A question for all warriors passionat... - Advanced Prostate...

Advanced Prostate Cancer

22,187 members27,850 posts

A question for all warriors passionate about the latest scientific advancements.

Maxone73 profile image
69 Replies

Is it because I've only been here for about a year, or is it my glass-half-full perspective (but as an engineer, I should say, "the glass is simply twice as big as it needs to be"... bad old joke!), but it seems to me that the pace of advancement in new techniques to fight cancer is accelerating significantly. Is it just a feeling? (or a hope!)

Written by
Maxone73 profile image
Maxone73
To view profiles and participate in discussions please or .
69 Replies
Mascouche profile image
Mascouche

I like to joke around and say that I am fatalist. The optimist sees the glass as half-full and the pessimist sees it as half-empty. In my case I also see the glass as half-full but when I drink from the glass it tastes like piss. :)

I have not followed advancement in techniques long enough to have a proper perspective between today's advancement speed and yesterday's.

But whether it is faster or not, I don't think I've seen much change, if any, with regards to the SOC between 2020 and 2024.

Maxone73 profile image
Maxone73 in reply toMascouche

well, yes, SOC takes longer, but I am not sure in 2020 triplet therapy was as widespread as it is today...we have to pour something better in your glass!

carbide profile image
carbide in reply toMascouche

What is - SOC?

Maxone73 profile image
Maxone73 in reply tocarbide

Standard of care

monte1111 profile image
monte1111 in reply toMascouche

I dropped my glass and broke it. What a waste of Jack Daniels.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Get the cat to lick it off the floor and then squeeze the cat like a dish rag, catching all the booze back into a glass. Problem solved.

Good Luck, Good Health and Good Humor.

j-o-h-n

monte1111 profile image
monte1111 in reply toj-o-h-n

Actually, I just licked it off the floor myself. 5 second rule. Glass was problematic, but I eventually stopped bleeding.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Geez with our new carpet in the dining room we all forgot about the 5 second rule....

Good Luck, Good Health and Good Humor.

j-o-h-n

Broccoli24 profile image
Broccoli24

I'm also new here... (3 months since dx), but it does also seem to me that there's a rapid pace of change exploring many avenues, nano-tech/delivery, bacterial, AI, massive new computing power, many new clinical trials, vaccines, etc, etc... and a much greater spotlight on PC research than there was. It's encouraging... or it is to me. Hope is a big part of what gets me through each day. I'm convinced that if I can keep it at bay long enough something significant will come along to either manage it much better, or maybe even, hope against hope, cure it.

(Thanks for tracking down and posting new research - it helps me, and I'm sure it must help others in the same way.)

Maxone73 profile image
Maxone73 in reply toBroccoli24

No prob, I started researching it to cheer myself up, then I thought that someone else might find it helpful! You have my same strategy, with my geneticist we talked about this 5 + 5 + 30...if I can block the progression for 5 years (not impossible with a triplet) by then I can surely block it for another 5 years with all the advancements....at that point, in 10 years, it should not be be problem anymore :-P

monte1111 profile image
monte1111 in reply toMaxone73

Would you like to buy some car insurance?

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Only if he has a car..........

Good Luck, Good Health and Good Humor.

j-o-h-n

monte1111 profile image
monte1111 in reply toj-o-h-n

with all the money he saves on car insurance, he can buy a car

Maxone73 profile image
Maxone73 in reply tomonte1111

But i cannot drive it then...no insurance!

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Spoken like a candidate for the Presidency......You got my vote..........

Good Luck, Good Health and Good Humor.

j-o-h-n

GP24 profile image
GP24

There is so much development done it is difficult or impossible to learn about all. My suggestion is, can you only post information about things which are at least in Phase I trials? Most of the stuff that works well in mice turns out not to work in humans. And this is an advanced PCa forum, we will not longer be around to be treated one day with therapies which are currently tested with mice or in vitro.

Maxone73 profile image
Maxone73 in reply toGP24

I understand but I specify in the title if it's clinical or in vivo. Sometimes I post them because they are interesting proof of concept. Actually when they work in vivo and in vitro, it's just a matter of money to get to phase 1, it is not a matter of many years (12-15 months average). I wanted to post everything non clinical in the Fight Prostate Cancer community, but I was persuaded not to 🤷‍♂️

But this post could also help me understand if there are many who think as you do, it's not a problem for me to split pre-clinical and clinical in the two communities😀😀👍

Survivor86 profile image
Survivor86 in reply toMaxone73

So long as your titles are clear, I hope you’ll continue to post both clinical and pre-clinical for this community so those of us interested in current lab research can continue to learn about it. Those less interested can skip over. Many thanks for following and reporting on this research.

