I asked my Oncologist at MD Anderson what was the average lifespan for someone like me with stage 4 metastatic Prostate Cancer on Xtandi and Lupron. He said the average was 3-5. After a period depression from this news, would like to prove him 💀 DEAD wrong. Choosing diet ,exercise and supplements. How is everybody else doing? This was about a year ago.
Longevity : I asked my Oncologist at MD... - Advanced Prostate...
Longevity
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TomNew62
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Currently PSA at .000 after a year on Xtandi.
I've had Stage IV Mestatic prostate cancer now since 2011 and am still doing good. During that time my treatments have changed as the cancer has changes as well. I plan on being around for many more years.
Good Luck
Dennis
Same here 2011, stage IV G9 still going strong!
What were your treatments?
RP open surgery to remove max # lymph nodes.
Started firmagon shortly after surgery. Decided not to do any radiation. Firmagon was effective for about 3.5yrs(at which time I switched to lupron)
Added casodex which lasted about 1.5yr.
Switched to enzalutamide(xtandi) which lasted about 1.5yr. Tried zytiga for 0.5yr(slowed things down but not for long)
Now in combined xtandi/keytruda clinical trial which has held the beast stable(PSA still elevated but stable. Bone scan clean. Ct scan stable) for about 1yr(ongoing). Next step? Most likely chemo...
I was diagnosed in 2013. Gleason 8 started with Proton Therapy And seeds. Cancer came back in 2015 and went to MD Anderson and started Lupron. Provenge PSA started rising in 2017 and started me on Xtandi in 2018.
My oncologist gave me 3-7 years. That was 18 months ago, so I'm down to 1.5 to 5.5 years.
Like you, now I have a new goal - to prove them wrong.
While it's nice to hear from the men here who have outlived their prognosis, it proves nothing. We don't hear from the ones who died. It's called survival bias, and it taints a lot of statistics.
The truth is that none of us, PCa or not, knows when we will die. I happen to know some things about what is more likely to kill me, but I don't know when or how any better than anyone else. So I live my life to the fullest, trying to make the most of each and every day.
In that way the cancer has been a gift. I'm in better health, more fit, and focused on what really matters.
I agree
Everyday is unknown.... to all of us
But the people who have to hear somebody predict their mortality makes these people more aware
The rest of us just assume we’ll be old and slip away in a comfortable chair
Forewarned is forarmed
Very good. All wrapped up in an apricot kernel shell. From 1 and a half to 2 and a half, to now many years. What's the third guess going to be? When MO gives the third I think I'll look at her and say "You look like you're good for twenty more." See how she sleeps at night.
Its good you can look at things that way, for me it was pure hell until the last day of Lupron, after surgery and radiation, and I was proclaimed "cancer free".
Given 12-18 mo. over 24 mo. ago...now 5 yr average, leaves 3 yrs, but planning to be on upper edge of parabolic graph. Like 10 yrs or more. PSA bottomed at 0.122 and has been there for last 6 mo. after setting at 0.140 for six mo. before that. Xtandi at 86 mg reduced dose for 10 mo. and have my life back. Was complete invalid on 160 mg dose of Xtandi for 4 months after chemo end. Started Xtandi half way through my 9 dosed of chemo. and QOL went down hill for 7 mo. until I cut dosage.
Diagnosed in 2013 with a PSA of over 1700. Currently on Zoladex (goserelin acetate), Xtandi (enzalutamide), and Prolia (denosumab). I am now at six years and I plan on battling the beast for a good many more years. Stay positive, learn as much as you can, and don't ever give up.
Amen!! My doc told me to drink gator blood !!!!
DR never should have said this. Shame on him. My husband's initial MO in England, where we were living at the time, told him 5 years. That was 6 years ago.
The doctor ONLY gave him the average/median life span. And, the doctor was dead RIGHT.
The patient pushes the doctor to estimate his life span and then gets perturbed when the doctor tells him what the average is. If you don't want to get perturbed, don't ask the doctor.
I am a severe critic of most doctors, but in such cases they are NOT TO BLAME.
Yes I agree. I know it's serious, mestatase in bones and a lot of tired. But I just don't want to ask the doctor this question.
100% correct, Bedrich. Who on earth can accurately tell you the time that you have left ??? If, no one can, then why ask a stupid question ?? And compound matters by feeling depressed and go around blaming the doctor ??
Cheers, Bedrich.
Yes you said it exactly. No one can say when I will be here.
Darn it, Whatsin! You are positively ruining the blame part of my daily "pity and blame" routine! 
- Joe M.
I know a woman given 3 months tops and its 7 years later. No we do not hear from the dead as those mentioned, but i have been on sites where the members name gleason score dx date are listed and even while dying they posted, so it is possible. I forgot what site i found this on. But i went on trying to see what the median really is and it was somewhat depressing but science keeps growing so doesnt the median change as the field grows?
I've been on added Xtandi for around 29 months, and still going. Originally diagnosed back in late 2013 with many mets and a PSA in the thousands. A 5 year 5 month survivor, overall.
For the "statistics" from the prior clinical trial studies of Xtandi, see Sections 6.1 and 14 of the Full Prescribing Information:
astellas.us/docs/us/12A005-...
Note the very different conditions/criteria for the 4 major studies in Section 14.
When looking at the Kaplan-Meier curves, remember that 50% of the participants on an Overall Survival graph (or similar type of criterion) where it crosses 50% on the Y-axis on the left side of the graph experienced the non-survival event earlier than the Median time, and that the number of longer term survivors will appear as data points on the curve at the lower right.
(As mentioned in another Reply, some of the men who would have been on the upper left of such curves would less likely to be replying here. Some who may already be in the middle or destined to be on the lower right side of the curve would be more likely to be here and replying as individuals with their anecdotal experiences.)
We all want to be on the "tail end" of those curves.
Which reminds me of the hopeful classic "The Median Isn't the Message" by Stephen Jay Gould.
people.umass.edu/biep540w/p...
Life's here for meaningful living each day, .... not just being another day closer to dying.
Charles
Ty for gould link. Famous for his literary criticism, i never read this and it is brilliant ty!
Stephen Gould died 10 years later "He survived the illness through experimental treatment, but died of an unrelated cancer, in a bed in his library among his beloved books."
This is the Age of Euphemism. We no longer die, we "experience a non-survival event."
Gadzooks.
