Ian, your note to Gino is beyond cruel, "beyond", because it's also so stupid.
In your bio you haven't bothered to note that you have been under therapy for years! And that you apparently have had advanced hormone doublet therapy. (You also have some vapid pop philosophy advice to "live life to the fullest with the time you have left" or something. )
Quote: "There is no cure for stage 4 metastatic prostate cancer We are only buying time , maybe a couple of months."
1. This lazy comment is in complete contradiction with your own biography.
2. And the idea that a person with stage 4 PCa might only be "buying a couple of months" is garbage. Monster RCT trials of new generation PCa therapies have shown life expectancies in years, and even with a slow but steady increase. I am witness myself - Stage 4 and coming up to 3 years.
No guarantees of course with our therapies. But up-to-date therapy, personal work such as exercise and diet, supportive community, family and friends, and depending on age, even continuing full- or part-time work or volunteering, and especially, good therapy decisions, all these things conspire together to tip the balance for a better outcome today, this week, this month, this year and more.
And all these things work better with motivation -- which in turn is helped enormously with realistic hope.
It's ironic here today, because usually people "over-hype the hope". In this case however, you are destroying hope! When in fact there is real hope, real hope delivered by science and medicine and shown in real living men. (I got especially all riled up about this because Gino is a new participant in this forum.)
Ian, I see your PSA has gone way up. I do hope that you're able to find doctors and approaches that can take you in a good direction. For another 10 or 20 years and more!
Yea ….. what johninthe middle said more or less but …. I started off PSA 1400-1600 and my first offer of care was inpatient hospice. That was 6.25 years ago and I’m still here at the shock and awe of a table full of doctors that told me I only had a few weeks to live. No one really knows when we will croak. When I was DXed it was 18 to 24 months. A couple years later it was 2-4 years and now its 4-6 or more years. Yes , none of us gets out alive but all can get out and enjoy some QOL time with loved ones, friends and family.
OMG Kaliber - now I have to read all your posts - I started off with a PSA almost the same as yours and right away referral to palliative care, and multiple visits to them. And yeah, for sure, the time we have for loved ones, friends and family is so very precious.
Tharze been a surprising number of guys like us, and I can think of a couple much worse initially. I had a good friend , Mark , with a story that even makes mine / ours pale . Still he lasted 22 years. He had a LOT of steel jewelry in his spine and all over his body. I forget how many surgeries he had but it was jaw dropping. One day , he and his wife were out driving to town and at a stop light his head slumped over to his right, from cancer damage / failing neck vertebrae. His cancer came in the era when there was far fewer drugs and radiation and plain ole surgery were the primary tools to help him. I don’t remember how many times his doctors told him he was “ done “ but is was several . Even the final time, they sent him home with a shopping bag full of fentanyl patches and lollipops and a morphine pump to his spine. He puttered around his garden and his computers for 3 more years before succumbing. I realize that Mark was an unusual case but he was a good examples of how grit and determination can boost your treatment and become a big part of the process.
lol , I just read your reply below this and no need for me to repeat what you said. Spot on and more eloquent than me. I believe ian996 means well and I have the most heartfelt respect and empathy for him.
I always think of you if I start pissing and moaning too much. That always brings me back to reality. You are an inspiration, My Friend, and a monument to positive thinking (combined with solid reasoning).
Thank you buddy . I always hold back so as not to discourage the the others and newer guys. I’m a superresponder and I realize that more and more” uglier “ S.Es happens to me than most. lol. For example, ( on top of the catalogue of everything else ) I just recently started transdermal estrogen to wake me from total narcolepsy of sleeping 16-18 hours a day and it worked wonders for me. Unfortunately, as a result , I’m battling monumental yeast growths “ down there “ caused by the estrogen… the irritation / discomfort / agony is off the chart Rotflol. With me, it’s always something, seems like. Everything seems to come with strings attached. It’s the “ seniors , advanced version of whack -a-mole “ Rotflol . I don’t feel like much of an inspiration . I do appreciate it my friend. Let’s hope that no one else has to experience “ all this “ Rotflol.
OH SHOOT ! .. Im so sorry. It’s kinda a habit here ( calling people brother ) and honestly my lupron fog is manifesting so strongly, I’m struggling a lot …… my short term recall is more and more seriously impaired. I have a lot of , ADT caused , ischemic, small vessel, white matter brain damage ( from long term xtandi treatment) . Plus I’m nearly 80 years old as well. No excuses tho …. I own it.
Gosh I really apologize for that …. Dang it. Yikes ….
I’m sending you out a big fuzzy ehug if you’ll accept it. I’m not saying I won’t do it again, but I’ll try to make a very serious effort to remember.
