A Very Scary Story: Jan 26, 1989 the... - Advanced Prostate...

Advanced Prostate Cancer

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A Very Scary Story

gusgold
gusgold

Jan 26, 1989 the FDA approves Lupron for the distant spread of PCa after failed RP and over 90% of cases develop into crmPCa .... 33.3% of men will live for more than 5 years after diagnosis of crmPCa.

Nov 12, 2018 Lupron is still the first line therapy for advanced metastatic PCa and 33.3% of men will live for more than 5 years after diagnosis of crmPCa.

One trillion dollars has been spent on the war on cancer during this time

Gus

52 Replies

That is a scary story.

joancarles
joancarles in reply to teamkv

terrifying story

They could have bought up all the gators, and crocks in this world--just for us.

Nalakrats

Another fun fact. Prostate cancer was discovered in 1853. In 1941 it was discovered that testosterone drives it. Starting in the 40's medical castration with oral oestrogens became the first effective systemic treatment for any cancer, and, to this day, androgen ablation remains the most generally useful prostate cancer therapy.

Hmm, that was like what.....88 years to discover what drives it and 78 years only suppressing it

Brbnbrn
Brbnbrn in reply to Dayatatime

Ugh...

I'm not sure I understand why the story is scary. The question in my mind is what would have happened to the same men if they hadn't gone on Lupron. Would they have lived less years or more years? Surely the doctors would only use it, if it prolonged life?

JP63
JP63 in reply to paulofaus

I think the point is that in almost 40yrs they haven’t really moved forward. I’m sure that’s not true. There are far more treatments available now and also the timing and sequencing of treatments is much better understood so that they are more effective. So you would expect that the 33% at 5yrs has increased. I do hope so as I’m 2yrs in and I’d like to think I’ve a few more years in me yet.

paulparry
paulparry in reply to JP63

Immunotherapy and using the bodies good cells is something that now needs a lot of funding. ADT is a short term means to an end and in low grade PCa is fine.

However high grade aggressive advanced PCa is where the real breakthroughs will make a difference.

JP63
JP63 in reply to paulparry

Agree totally. I also think that the targeted therapies look promising, such as LU 177. I know a lot if work is being done on this in Germany and Australia. An old school friend of mine is a Dr in Perth and he was explaining it to me the last time I met him. He reckoned they were 5 yrs away from an effective solution.

lu-177 doesn't help anyone unless u live in Europe or big town that has it available

charlie

EdBar
EdBar in reply to JP63

Phase 3 trials are taking place in the USA and I doubt it is long before it is FDA approved thanks to the fast tracking of cancer meds by the current administration.

my bill not confirmed was either 72,000 for the 3 treatments or that much for each one of the treatment but it cost me 0.

charlie

Where in the US did you get your treatment? Was it a clinical study? Thanks in advance!

DaC00tie
DaC00tie in reply to paulparry

When I asked my oncologist about immunotherapy, his response was "it has no affect on prostate cancer, it works with other cancers but with prostate cancer there has been no scientific results". I reserved my opinion.

paulparry
paulparry in reply to DaC00tie

Probably because PCa is still treated with lower priority than other cancers. Non aggressive strains are obviously slow growing and can be treated with all the testerone blockers.

However aggressive strains have limited treatment options. I havent heard it doesnt respond. I think the issue is that its expensive. Like LU177.

Brbnbrn
Brbnbrn in reply to DaC00tie

I got the same response... however, it IS a viable therapy isn't it!??

from this site i have found new drugs either in the us or not. some aren't available whee most of us live so it means nothing to the others who couldn't use it or get it. i'm luckly that medicare is alot more helpful for the meds that the normal can't afford them. at least most of us are still around compared 20 years ago and stupid docs didn't believe in the psa. me i've been around for 10 years so i'am happy for that small part.

alephnull
alephnull in reply to paulofaus

Because in almost 30 years the mortality rate for metastatic PCa is the same. 33% 5 year survival rate.

Some of us are on borrowed time and it scares us that we are on such a short timeline.

paulofaus
paulofaus in reply to alephnull

Sure, I understand. My Radiation Oncologist told me 1 year ago that the average survival for castration-resistant prostate cancer sufferers, was 12 months. I was age 50 1 year ago.