RoseDoc profile image
RoseDoc in reply toMaxone73

It takes several years to go from phase 1 to Phase 3 (the phase that is closest to approval)

Maxone73 profile image
Maxone73 in reply toRoseDoc

Yes but in the meantime there are clinical trials that you could be part of

GP24 profile image
GP24

" it's not a problem for me to split pre-clinical and clinical in the two communities".

Please go ahead.

Maxone73 profile image
Maxone73 in reply toGP24

it becomes a problem for the ones who actually are in this community only and that enjoy also that content, that's what I meant 😃

Maxone73 profile image
Maxone73 in reply toGP24

But we can poll it!!

GP24 profile image
GP24 in reply toMaxone73

The objective of many publications about preclinical trials is to get more money to be able to continue. A reason for the very promising results of these trials.

Maxone73 profile image
Maxone73 in reply toGP24

then I should avoid also phase 1 and go for at least phase 2, as those in phase 1 would come from the many preclinical trials looking only for money...

KocoPr profile image
KocoPr in reply toMaxone73

Phase 1 is a very important option for the advanced group.

FCoffey profile image
FCoffey

There is a lot more research being published, and much of it is very exciting. It is intended to be so.

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

-Marcia Angell MD is a well-known, respected physician, long-time editor of NEJM.

I submit that if you look at the metrics that matter: overall survival, quality of life (which are just words in SoC) there has been very little progress in the past 20+ years.

That's not to say there has been none; of course there are newer treatments, and some of them actually benefit patients as well many bank accounts.

In 2012, there were 19.7 prostate cancer deaths per 100,000. In 2022, there were 18.7 deaths from prostate cancer per 100,000. That's progress, but hardly significant acceleration.

Maxone73 profile image
Maxone73 in reply toFCoffey

Interesting point of view!

maley2711 profile image
maley2711 in reply toFCoffey

well, that's approx 5% fewer deaths, but agree on hardly significant. D o they age adjust the

population for such numbers?

I'm not following most research.....don't see the benefit, but we are all different. I am interested in reading about things approved in other parts of the world but not here!

Maxone73 profile image
Maxone73 in reply toFCoffey

There was a bunch of "famous" MOs having a discussion on video (I don't remember if it was on uro today) that were talking about the fact that with triplet therapy becoming the standard (but even doublet with daro) for mHSPC, soon the stats reporting 30% chances of being alive in 5 years should be updated probably to 40 or 50%...if you think that ARASENS and ARANOTE have been running for more than 43 months (to my knowledge we should be at around 48 or more by now) and have not yet reached the median OS, it looks like some update will be due soon...

FCoffey profile image
FCoffey in reply toMaxone73

Your question was "Is it just a feeling?' The question isn't whether the latest fad or a new study shows changes in survival after 5 years. I'm arguing that to answer your question one needs to look at something measurable and meaningful to patients, like overall survival (OS). Has all the research changed overall survival? The statistics are pretty clear - not much change.

There's nothing wrong with your alternative answer "or a hope!" Hope is important, it improves both OS and quality of life. Hope is where you find it. If the research gives you hope, that's great. If you find hope in prayer, or in support groups, or in complementary treatments, or in grandchildren, or in meditation, that's also great. We all need hope.

Maxone73 profile image
Maxone73 in reply toFCoffey

Actually:

At 48 months, 62.7% of patients in the darolutamide group were still alive.

We can assume that survival follows an exponential decline, which is quite typical for survival analysis in clinical trials.

If we try to apply exponential decay at 60 months, survival rate would be 50-55%, if the decline is steady and continuous.

dhccpa profile image
dhccpa in reply toFCoffey

Very interesting quote! Yet very hard to disagree with, along with your own comments.

NanoMRI profile image
NanoMRI

Not sure how this settles in the glass - ? Ten years ago when I was diagnosed with PC I learned about diagnostic and treatment methods in Europe that are still considered 'new' here in US, still being adopted, and in a couple of cases not yet available.

This said, at this moment I am getting my first immunotherapy treatment for my recently found metastatic melanoma tumor in my liver. Just a couple of years back the outlook for me would be less favorable.

Interesting footnote is that this melanoma tumor was stumbled upon whilst using newer technologies, PSMA PET CT and liquid blood biopsy, done at uPSA 0.033, while on the hunt for lingering PC.

Maxone73 profile image
Maxone73 in reply toNanoMRI

All the best bro! I hope you will be able to keep also this at bay

HopingInNJ profile image
HopingInNJ in reply toNanoMRI

Once they have you up on the lift…..they do find things.