Ha. Ha. Ha. Ha. Good one! (I only worded it like that because at least one of the Xtandi studies measured something akin to a "survival" until disease progression, instead of Overall Survival.)
did you start your Xtandi while you were still ADT sensitive or resistant?
Resistant. After a PSA roller coaster from an original 5,006 at first diagnosis to 1.0 then back up to 95.0. (You can click my User Name to view my treatment summary.)
Don't let anyone tell you how much time you have. When I was diagnosed the surgeon told me I had 5 to 10 years, that was 27 years ago. Done with conventional and complimentary medicine.
mostg men with a psa of 1,000 have a very good chance of dieing soon. if they have a quick chanvge and their psa drops good its still not a guarantee that it won't jump up fast again
charlie
That's really positive Chalie :((
Well I don't know, I don't think that's right. I've read stories of people who have been here for a long time. I see that low PSA is not a guarantee of long life. My PSA was the most 21.7 Never went to 0. Nothing helped long. Zitiga Docetaxel now Jevtana. Each maximum of 6 months.
Have you had any genetic testing? I am BRCA2+. As a result I am prone to aggressive PC, which unfortunately I have been dealing with since June 2018. Gleason 10 with pelvic bone mets. Zytiga/prednisone failed after just 6 months and RP. Now on PARP inhibitor for past 2+ months, along with having recently completed Provenge immunotherapy. Staying positive.
I didn't have DNA testing. I have to ask if they did it without knowing it. But I know the doctor tells me that immunotherapy is not appropriate for me because of my type of tumor. I'm trying to be positive, but it's not always easy.
Totally agree!
As for the genetic test, I used color.com which was recommended to me by an Oncologist. You simply spit in to a tube and mail it back to the lab. Takes 4 weeks for results, with a detailed phone consultation from a genetic counselor included. Not expensive.
By having the test I was able to use precision medicine to determine my current course of treatment, a PARP inhibitor.
I've just spent US$ 4300/- approx for getting my genomic testing done by (Roche) Foundation One, based in the US. Lets see whether its worth it or more money down the drain, like the other treatments I have taken thus far.
Most is not all. We should all believe that we or our loved ones will be one those that do not fall in to that statistic. There are a few men in this post who have survived much longer than the statistics. The funny thing about statistics is that no matter what they are you never know what side you will be on. I prefer to believe and hope for the best.
I am 100% alive right now. If you are reading this, you are 100% alive too.
whatsinaname• in reply to
I am alive and kicking. But, to claim that I am even 80% of what I once was will be a blatant lie. Partly its age, of course. But, mainly its the cancer and the effects of all the drugs/treatments that I have taken (in the last 14 months).
Yes, I know, I cannot be 80% alive and 20% dead.
i didn't change my diet, nor exercise and i'm on my 11th year. what i did do is hit the cancer early and hard so don't believe what they say everyone reacts differently
charlie
I too haven't changed my diet or exercised. I also don't pray 
But, I am just 14 months out. I am sure if I die shortly, the above 3 reasons will be cited by gloating relatives
You are so funny whatsinaname. Gloating relatives. That is funny, funny, funny. Know an in-law who is really anxious to move into my house. Taking her out to pizza for birthday event. It's on my dime, cause, you guessed it, she doesn't have a dime. Gloating relatives. Can't stop laughing. Enjoy.
Thank you, monte1111 Glad you enjoyed it because it was meant to be funny Yes, Sir, enjoy life to the hilt Cheers, monte1111
I got less according to surgeon and urologist three years later there no experation date stamped on me in relation to this desease
Tom, I wish you the best of luck. I'm curious how far your prostate cancer spread?
In Nov I was diagnosed 1386 PSA extensive Mets to bones, Oncologist said 44 months from his experience and what he's seen on the PET scans. Got my PSA down to 0.4, blood counts are good so I'm feeling much more positive about my future. I'm sure I will hit a few bumps in the road, I have accepted my fate but I'm also not going to give up fighting it either.
Despite the pain and fatigue I'm trying to maintain a normal active life, my friends tell me to take it easy but I tell them "If I don't try and live my life to the full then their is no reason to keep living" We need goals and purpose to keep going, even if it hurts a little.
last October I was dx'ed with a psa of 1400 and so many mets , my mets had mets. my blood work looked VERY grim. a lot of bone pain too. I asked my doctor how long I had as well. my wife was with me. my onc doc said ( with " THAT " look on his face ) that everyone is different ( a good answer BTW ) and I should get my affairs in order and spend all the quality time with my loved ones as I could ..... and then brought the hospice nurse into the room to talk to both of us and begin to establish my hospice services. . I'm on Lupron - Xtandi - Zometa. well ....... it's over 5 months later and my blood work has ALL returned to perfectly normal and my psa is 0.4 and still dropping. I'm dramatically better than 5 months ago. I'm planning to hang around for a lot longer like everyone else here .... people are living longer with the newer meds like Xtandi and a large number of trials and new treatments are in the pipeline as well. I'm absolutely going to keep a positive up beat attitude if for no other reason than to help my loved ones go through this with me. it's not just about me, even though it's sometimes hard to keep that in mind. we'll all fight this hard ... we got this.
I was told 2 to 10 years but think 3 to 4. I was 49. Now at 54 I am still running ultramarathons round the world and next tuesday set off for the 560 mile Camino De Santiago. I have now been on Zytega (abiraterone) for 3 years following chemo and radiotherapy.My pca was spread to lymph nodes on diagnosis in my chest , neck and pelvis but nowhere else.
I am glad the doctor answered my question as it stopped me burying my head in the sand and made me realise that I need to live every day.
You know, you only have two lives and the second one starts when you realise that you only have one!
15 years ago the doc that did my biopsy told me that "I have the real deal" and estimated that I had about 5 years. Today, at 76 I still feel (and frequently act) like a kid!
Diagnosed in August 2005 with stage 4 already escaped to right hip Gleeson 4+4 and PSA 24-only treatment has been hormone therapy ,chemo and Xtandi -PSA is now 0.008 so my survival is 14 years in August this year
when did you do the chemo? How long did the Lupron alone last for before you added Xtandi?
On Bicalutamide and Zoladex PSA 2200 G 4+4... You can prove them all wrong add alkaline 9.5pH water and -ve Ions to your list. Oh and +ve affirmations absolute must :)))
With you all the way, literally!
