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My Personal Manifesto on Treatment Availability fo Well Informed Patients

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Posted 5/19/2021 4:30 PM (GMT 0)
My General Views on Treatment

1. Dosing until failure is a flawed strategy contrary to principles of evolution which have shown considerable resilience as a mode of analysis to describe phenomena far afield from biology and in so doing has established itself as an important fundamental ubiquitous principle. It's deep.

2. Whatever you don't kill you confer a survival advantage on. Continuing to hammer the cancer once the medication has demonstrated considerable effectiveness is a good strategy for breeding resistant strains.

3. Cancer always adapts to it's environment but can not anticipate change. Therefore the environment should be changed before the cancer adapts. I was on Abi for 8 months, discontinued before resistance to do BAT, then hung around waiting to become resistant and am now having a spectacular response to Enzo. Dramatically better than the current Abi/BAT/Enzo Trials.

4. I'm happy with the "adaptive" strategy I've been doing with Enzo based on advice from Jinsong Zhang at the Moffitt Cancer Center in Tampa. He's published a number Articles that I found persuasive. The Head of the Department, Robert Gatenby, has been publishing articles on this subject for 15 years but has generally been ignored I honestly think because he uses mathematics. The concept of "controlling" the cancer which he has been preaching, along with the concept of "Mathematical Oncology" appears to be one of the "new" things that have surfaced in Oncology. Gatenby has seven Applied Mathematicians in his research Group and is way ahead of others pursuing these ideas.

I very much do appreciate these are just models that undoubtedly implictly include simplified parameters and ideally would have more underlying data, but if the Math is clearly pointing in one direction I'm going with it. I realize it might be all wrong. But every treatment is a crap shoot to a certain extent. This one has more risk because there's less data, but no more risk than many Clinical Trials.

5. The much vauted "non-inferiority" Trial [contniuous ADT not inferior to intermittent] is wildly overvalued. It switched on/off based on time intervals as opposed to what was happening with the patient. That's like the farmers turning pesticide on every other month regardless of the volume of pests. They've figured out that's not how you do it. It's not an "adaptive" approach. It's not "adapting" to anything. It's mindlessly metronomic.

6. You seem to have a decided preference for Clinical Trials if you're going to cross the "Standard Medical Practice" line. I fail to see the difference between my risk of doing a real Clinical Trial vs. doing something that you would do in a Clinical Trial. Sure, Trials advance medical knowledge and improve public health on a macro level. But I'm a guy just trying to stay alive and every good idea can't get to be a Clinical Trial. I also think some Clinical Trials, particularly Phase I Trials impose more risk than anything we've considered. Yet they're done, and as a lawyer I don't know how truly "well informed" the people are who sign these "informed consent" documents permitting you to experiment on them (Informed Consent being the legal basis for being able to experiment).

As a very informed patient I see no reason why I should not have available a treatment that you would approve my being in a Clincal Trial for (assuming, of course, you can legally prescribe the medication).
Posted 5/19/2021 7:53 PM (GMT 0)
All's well and good ANB...me...I'm kinda old fashion and go with body and soul...good punch when I need to...quick defense mechanics...both determined by my self...as the big guy and I have been together a long time now and is kinda busy...so's I got power of attorney for life now...yeh...very forgiving...hard to find these days....lucky I guess...
Posted 5/20/2021 12:43 AM (GMT 0)
I have to comment that, in a decade of participating in probably twenty prostate cancer forums, in-person groups, Facebook groups, and now several regular Zoom sessions, that this is the first and only time I have heard someone describe themselves as “a very informed patient”. Whew! I know men who have written many articles over many years who would not assume such a status.
Posted 5/20/2021 1:18 AM (GMT 0)
While you the patient are willing to experimental treatments outside Clinical Trials, many physicians aren’t because they aren’t supposed to reckless make your general health worse or conduct their own experiments. Clinical trials are more structured, regulated, and have a defined outcome,e measure or goal.
Posted 5/21/2021 4:58 PM (GMT 0)
To logoslidat: To quote Dizzy Dean, the last National League pitcher to win 30 games in one season,
"It ain't braggin if you can do it." I'm not bragging; just stating a fact. I'm not saying I'm the MOST Informed Patient ever, but having read Medical Journals for over 3,000 hours and regularly picking the brains of 5 or 6 oncologists, all of whom acknowledge that I am very well informed, it's an accurate description.