With current treatment..zytiga, xanti, etc. ? I heard this was an outdated statistic many men on this site proved outdated? Can you direct me to sources so I clearly understand

And then there's these recent findings about this 40 yr-old "treatment" to consider:

1. Hormone therapy can make prostate cancer worse, study finds

sciencedaily.com/releases/2...

2. This Prostate Cancer Therapy May Up Dementia Risk

webmd.com/prostate-cancer/n...

3. ADT for prostate cancer: true love or heartbreak?

ncbi.nlm.nih.gov/pmc/articl...

Not to mention the other well-know hormone-blocking side effects.

Be Well & Stay Informed - cujoe

Sxrxrnr1
Sxrxrnr1 in reply to cujoe

This science daily article I had read some weeks ago. Supports assertions made by some that I had read 10 years ago that ADT slows progression, but does not increase OS. And certainly contributes to a greatly diminished QOL and other life threatening such as cardiovascular, diabetes, osteoporosis etc. not to mention mental acuity,,,the list is long.

cujoe
cujoe in reply to Sxrxrnr1

Overall I fully agree with your conclusions. But as usual, it is a very comlpex and individualized problem. In my case after a radical rise in PSA (3 years post RP and adjuvant IMRT), I went on 3 months of Lupron/bicaludamide and have been able maintain an undetctable (sub .1) PSA with T in normal range for almost a year. Cancer center oncologist team seems baffled.

Obviously, I am estatic with the outcome of my so-far short-term ADT treatment. It is worth noting that I also have had non-prostate cancer specific genetic testing on 120 genetic defects known to be associated with cancer. The testing was under the STRATA trial and used PCa tissue from RP and showed zero defects. As time goes by, it is likely that genetic testing will provide the basis for the treatment program for all cancer patients.

These links are to published articles about the decoding of the AR-V7 mutation, it's importance for MPCa treatment plans, and a press release by the company offering test for it.

Decoding the androgen receptor splice variants

ncbi.nlm.nih.gov/pmc/articl...

AR-V7 and Resistance to Enzalutamide and Abiraterone in Prostate Cancer

nejm.org/doi/full/10.1056/N...

New Liquid Biopsy Test Helps Physicians Select Most Effective Treatment, Prolonging Lives of Men with Metastatic Castration-resistant Prostate Cancer

newsroom.genomichealth.com/...

Hopefully, more research will reveal more targets and more treatments for them. In the meantime, Foundation One's comprehensive testing is now covered by Medicare. (Nalkarats is big proponent of this test as the company is very helpful and the results indicate which current drugs work/might work with each defect/variant. At their website you can see a sample of the output they provide. It is pretty impressive and is apparently updated as new treatments/drugs become available.)

CMS finalizes coverage of Next Generation Sequencing tests, ensuring enhanced access for cancer patients

cms.gov/newsroom/press-rele...

Be Well - cujoe

Yes but haven’t decent studies shown that early use of lupron with Zytega vs Lupron alone increased survival over 40%? That seems like a huge advance. Many doctors called it the biggest advance in PC treatment in decades.

Schwah

TommyTV
TommyTV in reply to Schwah

Yes, at the three year trial point. STAMPEDE arm G in the U.K.

I’ve been in this trial 7 years, it’s worked remarkably well for me. PSA @ dx 571, 7 major bone Mets, PSA currently immeasurable.

first of all what is crmPCa? do u know the sole purpose of luprin/eliguard shots do? there primary purpose of cancer pts is lower ones testosterone in males that"s all. what effect does it have on a body over time, it reduces the bone marrow in a body,lowers ones resistance that's all. now if u talk about zytiga , and predisone it's the buddy that reduces psa's. there is another new drug that's been around since 2006. it builds ones immune system, small effect on psa's and that's what it does PROVENGE.

I had it 14 months ago,have no idea if it is working

I had to scratch my head for a minute but I am guessing that "crmPCa" means "castration resistant metastatic Prostate Cancer." BUT, I am not sure......

