My father had a RP around 6 months ago and then was given a scan that showed bone mets to 4 different areas. He was put on lupron, zytiga, and prednisone and his PSA dropped form an 11 to a 0.2. He is doing "well", but the situation in which we live just different and I keep looking at what the life expectancy is. I see that some doctors say "50 percent live 2 years" and other "the average is 3 years". I see recent studies that say median is "48 months etc".
All i'm looking for is people that have been in similar situations and their experiences. How long has your loved one lived or you lived with bone mets and being on lupron/zytiga.
I've tried to asks this before and I've gotten mixed responses. I know this is a support group with diverse individuals and prostate cancer is homogeneous and everyone that posts is going through a very hard time. But this is what doesn't work for me and why it makes me go crazy.
1. I'm 29 years old and still living with my parents. I was misdiagnosed for 7 years with a leaky aortic valve and went into heart failure thanks to "being too young to have heart problems" from all the doctors. I had surgery and am now getting better but work part time as an MSW with a small practice as a GCM on the side. My father has retirement and doing fine but I help with income etc.
2. My father and mother are all that I have. My father is my best friend. We are almost carbon copies of each other when it comes to personality. I do takes each day as it comes and try to be positive. But it is very difficult. I'm 100 percent sure it is difficult for everyone.
3. Based on my own life experiences, observations and studies - I'm an agnostic. That's not saying I know for a fact or trying to turn anyone off from responding, but "thoughts and prayers" or "time to give it up to God" really doesn't work on me and actually upsets me even more. As I see too much immense suffering and injustice to even go down that path.
I know this is a huge rant, but everything just really got to over the weekend. I just want to know other peoples similar experiences. If you do respond, thank you so much. I know many won't read this post, but if you got this far, I want to thank you for letting me vent.
-Barron
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I feel your pain & anxiety. Each of my 4 kids, ages 28 to 39, expressed many of the same concerns when I got the “news” some 14 months ago. I’m on same meds as your dad and have been for past 13 months. These treatments seem to effect everyone different but in my case I don’t feel much different than the before the diagnosis. While I experience some degree of fatigue and daily hot flashes the other side effects seem to come and go. As for life expectancy, I was in same boat as many who for whatever reason wanted a definitive date. Unfortunately, or fortunately depending on your perspective, it’s really not a reality. So much depends on age, other health issues, lifestyle and probably the biggest, attitude. Once I got over the shock and need to read everything I could on the subject I settled in to enjoying every single minute of every single day. I strive to participate in only those venues that are either entertaining, exhilarating or enlightening so as not to waste time on stuff I have little or no control over. Remember, laughter is the best medicine a non health professional can give. Grab some popcorn, your dad, put in a funny movie and go make lots of new memeries! That said I pray for your dad and hope that you both enjoy many many years of life together.
Thank you for the response. I'm glad that you are doing well after 13 months of hormone therapy. That seems like a great response from everything i'm reading, especially that you can remain active.
I was on a CIF Team in the Military when more than a few times there was scant life expectancy; guess I may have become inured, because the not-knowing doesn't irritate me, but quirkishly, gives me a rush of 'scrappin' adrenaline'.
IMO, it's all in God' s time; I'm gonna keep rollin' 'til He rings the bell.
There are so many bad ass men on this site. On the other hand, I am just a wimp. I just knew that anyone that used the sign on of Crab Crusher had to be a bad ass. No crab jokes from me. I am afraid to ask the meaning of the shoes by the door.
This was a play on my post from Sunday 02/24/2019 12:07 PM EST
(my hobby is humor - and with all that is going on with you and your Dad, it should be yours too)
A guy meets his friend who's got a mushroom in his ear. The guy says to his friend "Why do you have a mushroom in your ear?" Friend replies "Cause I ran out of carrots".
If you're referring to me...I'm no badass. I try to be as courteous and unassuming as possible. I'm dangerous, but that is a trait that was ingrained back in the day. ( after the Flood, lol.)
I don't know how old Dad is but I just commented that the American Cancer Society data is outdated. Zytiga was only approved for 1 of the 4 years of data (2013-2014) that stated Stage 4------5 year survival rate of 30%... The recent data from STAMPEDE for Zytiga, prednisone, and Lupron was a median progression free survival rate of 43.9 months...some clearly did less, but 50% did more than that time...
As for the 4 areas, if it was a single met in each area --he could possibly qualify for the stereotactic radiation trial for oligometastatic disease ( <5 lesions) --- see page 4 (FREE)
and if less than 11 metastatic lesions, he could qualify for SABR-COMET-10 trial which I posted about a couple days ago... ( ALSO FREE)
****CAUTION--as long as his pathology report does not state his cancer is Intraductal or Ductal --if so, then caution should be taken --potential for neuroendocrine PCa post radiation...****
I had stereotactic radiation treatment to my one met lesion on my clavicle--- I tolerated it well....