Alan
what are -ve Ions to your list. Oh and +ve affirmations ?
Hi I have seen many variations of affirmations George. The best information however; I came across just very recent from Dr Wayne Dyer he says I am that, I am.. and then the affirmation goes in place of ‘that’ so for example I am perfect health, I am. Plus you can do breathing exercises to that positive affirmation another example; I am abundance, I am.
I read a personal account of a cancer research book, some guy from Australia, He is suggesting that our body because it’s an electrical system has negative and positive ions and generally speaking we are full of positive irons which is not good for defeating cancer or stabilising cancer or even curing cancer so the deal is to find a way to get more negative irons from the atmosphere and from the certain materials that give off negative irons. I wear some of that material.
Alan
Alancochlan@gmail.com
I agree with a bit of what Nalakrats says but not much.
I agree with the idea that no one knows. I definitely don't believe that the doctor should not have given an opinion based on the statistics of survival. Without that it is difficult to make important decisions about finance priorities et cetera.
Personally I would say there is no God, so no one knows is accurate. I respect others' views however.
All the people who write in with their stories about how much longer they have been alive than was suggested by their median survival prognosis, bias what is written in these forums. Those that have died earlier than their median survival, and there will be 50% of them, clearly can't write their stories. So "battling the beast" might make you feel better but makes no difference. Staying fit exercising and enjoying life makes a great deal of difference to your quality of life and probably a small difference to its length. Attitude makes no difference to length but does to quality.
Stories of people who live longer than projected MEDIAN survival do not change the accuracy of the initial projection of survival
Well said, Metungboy. I agree with you. Cheers !!
Yes, there is survivor bias here, but...
...based on what I've read recently (blog.dana-farber.org/insigh..., exercise may play a huge role in how long you live with cancer, but only about 30% of patients do it. There may be much to be learned from those who have far surpassed the median survival. The people that are alive and doing well years after diagnosis seem to have a disproportionate number of vegans and exercise nuts.
Let's not forget that the statistics cover a population, not individuals. There's always that one patient in the newspapers who was about to die, but then tried a new treatment and it worked so well that now they can't find any cancer.
And finally, over time new treatments are becoming available, rendering the statistics from just five years ago yesterday's news.
So by all means use the diagnosis and statistics as a reason to take the disease very seriously and "put your affairs in order", but also know that you can have a better than coin-flip chance of beating the median.
Have you taken into account the element of LUCK (pure good luck) in your studies ??? Also, do you think that PRAYER helps advanced cancer patients get greater remission and hence a longer life ?? Just asking as I would like to know your views on these points. Thank you, tom67inMA.
Luck is the most important contributor to outcome, but I don't talk about it much because it's not something anybody can control. A well designed study will have many participants so that the randomness of luck averages out between the control and test groups. I don't know how good the exercise studies actually are, as the link I posted above isn't a study but an article talking about the results of studies.
In my personal experience, I was very lucky to have a great response to Lupron, which allowed me to resume running during chemo (For all practical purposes I couldn't run at diagnosis and for a few weeks after due to pain and a catheter from bladder surgery). My opinion is that exercise is like taking a statin or metformin. It won't have a dramatic effect on cancer in the short term, but over months and years it helps maintain your overall health and probably makes life for the cancer cells a little more difficult.
As for prayer, it may work as a form of meditation, but I don't believe that God will hear prayers and magically cure cancer. Personally, I'd rather believe my cancer was caused by bad luck than by the deliberate actions of an omnipotent god. Such views have made for some uncomfortable conversations with my mom who is quite religious.
Thank you for the detailed, well thought out reply, tom67inMA.
I agree with you on the "luck" part. I'll skip the part on "exercise"
But, the part I found really interesting were your views on prayer.
Wholeheartedly agree with you there. What I find curious is that
despite being severely discriminated against in religious matters,
women are the biggest and most fervent supporters of the same.
Yep, my female relatives border on the fanatical. I keep a safe
distance from them
Thanks again, tom67inMA, all the very best to you.
If it makes you feel any better, I should be adding strength training to my routine and not just running all the time, but lifting weights is so boring!
I agree, lifting weights is BORING. But, for me, so is RUNNING.
And, running ALL THE TIME ??? I won't say more
You are on such a roll whatsinaname. I see you running down a street in Bombay, a group of gloating relatives, and a herd of fanatical female relatives right on your heels. And through the sweat on your face and through your clenched teeth you are mumbling, "Well, maybe running isn't so boring after all." Enjoy.
Hahahahahahahahahahahahaha,lol, lol, lol, lol, lol, lol,
I used to think that about weights too. Due to my work schedule I needed an efficient workout plan, since I went before breakfast on a workday! I usually did this two, and occasionally three days a week. Usually Monday and Thursday.
My workout pattern was 6-8 minutes warm up on an elliptical, then a series of weight machines. I pick ones engaging as many muscle groups as possible (e.g. a rowing machine for back and biceps, vs. isolated machines for each group). I do the "Nautilus" weight method, at least I call it that because it was in a book for those machines years ago. It's one set, heavy weight, to achieve "failure" (can't make another rep), within a specific number of reps. In my case, 8 to 12. So once I can make 12 reps at a weight, I increase the weight to drop to the 8 rep limit. Done in sequence, this will keep your heart rate aerobic. Twenty - thirty minutes on around 8 machines. Then about a 6 minute elliptical warm down, then stretch. Weights and aerobic workout in a single session. Rather gratifying.
This is actually kind of a fun method, with measurable results in an efficient plan. Now, with no testosterone the weight/rep gains were painfully slow, but it does give clear goals.
Thanks for sharing your routine! I'm still in the recovery phase from chemo, so the body goes wonky whenever it approaches its limits in any fashion. Doing reps to "failure" is quite risky at the moment. Last time I tried it seemed my sciatic nerve got all angry. Hoping those effects go away as chemo recovery continues.
I admire your strong opinion. I, however, disagree, humbly with this statement, "Attitude makes no difference to length but does to quality." This has not bern studied and proven. Mental state can change the bodys ability to fight for better or worse and that i do believe is studied by neurologists, though being so subjective may not be questifiable. I personally watched someone i love begin to die once heard stats of a year to two. If she didnt mentslly give up, i can not be sure shevwould have lived longer, but i did see how her attitude took part in taking her life sooner. Just my opinion. I respect all of your words.