Lower testosterone ... lower activity and growth of prostate cancer cells but with the risk that cancer cells become insensitive to low T and take off. That is 'castrate resistant' situation.

Read this excellent book 7 years ago, now a PBS documentary by Ken Burns. Bottom line almost no progress in 4,000 years in progress toward extending life expectancy in any cancers with rare exceptions.

amazon.com/Emperor-All-Mala...

When I was first diagnosed with G9 some 13 years ago, refused all treatments of any kind as was convinced then was a losing game with a lifetime of often horrific QOL side effects.

Remember well reading some years ago that hormone therapy could slow progression but not extend overall survival. However now with my own progression have finally signed on to Xtandi monotherapy plus a 6 time Taxotere infusion. PSA with Xtandi alone, PSA dropped from 374 the day I started to 13 within 6 weeks. Then decided to add Taxotere to Xtandi, PSA now at 3.77. However still not convinced that will extend life expectancy much. Oh yes, do have Mets that scans show have diminished considerably. Whether all of this will help OS is still a question that likely will never be accurately be resolved.

Some 7 years ago, pet CT uncovered a lung lesion that turned out to be NSCLC(non small cell lung cancer) that was treated Orthoscopoly by a UCSF Doc. To date no recurrence. Suggesting that PCa saved my misbegotten life,,,no watchful waiting allowed on NSCLC.

I am an almost firm believer that PCa is rarely cured,,,but that as is usually a disease of older men who die of co-morbidities before the cancer ultimately recurs. And of course those who die of a co-morbidity are deemed to have been cured of their diagnosis of PCa. This went into my thinking 13 years ago,,,,,along with many other considerations to go into right now.

Has been an interesting journey to say the least.

gusgold
gusgold in reply to Sxrxrnr1

are you castrate resistant....looks like delaying all treatment worked out really well in your case...had you gone on Lupron at time of diagnosis 90% chance you would have been castrate resistant within 3 years with a far worse outcome then you face now

Gus

Sxrxrnr1
Sxrxrnr1 in reply to gusgold

Am not yet castrate resistant. Went straight to Xtandi Monotherapy Oct of 2017 after dramatic jump in PSA in September 2017. Had no interest in ADT utilizing SOC with Lupron, Casodex, Proscar Might say I am saving it for when Xtandi fails. Know that I am going out on a limb here but what I have chosen to do. Fortunately my MO’s are humoring me and was able to get it thru my insurance,,,,Medicare with supplemental parts B and D.

Nevertheless have had 12 plus great years with zero compromise of QOL,,,although paying piper now with fatigue from Xtandi,,,all other systems however still operative,,,T is at 600 plus from 400 plus before Xtandi.

Taxotere was a pain in the arse,,,went on it some 6 months after starting Xtandi. Lost most sense of taste,,since recovered, and finger/toe numbness,,slowly recovering.

Absolutely would do the same again. 78 years of age now,,,of course would have rather been first diagnosed at current age instead of at 65. However had no choice in that. Everything else was at my control and choice.

Read Emperor of All Maladies while recovering from NSCLC. Purchased 3 copies post surgery that I forwarded from Amazon to my 2 surgeons and my MO. Last chapter of this book predicts massive improvement in treatment options now with decoding of genome and beginning of understanding of cancers at cellular level. A very prescient book imho.

Anxiously awaiting Darolutimide approval to find if fatigue reduction compared to Xtandi as supposed non penetration of blood/brain barrier and lessened direct impact of central nervous system. Currently in 3rd stage FDA approval testing. Number of trials underway,,,non of which I am allowed into unfortunately because not meeting acceptance criteria.

Lot’s of good stuff coming. I often think of the game changer in polio when in early 50’s Dr. Salk unleashed his vaccine on the world. This day is coming in cancer,,,maybe not soon enough for many. Was however another consideration when I chose not to submit to localized intrusive therapy 13 years ago when first diagnosed with G9 and PSA of only 6,,,although did investigate all options carefully from Cyro, Hifu, Proton at Loma Linda, RP and Rt at UCSF. Given documented recurrence rates of 30 to 50 percent and all with their own foreboding SE profiles elected to not go with any of them.

