Advanced Prostate Cancer
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Selection Bias - Extrapolating Survival Times from posters

I wanted to make the point that just because a number of people post here that they have had Stage IV Metastatic Prostate Cancer for 7 years, or 11 years, or whatever, that does not mean a newly diagnosed person, coming to this site, should make any kind of assumption based on that. Why?

Because the ones that have died are not posting anymore, so that potentially leaves a number of outliers posting on the site which skews the perception of a visitor to the site.

What do we know statistically? It is reasonable to assume that 30-35% of people with Advanced Prostate Cancer with metastases to the lymph and bones, will live 5 years or more. I do not have the statistics for when it is in lymph bones AND an organ, such as lungs or liver, but the survival times would be considerably lower. Lastly, recent studies suggest that those with metastatic prostate cancer who go on hormone therapy and whose PSA at the 7 month is undetectable, live the longest, with an average of 75 months.

(I myself have Stage IV prostate cancer to the lymph's and bones, and im on ELIGARD and ZYTIGA, and like most of you, I do quite a bit of reading.) Im not trying to harm anyone's hopes and dreams, but remember, if 5 people post here that they have had stage IV for 8 -15 years, the 5 guys who died in the second year are no longer posting, so in statistics we call that "selection bias"

Hope this helps.

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Most often we are sharing that information because the new person is looking at the statistics and thinking he has only X months or years, because that’s the median. I want the new member to focus on himself, his treatment, and his survival rather than the median. I want the median to get longer.

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I agree with you to a point...but i am appalled by the lack of science going on here...if we took 15,000 men who had mets to lymphs and bones in 2007, virtually all of them are dead here in 2018 ( 11 years)....thats a fact...NOW, if we took all the men newly diagnosed with mets to lymph and bones from 2014 onward, given new drugs now available, will a higher percentage be alive in 2025 (11 years) ..yes, absolutely.....

The biggest issue i had when i was diagnosed was getting these doctors to speak the truth of the DATA...then i realized they didnt actually understand the data, since they were just physicians, not world class predictive modelers and data scientists...so I went and studied the data myself...and my belief is FIRM, that no more than 40% of men with StageIV metastatic prostate cancer to the lymphs and bones, will survive 5 years...so when i say the majority of men wont make it 5 years, that is an absolute scientific fact...Now, as you say, it is true that it doesnt speak to any one individuals case...very true...but people need the baseline facts....getting sick and tired of the aphorisms and motivational speeches on these cancer sites, let's get real and have real discussions about treatment paths and extending survival times...

I have spoken to dozens of patients with Stage IV prostate cancer that are on Lupron injections and when i ask them "ok, why are you also not on Zytiga at the same time? The study results released in 2017 were the "shot heard round the world, the biggest news in prostate cancer history" and they look at me like i have 3 heads...its frustrating.

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Thank you for sharing these facts. It is often forgotten that some of us struggle with an agressive strain that also makes a difference. I also appreciate those contributors that offer hope. I firmly believe attitude is important to our survival.

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I posted the results of Stampede Trial a few days ago, which goes some way to show these treatments work, and the survivor/deceased ratio.

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I did the same thing when I was diagnosed 3 months ago, but now I have learned the MOST important thing and I want each unfortunate new member to our group to remember this one thing...EACH DAY IS A GIFT and I am packing a week into each day baby... So I am living until I am 100...statics who needs them!!! :)

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j-o-h-n------------>FistBump<-----------DeanNelson

Good Luck and Good Health.

j-o-h-n Sunday 07/29/2018 1:19 PM EDT

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The point of many of my posts is that there are things one might do to improve one's position on the bell curve.

I will give just one example: inflammation. PCa generally induces chronic subclinical inflammation. Control COX/LOX & we remove the elements that make the cancer more aggressive.

Inflammation affects 5-year survival even in those with no diagnosed disease.

Put bluntly, albumin of <4.0 can kill. It can be brought back up to 4.5 or higher by controlling inflammation.

My old posts cover a number of areas where we might improve our prospects of becoming outliers.

-Patrick

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What do you take to reduce internal inflammation?

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Patrick, is there a multi-vitamin that you take that includes a bunch of these? The multi-V I was taking included selenium so I stopped taking it. Looking for a multi-V.

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I believe that the cornerstone of Nalakrats strategy for inflammation was Zyflamend. He was taking other stuff too, but he had managed to achieve a CRP of zero & credited Zyflamend. Unheard of - a zero CRP! Alas, the new owners of Zyflamend changed the production method & longtime users (for rheumatoid arthritis, etc.) complained that it no longer worked.

While a single multi-supplement would be convenient, I like the control of shopping for quality supplements separately.

-Patrick

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There is also a bias in that those who are cured of pCa are probably not spending time on pCa websites.

Patrick, I have found your posts very beneficial and greatly appreciate your sharing of info.

Mary

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Prostate Cancer and Metastatic Prostate Cancer are two different things....one has a cure, the other does not. I was referring to metastatic prostate cancer

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I don't necessarily want to "disagree", but perhaps the level of metastasis has a lot to do with it? For me nothing indicated metastatic disease but after my RP (with negative margins), my PSA never got to zero. Subsequent imaging found a "suspicious" lymph node. Currently undergoing lupron and zytiga, and will do 8 weeks radiation in Sep. My RO at MSKCC said he'd give us a 40% chance of a cure. Of course he did also say that microscopic metastases would be undetectable until they've grown, etc. Still I'm holding onto hope, but at the same time not being unrealistic in my expectations. I'm also going to ask if I should do chemo to potentially kill anything roaming around and help increase the chances of a cure. Either way, I'll fight it with everything I can til one of us is dead.