• in reply toDaddyishealing
Attitude isn't everything, it's the only thing (you have control over). You do the best treatments available and try to make the best of what you get.
whatsinaname• in reply to
I very strongly disagree.
It has been studied. Evidence is clear. Unfortunately believing something doesn’t make it true. I will find the studies and post them on this site.
I will be eagerly looking forward to reading them. Thank you.
Here is one. I will find the others soon. I looked at this issue several years ago and found multiple references. This one is a reasonable start.
Cancer. 2004 Mar 15;100(6):1276-82.
I read the conclusions and totally agree with them. Of course, they apply to patients with NSCLC.
But, they should apply to other cancer patients or any patient for that matter.
I do believe this "be positive" bullshit is highly unprofessional.
At one of my first meetings with a radiation oncologist, I asked the quack what the plan was if everything did not go as per his expectations. He rudely told me that I should "think positively" and that by expressing "doubt", I was setting myself up for failure.
I kept my calm and asked him whether he had a Plan B. He said he did not need one as this was sure to succeed. Since my wife was me and as you guys know I am a thorough gentleman, I didn't pursue the matter further. I had wanted to give him the middle finger, but I held back.
I found another radiation oncologist, someone who had a PLAN B & PLAN C to fall back on. That even that didn't succeed is another matter. Put it down to my lack of "positive thinking", my refusal to change my diet, my refusal to pump iron and my refusal to start praying for mercy to the Almighty
Btw, all of this happened in Bombay. You guys in the US probably don't have as much excitement thrown in All for free
Cheers, Everyone.
• in reply toMetungboy
I agree that believing something doesn't make it true. My point is that you have to do everything you can to try to keep a good attitude.
Metungboy• in reply to
I agree but the important reason to have a " good attitude" is that there is clear evidence of quality of life enhancement.There is no evidence of length of life enhancement.
I think being positive as is as wrong as being negative.
Being accurate and realistic is by far the best.
When people believe that their positive attitude will save them it is akin to believing in prayer.
Prayer clearly is evidence free and in my mind quite bizzare.
It, like deluded positivism, may make people feel better at the time but does nothing else.
Have a look at this if you are game.
He is an Aussie atheist like me but very smart.
youtube.com/watch?v=JipYDDX...
Superb stuff, Metungboy, thank you very much
Atheism is a religion. Atheists try to push their beliefs on others far more than any other religion except maybe the muslims.
You are kidding?
In Australia the government is trying to push a “religious freedom “ bill which, if it passes, will allow religious people to break the laws of the land if their beliefs are in conflict with those laws.
What a disgrace!
Talk about inflicting beliefs on others!
No hiring of gay teachers in religious schools for instance.
The founders of America fled England so they would have religious freedom and not controlled by government. I don't know what Australia was founded on but there's nothing wrong with not hiring gays if it's against the beliefs of the religion. There are tons of other schools that are not religious or their religion allows homosexual acts from their practitioners. It doesn't make sense to be gay and want to be part of a religion that believes homosexuality is a sin. Many of the gays just want to tear down organizations/religions that dont fit their behaviors. The homosexuals can start their own religion and hire all the gays they want.
I couldn't disagree more!
What about female circumcision?, ok and sometimes mandated in some religions.
The laws of the land should always have sway over religious laws.
I am all for having people believe whatever they want, flat earth, son of god, Buddha , anything is and should be allowed.
Not actions though and not differential taxes.
Freedom of thought and belief not freedom to act against the law of the land based upon those beliefs.
Not freedom to treat me differently to you based on our differing beliefs.
If Jesus was alive today I bet he would support my view, not yours
Well i disagree. So we both disagree. You're wrong about every point. People have freedom to take orders however they want. That's freedom of speech. Governments after the religion of atheists. Governments are often dangerous when they become to big. Governments make laws that should be good for the majority. When special interested groups hey pandered to, the majority suffers.
Jesus either super your views. That's why the Bible says that homosexual acts are a sin. You need to start your own religion but it will be against the teachings of God. And by the way, Jesus is still alive. He sure at the right hand of God, in heaven. You can take to him whenever you want, with prayer.
everyone is different , some live long and others not so. everyone reacts to the cancer. some is the drug or have the $$$ to do experiment trial drugs
charlie
My husband will be 2 years in August. Diagnosed at age 49. PSA >677, multiple mets, had been a year and a half of sweats, fever, catheterizing... before diagnosis and PSA test. He did lupron and Docetaxel as soon as diagnosed and now Zytiga and Prednisone since 3/18. PSA currently 8.9. He is in no pain. He did decide to go completely plant based vegan at diagnosis- I think he needed to feel he could do something in his own control. He has stuck with this diet. He also works out and is active- but always was before.
I'm happy our docs didn't give any longevity range. We decided to really be grateful for each day anyway- but I think it gave us hope that he said that "there are no stats for longevity with current medications and protocols" and that they've realized how different each individual is.
Totally agree with a lot above. Get affairs in order (should anyway) and live each day with no regrets (should anyway!).
any issues with blood pressure are heart concerns on the zytiga?
He hasn't had any issues with either of those. It will be 2 years in March!
I also was told less than 4 years to live with stage 4. That was 10 and 1/2 years ago. Still going strong. Keep that positive attitude and get out there and enjoy life.
I'm only 1 year into it but doctor never gave me a time and i decided not to ask. I hope to be one of the long timers and stick around. I'd like to know i can keep being a pain in the arse for somebody somewhere each day.
Interesting. conversation, folks. There seems to be a statistical bias regarding those who have died and can’t vote on this issue. However, their next of kin could on their behalf. Honest! It happens in Chicago all the time. 😉
Statistically speaking, 50% of you will be 90% correct 25% of the time, adjusted for a margin of error of 5-10% for the 15% of you who still text while you drive and will probably die 35% sooner. The only number I’m pretty sure is correct is that 100% of us will be dead at some point in the future. To paraphrase Guru Yogi (Berra), 90% of life is half mental. Gotta run...I’ve got a 9:30 tee time. 🏌️⛳️😎.
Live life like there’s no tomorrow. One of these days you’ll be right.
Excellent humor, Litlerny
Tom,
Why ask for the average? You need to know how the top quartile fares.
I have a number of old posts that look at the evidence for supplements, etc. But I suggest that you start with my posts on inflammation & then move on to those on coagulation.