I am on Zytiga for 3 months and other than the hot flashes--no real issues... My MO at Cleveland Clinic has a guy who has been on Zytiga for 6 years who has been progression free and doing well... That gives me hope... My MO when I asked how long I had said, "Five....Ten years....Who knows?? "
Ignore that old data, new drugs are coming-- don't lose hope...help him fight....Take him for walks--30 minutes or so daily... some light weights to maintain bone strength if his MD says it is ok... and enjoy each day with him...make him laugh....you are a good daughter...you are here posting on his behalf...
Thank you for the detailed reply. Like I said to others, I really value your input. You do a lot on this message board and I'm always grateful for your insight.
I’m 52 years old with Mets to right femur and lymph nodes from neck to peritoneal cavity. I’ve been on Zytiga/Prednisone/Lupron/Xgeva since October 2018. PSA at diagnosis was 146 and now negligible. I choose to ignore the life expectancies that are posted and focus on my family and my health. I exercise three times a week, eat healthy and laugh often. Hang in there as no one can predict the future, and as most of us here will tell you, there are new treatments coming out all the time. You’re in my prayers.
Thank you, Sherpa. I try to enjoy every moment with my father and joke around. I'm glad that your PSA is now negligible and I truly hope that it stays there.
I’m 55. I’ve had visible bone mets for nearly nine years. I trust my MO, and we fight the beast hard. Some day I’ll probably lose, but until then, I try to focus on the living. I last asked my MO about prognosis in March 2014, and I resolved after that not to ask again.
If I may, I suggest doing some things with your parents that will create happy memories for you. With or without this illness, we’re all mortal. In the end, it’s the memories that matter most and that sustain us.
Right now I use eligard, Xtandi and Xgeva. During those nine years I have also used Provenge, Xofigo and Zytiga. I’ve had palliative radiation when bone pain becomes too much for my pain meds. My pain meds are fentanyl and oxycodone.
Oncologist told me from his experience of my level of spread, 44 months, I have mets in legs ( into the marrow), hips and spine and Lymph nodes and PSA was originally 1386, what the Doc said I have in my favor is, I'm not overweight, very fit (International level sportsman) and no other health issues. So far I've responded very well to treatments and feeling a LOT more positive about my future. For me 44 months is just a number to beat, nobody really knows for sure and many have already beaten those odds. I think attitude has a lot to play in this, just be strong and positive.
I personally have been dealing with this damm disease for 5 years had surgery, radiation 2x, chemo, Zytiga, prednisone. And last summer my PSA started going up rapidly going from 1- 110 in 5 months. I was getting depressed and worried . My oncologist said do give up we have a new trial of LU 177 coming up and now after 4 injections my PSA is 0.4.
My point is don’t give up none of us know how long we have I know I plan on a long time. Most importantly is spend time with your Mom and Dad and do everything you guys doing. It sounds like your Dad is strong and a fighter. Stay positive laugh, cry when you are sad but hang tough. It’s a journey enjoy it.
Wow, Jack. That is amazing that you have fought this for 5 years. I can't even imagine the ups and downs that you have had on this journey. I'm glad that thee PSA has come down with the last injection. WIshing you the best.
You said: I am going insane with life expectancy
Insanity is about all life expectancy statistics are good for. I am speaking from my own experience.
Just about everyone goes through this when first diagnosed with Stage 4 Prostate Cancer. The first question is "how long do I have?" There is really no easy answer to this since we are all individuals and statistics give us averages, medians, etc. but they don't account for the individual.
The best way we can get the most quality of life from whatever time we have is to stop trying to figure out when we will die, stop thinking about the "future" and start to live in the present tense.
I realize that you are not the one with the diagnosis, but it applies to all of us. It's just more urgent for those of us that have been given the diagnosis.
My wish for you is that you find peace, all of us here know what it's like. I'm 2 years down the road from your father and doing amazingly well, PSA is undetectable. Some here have gone 10 years or more since diagnosis.
The most important thing is: At this moment in time, I am alive and doing well. That's all there is.
Great explanation of the best approach to this disease. Put what you know and how you handle every aspect of the family bills, taxes, investments, etc in a notebook along with important documents in a box then update periodically. I also have tried to simplify all this as much as possible. Then as you have so wisely said, with your affairs in order get on with living and not worry about dying.
A wise friend once told me you'll have the rest of your life to grieve, don't do it now. Enjoy now.