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You stated, "Lastly, recent studies suggest that those with metastatic prostate cancer who go on hormone therapy and whose PSA at the 7 month is undetectable, live the longest, with an average of 75 months". That study is 2 years old, not recent. I was part of that study. The study considered a psa less than 0.2 as undetectable. Many other facilities consider 0.2 as detectable. As far as the 7 month mark, I personally asked the lead study author Maha Hussain, M.D., former professor of internal medicine at the U-M Medical School if 7 months is written in stone and was told no. It took me 12 months for my psa to become less than 0.2, it hit a low of 0.07. A link to that study is below:

uofmhealth.org/news/948psa-...

You also state " It is reasonable to assume that 30-35% of people with Advanced Prostate Cancer with metastases to the lymph and bones, will live 5 years or more". Again those statistics are extremely outdated as methods and sequences of treatment have changed since those statistical findings. If a man is obese, sits on his rear all day smoking, and eats junk food, you can bet he won't be alive in 5 years.

I have yet to find a life expectancy chart that factors in other conditions such as copd, diabetes, heart conditions, obesity, etc. Everyone is thrown into the same basket regardless of other physical conditions. Lastly, other factors such as exercise and a sensible diet don't come into play when these life expectancy charts are designed.

With a cutting edge MO helping guide you, along with a proper diet combined with daily exercise, it's reasonable to assume that the median survival curve can be moved greatly in a patients favor.

My PCP told me last month that I'm in incredible physical condition for a man 68 years young. This is after 3.5 years of Lupron, Casodex and chemo. I recently ran a half marathon with my daughter and placed 4th in my age group among 26 men. I can still bench press my body weight 60 times in 15 minutes. According to life expectancy charts, I should be close to death. I'm going sky diving next week, maybe that will kill me, the cancerous lymph nodes, mets on my bones and an original psa of 850 haven't yet.

My point, make your own life expectancy chart. The strong survive, the weak perish. In the mood to live much longer than expected? You have to work for it.

It's a beautiful day here in Michigan, therefore I'm going to lace them up and go out for a 6,7 mile run. I need to get my butt in gear because I have 5 acres of grass to cut today.

Want to beat the "death charts"? It all depends on how bad you want it.

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All excellent points...HOWEVER, I could post 7 different studies that scientifically show very valid information, and someone would come on here and say "well that study is old"...there was a major study that tracked something like 13,000 Metastatic Prostate Cancer patients since 2007, and something like 92% of them are now dead.....of course, then someone will say "but that study is old" !!...lol...I personally know 2 men who had what i have (mets to bones and lymphs) and they both died within 60 months of diagnosis, and im not talking ancient history, im talking both died in the last 2 years.

Are new medicines and techniques giving longer survival times? yes....but lets not exaggerate it. We can argue the survival time to 5 years is 28%, 30%, or 35%, but one thing it is NOT, is 50% or anything of the sort. Let's keep it real people. Keeping it real, helps people. Making things up, does not.

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I will also say, on a positive note, I am going to beat the disease entirely and completely, not just with the lupron and Zytiga but with other things I do. No one is more positive than I am...and I have enough cancer in my body to kill FIVE people lol...im doing a 3 hour workout in a few minutes...so im very positive about things...HOWEVER, if we took the entire universe of Stage IV prostate cancer patients, the majority of them will absolutely be dead within 5 years, that is a statistical fact. Im a data scientist, and i know the data.

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(ps..after my last two posts this is now the part where people will come on here and say "whatever studies you are looking at are old" lol ...)

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Stop blaming the patient with your "the strong survive and the weak perish" nonsense...secondly "2 years ago" is statistically "recent" you know very little about data science and predictive modeling I see...with regard to "7 months" that is indeed an approximation, we do that in predictive analytics because we have to pick a point in time, in this type of finding. With regard to whether .2 or .1 is undetectable, again, it's a data point that has to be chosen when doing a study like this, if we didnt pick a level of PSA to be "the level" then we could not finish drawing the conclusions using the predictive modeling software...inputs and parameters have to be chosen, when using predictive modeling software.

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Right on my brother. Love it. Keep on keeping on.

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There are a wide range of men who have stage IV prostate cancer with various levels of activity and health disorders. While I think it's great to be able to run a half marathon and bench press your body weight, you seem to be a bit in your own bubble. You are basically discounting that many men were active and exercised but succumb to the treatment side effects and related disorders. It is not sismply a matter of getting up off your ass and hitting the gym, though exercise is important. It is much more comlex than that. I would guess that your genetics related to sports and exercise are quite good while other may have amuch steeper hill to climb.

Such things as depression, weakness from treatment, osteoporosis, constant pain, incontinence, etc. can factor into one's ability to maintain a strenuous exercise program. Because you can overcome your personal obstacles does not mean everyone can and does not even mean that you or anyone else doing all that they can, will necessarily live longer. Your standards are not "the standard". How much does anyone want to live and how many of us are retired and have the time to do all that you suggest after working all day?

A less overbearing and superior tone in your posts might turn men onto your underlying message of the benefits of diet and exercise. You make good points but they are lost in statements like "The strong survive, the weak perish." that are not insightful nor motivating.

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This disease cripples. I have personally seen my father who was a very active guy that spent 20 yrs in the special forces completely crippled by stage 4 prostate cancer. He went from being a man that ran every day, ate healthy and went to the gym to a man that cant walk. He has mets all over but several on the spine that have caused compression fractures.

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I appreciate your comments! It helps me keep perspective while reading.