Here's some examples: I wanted Abiraterone or Enzalutamide when I was csatrate sensitive. It hadn't yet been approved for that, simply because all trials had been on castrate resistant patients. Aware of the uncertainty I thought earlier would be better. It turns out I was right.

With great effort I managed to get BAT two years ago when it was quite experimental. I did that after an 80 minute conversation with a noted oncologist who could see that I fully understood the risks. That treatment is now becoming mainstream.

I had one metastasis radiated three years ago despite advice that since "I had more than three" there was no point. Latest data inicates that was a good decision.

I purposely avoided becoming resistant to Abi. Abi and Enzo are cross resistant. In the past 300+ days I've been on Enzo for a grand total of 36 days and my PSA is currently 1.1 [and could be lower but one oncologist I speak with has advised that it's not good to take it all the way down because then you're killing everything the is NOT resistant. In the absence of medication the non resistant strains outcompete the resistant ones in the fight for survival with limited resources and space BECAUSE the resistant ones have incurred metabolic costs to maintain resistance. ] This is an oncologists advice but he's in the minority. But his logic convinced me.

Not every good idea gets to be a Clinical Trial and, even if it does, I'll be dead by the time the trial is over. I'm the one with all the chips on the table. What I'm saying is that in the face of uncertainty I know enough to make an informed decision of potential risk/reward. Every treatment is a crap shoot. The odds are a bit more wobbly if you're outside a completed Phase III trial. All I'm saying is that if I am able to intelligently understand the risks and potential rewards, and a treatment is legal, an oncologist should CONSIDER giving it to me. Most ONCs just knee jerk no mostly, I believe out of concerns for liability. I'e spent a alot of time finding ONCs who had the confidence to accommodate my approach.

It's important because my point is: Clinical Trials are experiments of people. The only justification for that is the patient has given "informed consent". They may be structured, regulated and have a defined outcome but the ARE experimenting on people, often in ways that involve more risk to the patient than I expose myself to. There was an Abi/Xofigo study some years ago thatwas abruptly terminated because the Abi/Xofigo group was dying faster than the control. These are people, not statistics. Dr's do take chances in the pursuit of knowledge. I want them to just as open to that in the pursuit of keeping me alive.
Posted 5/21/2021 6:33 PM (GMT 0)
At least this manifesto is shorter than the Unibombers.
Posted 5/21/2021 8:21 PM (GMT 0)
Hey ANB...It ain't me raggen on ya...check out the dem udder guys awwreddy...I was just bamboozelen ya...I totally agree about the braggen schtick...true as can be....

On a side note...how come its always baseball players that have the best lines...Dizzy Dean (played by Dan Dailey in the movies back in the day)Satchel Paige...Yogi Bear and BooBoo... a bunch of em.....no man you cool... you cool...when your good at something...you know it...the udders...just be jealous...to whom I say...: no be jealous...be zealous...

Hey Peester...back in the WC
Posted 5/22/2021 1:35 AM (GMT 0)

Peester said...
At least this manifesto is shorter than the Unibombers.

Good one. I like it! Humor is good for your soul -- and your PC.
Posted 5/22/2021 1:42 AM (GMT 0)

logoslidat said...
Hey ANB...It ain't me raggen on ya...check out the dem udder guys awwreddy...I was just bamboozelen ya...I totally agree about the braggen schtick...true as can be....

On a side note...how come its always baseball players that have the best lines...Dizzy Dean (played by Dan Dailey in the movies back in the day)Satchel Paige...Yogi Bear and BooBoo... a bunch of em.....no man you cool... you cool...when your good at something...you know it...the udders...just be jealous...to whom I say...: no be jealous...be zealous...

Hey Peester...back in the WC

Sorry, I meant to direct it to ASAdvocate.