I recommend that everyone interested read the peer reviewed Swedish Study/trial of RP verses no treatment that commenced in 1990’s,,,,additionally the PIVOT study by US Government Veterans Administration comparing Local therapy to no therapy. Both suggest very strongly a slight advantage after 10 years or so to therapy,,,,,,,,however only for men diagnosed under the age of 65. If over 65 little advantage if any for OS,,,,although results are still being tabulated at 15 and 20 years post study commencement. Both studies can be found via Google for those interested. Same argument closely to testing of PSA for if to do a biopsy or not. Of course remains a huge controversy here,,,somewhat akin to mankind caused global warming or current more politically correct terminology of climate change.

Did maintain strong regimen of scans of all types, MRI’s including MRSI’s with Pyruvate and Gadolinium contrast agents, CT scans, PSA’s, extensive research online and ALL the books,,,some good, many indifferent. Consulted with many Physicians UCFS, Loma Linda, Stanford, prostate Oncology, and others,,,most of whom suggested that I was just a bit completely around the bend.

As I suggested earlier, has been an interesting journey. If not for possible ultimately poor prognosis,,,I have morbidly somewhat thought of would I do it again. The answer is probably yes, given all I’ve learned and the people that I have met and now call friends.

Brbnbrn
Brbnbrn in reply to Sxrxrnr1

So, when your PSA rises is when you know, for sure, you have moved to castrate resistance?

Sxrxrnr1
Sxrxrnr1 in reply to Brbnbrn

Possibly true when already on ADT and PSA begins to climb,,,but not always. Dropping Casodex for example but remaining on Lupron could allow PSA to remain stable or continue further decline. Rising PSA after local therapy but before ADT suggests recurrence, however not necessarily. So called PSA bounce following RT might be an example of this phenomenon.

RonnyBaby
RonnyBaby in reply to Brbnbrn

Not necessarily - sometimes they miss something during surgery, which happens more often than some suspect. A lot of the data that they refer to today is a reflection on the number of patients who had a recurrence after surgery, when they were supposed to be cancer FREE. The old stats are significant - around 30 % in some studies. Hopefully, today, they are more aware and make fewer mistakes.

Look at DaVinci - that should become the standard for today and tomorrows surgeries.

WSOPeddie
WSOPeddie in reply to Sxrxrnr1

So you've had nice QOL but allowed the cancer to get a jump on you. Most would not endorse your strategy. Everyone is entitled to make these kinds of decisions. You've done better than I would have thought. I hope it works out for you.

I want to get off of lupron but my doctors said no.

Would my cancer get worse?... I don't know I just keep taking lupron - but I would like to find out. Are there any studies about what happens if you stop lupron after 4 years?

G9 s4

Larry E

alephnull
alephnull in reply to math33

I was off of it for 15 months before my PSA became detectable, and then it zoomed up. In four months it went from 0.18 to 0.71, almost quadrupled in 4 months.

RonnyBaby
RonnyBaby in reply to math33

Studies are consistent in determining that IF you stay on ADT (like Lupron) for more than 2 years, the side effects, which may worsen over time, becoming permanent. That means you will never produce testosterone again (your nutz are fried). It means you are at a higher risk for some more serious and potentially fatal side effects. ADT is not designed to cure. ADT buys you time and hopefully, manages your cancer, while keeping you alive. Quality of life is not at the top of the list. There''s a lot of printed reference material out there that makes the case for concern about what life might look like. Some seem to tolerate it better than others. I suspect that the older you are, the easier it is to manage the side effects. In MY case, I was told that I was artificially aged to past 80 years of age. I was 66. At 66, I was, in fact feeling a bit younger (like in my late 50s'?). I guess it depends on where you were when they started you down the road to ADT treatment. However, to be fair, what would have happened without it ? I might be singing from a different song book !

A lesser of 2 evils perhaps ????