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That is my hope, because i think sometimes reading these boards, one gets the impression that if you have bone mets is 19 different bones from your femur up to the highest part of your cervical vertabrae, (i do) that you are going to live 10 years.....you probably are NOT, but it is POSSIBLE, yes..... Likely? absolutely not.

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Ill tell you a great story, and it illustrates the problem: When the doc told me "listen you have alot of bone mets and it is also in your Lymphs, i know you have seen the CT Scan and the Bone Scan, so im not telling you anything you dont know...you have Stage IV cancer..but I had a patient for many years who had exactly what you had, and in his 12th year, we told him not to come back quarterly anymore, we see him once a year, there is no evidence of cancer in his body that we can find...so anything is possible, keep your head up"...So I said:

(me) Can i ask you a question?

(Doctor) Yes Brian, fire away...

(me) Do you know TWO guys or just that one guy?

(Doctor) Excuse me?

(me) You heard me, dont pretend you didnt hear me, do you know TWO guys who achieved that kind of response, or just the one guy?

(Doctor) Just the one guy

(me) Ok, when you find the SECOND guy, that would be statistically interesting, until then, it is not relevant

END

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😂

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Are you finished ranting Mr. data scientist? I'm sorry I'm not a genius like you, or maybe I'm just making things up, heh? Now let me go brush up on my data science and predictive modeling . I don't allow myself to be baited by your type. We don't buy your grim reaper attitude here. Go elsewhere and frighten the children, men reside here, real men, not frightened souls like yourself. I'm finished with you, have a great statistical life.

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6,000 followers on twitter from 77 countries would disagree with you...im a fun guy, not a grim reaper...but i keep it real ..im pretty famous, and im generally considered to be the greatest predictive modeler who ever lived, so you should be grateful i stopped out here, so stand down sir. And show some respect

Brian Watt

@RealBrianWatt

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Thanks for sharing!

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Well, you need to work on your people skills, while you are busy blaming the patient for their own deaths because they are overweight and so forth, with your "the strong survive, the weak perish"....and you think IM offensive for giving true statistical facts?...lol...please...stop lying to people...

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Wow Bill, i didnt realize the purpose of these boards was to just turn it into a cheerleader positive thinking experience, I thought it was to share accurate and timely medical and experiential information, to help patients understand their disease and so on. Particularly the newly diagnosed, who are the most important viewers of this website. I didnt realize this was just an exercise in cheerleading with your "the strong survive and the weak perish" stuff lol....my bad lol

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It is both. You can find actionable information with regards to treatment options and useful supplements. It also provides survival testimonials that offer hope. As far as the "strong survive" assertion, studies have shown that obese men have shorter times to recurrence. And that's a FACT. I'll skip the 'lol' which I detest.

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Definitely! You hit the nail on the head. It is not brute force that gets one to a better outcome and certainly not degrading others to make your own viewpoint seem superior. I think everyone needs to understand the reality of their situation. This isn't giving up, being a "grim reaper" or otherwise packing it in. It is just factoring that into the equation of how you live your life and what choices you make, including diet and exercise. I do belive that I have heard diet and exercie and good for everyone in almost any instance. Lol.

I don't think either of you is wrong, It need sto be a blend of reality with as positive attitude as possible and doing all you can to insure the highest quality of life for the longest period of time....and also pack in as much fun as possible and time with family and friends as possible!

Thanks for sharing your information. It is up to each of us to decide what to do with it.

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You are correct there have been many great men who posted in the past , and they are no longer posting, I can think of many, However the point is that the Men who are still alive may be able to inspire hope in those newcomers, that rather than just roll over and go to the distant shore, as their Dr, or these stastics you show say.They will accept the new reality and fight with all they have, gain all the knowledge they can, and seek out the best medical care,,maintain their body with exercise, and eat right. These are the ones who are riding the tail of that curve.As others have said there are attitudes we can develop, knowledge we can gain, information from People on this group , that can extend that survival curve. “Lies, Damn Lies, and Statistics”MT article below written by S Gould on Cancer statistics.

people.umass.edu/biep540w/p...

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Well 1) thanks for insulting my profession that I spent a lifetime becoming great at 2) The biggest challenge i had when i was diagnosed with terminal cancer, was getting at the truth of the data...who lives, and for how long? what are the attributes of those that live the longest? what are the inputs? What do we know?...instead i got a bunch acting like this is a Tony Robbins motivational seminar.including doctors and oncologists, who are INCAPABLE of telling the truth...its astonishing....the majority of NEWLY diagnosed, want truth and information, not motivational speeches

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Listen the simple fact is my oncologist or urologist or GP could simply say "listen, the fact is the majority of my patients who have what you have dont live 7 years, many of them dont live 5 years...but i have a few who lived 20 years"...its that simple...but they are incapable of even speaking THAT simple truth....im here to keep it real...since no one else will

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Bottom Line, “Get busy living , or get busy dying”, “If we are worried about dying, we can not live anymore”

Dan 89

Dx, 2006 age 49, stage 4, Gleason10,M1B,bpsa 148.given 1 year on median survival at dx. According to Statistics

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Im not worried about dying, im a data scientist who was, at the time of diagnosis, frustrated by the general low level IQ's in the medical profession thinking i wanted to hear a happy fairy tale of how I was going to live 15 years lol...what i WANTED (and subsequently found, on my own) was the INPUTS, the DATA, of WHO lived, and for HOW LONG, and what were the factors that could influence survival time...thats it...you all are making a bigger deal of this, than it is....90% of the people that are reading this, that are newly diagnosed appreciate what i am saying...we need FACTS, we need TREATMENTS paths that gives us the longest survival time, not freakin aphorisms like "get busy living" and all your other nonsense

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100% of the people who are reading this forum will die someday. Is that "keeping it real" enough for you? The question is, how many will die of prostate cancer vs die with prostate cancer. Stop bashing us over the head with reality, or your version of it.