And remember . . . "If you come to a fork in the road, take it."
Posted 5/22/2021 4:35 PM (GMT 0)
ANB:

Glad you are so sure.

I've learned that those with a long list of specific certitudes/broad brush approach are often wrong.

I've seen nostrums come and go.

I do ascribe to a few general adages regarding PC:

1) After you calm down, try and do some reading/research.

2) Forums are great, but spend time there to weed out those with a single agenda/ax to grind and be aware that most seem to favor whatever tx. they got.

3) Try and seek out the best practitioners you can as best you can given your personal circumstances. I prefer those from the top 10% of their class rather than the opposite. Related to this:

4) One specific: get a 2nd opinion on your biopsy result (Jon Epstein at Hopkins). So many decisions/mental gyrations are predicated on a G--score, so it is really important to get it right. I understand that 30% get changed.

Mel
Posted 5/22/2021 7:03 PM (GMT 0)
Respectfully (and I mean that) you have misunderstood me. Likely my rather terse writing style (I was a lawyer) has given that impression.

1. I am certain of nothing. It's a crap shoot and I'm playing the odds. I would just like cooperation from the medical profession in helping me do that. That means using all available information. With most Docs is if hasn't been through a Phase III trial for your stage of PC it doesn't exist. That just strikes me as wrong since you're disregarding information.

2. I am quite calm. And I've done far more that "read a little". I've been at this for 4-1/2 years, am in excellent condition given my starting point and I find having an informed active involvement in my treatment enables me to keep a positive "fight it" attitude which, I believe, contributes to survival. I've seen some ONCs notes and they include things like [real quote] "he knows a lot". Have I discovered some "truth"? -- by no means! I have certain views that have gelled and my purpose was merely to share them, as many people here truly are very well informed. I miss Tall Allen, who for example knows far more than me.

3. I have no axe to grind. This is what I've come up with for me based on ALOT of reading and consultations with some of the most eminent practitioners in the field. There are a number in NYC where I live and I have travelled to see others. I would say they are all at least in the top 5% if not 1% of oncologists in the field, affiliated with major medical institutions, regularly pulished authors and noted researchers. I've done my Homework.

4. This was not a prescription for others. I merely wanted to share what I considered my personal well thought out "bottom line" after over four years with others for their consideration, understanding that we all face unertainty. It only applies to very well informed patients, as you need to be in a position to make decisions based on advice and risk assessments from ONCs willing to give them. Finding those ONCs has been difficult, which has been a source of frustration to me. I did not mean to put myself in some rarefied category. Some folks have the inclination to really dig in and others don't. My conclusions are for the former group, though there's nothing wrong with just living your life and leaving it competent medical care. I fortunately happen to find reading about this stuff to be intellectually engaging.

5. I'm gathering from some of the comments that my thread came off as arrogant. I certainly did not mean it that way. It was my way of conveying: "guys, I've worked really hard to understand what I have and what options are available to me, and am fully aware that I am not an ONC. But with so much change happening the best treatment is a crap shoot and ideally I'd like 'ONCs best guess', which may included treatments not yet in the 'Phase III Book' " and I have had considerable difficulty getting that. But I have found some ONCs willing to do that, usually only after they have conversed with me sufficiently to satisfy themselves that I am well informed. The Dr. who gave me BAT spoke with me for 80 minutes before telling me he would do it. But when you get ONCs to guess thye don' all guess the same way. But hearing their guesses and reaons iis enormously valuable information that I can't get from Medical Journals. So I need to choose which "guess" I'm going to go with. That's the best I can do and I'm personally comfortable that at least I am giving full effort in my fight to stay alive.