Do not worry about, all good. I hope you feel little better, those SE are so bad. My husband only 54 and on it for 8 months, but sometimes he is not as sharp as usual. I was here just to read for info in the first place, but now I see myself here just as much for enjoying some of your brave souls. Some of you guys are giving so much hope that somehow we all gonna be okay. Thank you for that.
I meant to ask how the estrogen usage was going, since your earlier post had been positive. Maybe just ease down the dose a little? Easy to say, I know.
lol , I’m on the lowest dose available , Kaiser is out of the one week patches, and I have to use the twice a week patches. What a mess trying to remember when the last one was. They have a memory things printed on the patch box. The twice weekly patch is MUCH smaller than the once a week patch . Trying to just “see “ that tiny gizmo , never mind slapping it on your a$$ , is more a hindrance than help lol. They came off more easily , accidentally, than the bigger one too.
They absolutely do wake me up again …. After I was staying at the hostel where rip van winkle stays, but nothing comes “ easy “ for me. They are wonderful in that respect. The yeast growth it promotes on me , down there, is horrendous tstl.. Nothing is cheap Rotflol. If tharze even a tiny SE hidden in there somewhere, it seems to find ME.
❤️❤️❤️
I am a super responder , it takes less for me but I’m prone to SEs. I’d guess that most guys would never have that SE and would benefit greatly from “ the patch “.
If you smear gasoline or napalm on it and set the yeast on fire, that gets rid of it for a couple days ( of course this is intended to be a humorous anecdote and you’d never really set your self on fire Rotflol ) washing yourself more than once a month helps a lot too. ( kidding of course )
Oncologists are giving me a best guess of 2 months of life. I am losing weight at a rapid rate, 20lb lost in 6 months
Yes my PSA has gone way up and my oncologists have both recommended getting my affairs in order stopping Chemo and Chemo related treatments because my bone marrow can no longer meet my needs for blood cell production. I am scheduled for a blood transfusion on saturday with the hope that I get a couple of weeks of comfort with some more energy
My comments on live your best life come from 2 friends I have lost to PC in the past year as well as my family GP
maybe you have heard about QOL quality of life and that is where I am I am spending time with friends an family. Unfortunately I know longer have the strength to indulge in my favorite acitivities.
go troll somebody else I dont have enough time left im my life to deal with the likes of you
Ian, your situation is heartbreaking. And treasuring the time left with the people who really count, and not writing to random strangers on forums, is probably the best way to go.
But as for me being a troll, consider that your original post to a new Forum member, who is only recently diagnosed, but who has every reason to be optimistic, basically projected your own end-of-the-journey situation on someone else!
You wrote this today: "There is no cure for stage 4 metastatic prostate cancer. We are only buying time , maybe a couple of months."
This terrifying message is just wrong about Stage 4 and wrong about the timeline. Very, very wrong. People come here looking for hope. Not discouragement. And especially not lazy, terrifying falsehoods.
I too had a table full of doctors tell me I had around 5 weeks to live ( my wife at my side in hysterics) and all wanted me to enter inpatient hospice immediately. And, for 3 years I visited with my 2nd oncologist ( now on my 4th one ) every 3 months he would turn off his monitor and slide his chair over by me, put his arm around my shoulders and ask if I was comfortable , had I gotten my affairs / estate in order and signed the hospital end of life documents. Then we chit chatted. For 3 years this went on with this doctor alone.
Yes your case does sound serious and you may well be on your way soon , but it doesn’t sound like you have entered hospice yet ( probably soon tho ) and I know for a fact that because no one can exactly say when you will pass, you could ( and probably will ) live a while longer than you think / expect. You are talking about motorcycles ( I sold my Harley when I got DXed ) I’m an enthusiast as well, but I’m crippled ( by cancer eating my bones ) and in a wheelchair thanks to cancer, sounds like you are still bipedal. That’s a big QOL bonus .
This is a home for you brother, here you are among brothers, guys just like yourself , guys that “ get it “ when it comes to dying from cancer. You can relate your hospice experiences which will help the rest of us when we get there right behind you. Guys here will be happy to talk to you in hospice ( or any time ) so you can feel inclusion and not doing this by yourself. Johninthemiddle was not trolling you but you seemingly aren’t familiar with the group and told someone they only a couple months to live, said the same thing about yourself. Don’t count on croaking in a couple of months , but if you do …. You already know what QOL is all about. We even have special QOL posts segments here in the group, search for dockam to see the many QOL activities. You already know this is an important time to gather and enjoy family.
Absolutely no one here is messing with you, far from it. And if someone did try, the mods would stop that fast. What better place than us brother ?