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I went to an MO in 2015 when I had bcr for the second time ( after failed RP and SRT) . I had sent him my data in advance. He didn’t hesitate and said “ I don’t usually see guys like you ( I was 71). Most are a lot older. With standard of care you’ll be dead in three years.”

Now that was , as you say , getting to the point. I walked out.

Since then I’ve had radiation to all pelvic nodes and to my right femur as well as ADT3 for 13 months each time. So my mets have been as they say “oligometastatic”.

I’m still going strong but Psa is on the rise again.

All we can do is treat the bastard, live life to the fullest and hope we are outliers but stay clear minded.

Bob

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so you and bill's major contributions for the people in need is "the strong survive and the weak perish" and "get busy living or get busy dying"....thats great science right there (rolls his eyes)...Whereas on the OTHER hand, when i post it is "folks, the Lupron injections + Zytiga pills taken at the same time, is the best path we have for metastatic prostate cancer...its very good, for most, but not all...if you are not on these two drugs, at least ask why"....so compare your contribution, to mine....ok? can we be done now? thanks

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Feel free to look at all my contributions and replies to this list since it began, and on other ones before that, before you bring judgement on either Bill or I.I see this is your first contribution so I do not have much to compare . Oh and try to be friendly.

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Well, my time is limited, so i have posted a summary of what I think, under a separate thread. I am a very busy person, i contributed what i could, that was science based. If anyone needs me, everyone knows who I am its not a big secret, and where to find me on Twitter.

Brian Watt

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And then i follow that up "and folks, i am not talking about taking Leuprolide injections until they fail, and THEN taking Zytiga, im talking about taking them both at the same time...that extends survival time SIGNIFICANTLY..thats the key"...so you and Bill keep posting pithy quotes and motivational aphorisms, and ill keep trying to help patients....thanks

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FYI- here is a 2014 nomogram in which you can input several prognostic variables to arrive at the median survival time among men with metastases who have not yet had chemo.

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

As always, with nomograms, they predict for the population, not the individual. This one is accurate about three-quarters of the time. Medians may be highly skewed in both directions. And nomograms may not have sufficient sample size to predict from a particular set of input variables.

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Great stuff !! thank you Allen !!

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I didn’t have two of the required inputs so playing with those numbers gave my husband max 28 months or so. Minimum he should be already expired which compares to what the MO recently told him—he is outside of his warranty period.

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They are just averages.

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I have a question for you. Just came back from urologist meeting for my dad. He has been doctoring for a slow growth cancer for several years. PSA will be down 12 today or has been as high as 400. They always give him a shot of lupron or now eligard. I convinced them to do bone scans and body scan. They found what appears to be a swollen lymph node in his pelvic region. Here’s the question,instead of doing a biopsy this time they want to do what they called a Auxium X-ray to highlight the region. I had not heard of this. Any thoughts. Thanks in advance

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It's an Axumin (fluciclovine) PET scan. You can read about it here:

pcnrv.blogspot.com/2016/12/...

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Thanks 🙏

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To give you a frame of reference, I had advanced statistics on the graduate level at the university. I chose not to have these statistics impact on my life. If I believed in these statistical studies then it was a 90% level that I would have died 10 years ago. I am a statistic of one. I am a 20 year survivor. I am blessed.

Rich

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Whether you believed in the stats or not would not have changed the outcome...thats like saying that seat belts save lives, but you dont believe it, so you dont wear the seat belt, and magically somehow that is going to save you etc

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I believe, only God in Heaven knows when I am going to die.

Rich

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" Only God in Heaven knows when I am going to die "-----how very very cute :-)

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Did you have bone mets all over your body and cancer in all your lymphs as well? IF so, then you beat the odds significantly...

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I have bone Mets all over my body but once chosen for departure by chemo these little buggers have a habit of recurring. And have no pelvic girdle lymphs as all eaten before diagnosis 4+ years ago. Am in year 7 of Stage 4 as no symptoms during what docs estimated was at least 4 years diagnosed. Remember statistics are fallible. I will not be a statistic until I die. Anyone so shouty and belligerent as Hidden I worry for. We cannot put off death by pretending that we are a different form of stat. Relax and live your life like the rest of us...to the full.

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I'm 6 years out, 31 psa , Gleason 9, 3 bone mets, doubling 5 months, M1. Before going on a clinical trial I did the kitchen sink on herbs and vitamins. Now it's just Xtandi and Lupron. After 6 years I'm still PSA undetectable, bone mets can't be seen, the two lymph nodes shrank to normal. Your statistics although true, doesn't count people who walked away from therapy for whatever reason. There was a guy on here his name began with a C. He got tired of the side effects and went into hospice. He died in 9 months. Same kinda level I was at. There are also those who lower the dose because they can't stand the side effects. Do they die early? There are those who won't go into clinical trials. You get free help there. If u retire and go stress free that's another factor. The proper study would have to ask all these questions. There are also new stuff coming out all the time. Taking away hope kinda implies you have all this data...

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Excellent reply. Totally agree with all you have said. We can all be focused on ourselves like hidden but I prefer to not focus on my own ego and to put the well being of other newly diagnosed men as a priority. Positivity is what is needed, there are enough battles we face without someone trying to tell us when it is likely we will die. Statistics are only accurate on the day they are calculated and often Prostate deaths include individuals who had poor health to begin with. 👍

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I am not a data scientist. I am a Broadcast Engineer and a bassist diagnosed with a Gleason 9 in 2007. According to the nomographs at the time of my diagnosis, I had less than five years. Yes that scares the life out of you. When you’re newly diagnosed, you don’t know where to turn, you don’t know who to talk to, you quite literally fear for your life. You may have family that you want to see grow up, graduate from high school or college, get married, etc.… All the usual things that most people take for granted. However, once you find out that you have somehow been “lucky“ enough to have contracted cancer, everything changes.