6. The one thing I am dogmatic about is my firm belief that dosing until failure is a flawed strategy. Evolution is a powerful theory which I have seen applied to a very broad variety of phenomena. It's really as simple as this: if you kill everything that's NOT resistant to the drug, what do you have left?, or "if you know you're not going to achieve a full kill why do you continue to hammer the cancer when the PSA is, say, undetectable?" I may not be an ONC but there's nothing so special about cancer that makes it somehow exempt from one of the most fundamental principles of biology

7 And I don't know why no one (ONCs included) seem to take much notice that (i) we know Abi and Enzo are cross resistant; (ii) they're now doing trials on Abi to failure -- followed by BAT to resensitive the androgen receptors -- to Enzo. They're getting some positive results but nothing terribly impressive. I was on ABi NOT until failure (and achieved an undetectable PSA for four months), followed by BAT and after castrate resistant Enzo took my PSA down 90% in 24 days. I note that to the ONCs I see and no one seems to have picked up on it. Maybe t'ts just me, but it seems significant.

7. None of the ideas I presented are original with me. They are culled from experts, some of whom are not in the mainstream but whose writings I have found persuasive. See "an Evolutionary Arpproach to the Treatment of mCRPC"
Posted 5/22/2021 9:37 PM (GMT 0)
ANB:

I was merely sharing some of my own GENERAL adages. I was not sending arrows at you when I was talking about an ax to grind. For example, a newbie might find a poster to be helpful and very knowledgeable say about radiation. But you stick around and see that for this poster ONLY radiation matters. He might do a bit of lip service to surgery but every post involving a tx. decision is cleverly transformed into the wonders of radiation. Or... vice versa. I know some posters that just seeing their name means a long ponderous post on the same topic again and again.

'nuff said.

Mel
Posted 5/23/2021 7:34 PM (GMT 0)
ANB,
Not sure I entirely understand your first post. Though maybe not as dedicated to research as you have been, I've been a PCa patient for 20 years and have read a pretty large pile of papers along the way about primary and later treatment of PCa. As an aside not directly relevant to my own condition, in a past life I edited (for language, syntax, etc.) several hundred submissions to medical journals written in English by non-native English speakers. So I'm no medical expert on any subject but I've got a reasonably good grasp of distinguishing signal from noise when I read papers that
do apply to me.

I agree with the Darwinian logic that the cells we don't kill will over time produce ever more cells we can't kill - at least with the same medication. What I don't follow - and forgive me, maybe you are talking about a particular trial - is the notion that intermittent dosing is done on a clockwork schedule rather than based on a patient's response.

My first round of ADT after failed primary surgery and later failed SRT, was done on calendar time because that was as part of a clinical trial. I was randomized into the control arm that got standard treatment - monthly Degarelix shots for a year. But the larger purpose of the trial was to see if patients who were in the other two arms - Degarelix plus Apalutamide - or Degarelix, Apalutamide, and Abiterone Acetate fared better or worse over time.The goal of this trial is to determine if using these other newer medications early in treatment of castrate sensitive patients conveys benefit. Maybe results will support earlier use of other treatments. The jury is still out.

But that said, my oncologist told me that given my excellent response to the Degarelix-only regimen he'd have taken me off ADT after 5 or 6 months when my PSA had become undetectable had I opted to leave the trial. Since then I was on nearly two years of break from ADT and have now completed a second round. This time only 4 months because the ADT has again pushed my PSA down to undetectable.

Maybe I'm missing something. Is this management of ADT based on patient's response unusual? Do other oncologists keep their patients on ADT based only on calendar time?
Jim
Posted 5/23/2021 8:38 PM (GMT 0)
Bah Humbug gents... nix...nix..nil on the mea culpa's and the nice nice...I nailed it and the inner core is correctamundo... thats my story and I'm sticken to it....PS this is a great thread...and would be a lot of fun if the collars were starchless...
Posted 5/24/2021 3:50 PM (GMT 0)
Thank you Bohemond. I will respond with a thoughtful reply when I get a few moments. As for "starchy" I don't get it -- I think we're speaking our minds but doing so in a polite respectful manner.
Posted 5/24/2021 4:31 PM (GMT 0)
A shoutout to Bohemond. When I was living abroad, I, too, had a sideline of translating or editing Italian scientific papers for (re)submission to journals publishing in English -- a lot of industrial chemistry, but also many other fields. I'm sure we could swap crazy stories for hours.