Always remember that you are a Statistic of One! Doesn’t matter what the numbers are, you are unique. Told to me my a Doctor who five year old was Dx’d with a disease where no one had previously survived. He said that fifteen years ago. His daughter now has her oldest graduating this year from high school.
Case in point, he told me that in 2004, when the numbers all said that I had 2-4 years, maybe five to live with my Stage 4 PCa..... I am so glad that I listened to him rather than the national organizations producing numbers.
Since you brought it up, I am not a go to church every Sunday religious man, but I did welcome and accept Prayers from across the world and from different Religions - all three Monotheistic, plus several from the Far East and through the Native American Community.
A positive life is a lot better than one that dwells in negativity.
In some ways Prostate cancer has given me a new perspective on life. I don’t take things for granted. I enjoy the smallest of experiences. I hope your dad feels the same way. None of us know what tomorrow will bring. The only 3 things that you can control is how you feel: exercise, diet and attitude. Get busy living and be grateful for what you have, not what you don’t. Live and love and give. If you do that!, then you are in the presence of GOD and what life is all about! Please reach out to others so that you can one day say, “my parents were all that I had” but I now have others in my life as well!. That will be very important for your dad to know you won’t be alone when the cycle of life comes to pass...
Thank you, Kotter. I'm trying to extend to other family also that I haven't talked to in awhile. I have a good support group of friends. I wish you the best on your journey.
First off, what. Great daughter and your kind words about your relationship with your dad are heartwarming. I too am very close with my daughter. We try and use our energy on enjoying every day , and becoming knowledgable (great place to start is this site) so we understand the options, can ask great questions of my doctors and make informed decisions on treatment. We also work out hard together as it’s proven to minimize side affects and extend life.
Thanks, Schwah. I'm actually a dude, but it really doesn't matter. Your words are kind and thank you for the response. I am trying to work on his diet but he loves to cook and seems to have a love affair with butter.
ok i 've been on the same stuff your dad has been on. my new urologist has suggested new and different treatments that will remove my psa to 0. never heard of it. most of my oncologist know shit and do nothing. as for ones life my psa is 37 i'm on my 11 year going on 73 years old dx at 61 years. so tell your dad or whomever to relax and if none of the family are happy with their doctor change remember its your,his body not there's.
I too am at 14 months. On lupron, zytiga, and prednisone plus Oscal (a vitamin) twice a day and monthly infusions for my bones. Cancer in my bones, lymph nodes and organs. No surgeries or radiations. Found this beast too late at 68 yrs old. After a 3 day hospital stay at Christmas time trying to stay alive, I am now in remission (I call it) after 14 months. Psa was 800, now under 1, feeling good and enjoying life. Trying to exercise, eat better and enjoy life. My Oncologist wouldn't answer me last year when I ask him "how long do I have". I complained about a pain in my side. He ask me what I was doing. Told him splitting firewood. He laughed and told me to take it easy on lifting. So to answer your question, I'm thinking after 3 years, the sky is the limit. So many advances are being found for this slow growing beast. Eating better, some exercising and enjoying my family is the way to go. BUT, what really helps me through all this is a BIG bowl of chocolate chip ice cream, the good stuff.
That's amazing, Lincoln. My father was also at the hospital during Christmas time due to a bout of the flu that we thought was sepsis. Thankfully he pulled through and is doing great now.
I was dx late 2012 stage 4 metastic (two pelvic bone Mets), G8, PSA was 19. No radiation or surgery, I have only received Eligard and Casodex for the first 3 years. Since then only Lupron. See my previous posts for a history of my natural supplements. Life is good despite Lupron. (I am a strict vegan.) I bore my oncologist.
Speaking to the most critical issue cited - your agnosticism - as a former agnostic, I must recommend viewing the debates of Dr. William Lane Craig at YouTube . He does an excellent job of discussing the pain, suffering, and evil argument.
Finally, read Dr. AKM Shamsuddin’s books on inositol hexaphosphate, especially the 2011 text.
I've seen that diet is really important - we are what we eat. Thank you for responding, CalBear. I'm happy that you are doing so well and continue to. I called the Doc today and he said that PSA is now down to less than 0.02 and bone mets are disappearing. I hope that he has a few more years left.
You will find Dr. Michael Greger of nutritionfacts.org. very helpful. He offers dozens of excellent, short videos including some on Treating Prostate Cancer through Diet. Fine PSA for your dad. He certainly has years ahead of him. The rate of progress in new drugs being developed points to several years being added to patient survival data.