I’m not trying to deny the logic that goes into statistics. I’m not trying to deny that somehow I’ve beaten the odds. The only thing I have to go on with this is my own experiences… In my small circle of friends who have somehow been burdened with this diagnosis (and there are 10 of them), I have lost two. One of them was one of the healthiest, most athletic people that I’ve ever known, who came down with his disease just as the new protocol of doing chemo before ADT became the norm. I was excited for him, because I thought he will be OK… Little did I know that it would absolutely ravage his body, and he was literally gone before his fifth anniversary of diagnosis. My other loss came with one who had lived with the disease for number of years, although I’m not certain when he was actually diagnosed; I don’t think he made it to the 10 year mark.

None of my “data“ shown here is Scientific in the least; all I can say is 80% of us in this group are still here. Is/was everyone at stage four? No...but at least 60% are...and I guess you can say we should be more steeped in reality if you wish, but I honestly believe that attitude and focus help the outcome. If you live in fear of the disease, of the treatments, of what MAY happen to you, you’ll go down much more quickly than you might have...and many of us with PCa succumb to other diseases and complications, many cardiac related...so there’s no one magic answer to solving this - otherwise we’d have a cure!

My own opinion (and yours may vary) is that as a support group, we are here to help our fellow disease sufferers. For newbies, we help them navigate the waters, help them find Med Oncs who can help, give them information to let them formulate their OWN opinions on what treatment regimens will be the best for them. For others, we share info that we learn along the way. There are those who understand the medical studies better (Patrick O’Shea, Tall Allen, and further back, Chuck Maack) who let us know the best ways being presented from the medical community; we have Snuffy Myers, Mark Scholz, Mark Moyad and other medical professionals letting us know about the “cutting edge” of current and upcoming therapies; and there’s folks like Nalakrats and GusGold, who help to bring smiles to our faces as they go after the “gator Blood du jour” and other crazy things, as they continue to fight this disease as we all do.

I don’t think it hurts anyone to try and find some hope in this ocean of information - will everyone make it to the long run? No - but I do believe that many more are living longer today than they did 11 years ago at my diagnosis - we only had 3 basic therapies then, and it was ADT, Ketoconazole, and Chemo...Abiterone (Zytiga) was an experimental drug still in Clinical trials, and Xtandi wasn’t even on the radar yet. There was no Provenge, no targeted therapies, no LU-177, no alternatives...1/2/3 and you were done...Open Radical Prostatectomies (robotics we’re still in their infancy), Brachytherapy (seeds), and Radiation as an adjuvant therapy - there was no Cyberknife yet...so much has changed in a decade! I believe that’s hopeful - and I hope the newly diagnosed feel the same. Science is number and fact based, but new discoveries occur constantly - so why not have hope? Just my two cents...

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Great post, well written...well said....good stuff.

My experience was different..of the 2 men i personally know who had mets to bones and lymphs neither of them lived 6 years and they did the ZYTIGA, the PROVENGE the CHEMO, they did it all..one even did Xtandi...but i would submit, they made a grave error:

They did not do the Lupron Injections at the same time as they did the Zytiga, the FDA and insurance companies in the USA had not gotten on board that train yet..(oncologists love to give chemo, that is the business they are in)...they did the lupron injections, that worked for a bit, they did chemo, that helped, but not alot, they then threw hail marys with the Zytiga and later the Xtandi, and one did the radium 223 and they are both dead. One jsut under 6 years, one dead at just under 4 years...

So, when i was diagnosed in 2017 with literally bone mets EVERYWHERE, in every part of my hips, spine, both thigh bones, clavicle, every rib, and my lymph nodes, i went looking for the data....and had absolutely little or no help from the physicians are oncologists who either are unable, or unwilling, to speak simple truths...

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My biggest message to this group and others who will see this later: If your prostate cancer is diffuse and far reaching, well into the many bones and lymphs I believe it is a scientific fact (for now, as i type this in mid 2018) that Leuprolide injections (Eligard, et al, there are various brands) AND Zytiga AT THE SAME TIME, gives you the best chance to significantly extend your life. That is the data, as we know it, at this juncture. You must must must move the Zytiga up earlier into the treatment protocol...you cannot use the old school method of waiting for one thing to fail, before starting another....hit it with both at the same time..it wont work for all, and some will have bad reactions and not be able to continue with that plan. But that is my advice. Leuprolide and Zytiga at the same time for advanced prostate cancer to the lymphs and bones...

My PSA is undetectable as i type this in july 2018, and my bone scans look pretty darn good, and i was near death in sept 2017...my PSA was doubling every 14 days...it was 27, then 54, then 99, then 3 weeks later, 364...lol...(yes, every 14 days lol) What saved my life? Leuprolide lnjections and ZYTIGA at the same time

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Now that gave me hope. . I was given Zytiga,Prednisone,Eligard as my first line of treatments PSA went undetectable in just one month. Xgeva given to help with bone Mets. I always keep a positive attitude too cancer hates that. I live each day to the fullest, I love my family and friends for their never ending support, I learn from my Brothers in arms on this forum and have faith in my God to show me my path. Live your life and hope for the best. Leo

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I'm on year 6 with Xtandi and Lupron. Everything has like disappeared. PSA is still .02 or undetectable. I'm stage 4, M1 Gleason 9, doubling 5 months, and I'm now 65...