NanoMRI profile image
NanoMRI in reply toHopingInNJ

Great analogy - I shall plagiarize it! Grateful I am for this finding and advocating for me to be up on the lift. Unfortunate that some members discourage others from getting on the lift.

maley2711 profile image
maley2711 in reply toNanoMRI

Were you entirely symptomless re that liver tumor?

NanoMRI profile image
NanoMRI in reply tomaley2711

Entirely, including routine blood work. Obviously I am most grateful for this unwanted (shocking) find. Not wanting to seem like a hypochondriac, itching is on the generalized symptom list - of course I itch but nothing out of normal. Leg swelling is also on list - I did get a bit of slight ankle swelling but attribute this to rare inactivity (say from all day drives with RV) and my having had salvage ePLND (very mild lymphedema easily prevented/resolved by compression and bit elevation).

janebob99 profile image
janebob99

Yes, absolutely, there are more papers published I think.

Too many for 1 person to summarize for only the clinical papers, not to mention pre-clinical work...

Fiddler2004 profile image
Fiddler2004

A handful of interesting peer reviewed studies showing promise in the battle against several cancers have surfaced recently (Frontier's in Oncology) and are moving rapidly towards possible trials, however I do think it will be many years before the treatments are part of SOC.

RoseDoc profile image
RoseDoc in reply toFiddler2004

In general, it takes 17 years from the time a treatment is proven to be efficacious to the time when it becomes generally accepted (adopted) by all physicians.

Balylone profile image
Balylone

Time is relative. Yes medecine and science are accelerating but still long time is needed from idea to clinical trial 3 and our time appears to me shorter.

Furthermore we sometimes see comets. Unlucky poor guys for whom nothing works and who die fast. Definitely even though I live from science and médecine and believe in its power, I cannot feel excited by its pace.

street-air profile image
street-air

while there are many interesting new avenues and they are helpful in delaying progression am still waiting for a sign stage 4 can be cured. If anything, the more science unlocks secrets, the more astoundingly resilient cancer appears to be. The damn thing adapts faster than the alien on the USCSS Nostromo to new challenges.

PSA680 profile image
PSA680

Hi Maxone73 - I really appreciate your daily posts detailing a whole range of new developments, experiments and trials - they are a beacon of hope so please keep up the good work. I share your view that the pace of development appears to be increasing. Kind Regards my friend Darren

Cenerus profile image
Cenerus

As a fellow engineer, I truly appreciate what you’re doing Maxone.

I agree that there appears to have been a burst of new treatment development that’s promising. I think part of this is attributable to the development of targeted therapies like Pluvicto that are the result of research that has identified specific targets for cancer therapies that allow physicians send a more toxic treatment into patients that tends to only attack the cancer cells. My only personal frustration with these new treatments is the drug testing pipeline being about 10 years long. I understand the need for safety precautions, but that seems a little silly when we’re talking about lethal disease that can kill in much less time. Most of the promising new treatments being tested today still have about 6-8 years of further testing before we see them in the broad clinical environment. Contrast that to the development of the first Covid vaccines which took less than 1 year to develop. There has to be a better way.

Maxone73 profile image
Maxone73 in reply toCenerus

I agree with you. Discovery and first development now passed from 2-3 years to a matter of weeks (which is already a good gain), I hope they will find some surrogate end point that can shorten phase 2 and 3 trials. Actually we have become way more precise also at predicting the side effects. There are still casualties that can be due to the treatment itself, but less of them if you compare to a couple of decades ago, even if the number of trials increased almost exponentially.

dhccpa profile image
dhccpa

You're correct, but the types of developments seem to be simply extending life a little better than the existing treatments--incrementalism.

We need major sea changes.

NanoMRI profile image
NanoMRI in reply todhccpa

one sea change that has been available for years and would have helped many of us is screening all men in the 40's looking for a <1.0 PSA and mpMRI for any concern. Had my disease identifying mpMRI ten years ago at 57YO, after dismissing my PSA for many years prior.

dhccpa profile image
dhccpa in reply toNanoMRI

Yes, you're right

Maxone73 profile image
Maxone73 in reply toNanoMRI

and genetic profiling, to know if you are more exposed to some kinds of cancer!

NanoMRI profile image
NanoMRI in reply toMaxone73

Yes, you're right!