I’ll tell you what’s scary. If you play the Beatles Revolution #9 backwards at 33.3 it says “turn me on dead man.” I think there’s something mysterious about 33.3. Maybe it’s because if you multiple it by 2 it becomes 66.6, the mark of the beast. 33.3% of the people I polled about this agree with me. The others think it has to do with John’s obsession with the number 9. They are the 66.6 percenters. You know where they’re going. 😈. Koo-koo-Ka-Choo 😎

Seriously, I think they have made more progress in the past 5 years than they did in the prior 40. I hate to say it, but far more money has been thrown at breast cancer research and they still haven’t cured it.

cujoe
cujoe in reply to Litlerny

Litlerny -methinks you must be an avatar of the reisident humorist, J-o-h-n?

j-o-h-n
j-o-h-n in reply to cujoe

I think he is....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/13/2018 5:21 PM EST

Litlerny
Litlerny in reply to j-o-h-n

All I hear is radio gaga 😎

j-o-h-n
j-o-h-n in reply to Litlerny

And if you play a country song backwards at 78 rpm... You get your wife back, you get your hunting dog back and you get your pickup truck back. And if you add 7 to 8 you get 15 which is the minute I'm posting this crap.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/13/2018 5:15 PM EST

Cancer is a toughy because it's your own body which is doing it and the cancer cells can adapt - apparently quite easily to attempts to knock it out. Objectively, you almost have to admire it.

They stop checking PSA at age 70, which is what got me in trouble. I've looked into it and that age 70 cut-off is purely arbitrary. No science behind it at all. The medical profession seems to think that metric has value before age 70, but not after. Unless you develop prostate cancer then it's the metric they (and we) obsess over.

What we really need is a new and better metric. I would dearly love for them to find a good life-extension treatment, but I believe early detection would be the best thing. When I was dx'd at age 75 after not being PSA checked for the previous 5 years, I called all my friends. One of my grad school classmates (admittedly 10 years younger) had had a PSA history almost identical to what mine had been before they stopped checking me. His doc had looked deeper; they found the cancer in its early stage and got it. He's been cancer-free for ten years now. While I'm castrate-resistant, stage 4 with a PSA doubling time of 6 weeks.

They caught my wife's breast cancer through mammogram, surgery removed the tumor and a couple of lymph nodes (mastectomy not required). A bout of radiation and she's been cancer-free for lo these many moons. Early detection is the key in my firm belief.

As an aside, when the subject of statistical survival rates comes up with my doctors, I like to remind them that the greatest improvement in human survival/longevity did not come from medicine. Improvements in surgery and the development of antibiotics certainly were a boon to humanity, but they pale in their impacts compared to the deployment of water and wastewater disinfection public works in the late 19th and 20th centuries that ended the scourge of water borne diseases. A great book called the Blue Death recounts the ravages of endless epidemics of cholera, thyphoid, yellow fever, dysentery, etc. etc. that regularly culled humanity. When docs get too puffed up about the progress of medicine I like to remind them that cleaning up the water supply with a little chlorine had more impact than all medical advances combined in extending human life spans.

j-o-h-n
j-o-h-n in reply to Jim_S_Boston

I understand that California treats it's waste water for re-use by the population. There's two reasons why I would never drink that water. Number 1 and Number 2.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/13/2018 5:25 PM EST

Jim_S_Boston
Jim_S_Boston in reply to j-o-h-n

To further lower the standards of this worthy forum, I might mention I worked for a design engineering company focusing on environmental cleanup projects, including water and wastewater treatment plant design and construction. Our two unofficial company mottos were:

Your s**t is our bread-and-butter

-and-

You do your business so we can do ours

-and-

We’re number one in the number two business

A little levity is theraputic, too!

Jim

j-o-h-n
j-o-h-n in reply to Jim_S_Boston

thanks, I wrote them down and will use them at my next gig.... (you'll get the credit).

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/14/2018 5:39 PM EST

1 trillion $$$ spent between 1989 and now for cancer treatments is not a very big sum of dough. Ppl paid for that from their life savings if they thought they had to.

And how much wealthier is a society where men and women die off by 55 leaving their house and money to younger offspring? Now ppl are expected to live to 85, and that costs society a huge sum of money. So the study of costs to society of so many things is a sobering study, but methinks the cost of traffic accidents, alcohol, foolish lifestyle decisions et all would exceed the cancer costs.

