near his shoulder for chemo infusions (and already has a pacemaker near the other shoulder). This means poorer sleep, no running while the port is healing, i.e. losing two healing activities so he can be poisoned and miserable. But we're both compliant people, so chemo next it is.
Please keep the forum in the loop so we can see and hope for your good outcome. It isn't what most men here choose, but you're living an alternative approach, and it might help others to follow your outcome. Thanks so much for putting yourself out there.
The protocol on Lu177 I have received has varied. In Finland it was monthly with a dose of about 7.3MBq. I received 5 cycles. My PSA fell over 99% and most visible bone mets disappeared on follow up scan. In the UK the cycle seems to be 6 weekly with a dose of 7.8MBq. I have been told 4 cycles will be likely. I believe more are possible, but the impact on liver and kidney function need to be carefully monitored. I have blood tests fortnightly.
• While it is true that men who have had chemo do worse on Lu-177-PSMA, you incorrectly attribute the cause of that to the chemo. This is a logical fallacy known as "post hoc ergo propter hoc" (after this therefore because of this). A moment's reflection will lead you to understand that the reason that heavily pretreated men fare worse is not because they are heavily pretreated - they are heavily pretreated because their cancer is further progressed. In general, men who get therapy after more progression fare worse on every therapy compared to men who get therapy earlier.
• Another error in logic is the conclusion you drew about testosterone. Morgentaler's theory of testosterone saturation is gaining growing acceptance. Saturation theory says that above a certain low level of testosterone (roughly 150 ng/dl), all androgen receptors are fully saturated, and adding more testosterone will have no effect: a sopping wet sponge gets no wetter if you add water. However, the converse is not true. It has been found that removing all testosterone certainly does slow progression of prostate cancer. Reducing testosterone below 20 ng/dl is optimal at slowing progression..
• ADT improves the outcomes of radiation therapy, and Lu-177-PSMA is radiation therapy. All published data on Lu-177-PSMA is on men who were also taking ADT. In fact, a recent study showed that using ADT to get T levels below 20 ng/dl helps radiation work better than if T levels are in the 20-49 ng/dl range.
It is a very personal decision as to which therapies one is too fearful to undertake; it is important, however, to not let confirmation bias blind one to the actual facts.
Yes, it was a response, a very condescending one that was unwarranted. A better one would have presented a factual argument without pointing out someone's error or flawed logic.
Some have a penchant or need to point out the flaws of others in order to build themselves up. I am sure that if I am wrong on this, my errors of logic will be pointed out.
I, for one, felt the original post to be informative and of value. I would very much like to keep abreast of Notewell and hopefully he will post again.
Logic is logic. I don't think TA was condescending at all. It's difficult decision making all around. I personally want to know where I may be making a mistake and appreciate elucidation of my errors. I may or may not accept the analysis, but I'm not going to complain about the way someone points out my mistakes. Kudos to TA.
The original post does have value. It's a damned interesting approach. Not one I would go with, but it's good that people are out there trying things beyond standard of care.
PS I did say that discussion on ADT was really for another time. But since you mention it: it has also been found that low levels of testosterone are correlated with higher levels of PCa and also there is no good evidence that even supra normal levels of testosterone lead to accelerated disease progression. There is also good science that shows how, at a cellular level testosterone can be converted from estradiol which may explain why eventually PCa develops "castrate" resistance, i.e. ADT has no further effect.
There is some evidence that suggests imbalances between naturally occurring levels of testosterone and oestrogen in males is a causative factor in PCa development. This might explain why, at a population level, there is reliable evidence that shows men with lower estradiol to testosterone ratios have lower incidence of prostate cancer.
It is a very personal decision for me which therapies I choose to undertake. I don't know which therapies you are too fearful to refuse but I agree it is important not to let one's confirmation bias blind one to actual facts.
It is true that men with chronically hypogonadal, have a higher incidence of prostate cancer. But hypogonadal does not mean castrate, and the effect of low testosterone over many decades is different from castrate levels used as a therapy. I guess you didn't follow what I wrote about saturation theory. I suggest you re-read it, or look at what Abe Morgentaler has written about it. Saying that more testosterone when one already has supra-castrate amounts is quite different from saying castrate levels have no benefit. It clearly does.
Castration resistance is a complex phenomenon that has multiple causes. It is not the conversion of estrogen to testosterone that is acknowledged as one of them. Estrogen suppresses production of testosterone. Estrogen has been given as a treatment for prostate cancer. In fact, it was the first medicine ever used against PC. Transdermal estrogen is being tested now.
By your post, you took your decision out of the "intensely personal" realm and made it public. If you choose to keep your intensely personal decisions to yourself, that is certainly your prerogative. When you tout your lack of understanding of the science as "evidence," I think you should expect correction.
I read these boards to learn of others' experience. These encourage me to do my own research. I post on these boards so that others can know of my experience. I hope others are encouraged to do their own research. I don't tout my knowledge or experience as superior.
I have found that inevitably there will be someone who takes exception to my choices and the information I have found to be of use. Equally inevitably that person seems to want to prove me wrong and when that doesn't work too well, they resort to abuse.
In particular I do not make value judgements about people I have never met, do not know and know nothing about.
When you tout your value judgements as scientific "correction" I think you deserve to be ignored.
PS Have just read a great paper that demonstrates a mechanism for why ADT leads to CR PCa. Great evidence. You might want to try it.
PPS I have never claimed that evidence is proof. As an expert in science you will of course know that these are not the same thing.