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Wattbc and all y’all, thank you for the info in this thread, i’ve been asking the docs, and looking on my own, as you say not easy to find good stats.

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yes, the odd thing is its not that complicated ..you create what is called a “cohort” and in that cohort would be several thousand people who were diagnosed in say, 2013, with prostate cancer spread to the bones etc...how many of them are still alive in 2018? 10%?, 31%? 40%? and what do we know about the inputs and attributes of the people in that cohort? how many of them died of something other than prostate cancer? etc etc..

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Brian, your posts here are sobering news, and I don’t take them lightly. I do, however, have questions, some possibly based on ignorance.

Stampede says that 63% of high risk men who take Docetaxel and ADT will live 5 yrs. I think the stats are similar for Zytiga and ADT. So where did you get your 5 yr survival figures from and why are they lower than Stampede?

You minimize the fact that the published studies are, by definition, all old. But the truth is that there have been no completed studies on “kitchen sink” approaches that good MO’s are starting to use - things like early Docetaxel followed by Zytiga and then radiation. We really are in an era of creative treatment, and none of us know yet how that will impact survival. What do you think that will do to the statistics of survival?

PCa is a very individualistic disease, but the survival stats do seem like they lump many degrees and kinds together. Common sense suggests to me that variables such as Gleason score, PSA at diagnosis, number and remoteness of Mets will correlate with survival time, but we don’t know how. Also, i’m Guessing that body mass index, comorbidities and fitness will likewise correlate. So I wonder how meaningful the one size fits all stats are for us? The message, I think is to do what you can, control what you can control, to get on the right side of the curve. Sounds like you were diagnosed with a grim prognosis. I think we are all curious as to what you did and are doing to put yourself on the right side of the curve? Frankly I am less interested in a debate over survival statistics than I am in knowing what smart men, and you are obviously one, are doing to improve their odds. The odds are the odds, but changing them is sometimes within our control.

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Hi Canohead,

Sorry Im diverting here the discussion but since I "met" you here I'll go on with the question.

Sometime ago you wrote that Zytiga caused your liver enzymes to shot up and some of us including me suggested you try Milk Thistle.

Can you share what are your experience with it so far? have your liver enzymes gone down? How is your treatment with Zytiga going (PSA/imaging wise) ?

I talked with MO about taking Milk Thistle and she didnt like the idea.

Thanks

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Liver enzymes still a little high, but better than they were. I told my MO about Milk Thistle, and he said he heard it was good for the liver and to go for it. Added Dandelion root to the Milk Thistle. Getting blood tested every 30 days. My bigger concern now is that hemoglobin is slipping down. Radiation Doc says that’s to be expected with radiation coming shortly after chemotherapy. Still concerning, because reduced hemoglobin has a known negative correlation with survival times

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Want to hear a funny story. I was going to a teaching hospital. My doctor had the same reaction to milk thistle. I then found a study she participated in where she concluded it was promising...for nude mice!

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lord, wow what a response.

I made a request some months ago to set up a plan of attack on treatment for end state PC. I did not get very much in the way of a response, nor has anything been done.

If nothing else, the best advise that we can offer to newbie's, is a plan, a chart, to allow them to get rolling on the battle.

Most docs are good people, they sacrifice a lot for the cause. That said, when I broached the issue of giving patients the truth, and nothing but, I was told repeatedly, that men do NOT want to know. I have worked with men for over 30 years and can attest to our pathetic way in dealing with issues. We instead, stick our heads in the sand, and wonder why we die 7 years earlier than women, the species we supposedly dominate.

I too, believe that patients should be told the truth, should be told what options are available-even if their facility does not offer some. I also think we should all get onto at least one drug trial-if for no reason then our dying might save some guy's life in future.

I have had far too many pals die when they should not have at that early stage of life.

I also think that one has to accept the war as it is, do not keep looking at some magic cure, that does NOT exist, at present.

Instead, make up your bucket list, get off your butt and rock on, for as long as you can, as best as you can, in all senses.

I have been at this war for 19 years now the drugs are taking a terrible toll, my brain is Turning to mush, but I still stagger onto my bike, take my hot rod out as much as I can, and keep rolling as best as I can. I am buying a small sailboat tomorrow and taking it to my grandson, and teach him to sail, for that is what is important, living, loving and memories!!!!

Let's not fight each other, with the war we are now battling.

Stay well, live large and make the most of each and every day, as best as you can.

billyboy

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Well. said Billyboy!!! I live like a Rock Star. A modest 64 year old Rock Star, but. a Rock Star non the less lol. Maybe one day your Hot Rod and my classic BMW 540i will cruise the streets together. Never give up never surrender. Leo

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There's something else to be said about your true statement: "men do not want to know". Unfortunately that seems to extend to even getting screened for prostate cancer. A buddy of mine thought he needed PC screening only once every five years. That stupid Preventative task force board, came out with a policy that men should get screened basically only if they felt like it, and that screening isn't necessary after age 70 (WTH?). Guess they don't want men troubled by ugly reality ... until the disease has progressed to metastasis and produce symptoms that can no longer be ignored.

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Stage 4 here 2 years ago , on the same treatment as you plus Xtandi. My doctor told me up front that I had a 50/50 chance of living 5 years when I was diagnosed. He doesn’t sugar coat anything. Now I enjoy hearing from the guys that are living the 10 plus years. It gives me and my caregiver hope for the future, have I cancelled any insurance policies No. but I hope to be one of those lucky ones that lives a extended amount of time. 😀😀 Fight the good Fight

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Thank you for saying this. It is very important for people to know this so they will be vigilant in staying on top of testing, blood work etc. My 49-year old brother, Doug, died June 19 this year just 4 1/2 months after getting his diagnosis.