Best, -Patrick
Yes my oncologist said about the same. 50/50 chance of 5 years. I love to read about the guys here that are going longer 😀😀😀. Fight that monster. In working on 33 months myself 🙏🙏🙏🙏
If you ask them they will give you a time based on statistics, because that’s all they really have. I was Gleason nine with bone Mets in my spine, ribs, femur, and frontal bone and many lymph nodes in my abdomen. In May 2014 they gave me five years, so that would be next month! And here I am! Now this past February they told me 18 to 36 months even though my PSA is zero and my lesions are stable. If you looked at me not knowing you would never know I was sick and I live a decent quality of life. Yeah the meds suck, but being alive and hanging out with my wife and my kids and getting to see my granddaughter is wonderful! Keep the Faith
I bugged both my drs at MD Anderson until the day I finished my radiation.
Couldn’t have gotten an answer to that question if I would have threatened their lives. Not sure I really wanted an answer just the best treatment they had to offer and I think they did that. Very optimistic place I think everyone with this shitty disease should get a opinion from a comparable center.
If you don't want to know then don't ask. Real simple. It you do want to know then ask, and expect an honest answer. Should they tell you the median? Why not, provided you asked. That info is readily available anyway. Nobody can say how long anyone will live but median survival rates are known.
I am in a very similar situation. Diagnosis about 10 months ago with Stage IV. On Lupron and after 6 cycles of docetaxel, my PSA has dropped from 148 to 0.16 and is still dropping, and my bone scan hot spots are all cold now, so I am pleased. Diet and exercise are important for your overall well-being but don't lose track of medical treatment. If you are not connected to a major research center, make contact. I have relationships at 2 prostate cancer groups at big cancer centers, in addition to my own oncology center. I keep them posted and seek their advice as things develop. Keep in mind, the 3-5 is an average, and better than it used to be. The range is much wider, with potential upside with new treatment. There are several things that may influence the outcome. How was your response to initial treatment? Ask about additional androgen deprivation drugs and chemotherapy. Ask about mutations in your biopsy that may qualify for later treatments like a PARP inhibitor or immunotherapy. Also, keep in mind that the prognosis data are based on treatments with older standard therapy and not newer and current standard treatment, and the prognosis based on newer treatments may not be known yet - it's too soon. And there is all sorts of stuff in the medical pipeline currently under investigation, some of which may become available during the 3-5 year time frame. Finally, you may be eligible for investigational agents when your current treatment stops working. Always ask your oncologist what is new, and about things you have heard about through the grapevine.
All of you, ty for the inspiration, the realization, and the laughs. In awe of the great attitudes!
I've not asked the doctors the hard questions. The oncologist probably wouldn't answer them if I did ask. My first urologist was completely up front with the current stats if I choose NOT to be treated. My wife DID ask my current urologist those hard questions though. He said, "If something should happen in eight years, you need to understand that we did everything that we could do." So yeah. Everyone has a shelf life. But I figure that mine is a bit more obvious and it's a gift, in that we can put our affairs in order for that day. But then again, who knows. I could get tagged by a speeding bus tomorrow. Stay positive and expect the unexpected.
About the same prognosis as you. 20 months out now. They are going to be wrong however. Gods will be done!
The future is hypothetical. Trying to predict it is unlikely to be accurate and more likely to lead to a lower quality of whatever life you have left. There is only time that you can live and that time is now. Get going!
whatsinaname• in reply to
Agree here, 100%.
My Dr says no one knows. Very unprofessional to give a time frame. I would tell him to pound sand. Only God knows
Agree with you except the part about God knowing
We do not know for sure whether a God exists or not.
Of course, more than 90% on this board are SURE that God exists
Good for them To each their own
Cheers and all the very best, jkholmes. Your doctor is a professional.
"There are three kinds of lies: lies, damned lies, and statistics." I never asked my Dr. because I didn't know how long I had before I had cancer. Did anyone else? Sorry, but I am too busy living. BTW, everyone should always "have their affairs in order". It is common sense.
Did you know that "common sense" is not so common ??
That is why a reminder to "get their financial affairs in order" is a good thing.
Good point.
• in reply towhatsinaname
I think it's a good idea for everyone to have their affairs in order, regardless of their current state of health. Lots of people get no warning when they reach the end of life.
whatsinaname• in reply to
Agreed.
When you leave out question if castrate resistant or not, and all existing co-morbidities, the question, statistics, and debate are all irrelevant.
Statistically the answers to these questions are of utmost importance to the discussion.
Didn't quite get you. Could you re-phrase, please ??
What I suggest is that any question asked of your physician of how long have I to live with my advanced PCa depends on many variables beyond a diagnosed of advanced PCa.
Examples:
1. Co-morbidities. Do I have diabetes, a bad heart, Aids, kidney disease or any of a multitude of potentially fatal health disorders that are possibly going to kill me before my advanced PCa will.
Overall survival means when will I die,,,,not just a PCa specific death but from any cause, including getting run over by the proverbial bus.
2. Have I become completely castrate resistant, not only from standard first generation Lupron’s, Casodex, Flulitimide, etc, anti anti-androgens, agonists etc, but additionally 2nd generation Zytiga’s Xtandi’s etc.
If not castrate resistant to all of these, you could live for many, many years. If castrate resistant your chance of an extended life expectancy is quite problematic unless some of the targeted immune therapy drugs(Keytruda, Opdivo, etc) or LU xxx infusions such as Lu 177 begin to bear fruit,,,,which hopefully they will in order to wean men from the devastation of hormone therapies.
Non castrate resistant you could survive indefinitely until a co-morbidity introduces you to your maker. Castrate resistant, you are damn luck to make 5 years or even 3 in many cases.
Without a full disclosure and understanding of these variables, my point is that a generic question of how long might I live,,,,statistics are meaningless.
Additionally into this mix I have long strongly suspected that the aggressive therapies prescribed to save our woebegotten butts from the ravages and deaths from this disease,,,in fact take far too many of us to an early grave. There is little argument what it does to the QOL for the statistically benefits they provide in overall survival.
I have long been astounded at one often published statistic now that we are into the subject.
One man in 6 or 7 is diagnosed in the USA with PCa. I’ll buy that.
Then it is suggested that only 1 in 6 or less will ever die from it. Do you believe this us true?