Djin

Post Edited (DjinTonic) : 5/24/2021 10:43:44 AM (GMT-6)

Posted 5/25/2021 7:13 PM (GMT 0)
Djin,
Small world. My wife and I had a business in the 90s researching, writing , illustrating newsletters (we hired contract illustrators) and laying out several monthly newsletters under a contract with a school of veterinary medicine and a direct mail marketing company. The newsletters were sold to popular subscribers - dog owners, horse owners, etc. Along the way we picked up other gigs - editing conference proceedings, reports etc. for a school of human medicine,research foundations, etc. Along the way, someone put us in touch with a Korean medical school to edit journal submissions written in English (some in English-English, some in American English) by their doctors and researchers. It was fun while it lasted - we rented office space a half mile from our house and hired a small staff. By about 2000 or so the internet squeezed us out of business as the market for paying newsletter subscribers began to decline as the internet grew and the idea of actually paying writers grew increasingly alien. I went back to a real-world corporate job for the last 10 years of my working life - with a decent paycheck, health insurance, 401k etc. and soul-crushing office politics and my wife continued working free-lance from home.
Jim
Posted 5/28/2021 3:46 AM (GMT 0)
Well, Djin and Bohemon: You were better prepared than I was at the start of the journey. I had studied science in college and followed biology and physics as a lay person for decades. As soon as I was diagnosed I started reading and right before I was about to start chemo I found this NIH Phase II Clinical Trial "Docetaxel and Prostvac in Metastatic Castrate Sensitive PC"
This was quite fortunate since there very few Trials for the castrate senstive group. Pharmaceuticals are being developed rapidly and the Companies want to get their their product approved for some use, so if you want to show OS improvement start with the sickest people
So my first year, 2017, was all the NIH Trial; I couldn't use other meds. But I continued of reading Medical Journals approximately15 hours a week. When I went to NIH for each of my 13 Treatments I would spend 5-10 minutes quizzing Ravi Madan, the Princiapal Investigator. Should I have Xofigo after the Study? And I would quiz my own Oncologist. I discovered that medical professionals were very careful about even talking about new medications at the time approved for mCRPC
Fortunately for me I found the science quite interesting and I have continued reading at the same pace, now for over four years, Also, I have developed a relationship with several oncologists who are willing to be aggressive. I see them around once every six months. We discuss "what's out there?" "what out of the box ideas do you have? No treatment is undertaken without approval of my Main ONC. He's ok with this and I have gotten several treatments prescribed by other ONCs.
My Head ONC is highly respected in that Community, but he prefers to limit his practice to Standard Medical Practice and reserves going beyond that to Clinical Trials.
So, after over four years of seeing and quizzing ONCs and reading 15 hours a week I thought that I was a "Very Well Informed Patient".
Current Standard Medical Practice ("SMP") gives meds at MTD (Maximum Tolerable Dose) until failure, i.e. the cancer becomes resistant.
Robert Gatenby at Moffitt Cancer Center has been writing for quite a while about Adaptive Therapy vs. MTD until failure.
I think the difference between your care and mine was your cancer wasn't as advanced as mine. For those who are not as advanced I understand it is common practice to give "drug Holidays". My first meeting with the Dr. at NIH he told me I would be on Lupron "the rest of my life". Dosing until failure is the norm in cancer treatment. Just look at all the Trials
If you mention "adaptive therapy", as I have, ONCs invariably reply with the so-called "NonInferiority Trial". https://www.nejm.org/doi/full/10.1056/NEJMoa1212299
After 9-1/2 years the results of Continuous vs. Intermittent therapy found intermittent "not inferior" to continuous. The huge probelm with this, as I see it, was that the on/off switch for the med was based on a calendar. That's not adaptive. They're not "adapting" to anything. They're applying a Metronomic method without taking into account what is going on with the patient.
Adaptive therapy watches your PSA and if a drug is successfully applied it is maintained but not until the PSA is undetectable. Once the PSA has been reduced to some predetermined level the medication is withdrawn. Then when the PSA rises to it's former high point the medication is reapplied, again to some predetermined point but not 0.
Farmers learned this. No matter how strong the pesticide, resistance always developed. So they started killing the pests until they were at a tolerable level and then stop. When their growth approched intolerable levels the pesticide is reapplied. The calendar method is like the farmers applying the pesticide every other week without regard to the level of pests
You appear to effectively be getting adaptive therapy since, apart from the trial, your on/off is determined based on what's going on with you, not an arbitrary calendar on/off.
Gatenby goes further and says you do not want to kill all the non-resistant cells because, in the absence of medication, the non-resistant cells outcompete the resistant cells for limited resources putting evolutionary pressure on the resistant cells. The reasoning is that the Non-resistant cells are more evolutionarily fit because the resistant cells have incurred significant metabolic cost in maintaining the resistance mechansism.
But as I said, I think we're looking at this from different perspectives. The treatment stategy for metastatic cancer is MTD until failure. You can see it all over. Look at the provsions of pretty much any trial. We give drug X and measure time to failure. Or, better, we give you drug 1 (say Abiraterone) until failure (why wait for failure?). Enzalutamide is cross resistant with Abi. So after Abi resistance apply BAT (bipolar androgen therapy -- alternating testoserone) to resensitize the androgen receptors so that patient will respond to Enzo. They're getting some positive results, but nothing impressive.
I was on Abi NOT until failure, then had BAT (it just worked out that way, I wanted BAT and when I got it I was taken off Abi). I've now moved to Enzo and in the past 300 days I've been on Enzo all of 36 days. The first time my PSA went from 2.0 to 0.2 in 24 days. Gatenby advised don't let it go that far down next time. I waited for PSA to exceed 2.0. Then it happened (after 8 months) and PSA doubled in three weeks to 3.3. On Enzo 12 days. PSA = 1.1. I don't see any results like that from these trials.
To a large extent the timing of my treatments was a combination of pursuing cutting edge stuff and a fair measure of luck that things ended up getting done in the right order (Enzo first followed by Abi doesn't work as well in the trials as Abi first/BAT/Enzo). I ended up in the correct order by luck.
Posted 5/28/2021 3:11 PM (GMT 0)
ANB, I am guessing your research has acquainted you with prostate cancer medical oncologists Dr. Robert Leibowitz and Dr. Snuffy Myers. Leibowitz pioneered and popularized the Total ADT or Triple ADT that blocked gonadal testosterone, blocked DHT and blocked the cancer from receiving the T, three decades ago. Myers was a pioneer in both intermittent ADT and changing combinations and sequences of various chemotherapeutic drugs. He did this not on a calendar basis, but in response to the variations of PSA, scan evidence and such. This was the adaptive approach that you document. More currently we see doctors like Oliver Sartor and Eugene Kwan employing similar approaches to stay ahead of the cancer and provide, for many, a longer more durable remission.
Posted 5/28/2021 4:43 PM (GMT 0)
To be perfectly honest, I did not see Leibowitz or Myers work. They were ahead of their time and on the right track IMHO. I'm aware of Eugene Kwon. I've been planning on trying to get a consult with him.