Ppl say the USA spent 3 trillion on the war in Iraq, and from what I know that did not buy a cure against terrorism.

In the Lancet magazine for doctors, you should be able to read about early Pca treatments where older men could get relief from swollen PGs which urine flow which was often the first symptom that something was wrong with a man's water works. Now by 1888 it was known eunuchs in the palaces in Persian and Chinese empires never had any prostate troubles, and they'd been castrated at about 8 or 9 and both Balls and Rodger were both fully cut off with a small sycle like instrument in a couple of minutes and the child was then sewn up, amybe with cauterized cut arteries et all, and maybe fitted with a catheter; I don't know all the grisly details, but eunuchs carried a silver catheter un a sleeve for rest of life so they could piss OK.

They were physically weak, so could not be warriors or labourers, so they became the negotiators of deals and were the first large scale public servants or office workers, and the extra benefit was their ability to look after a harem and prevent bastards being concieved.

Surgery for prostate troubles was extremely risky in 1888, but all surgery was a risk before antibiotics. Not much was know about any cancer and by the time a man needed surgery beyond having balls removed, his overall survival was short because spread of cancer was well underway. The same happened for women with Bca, they usually died soon after a cancer lesion gave pain or was seen on a breast.

The Psa test came along to make a large difference to those who had surgery because the test indicated Pca earlier than waiting for symptoms. You never see anything typed here by guys who had an RP and where there was no later Pca progression. They don't like talking or typing about what was a troubling time.

Since my diagnosis with Gleason 9 and 9 live biopsy samples inn 2009, the ADT gave me 6 years QOL. But Cosadex and Zytiga gave 14mths, chemo gave me no time, Psa went from 12 to 45 in 3 months, and now I have begun Lu177, and I don't know how much extra time that might give yet.

But PsMa scans and Lu177 have both come along and become available after my diagnosis. If these had not arrived, and Cosadex and Zytiga not arrived, I'd be in end stage Pca by now, but instead, I cycled 20km today, and felt well, so a known amount of progress is being made in fight against cancer.

I have 3 enemies, aging, side effects from cancer treatments, and effects from cancer itself. Combined, they will kill me sooner than if I did not have the DNA defects that allows Pca to begin.

One cannot avoid death or taxes, and few of us avoid diseases.

My hope is that immune therapy will mature from experimental to mainstream therapy and within 3 years, and I might qualify to get it.

Patrick Turner.

Lupron was approved in 89 as an option to men who were facing orchiectomy. Lupron is a chemical castration as opposed to having a surgical one. It’s true the side effects suck but testosterone feeds the cancer and any medication that shuts off testosterone production will cause the same side effects. FYI, Lupron does not cause cancer to become CRMCa If the testis are removed the cancer will still become CR. It mutates. The Androgen receptors become smaller and smaller as to feed on what little Testosterone is being produced in other parts of the body. Without ADTafter failed RP, Men would die sooner. Those are the facts. Your personal war on ADT is fine for you but men come to this site seeking information and yourview point could kill them. I have been on Lupron since June of 2006. I am 5’7”weigh 152lbs Ride 100 miles a week on my bicycle, hike, work full time, hunt, fish, camp, waterski, snow ski, and snowmobile. After a lot of hard work my wife and I sharesomewhat normal physical relations. Go figure

I suspect I am not alone in my disappointment with the fact that ADT remains in its primitive form after years of 'research' in the billions of $$$$. You have to wonder if Big Pharma has received enough cash to satisfy the shareholders. I found ADT unbearable and told my oncologist I'd rather die than stay on THAT treatment. Now, I realize that if I ever have to go back on 'IT', he has doubts as to whether I might want to kill myself. I've taken a stand and might regret doing so - but WHEN will something 'more tolerable' come along ? I think the answer is 'blowing in the wind'.

We are not being considered with enough compassion to allow us to try to be in a more harmonious state.

Endless money streams won't fix this - someone (like a gifted researcher) needs to stand up and help us PCa sufferers with an option that stops ruining your life. I know that some men don't have the 'bad' side effects, but I haven't met that many. The 'doctors' and the webinars all say the same thing - that's all we got folks !

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