My point goes as follows.
PCa in general is a disease of older men hitting a peak number diagnosed after age of 65.
What else happens at 65,,,it is the start of a vast myriad of possible fatal diseases.
So one is diagnosed with PCa at 65, has his RT or RP, has 5 years of throughly comprised QOL in a majority of those treated aggressively, but is deemed cured. At 72, has a stroke, heart attack, diabetes has caught him, run over by the bus.....,,,,guess what,,,,,his death goes into the winner’s circle as a cured of PCa victor.
Statistically if he had undergone no treatment at all, 10 year survival is very close to 100 percent,,5 years so close to 100 percent the difference is almost background noise. And with little impact on QOL.
One other small point. Everyone knows of those who have had RP, RT, years of ADT, etc. and are alive and kicking 15 years later. Going back to where I mentioned that only some 15 percent of men diagnosed ever will die a PCa specific death. That suggests that 85 percent will not,,,,,those numbers plus or minus in a fairly tight circle are regardless if the men were treated very aggressively or had no treatment at all.
Only 2 long term studies have been done on this topic. Confirmation by these 2 studies is quite enlightening.
Sorry you asked what time it is, I went off into how to build a watch.
Please excuse typos
Good reply. Thank you, Sxrxrnr1
So many positive men! I love it! Keep it up!!!
Despite the immense "positivity", most of the men just cannot "keep it UP"
Proving my point that being "POSITIVE" is not enough.
Just kidding
I know too well, but with my husband being positive is enough for me!
All the very best, Mamabakes994.
All the best to you too!
Hi Tom, I too am stage 4 Gleason 9, and will be on year 4 from June 5. Let's prove the doctors wrong. Hang in there. CLEMENS
Don't worry about how long you will live, worry about how you will live.
I was talking to my doctor one day and he asked if I was going to work during my treatments. I told him I had 10 to 12 more years before I could retire. He told me I would be lucky to get ten. While next June will be ten years and I feel good. If I feel much better I will be forced to get a job. As fast as things change now, you could be living a long life. Medical discovery's are coming fast and furious for prostate cancer. Just shorten your vision and enjoy your now. There are way to many thing in the pipeline to worry about a grim future that many never come to past. Enjoy your now.
• in reply toGoEZ
Right on. I've had so much more peace learning to live in the eternal now.Time becomes much less relevant. We still plan for the future, but we exist in the moment.
Tom...I’m assuming you’ve been through ADT+3? I don’t have the experience with Xtandi as my cancer was “ regionally contained “ and I’m out of surgery 13 yrs. But, you’ve got MD Anderson on your side and there is no better place to be.
Best regards,
John S. Prostate Ca. Survivor since 2005
I was DX in 7/2017 with Gleason 4+5=9 with examined tissue from prostrate biopsy in high percentages of tumor (95%, 95%, 85%, 70% , and 60%). 'Innumerable' mets! PSA approaching 4000! Was told I wouldn't last 3 months without treatment. Fortunately for me I had an excellent MO who put me on Zytiga & Prednisone one month after DX. I was already on Lupron and, for one month, Casodex. I stayed on Lupron in combo with Zytiga/prednisone.
Turns out that I feel like I'm a poster child for these meds. Testosterone and PSA rapidly shot down to near zero. Living a normal life for a 78 year old man. A few hot flushes now and then, but nothing to worry about. I'm a devout Christian and can easily accept my life as it stands now. I wish that more people could see God's design in the universe and look forward to life after death---an eternal life with God! Mean while, live each day as it comes.
"Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof." [Matthew 6:24]
Muffin2019• in reply to
Great attitude, keep it going.
For me.... I'll live forever..... Cause my doctor told me I would die when I get a hard-on.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 04/26/2019 7:02 PM DST
Provided you can understand it - more details on urotoday.com . I think the study was originally from PubMed.
"External Validation of the Prostate Cancer-Specific Comorbidity Index (PCCI), a Claims-Based Tool for Prediction of Life Expectancy in Men with Prostate Cancer.
April 26, 2019
Accurate assessment of life expectancy (LE) is critical to treatment decision making for men with prostate cancer. We sought to externally validate the Prostate Cancer Comorbidity Index (PCCI) for prediction of long-term mortality in men with prostate cancer and operationalize it using claims data. "
Wow - great post with some great answers that span the globe and the spectrum of belief. So I will weigh in, TN62 - we are not a statistic until (as someone wrote) we experience the "non-survival event." Then we go into the books. As an engineer and scientist, I firmly believe that these median stats will be higher for the (unfortunate) future generation of APCers based on our experience - will it push to 6, 7, 8 years? Higher? We are making that a reality. In the meantime, you are in charge of your own journey...educate yourself and follow your instincts based on this knowledge. May we all end up on the high side of the Gaussian distribution!! ..... Cheers - Joe M.
When first diagnosed and knowing little, I asked my MedOnc at MD Anderson the prognosis question, looking for averages. She said "Only God knows" and refused to give me any info of that kind at all. I later asked another well-known oncologist what I could expect. What I really meant was symptoms, timing of progression, etc., but he answered "If you're still with us in 7 yrs, we've hit a home run."
Well, I intend to be around way longer than 7 years, but it's true, only God knows. I'm planning to hit a few grand slams, and I figure attitude is huge.
Sxrxrnr1in reply to whatsinaname
22 minutes ago
What I suggest is that any question asked of your physician of how long have I to live with my advanced PCa depends on many variables beyond a diagnosed of advanced PCa.
Examples:
1. Co-morbidities. Do I have diabetes, a bad heart, Aids, kidney disease or any of a multitude of potentially fatal health disorders that are possibly going to kill me before my advanced PCa will.
Overall survival means when will I die,,,,not just a PCa specific death but from any cause, including getting run over by the proverbial bus.
2. Have I become completely castrate resistant, not only from standard first generation Lupron’s, Casodex, Flulitimide, etc, anti anti-androgens, agonists etc, but additionally 2nd generation Zytiga’s Xtandi’s etc.
If not castrate resistant to all of these, you could live for many, many years. If castrate resistant your chance of an extended life expectancy is quite problematic unless some of the targeted immune therapy drugs(Keytruda, Opdivo, etc) or LU xxx infusions such as Lu 177 begin to bear fruit,,,,which hopefully they will in order to wean men from the devastation of hormone therapies.