I am always open to new studies published in peer-reviewed journals. If you have a link, post it. What I am pointing out is that what you have written so far are errors in logic - not value judgments. You drew unsupportable conclusions from available facts, probably to your own harm. As I said, what you want to do personally is your business, when you make it public you should expect others to react.
You brave to not take conventional treatments. I'm quite advanced and put my faith in my Oncologist because a bad judgment on my part is risky.
He turned it around for me (PSA 1386, Mets to every bone including Marrow invasion in Femurs, Lymph nodes affected). Chemo and ADT (Diphereline) has given me great results, reduction in Mets and PSA 0.38. When this stops working I'm willing to try alternatives but I feel I did the right thing for ME.
Tall-Allen great post, you explain stuff really well, always enjoy reading what you have to say on this Forum.
Notewell I'm from UK but living in Estonia last 10 years, I'm very pleased with the quality of my treatment so far, I feel faster and better than NHS
It's fair to say that I don't put faith in my oncologist because she is unusually honest in admitting that so very little is known. However I ask for her advice and take it into serious consideration. Thus far she has agreed with and supported my decision making.
My Oncologist has been very honest about my prognosis, I guess some don't want to know and wont ask but I did, I dealt with my situation better. The impression I get is that he is smart and young enough to be open to all treatment options and I trust his judgement. He has done an excellent job so far.
You feel like you did the right thing for you. That is what is important.
Best wishes.
So you don't like the side effects of ADT or chemo so you disparage the utility of those treatments. Most urologists and oncologists would beg to differ. To each his own. Good luck.
It is not true at all that I disparage the utility of ADT and chemo because of the side effects.
I have doubts about the utility of ADT, that are based on my own conclusions, on the evidence. The QOL adverse effects of both ADT and chemo are matters of record.
Unfortunately I am unable to survey a large number of oncologists before I reach my decisions. I do however discuss them in depth with my own oncologist and listen carefully to her opinions and recommendations. In particular I asked her whether I would be unwise to favour a therapy that appeared to offer me better outcomes and better QOL over other options. She agreed with me that this was not an irrational choice.
I may yet choose to use ADT or chemo as treatment options. I have certainly not ruled either of these out indefinitely.
I stress again that I can only report on my own decisions and experiences. I make no value judgements at all about what other people choose to do.
Some time ago it was "acknowledged" that the earth was flat. It took quite a long time and quite a lot of evidence for this "acknowledged science" to be challenged. Some people have difficulty with the idea even now.
I have been told by more than one very senior medical practitioner that the idea we have that medicine is science-based is a myth. One (a FRCS in the UK) said: "Most medicine is based on dogma". The other, the medical director of a large UK NHS trust, observed that: "Medicine is a profession that is based on conjecture proven by death"
These are not my opinions, but I assume these guys have some insight. I find it of interest whenever someone starts lecturing me about the "acknowledged science" of medicine.
If a FRCS in the UK said, "Most medicine is based on dogma", I think that's misleading. And, while I'm not a senior medical practitioner, I do believe that medicine is generally science based. Consider how new medical treatments and pharmaceuticals are developed, tested, approved, and adopted by physicians. Rigid-protocol double-blind tests are lengthy and expensive. Results publications must follow strict mathematical/statistical guidelines, and there is of course a peer review process. Perhaps you can say that this is just updating the dogma. But can you opine that there's no science involved?
If I can stray even farther: A not-very-good (IMO) book is, "How Doctors Think", by oncologist Jerome Groopman. It explains how, when doctors make a diagnosis, they can apply a statistics-based algorithm, or they can apply their experience-based gut feel. In a much-better (IMO) book, "Thinking Fast and Slow", Daniel Kahneman persuasively demonstrates that boring statistics rather than gut feel almost always results in superior decisions. So maybe I'm seeking to explain why I don't put much stock in glib statements, even if they are experts' utterances.
You thinking something is misleading is your opinion of course.
I didn't opine anything - I passed on what had been said to me by some people who may know about these things.
Rigid protocol double blind trials are effective as long as a hypotheses is effectively tested by the design of the trial. The problem with many trials is that they are funded by drug companies who are not trying to falsify a hypothesis - they are trying to get their products approved for sale. I don't criticise them for this - they are obliged to do this by the regulators and the regulators have tried to put in place processes which avoid some of the disasters of the past; thalidomide would be an example.
At the same time the output metrics of many such trials are not completely unambiguous. The standard use (or misuse) of statistical measures may be unavoidable but does not always represent clear and good science.
The other point is that the comparator used for double blind trials is not always completely or at all neutral, which it will be if a placebo is compared with a drug candidate. Take blood letting as an example. When it was compared with not blood letting, the presumed (dogma based) benefits of blood letting were shown to be bogus. Now imagine a double blind trial of "standard of care", i.e. blood letting compared with "standard of care" plus some other therapy. The deleterious effects of the blood letting could mask the beneficial effects of the other therapy to such as extent that the trial conclusion is to continue with blood letting - because it is the standard of care. So dogma is "proved" by bad science.
Thinking Fast and Slow is one of my favorite books too. If I am hypersensitive to confirmation bias (my own and others') it is because of that book. My advice to newly diagnosed patients is always - slow it down.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PSA rising - When to get a PSMA PET scan?
Choose Capivasertib or 177Lu-PSMA-617 clinical trial or stick with ADT + radiation?
update on husbands radiation to pelvic mets
Is it reasonable to pursue ultrasensitive PSA test that is more precise than undetectable at <0.05?
Lu177 expeiences in Germany