Sunnysailor profile image
Sunnysailor

Maxone, I appreciate your posts. It helps me stay on top of things. I try to read everything. Before my husband has cancer. I worked as a professional fundraiser at a research university. I worked directly on grant proposals. I have had the pleasure to see some of these researchers work first hand, they often are brilliant and sleep in their offices because of their passion during discovery. I am hopeful too. We are currently at Mayo and our oncologist is working on a trial. He was very excited to talk about his research in our first appointment. It’s people like this that are going to help this community. I pray it comes in time for all of us. Keep up the good work and thank you for your posts.

Maxone73 profile image
Maxone73 in reply toSunnysailor

Well, thanks!

Voodoo33993 profile image
Voodoo33993

I also appreciate your posts on all possible venues. It gives me hope more will be done to at least prolong OS. Although I understand the need to be cautious about making public a medication or procedure, there is something to be said about one's own choice when there is no other option. But this is another topic. Thank you for all your research & keep on posting them.

Kanka99 profile image
Kanka99

Just to support what other warriors have said above, I am very grateful for the research information that your share with us in this forum, it keeps me informed and also hopeful. As for the speed of scientific and medical advancement, personally, I am very pleased with the progress that has been made in the past 20 years. I am optimistic that the medicines that would cure us are coming, so warriors let's stay hopeful.

pakb profile image
pakb

I'm not sure what the actual number of advances have been. But I know when my husband was diagnosed in 2017 the Stampede and Chaarted studies led to new treatment protocols that my husband benefitted from. And abiraterone was first approved for 1st line treatment. All those were huge in 2017. I do think there are many things published recently that are 'exciting'. I also think there are many new things no one on this forum would know about if you weren't typing them here (thank you!), so maybe there were just as many in the recent past but they weren't brought to peoples attention by publishing or by members like you.

Maxone73 profile image
Maxone73 in reply topakb

🙏

Hawk56 profile image
Hawk56

Well, I think back to January 2014 and the state of the diagnosis, imaging and treatment - TRUS Biopsy, Surgery, Brachytherapy, ADT (lifetime...)

Then we seemed to have broken through the paradigm of monotherapy in 2017 or so, each destined to fail and then death, to combining treatments, bringing them forward in the disease to overwhelm the heterogeneity of the cells.

Next, we advanced imaging. In March 2023 my radiologist and I were discussing SBRT to a PLN identified in a PYLARIFY scan, the point of our conversation, we would not be having it in 2016 when I had BCR after surgery and we were discussing SRT.

I've had genomic testing done, not needed at this point, but it's there to guide future discussions if necessary.

From my perspective, the advances in diagnosis, imaging and treatment of our cancer have been exponential. That had brought a plethora of choices with one's medical team, with perhaps no "right" decision, only the "best" decision based on one's own clinical data and using the SOC such as NCCN guidelines as a starting point for treatment decision discussions.

Not sure I'll be here in another 10 years but would be interesting to see what had happened in diagnosis, imaging and treatment by then.

I often tell my daughters that they will look back upon this time as archaic when they think about the slash, poison and burn options, much like we do to the late 20th century (talk to the older radiation nurses...).

That being said, 30k or so die each year so my perspective of being alive 10+ years with a high risk PCa - GS 8, GG 4, time to BCR, PSADT is likely different from theirs. I think I'm here in part because of the advances in diagnosis, imaging and treatment paradigms.

Kevin

Clinical History
85236442968 profile image
85236442968

Maxone73

Not about Pca

As retired Engineer. I certainly liked and can relate to your quote of "the glass is simply twice as big as it needs to be"

Anyway I find your links informative, but I must be honest that I do not look all of them over. I do look over the ones that have a direct relationship to my situation.

Keep rolling on them, and best wishes on your personal journey,

traxcavator profile image
traxcavator

Maxone,

Please keep posting. If people don't like it they don't have to read or follow. But, please try to include enough information, so we can decide whether or not we want to follow a link.

As someone who spent most of his life in engineering, this quote comes to mind: "The solution is out there; it's your job to find it." I think it is likely that some thing or things that are already out there will be curative.

I started looking at the cancer literature 33 years ago when my father had cancer. (NSCLC. He died from an inappropriate prescription not from cancer.) At that time I became convinced that curative treatments for many cancers would be: immune related and intratumoral. Confirmation biased or not, that's what I still think.

I believe it is quite possible "they" missed the boat on a lot of things. They continue to want to infuse large quantities of toxic agents into one's bloodstream, and hope enough gets to the tumor to be effective. They treated the interleukins as if they were another chemo agent. By the time it became clear that was the wrong approach, many ILs were off-patent, so there was no money in them.

John

Mgtd profile image
Mgtd

All the above comments are really well thought out and really have contributed to this discussion and thanks to all.