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Hidden

Say we could get sufficient data, build a great sophisticated stochastic model with properly used parameters. Are you saying we then could use it to get a sense of what combinations of treatments are best for different conditions or something else?

After reading the back and forth of the posts, I wonder what are all the actionable recommended coming from your post: can you give a bullet list of such recommended actions, in addition to the stated multiple simultaneous treatments (perhaps moving up to earlier stages in the disease) rather than old school serially treatment process.

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Fritz Perl, a popular guru in the sixties, was fond of saying that “today is the first day of the rest of your life.” If he we’re still around he would probably tell us not to waste it trying to figure out what number we are in a study.

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Ah Gestalt. I've partaken.

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To Hidden a/k/a Brian Watt on Twitter:

From my prior post.

--------------------------------------------------------------------------------------------------------------------

Just for general information: Dr. Timothy Leary the LSD guru was diagnosed with inoperable prostate cancer in January 1995 (died May 1996) - meets your stats.

Note:

Dr. Leary's last book before he died was Chaos and Cyber Culture, published in 1994. In it he wrote, "The time has come to talk cheerfully and joke sassily about personal responsibility for managing the dying process."

Good Luck and Good Health.

j-o-h-n Sunday 07/29/2018 1:44 PM EDT

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And Rudy Giuliani is still going strong diagnosed about the same time as my hubby (2002?) with a different course of treatment. I think Rudy is younger than my husband and would like to know if he’s done ADT all these years. Anyone know?

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I'm sorry if I led you to believe that I was confirming "Hidden's" statistics regarding Dr. Leary's 17 month battle with Pca. I really should have mentioned that as a footnote. I was merely pointing out what he wrote about the dying process.

I don't know the answer to your question regarding Mayor Giuliani's course of treatment for his Pca. There are many men who are still not room temperature who were diagnosed with Pca way before 2002. So tell your hubby he's got lots of living to do and to enjoy every second of it.

Good Luck and Good Health.

j-o-h-n Sunday 07/29/2018 7:32 PM EDT

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Well, this chit chat on when to die was quite interesting. My oncologist also confirmed to me that the average Tubelar Prostrate Cancer patient lives between 3 -5 years. That gives me only six months to the 3year line. With a current PSA of 0.08, I am going to challenge the 5 year death line. Bottom

line: live positive. There is no point in sitting and wait to die.

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There are no longer any relevant statistics on death from this disease. With all the new and more powerful drugs targeting the AR and all the new advances in immunotherapy, this will soon become a manageable chronic condition where those who are healthy and fit will die of old age and those who let themselves go will die a lot sooner of cardiovascular disease. Each of us has the power to decide which group we belong in. I choose the old age death, hopefully in my nineties. If not, give me a clean death, a soldiers death.

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I refuse to look at mortality tables. I have never asked my MO nor will I. I am an individual, not a statistic, focused on maintaining the highest quality of life possible. Nor do I care much for the data in the brochures. Ever look at the "median" increase in lifespan in the abiraterone (Zytiga) brochure? Just 4 months (!). Does that stop many men from taking it...no, because half the 1000 men in the sample got more than 4 extra months on this earth.

Having said this, of course I've planned as best I can for my family, if and when the time comes.

I am Stage IV, with mets to my spine and lymph system. My urologist and oncologist and I are well-aware of the STAMPEDE trial results. I had a choice to make, and I chose Taxotere first, to likely be followed immediately by Zytiga. I will also be on Eligard (ADT) the rest of my life. So, as we all are seeing on HealthUnlocked.com, we are all on the same highway, just traveling in different vehicles (bodies) and at different speeds. I appreciate the diversity of the data and opinions that I read here...please keep it up. We are helping each other!

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When I began reading this post, you came across to me as someone that was having a bad day and you wanted others to also have one. Unfortunately, that might have happen for some. I noticed very little from you that helped anyone. Others may have a different option.

There is no need to go into my story but I can say 2 things. I am following one of 2018's best "plans" for someone like ME. I will still be here in 5 years... I will still be here in 10 years... I will still be here in...

Put it on your calendar to check on that every 5 years and include me in your stats...

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More living less typing.....sum of use guys kill me....18 mos into a 2 yr tod...and im doing pretty damn good...just had 6 th lupron shot so im tweaking at the moment....im i correct zytiga is 10k amo.?...maybe that figures in....peace to all...fuck cancer....

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Allow me to try and bring some sanity to the discussion. While I vehemently disagree with “Hidden’s” thesis, what if for arguments sake he is right, and this site really does raise hopes more than is scientifically accurate. And what if the discussions on this site about God and faith may not include science and fact based research? I ask, isn’t that the point? Can’t this site provide scientific based information and also provide hope and comfort to those of us dealing with a stage 4 PC diagnosis? Is providing comfort and hope mutually exclusive with providing science based information? Can’t this site serve more than one purpose “Hidden”? I could understand your concern if an overly positive picture of our future was preventing us from taking advantage of all of the latest medical options out there, but I don’t even think you believe that to be the case. So why on earth would it bother you so much if someone on this site happened to see something to make him believe he’d still be alive in 10 years when in actuality you think he’s going to be dead in 3 ? Even if you’re right, Wouldn’t that person be happier during his last 3 years having had hope and not focusing on his near future demise ? Do you think that persons last 3 years would be happier if only he knew your truth that he was going to be dead in 3 years ? Would you be happier knowing that? I surely do not think anyone with a stage 4 diagnosis is using the info on this site to avoid getting their affairs in order or to avoid using the time they have to try and enjoy their lives. And do you really think those of us who find comfort in a God (whom you obviously believe is a joke) would be happier if we only knew what you seen to “know” to be the truth of that God not being real?