Non castrate resistant you could survive indefinitely until a co-morbidity introduces you to your maker. Castrate resistant, you are damn luck to make 5 years or even 3 in many cases.
Without a full disclosure and understanding of these variables, my point is that a generic question of how long might I live,,,,statistics are meaningless.
Additionally into this mix I have long strongly suspected that the aggressive therapies prescribed to save our woebegotten butts from the ravages and deaths from this disease,,,in fact take far too many of us to an early grave. There is little argument what it does to the QOL for the statistically benefits they provide in overall survival.
I have long been astounded at one often published statistic now that we are into the subject.
One man in 6 or 7 is diagnosed in the USA with PCa. I’ll buy that.
Then it is suggested that only 1 in 6 or less will ever die from it. Do you believe this us true?
My point goes as follows.
PCa in general is a disease of older men hitting a peak number diagnosed after age of 65.
What else happens at 65,,,it is the start of a vast myriad of possible fatal diseases.
So one is diagnosed with PCa at 65, has his RT or RP, has 5 years of throughly comprised QOL in a majority of those treated aggressively, but is deemed cured. At 72, has a stroke, heart attack, diabetes has caught him, run over by the bus.....,,,,guess what,,,,,his death goes into the winner’s circle as a cured of PCa victor.
Statistically if he had undergone no treatment at all, 10 year survival is very close to 100 percent,,5 years so close to 100 percent the difference is almost background noise. And with little impact on QOL.
One other small point. Everyone knows of those who have had RP, RT, years of ADT, etc. and are alive and kicking 15 years later. Going back to where I mentioned that only some 15 percent of men diagnosed ever will die a PCa specific death. That suggests that 85 percent will not,,,,,those numbers plus or minus in a fairly tight circle are regardless if the men were treated very aggressively or had no treatment at all.
Only 2 long term studies have been done on this topic. Confirmation by these 2 studies is quite enlightening.
Sorry you asked what time it is, I went off into how to build a watch.
Please excuse typos
Every human who lives is in the same boat. I don't see a difference between me and someone who will die from something else. Yes, my life will probably be shorter than the average, but that doesn't mean it can't be better.
I had PCa for 11 years and now it is gone, but I am still alive! They gave me 5 years in 2007. I was depressed and got my affairs together, but I didn't die. I wish you well.
I am not sure if a woman’s POV is welcomed here, but I found this forum link on Reddit-the prostate cancer sub. If I may, I would just like to share my husband’s story.
He was 55-excellent health, very active, over abundance of energy; also, never smoked or drank and at 5’7, never weighed more than155 lbs. He worked two jobs by choice and kept a large and immaculate garden and yard. After shoveling snow one day in the winter of 2017-a pain in his hip took him by surprise. Then a freak sinus infection turned into cellulitis in his entire face resulting in seven days IV antibiotic infusion.
At this point he decided to tell the doc he had not had a physical nor seen a doctor, for any reason, for 16 years. Never a sick day did he have. He had his first physical exam since age 39 at that point.
We were completely floored when the blood work found a PSA of 27, biopsy found Gleason 9-stage IV metastatic into the pelvic bones and bladder. This was April 2017. We were referred to an excellent cancer center and world-class doctors.
He had lupron, radiation and chemo. Was stable for many months-PSA of less than zero, was still active, maintained two jobs and a yard. November of 2018 a single incidence of tremendous pain and scans found advances into the spine and brain. Treatments were aggressive with whole- brain radiation then more chemo-always the lupron. Found more advances in February-started Keytruda. His decline came fast and furious after the first of March and he died March 14.
For what it is worth here-he and I were determined, 100%, to outlive the odds. We were united in constant positivity and looking forward to being part of that percentage of long-term survivors. It was not to be. He died just shy of 58 breaking my heart and whole world at 49.
He had always taken care of me through 27 years of marriage. I knew very little about our finances, car maintenance, yard work or home repair. He was cognitively able to teach me for about one month before the cancer of the brain took its toll. We just assumed we would have all the time in the world to figure all that out. He felt and he told me that if he let go of all of his responsibilities, it was somehow letting the cancer win.
To feel and think positively is the only way to live your life after your world is enveloped with cancer. But please do share your responsibilities, educate your wife and kids in all things that they may be responsible for should you not be able and/or are gone from their world. (And a PSA is not always the indicator of disease progression. His last PSA was still less than zero).
So important to remember that tomorrow is guaranteed to no one, cancer or not. Sharing responsibilities and info with spouses and families is crucial.
Thanks so much for sharing your story, Widow314. Any man facing serious illness and decreasing capabilities too often has a hard time of grieving for his loss of abilities and his former roles in life. He has to relearn how to ask for help with things, and how to know his evolving limitations. There are sadness, humility, and courage in the mix. For many men it is a reversal of much of what was instilled in us as we grew from boys into independent, capable men. The love and support of a spouse/caregiver surely helps a lot.
In our case, we did some Estate Planning and other documents updates in the first year after diagnosis. The practical transition and learning of other weekly, monthly, seasonal, annual things and activities from "me" to "us" to "her" has been done a little at a time. Luckily, I've survived for several years. I also found the use of a "Planner" type of book helpful for collecting information in one place. Here's just one example among many available for that purpose:
(Click on the Table of Contents tab.)
store.nolo.com/products/get...
I must admit, though, .... it is challenging to "let go" of much of the stuff related to things like automobile stuff, yardwork, and the responsibilities for various accounts & bill paying, etc. For some of these losses it was because my treatments & side effects reduced my capabilities and affected the life roles I formerly did with ease. For others, it just made sense to do the communication and transitioning sooner, rather than later. On the other hand, it has brought us both some more peace of mind. Fewer distractions from the really important parts of living/loving in our lives together for as long as we have together.
Charles
Wow.. thank you for your post.. we (I) need to hear that. Sobering but needed.
Fantastic post, Widow314, one of the BEST that I have read thus far on this board.
I hope that you are managing things well after his passing ??
All the very best to you.
Thank you for your reply to my post. It was written when so much came at me all at once. I have been so blessed with wonderful neighbors and family who help me so much. Some days I am so melancholy. There have been one or two days, just recently, when I felt almost normal. It was when I was caring for the roses he loved so much and I was feeling like he would be happy with my efforts. So I live for more of those moments
I can only hope that time will heal. Please continue to tend to the roses that he liked so much. Anything that gives you happiness is good. I feel for you.