William Oh is now doing a "cycling" trial, though on a calendar basis (which I call "metronomic" not "adaptive") I'm speculating, but calendar basis might be the only practical way to make the treatment concept feasible enough to be included in SMP. Any Dr. anywhere can do it. Not every patient has access to dianostic testing that would permit individual tailoring. Just a guess.

If I'm right then it's unfortunate that treatments peronsalized to the individual are simply not "SMP". I'm in the fortunate position of having Medigap and Health Insurance from my former employer, I live in NYC and can take a short walk to the the local Quest Lab and have my PSA tested. I caught the turn to castrate resistance very quickly and my PSA max was 2.0

It just seems intuitivley compelling to me that if a treatment strategy can be tailored to metrics from the patient youmust be able to do better.

This is what Gatenby ahd Zhang are doing at Moffitt. Over 15 years ago Gatenby took some established mathematics analyzing Population dynamics in an envoronment with competing species and applied it to PC. I thought it was brilliant. His colleagues literally laughed him out of the place. He got a one page rejection of an Article from a British Journal "Mathematics has no place in Cancer Research". He's been told "cancer is too complicated for mathematics" "mathematics are for those too lazy to do Clinical Trials"

Mathematics was my passion and for a time I thought my future careeer was in Academia. "Pure Mathematics". Unlike other areas where new discoveries modify older ideas Math never goes backwards. It is the product of millenia of work of some of the finest minds ever to exist: Euler, Archimedes, Newton, Gauss. As Newton said, paraphrasing: if I have seen further than others it is because I stood on the shoulders of giants.