It’s hard to get facts on life expectancy, myself Stage 4 with Mets . I pushed my oncologist pretty hard until he finally said I had a 50% chance of 5 years . Now that being said I’ve red here where several of my brothers have gone 12 years and on. I’m at 30 months and doing good. Don’t think anyone knows but our maker. Tell him to fight the monster and do anything he can to enjoy himself.
I am 57 and was given from 18 month by my urologist, then i decided i didnt like that prognosis. So i got a second opinion, this highly recomended doc gave me less than 12months. Its been 3 years this june since my diagnosis. I am quite well and on lupron and zytiga and predisone with a 0.0006 psa. So yours pops has no expiration date. New advancements will, and overall health play a major role.
Thanks for responding, Costa. I'm glad you are responding so well to treatment. I called the doc today and he said the PSA is down to less than 0.02 and bon mets have shrunk.
"My father is my best friend. We are almost carbon copies of each other"
Whatever the outcome your Father lives on in you, take joy and comfort in that (I do with my two Sons 10 and 8 years), live for the moment and not think of the future, that is what most of us begin to understand. At the start I had a lot of fear and worry but I have accepted my fate and making the most of every day with my family, in many ways I feel free and happy for every day I'm here. The best service you can do your father is laugh, love and enjoy every moment you share.
Thanks, Zeta. That was a beautiful response and part of my father will live on through me. I am so sorry that you and your family have to go through this.
I have been fighting PCa for 23 years now. Been on HT three times for a total of about 40 months. I am now failing HT and probably going on to chemo next.
Barron- your desire for an accurate forecast of how long your family will have your Dad just isn't available. Much progress has been made in the fight against Prostate Cancer but outcomes for individuals still varies. I'm not a Pollyanna but I have seen that knowing a loved one might not be around as long as you had hoped makes your time together from now to then that much better. I hope you can enjoy the company of your Dad and help him make good choices in his treatment for a good long time. I'm not religious but I know we have no control.
One of those rare posts that I would just like to like every response. And Barron, I assume you are the son and not the daughter, it doesn't really matter, much praises to you for being there for your best friend.
Thank you Bebby. I'm happy to hear that his symptoms improved from 12 months ago. I just truly wish you the best. Thank you for taking the time to reply.
Just as a side note, it’s also important that you don’t put the breaks on your life in this interim. It could be 1 year, it could be 5 years or more, but you can’t stop doing the things you need to do as a 29 year in this world. So don’t stop enjoying your return to health and your need to build outside relationships in limbo waiting for this to pass. Don’t feel bad if it’s a sunny day and you can run around the block or go on a date, laugh and just feel normal.
I'm also here for my Dad. My Father's PSA was 19 all the way back in 2002. So very much likely had prostate cancer all the way back then, but never found on biopsy or scans. We did all the natural therapies you can think of, and I mean all. I became incredibly learned in natural therapies along the way.
In 2011 it started going up and then he was eventually diagnosed in February 2014 with a PSA of 433.
As I write this, my Dad has a PSA of 30 and is on his third round of triple hormone blockade, although it appears this round is not working as well as the two before for it. He is still Radiation and Chemotherapy Naive. Currently on Zytiga and Firmagon after using Casodex in round one.
Alongside the orthodox treatments my Father has always taken cannabis oil for the last 8 years or so and has recently started cannabis suppositories as well made by a company in Canada. I personally spoke to a Gentleman who used them after hormone therapy failed and they brought his PSA down from 40 to 2, of and it is now remaining stable.
So long winded answer, but please please try not to fret and worry about life expectancy. My Father had a PSA of 433 FIVE years ago, and is still going work every day, with no pain, and he is 78 years old, and we still have things in the back pocket to try. Chemo, LU-77, Xtandi, etc.
Intermittent hormone therapy often works for years and years.
i know a chap in Thailand diagnosed with stage 3 prostate cancer 7 years ago. He was obsessed with his PSA until one day he thought, enough is enough, I will lead a healthy life and forget about it. Spoke to him other day, feels great, looks great and has no idea what his PSA is.
Don't be a PSA victim and let it rule your life. I understand the constant dread waiting for one to arrive and in the end, it ends up ruining the very thing you are fighting for. Worrying about things you have no control over is like praying for something you don't want to happen.
Before your Father was diagnosed when was he going to die? Obviously you don't know-none of us do. I don't want anyone's opinion. Sure my life expectancy is probably less than it statistically was before learning about f-ing cancer. So what? I still might get hit by a bus or have heart failure. Just live life to the fullest b/c that's what we should all be doing. L'chaim!
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A BIG BOWL of CHOCOLATE CHIP ICE CREAM. 
Vacation of treatment
Okay, i gotta to back to what i was doing...
Let me introduce myself.
Decision Time is Coming