All the very best, Widow314. You deserve to enjoy life even now after your dear husband's passing. Please try and enjoy life as much as you can. I am sure your late husband would be happy if you were happy.
I'm 7 years out. Basically it's has been Lupron and Xtandi. Stage 4, M1, 31psa at diagnosis. Did a ⛵ full of supplements during the Lupron only phase. NIH added Xtandi 4 years ago. I stopped eating meat, always free range chicken , fish, things along those lines. I take spices off the spice rack and stuff gel caps...wash down with gaviscon. I take an empty spice bottle and fill equal parts; curry, allspice, oregano, ceyenne pepper, etc. Drink Pom, green tea, pray. So far NIH does tests up the kazoo, PET, cat, bone scan. My cancer is asleep for now... I'm 66, dx at 59, don't smoke or drink, 7 years out , PSA .02. After first visit NIH flys me back and forth now for 4.5 years, every 6 weeks. I was told initially I'd go 3 to 5...years. In my opinion everything helps. Genetics is a big factor too. Good luck.
Genetics do help, my mom and grandmother lived to 95 but my sister passed from lung cancer (never smoked, ate healthy) thus year. My brother is 80 and is in second but with cancer, treatable but not curable so he joins me in being a cancer survivor .
Kevin, How are you doing these days? NIH pays for your flights?
If you are signed up for a clinical trial, you have to pay for your first trip. You then, if accepted into the trial , get transportation paid for and trial drugs paid for, also partial reimbursement on food and lodging.
Great, I think NIH blacklisted me for complaining about the poor treatments at received at Walter Reed. Which trial did you participate in? How are you doing with your cancer battle these days?george
I doubt NIH would do that to you. I've been unusually sensitive to Xtandi (and Lupron). I was diagnosed in 2012, so 10 years roughly, with a Gleason 9, and PSA at 31 at diagnosis, I've been .02 for 8 years on these 2 drugs.
Well, i think that because they scanned me with pmsa/pet and called me to join a biopsy program of the cancer spotted on psma pet. When i asked a few questions, they got transferred to the actual doctor, who responded by saying that my doctors at Duke could do that, which of course wasn’t going to be ordered by my Duke oncologist because they are never as proactive as nih programs.
That’s fantastic news that the combo is working for you.
Why did they choose xtandi for you vs zytiga? Was it based on biopsies?
Why do you make the combo pills instead of just sprinkling those things on your food? What does the gaviscon do, cost the stomach lining? What kind of adt did/are you using? I was on lupron but now on orgovyx.
I took mainly Zyflamend whole body as a supplement. Sometimes that gave me heartburn. I started out only on Lupron then my local oncologist added casodex for flare. ( Just for two weeks). After 2.5 years my psa went up so I applied to a clinical trial; Xtandi alone or Xtandi and prostate , (a fowl pox vaccine). I got in the 'Xtandi alone' arm of the trial. ( I still had to take Lupron). Since then I've been at .02. NIH, also ran blood tests, bone scans and CAT scans every months. I had 3 bone spots that disappeared. So far , do good and I recommend clinical trials to those who have time for them or retired.
I meant prostvac , a fowl pox vaccine.
That’s awesome. How have the side effects been on you? Tiredness, blood changes? Heart issues?
I have multinodular hyperthyroidism so I have to take atenolol and tapazole. It causes hypertension I also take antidepressants and Klonopin at nite to sleep. It might seem like alot but my blood parameters are normal.
That’s tough but you are doing a great job fighting everything. Did xtandi cause the hyperthyrodism? What was your thyroid level from testing, before you started taking the thyroid meds?
I had the diagnosis of multi-noduler hyperthyroidism before I was diagnosed with stage 4, M1 , prostate cancer. Unfortunately, hyperthyroidism causes panic attacks, general anxiety, depression as though you had a mental illness. Psychiatrists never test you for it, and they should, before putting you on psychotropic medications. Ironically, desimpramine, prozac, and Zoloft slow down prostate cancer. Aspirin does this too, so does tagamet. I took a lot of these, now I take Celebrex and Zometa. These things shouldn't be substituted for real therapy but along side it, I believe it helps.
Prove him dead wrong
People here will help you
They have time
Empathy
Research from far and beyond
And...
They really get it
Read on
And see the years they have savoured
Everyday we are all closer to a use by date
Day by day
Focus on good results
Ways to modify side effects
Read the humour on this site ( some of it cracks me up)
I wish you the very best on this crap road trip 👍
I was going to reply to this. I noticed that your husband died. I am very sorry for your loss, and I hope you are finding some daily happiness even though you won’t fill the void completely. Time will fill the pain of your loss though. God bless you. Stay busy with social activities with friends. ✝️🙏😔
I am at two years. Did zytiga, followed by a trial at MD Anderson. Beginning a new trial in 36 hours. PSA always was fairly low but has jumped to 180 two weeks ago from 36 in May. I hope for best for both of us. My MO says I have under two more years to live. Stage 4, Gleason 4+4
I’m reading: How To Starve Cancer and taking lots of supplements.
I have been on Lupron since October 2018 and had 6 rounds of chemo. Now on lupron & Xtandi. 4th week on Xtandi and the rash and/or hives are bad.
I agree with many here, but you really do not hear about the people on the other side of graph. I was diagnosed in October 2018 and was told with 6 rounds of chemo and on Lupron my PSA should stay down on average 22 months, mine doubled in 3 months.
Sorry to hear about your situation, Paul-18.
Yes, I agree, we do not hear about the people on the other side of the graph
How are you doing these days Paul?
Same meds plus prednisone for 2 years ... exercise; yoga postures and meditation, sunshine and walking helpful & Powernaps Too!
Hello TomNew62 This is Lt036. Am 75 and been fighting this stuff for 20 years. Been taking one drug after another. One stops working they put me on something else. Been on Lupron for several years and it stopped working. Now I am on Lupron and Xtandi. Lupron made me tired and had hot flashes which I can tolerate but Xtandi along with Lupron is giving me fits. Feel terrible half the time and no longer have any balance. Sure has messed up my golf game. Are you having any of these problems? The cancer has gotten more aggressive so Doc won’t decrease the doseage
Of Xtandi. Would love to hear from you if you are having any of these same problems with Xtandi. Thanks and good luck
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