Mathematics is enormously powerful and history is replete with examples of people ignoring the math (Einstein who (i) didn't believe his own equations that indicated an expanding universe and added a "fudge factor" to compensate, a mistake he later called the greatest of his carrer; (ii) no one believed that black holes actually existed though the math pointed in that directionl; it was dismissed as a mathematical singularity.

So, I do not think mathematics can include every conceivable variable and precisely predict concer progression. But I do believe that if you include sufficient known variables (PSA, radiographic progression) coupled with reaonable assumptions, e.g. in the absence of medication the non-resistant population is more fit that the resistant (which incur metabolic cost) and create a model with the use of powerful mathematical tools and if the result points clearly in one direction then that's the direction I'm going in. Gatenby has seven Applied Mathematicians in him department.

Gatenby has been preaching to "control" the cancer, don't try to eliminate it , for over 15 years. I just picked up a Newsletter from the Santa Fe Institute, which I have been involved with, reporting on the Annual "Darwin Lecture" at a prestigious place in France. The excerpt from the 80 minute talk said "What our new rearch is showing is that conventional cancer treatments have tended to select for chemo-resistant subpopulations . . . What our new research is showing is that managing these chemo-resistant subpopulations rather than trying to eradicate them, we can use what amounts to Darwinian processes to lengthen the life of those afflicted by late stage and difficult to treat cancers." Welcome to the world of evolution, which as been applied successfully widely applied to the point that I consider it "Fundamental" or "Foundational". I forgot who said it but "nothing in biology makes any sense in the absence evolution"

When I met with Gatenby I commented: "it's odd, I read a lot, I don't know why it took me so long to find your Articles." He smiled and replied "that's because I'm rarely cited" Eminent oncologists who are writing on this subject, when I asked "are you familiar with the work of Robert Gatenby and Jinson Zhang" have said "no", notwithstanding that some of their published articles should have cited the earlier work.

Check Gatenby out. He's quite a prolific author. His colleague , Jinsong Zhang, has also written some very interesting articles.

I started noticing Announcements from some major cancer centers starting "Mathematical Oncology" programs (noted it aournd 2017).

Gatenby does not prescribe my treatment but I asked if he would advise me on the on/off timing of Enzalutamide. My main ONC accepts this but maintains that continuouse dosing is better. Well, after 300 days I've been on Enzo for 36 and off for 260+. That's a lot of medication I didn't take, a lot of side effects I didn't have and most important a lot of time when there was no evolutionary pressure on the cancer to develop resistance. It will eventually become resistant, but I believe it will take longer and I hope that I can switch to something else before I go resistant. I like this cycling idea.

One other note: Gatemby points to Game Theory, as established branch of mathematics, which includes analysis of so-called Leader/Follower games. Follower always eventually adapts to current circumstances but can not anticipate change. Leader has the power to change the circumstances. The ONC is the Leader and his optimal strategy is to change circumstances. It doesn't mena he will win, but it is his optimal strategy. It makes sense, maintaining the "initiative" is very important in Tennis, Chess and many other sports and activities
Posted 5/28/2021 4:51 PM (GMT 0)

ASAdvocate said...
I have to comment that, in a decade of participating in probably twenty prostate cancer forums, in-person groups, Facebook groups, and now several regular Zoom sessions, that this is the first and only time I have heard someone describe themselves as “a very informed patient”. Whew! I know men who have written many articles over many years who would not assume such a status.

Please take a look at the balance of the thread and let me know if I was out of line. I do not pretend do be an oncologist, and expert or to know more than everyone else, but I think my characterization was fair.

Intuitively apply the standard condifence intervals used to approve medications (2-1/2% on each of the right tail and left tail of the curve) and tell me how you come out.
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