I would like to comment on the research proliferating in all phases of our lives and especially in the medical field. First let me say I am not an expert in this field. What I am going to say is based on my practical experience and research.

I have been helping my two grandkids on their journey to become physicians. For years in the academic community there has been an axiom of “publish or perish”. Unfortunately this has also made its way into medicine.

Today if you want to compete for residency positions in high paying specialities you must publish. For example the average med student applying for a residency in dermatology had over 25 research credits to their name. This is also true of most high paying specialties. The same philosophy is true for undergraduate students wanting to apply to MD PhD programs.

Why is that? Quit frankly it is simply the law of supply and demand. Limited slots in both residences and med school programs is forcing students to seek ways to move to the head of the line. In addition this is contributing to burn out at an early age.

Like the esteemed doctor above I too have to ask myself what is the real value to this proliferation of research articles simply to get your name on it or to enhance the reputation of the first or second author.

Over the years I have changed career fields three times each time by returning to college for advanced degrees in those fields. I have no research to my credit. Yet I have been a good practitioner in those fields.

Just my take on the issue.

CousinGrandpa profile image
CousinGrandpa

Max, It is my understanding that there are more new treatments in the pipeline for PCa than for all other cancers combined. Yes, it is accelerating, and encouraging!

FrostGyre profile image
FrostGyre

Why is there a need for new techniques to fight cancer when cancer is a disease of diet (as are 99.99% of all diseases)?

MateoBeach profile image
MateoBeach

Thanks for this very interesting thread, Maxone. Thoroughly enjoyed it.

Reminds me of the joke about physicists determining the needed size of a chicken coup: "First you assume spherical chickens."

Maybe the volume of the glass is growing exponentially? Yet that does not account for dilution from poor or useless publication. What is filling the glass? PhD Theses, aka much of the preclinical "science". We need good filters such as yourself.

It has been proposed that the sum total of all medical knowledge has been doubling about every 10 years, That is based on an crude volume estimate of all published medical journals. Still, the good stuff (actionable) is also progressing. Omics and AI will accelerate it.

Maxone73 profile image
Maxone73 in reply toMateoBeach

Hi! that was 15 years ago more or less...now the amount of information (still not distilled and all actionable) in medical field doubles every 73 days 😀

medscape.com/viewarticle/98...

I am going to put up a system, a kind of RAG that will allow people to browse through clinical trials after answering few simple questions, and then ask direct questions to the AI about a given clinical trial, instead of having to read through it all. Things like "Are there trial locations in AL??" or "Am I eligible if I already had docetaxel?"...I have done the first half of it, thinking about how to implement the questions part :-P

RazorSaw profile image
RazorSaw

Has anyone commented on the statistics about clinical studies? My understanding is that many times clinical studies never take off because of lack of enrollment. As I'm contemplating enrolling in a phase 2 clinical study for prostate cancer, I just thought that this enrollment question might be suitable for this group.

I've been a regular blood donor for over 45 years and I understand that only 5% of the US population donates blood. And then I read that only about 5% of us will consent to being involved in a clinical trial.

So I think it's great that you are getting all this information out about research and I would also commend anyone who participates in a clinical trial.

Please keep up the good work.

traxcavator profile image
traxcavator in reply toRazorSaw

With clinical trials one also has to ask the question of whether or not it may lead to something useful either for oneself or future patients.

Years ago I came across a trial in Boston where they did chemo only on 400 patients (don't remember what cancer). They found the death rate was the same as when the experiment was done decades earlier. I certainly wouldn't want to waste any part of my life participating in something so futile.

inthefight profile image
inthefight

Thank you for your contributions and please keep on posting. We are very interested to see what might be coming down the pipeline. Things have changed just during the past three years. We started this journey in 2021 with doublet therapy. Shortly thereafter triplet was king. We have hope in the future.

Not what you're looking for?

You may also like...

A question about the immune system

I’ve been researching the immune system to see if my hypothesis about using T cells from a patient...
Javelin18 profile image

Question For The Board

Lupron has side effects like CVD, brain fog, and loss of sex drive because it wipes out T...
gusgold profile image

BAT question. A little worried about results.

I was on Xtandi as part of a clinical trial at NIH and after 2 years my PSA started climbing and...
AllenMarco profile image

New Member Question (s) For The Group

Good Morning :) Warmly I greet you all. I am new to this site and wife of PC husband. I applaud all...
ndon2018 profile image

The Difficult Question most all of us will face.

Hello All. i wanted to give an update since my last Chemo adventure, and discuss where I am now. If...
dpowellnt profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

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.