Bikes you can still work on, compared to lifting the hood on a automobile and wondering what the h*ll everything is 😃🔧📏🪛 (I don't know about modern bikes so much)
I loved the smooth purrr and super power band of a Ducati. I had a 16 valve ( 32 valve ? ) , 1960s, Ducati 250 for a while I kept for a friend. Man the power band and race car sound from that bike was thrilling. Not the big boy 900s but great fun never the less. The way it snicked through all those gears was soooo precision. Back in the 60s the Ducatis were very expensive for the blue collar guy. Same as they are now. Those 900s are some exotic and exciting hardware … a manly handful able to give you all the revs you can handle. Racing those and the power of a race prepped 900 series was / is manly stuff. I’m impressed that you are skilled enough to handle one of those. And those exotic tracks too. That type of racing is loved worldwide.
I’ve owned almost every motorcycle made from the ‘60s to the 80s and more. I had 3 trailered yellow mono shock Yamaha 2 stroke bikes in the mid 70s to 1980, and raced amateur ISDT . I modified them so much they were nearly unusable for casual riding. They were sick but enormous fun when you hit the power band. Riding any of those weeded out the inexperienced lol. The thrill would leave you with goosebumps when you stopped. I rode in the 360 acre motocross park on west Ft Hood ( not the MX track in north ft hood ) where there were pastured 1000+ pound Brahma bulls. Coming around a mesa or jumping up out of a ditch and landing in front of one of those angry suckers was a thrill. They can run surprisingly fast lol. The ‘76 isdt was run on that same location. I helped a guy named “ lightening rod “ lay out part of that course.
I may or may not have been a patched in member of a well known motorcycle “ club “ back in the early 60s ( before they became a criminal enterprise lol ) as well. I married my first wife in those days ….. I used to keep my ( made from er…ah .. parts ) 74ci bagger in the dining room at night. Had to keep a rubber tray under it because all hogs of that era kinda marked their spot , so to speak. lol
The hammer bought me a 2010 Dyna Super Glide Custom stage 2, for my 60th birthday . It had a connector under the seat where the “ race commander “was located. You could use your laptop and download mild to wild programming into it with HD software. It was a sad day when cancer caused me to sell it. My little red rocket.
Motorcycles ? Yea I definitely love motorcycles. Rotflol
HOLY SHIT!!! You mean we don't get out alive..... and I've been wasting my time posting.....Hey Ana!!! I guess we finally have a good reason to go to Disneyworld... Pack our stuff...
As far as there being no cure for stage 4 metastatic prostate cancer.....I fit that Dx, also Oligometastatic - There is absolutely a better that 50% chance of a cure after the SOC that I have done.
Well in 2011 when I was diagnosed with this desease I was horified as we all were when first told you have it & on the end of that line on the blackboard is the letter D in a matter of years.
Now in 2025 having had many holidays & always coming back on the ADT train my PSA is 0.53. So there is hope is what I am getting at.
I’m sorry but this thread should have been deleted from the get go.
To me, why not use the DM feature to talk motorcycles and construction. Most would never use this site to shout out to an individual other than in a DM.
Hummm, …. Maybe , we are all trying to show lan996 some socializing and friendly companionship … especially on motorcycles which he himself initiated in his post. Something he dearly loves. This to encourage him to come here and talk about anything he wants , to be among friends that “ get it “ and make him feel less alone in this / his dark time.
Like your perspective, this is an alternative perspective that should possibly be considered too. This group is FAR more supportive when inclusion and socialization is considered , along with the dry medical advice and death notices of fathers. Just say’in brother.
Roger that big guy. I’m impressed . It’s totally natural and expected to have an array of “ angry old men “ on here . A lot of our members are very geriatric ( me for one ) and , having worked in male nursing homes a lot in my career, I’ve seen and experienced a lot of male geriatric syndrome. You just have to give them a warm hug and big serious smile ( while they are trying to hurt me with their wheelchairs ) lol ….. toss in aPCa as a catalyst and it all compounds. Everyone’s opinions are important and matter for sure.
Lan966 brought up motorcycles and QOL life himself. It feels awkward that you don’t consider socialization, comaraderie and QOL life to be an important, integral part of the stage 4 cancer experience / care. I like the group when it’s more inclusive and includes friendly socialization . This rather than just the dry medical knowledge and reports of brothers croaking. There is friendship and a heart and soul here ( I hope ) as well as the medical info side. This disease is a lot more and personal IMHO.
I like how this thread went from negative to correction to QOL talk. Hopefully it helped both Ian and Gino in the process to see what this group is about.
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