I urge you to re read your own posts “Hidden”. You are so kindly taking the time to let everyone know what you’ve learned about early use of Zytega with lupron because you obviously want to help others. Awesome! But your scientific info ironically refutes your own position that we are all being too optimistic. Lupron together with Zytega was shown to increase life expectancy by 40% vs lupron alone. That’s the science. Doesn’t that fact alone change your life expectancy times dramatically. Consider all the other advances already in place plus the many promising new ones on the horizon since the statistics you site were determined. Couldn’t all that make your relatively dated stats way off for those of us here and now.

Why do you wish to give hope with one hand and then try and take it away with the other ? What’s your real purpose? I’m not a shrink but it seems pretty obvious. You’re scared to death like the rest of us. Your latest treatment has basically brought you back to life from the brink of death. How incredible! You even say about yourself that this new treatment protocol “saved my life”. Doesn’t it seem strange though to tell us that your treatment “saved your life” while explaining to the rest of us that we are likely to die sooner than we think ? Why didn’t you describe your own situation as having “hopefully given me a few more years” or “it will come back I’m sure but for now I’m grateful it’s working”? Isn’t the answer obvious? You are just like us. Scared to death that your next PSA read will be bad news and never knowing when or if that bad news will come. So like all of us you just hope for the best that it actually “saved your life”, as opposed to just prolonging it. But what if your hope or any of our hopes, is false hope and we or you get that bad news at our next doctor appointment? Will any of us (or our families) be worse for the wear having had hope for longer than was scientifically appropriate? I think not...

“Hidden”, I urge you to follow your instincts and use your obvious capabilities and desire to help others, to be a useful part of this special community by posting your scientific information. At the same time i urge you to “hope” along with us that you and as many of us as possible will be around for many years. Or at the very least, make the effort to allow the rest of us our own hopes and faiths, as opposed to trying so hard to squash them for reasons unknown.

Schwah

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I would agree with you if things had not changed so much since 2012. Newer statistics show that the latest discoveries have men living longer. I have PCa and I'm 6 years out on Xtandi and Lupron. Everything is still undetectable.

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I would love to take a look at the "newer statistics". Please link them. Thank you.

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What I meant by newer statistics is the recent finding on Lupron and abaratirone (Zytiga), allowing PCa patients a 40% survival advantage. Those who get Lupron and Zytiga together right away have great advantages. There are clinical trials for pd-1, how are those doing? There's experimental stuff with testosterone at John Hopkins that has facilitated actual cures. If one is retired NIH in Bethesda MD flys you there and back and pays for you medications, lodging and meals, go there , if you qualif and you feel there is nothing left in your area. How driven are u to live?

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Yes. It is good to be aware of actual statistics, but I do believe that optimism and hope are a PART of the best, most effective treatments.

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I understand and u are probably right. I just wanted to say the future could change the status. Crisper Cas 9 could be used with a couple years. This could alter things significantly on the genetic end. They're already using it in China.

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Many of us are shocked and frightened at our diagnosis. Then we have hopes raised and then dashed with recurrence or we just fear recurrence. Others are in a bad way right off the bat. Anger is an understandable reaction to being dealt a bad hand like we all have.

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Apologies if I sound like a broken record, but studies have shown that Firmagon (degarelix) is a better ADT than Lupron for MPC. It should be combined with either Docetaxel or Zytiga early on. I just don't understand why Americans are still using Lupron. Maybe as tall_allen said at one point perhaps it's a matter of cost. If so , it's a shame.

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Sometimes it takes a lot of repetition to get something through my thick skull. Your statement that Firmagon is better than Lupron is actually news to me. I know they each have different mechanisms, advantages, disadvantages, etc..., but why would one choose Firmagon over Lupron or vice versa? Do you have a a paper or data you can share that is a little more definitive? I am assembling as much information as I can so that when I see my MO in a month I can make some informed decisions. So far he has me on Lupron and Casodex for nine months after SBRT to to a bone met (failed RT in 2016 after recurrence following RP in 2015). Although I feel good, I can't help but think that we could intensify the treatment and be more aggressive. I might have to put him in a headlock to convince him.

Thanks. All the best.

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Hi jdm3. Firmagon (degarelix) is an antagonist as opposed to an agonist. It has been shown to be better in many ways than an agonist e.g. faster castration (low testosterone), faster PSA suppression, no clinical flare at the beginning, longer PSA PFS, longer suppression of ALP, greater reduction of FSH and LH - all of which are prognostic for longer survival. But there is also less risk of CVD, reduced incidence of joint, musculoskeletal and urinary tract AE. All in all it has been shown to increase OS.

These are some of the references for degarelix over an agonist. (sorry not sure how to make these 'live' links !

grandroundsinurology.com/ag...

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

ncbi.nlm.nih.gov/pubmed/246...

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

ncbi.nlm.nih.gov/pubmed/288...

medicalupdateonline.com/201...

Some people have problems with Firmagon because of site reactions, but these can be greatly minimised if it's injected properly. See my earlier post. The other 'problem' for some is that it is available only as a monthly injection (except in Japan). But frankly for me that's not a problem. I'd choose a monthly injection with all the benefits it has, over a longer term injection with fewer benefits.

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Ah ! I see that when you post it, the links become live : )

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Good information in a very comprehensive response. Thank you for taking the time.

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