How long has everybody been kicking? - Advanced Prostate...

Advanced Prostate Cancer

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How long has everybody been kicking?

FinalBossMatt
FinalBossMatt

I've seen some people asking about life expectancy. One of the first things I was told when diagnosed with Stage 4 was "Don't focus on how long you have. Focus on having a quality of life that you can have."

I thought a simple way to do that would be to share how long you've been kicking since you were first diagnosed. It's always inspired me and given me some inner strength when I am seeing people doing good.

I always tried to think positive but it took me almost three years to truly realize that I am not going anywhere for a good long while. Other than the fact that I'm over 300lbs, I just feel like a regular guy. A recent bonus is the insane hunger that didn't help with weight loss from taking Prednisone has disappeared.

I just realized that next month is going to be 4 years.

Here's to 4 more!

162 Replies

At 300 pounds you will probably die from heart failure before Prostate cancer kills you.

Not at the ripe old age of 45. Thanks for the vote of confidence though. :-P

I used to be very super athletic and I know my shit with nutrition. The thing murdering me was not being able to give myself a break with eating.

Now... I enjoy having a big breakfast and then just not worrying about eating for the rest of the day. If I do, then some little things like nuts.

Just joking.

I know man, no worries. When joining the group didn't you get the memo that you're supposed to put smilies when you joke? 😆🤣🤪🤪🤪🙃🙃

I never smile, my mouth merely twists

Ah-HA! I see now.

Dastardly
Dastardly in reply to Nonamelame

A grimace. Great word isn't it?

Haha 😂 thanks for the vote.😳

Hi Since 2017 still going strong. 👍

Fifteen years, and the Doctor says there's not much sense in the annual checkups any more. Yet, given that apparent cure and an otherwise generally good life the attendant losses of PCa remain agonizing.

“Apparent cure”? Details man. That is wonderful.

I'm just quoting the doctor's words. I take it to mean that in his experience (long) people with similar histories don't get relapses. But that's just my interpretation. In my other cancers the (different) doctor said of one, "cured", and of the other "it seems in deep remission but we never use the "cure" word for this one. So it's all a matter of hope, semantics, and faith.

Keep the faith !

I have been around for 28 years.

LearnAll
LearnAll in reply to Magnus1964

And the Gold Medal Goes to our PCa hero.. Magnus the Great.

Magnus1964
Magnus1964 in reply to LearnAll

That's Magnus the magnificent.

LearnAll
LearnAll in reply to Magnus1964

Or you can say..Magnus. the long lifer..

Magnus the all-mighty!

Or ...Magnus The Matcha Green Tea fan.....He drinks green tea like a fish.

Jordache
Jordache in reply to Magnus1964

Haha love it

what were your stats when you found out? What treatment(s) did you have? My RP is scheduled in 8 days. My only reason for me having surgery is that I'm looking for 25!

My chronology is :

Surgery (no RP, stage 4)

Orchiectomy

Radiation

Casodex

DCA

Abiratorone

Salvage radiation (to Ischium)

Xofigo

Xtandi

Don't know if this helps, l will check your history and get back to you.

What, no Provenge? 🤔😁

Poops I missed Provenge.

I checked your history, if you give me some background on diagnosis and a list of treatments I could give my thoughts on your treatment.

Ahk1
Ahk1 in reply to Magnus1964

Please look at mine and tell me what you think :-)

Magnus1964
Magnus1964 in reply to Ahk1

You seem to following a normal path with medium grade Pca. I would imagine ADT would be the next step.

Hi not sure what you found but i'm happy to tell you anything that would help you help me.AS only till now

Current PSA 3.7 as of 2 weeks ago (Nov. 2020 was 2.74, highest was 6.+)

John Hopkins review has me at 10% 4+4 in one of 4 cores. 5% 3+3 in one of 4 cores.

Dr Freeman SBRT

DR Biagioli HDR Brachy

Dr. Pow-Sang Surgery (Moffitt)

Trying if possible to avoid ADT which all of the above have suggested not needing. However Moffitt radiologist suggest following the institute recommendations of 2 years of ADT, HDR Brachy as well as IMRT (wow! big difference)

Have surgery scheduled for the 13th. but reading Tall_Allen's messages and listening to Dr. Scholz videos has me questioning my thought process. I really don't care all that much about ED (wife no longer interested and other options not possible) but incontinence is another story (leaking for a few month maybe but forums are full of those leaking much much longer, years) but especially living as long as possible (now 71 but mom passed at 100, dad (with dementia) is 96). Long term radiation (10+ years) does not have data i can find!

If I've missed anything important to helping please let me know

I'm not sure why RP is not offered, are you over weight? Perhaps your margins are not clear. Don't fear external beam radiation. True some experience leaking in the long term, but you can do a self catheterization to avoid that.

RP ( radical prostatectomy) is being offered at Moffitt in tampa. I'm just having second thoughts that maybe radiation could be better even if i'm looking for the long(est) lifespan

You have do what you feel comfortable with.

I did not get RP because they got me thinking I could have a heart attack during the robotic surgery so I got IMRT and brachy and it was a failure. I think they may have even caused the cancer to spread by not doing the brachy properly. I would recommend RP for several reasons. If you want to talk more then message me.

Sure would appreciate your thoughts. Have mine scheduled for 4/13 but getting cold feet after see Dr. Scholz youtube videos

I think you should ask the entire site a question about pros and cons of each. I cant remember all of them but I think it is good to get the prostate out and all the slimy cancer that might be surrounding it. Then you get a second shot at it with radiation and chemo if necessary. I also think the radiation I had to the pelvis weakened my T cells / immune system. I also think the brachytherapy I had may have caused the spread of the cancer. They are like little hand grenades. If they aren't put in just the right location, the cancer might survive and move to other parts of the body. I got really ill 2 months after the brachy and it was at that same moment that the PSA started rising rapidly. I think the radiation and the cancer entered my body outside the prostate, at the same time. There are several other reasons I have read before but I dont recall all of them. Radiation can cause other morbidities and increase damage over time.

If you have a high quality experienced surgeon to do the RP then I would do that. When I was making my decision I was not thinking enough about the possibility of death from prostate cancer. That's really all that matters in my opinion. Another thing is that if you dont remove the cancer and you get on ADT then you will never want to have sex, so you are better losing your erection capability from RP, removing the cancer and still having sex drive by not being on ADT.

Thanks George for you candid opinions. Hard to get real opinions

the radiation can lower blood cell levels permanently too, in some people. Mine are lower than before. I presume that would not be the same in people who get RP. It's a very big decision that's why nobody wants to give advise. I don't want you to make a snap decision. Talk to your doctor, radiation works effectively for some, but I think RP is the better option for me if I could do it again. And make sure you have a good doctor. Many many are walking several miles the first week after their surgery. Is your heart healthy? Is it robotic or traditionally surgery?

laparoscopic from Dr. Pow-Sang department head (not sure if that is a plus or minus) at Moffitt. Just like the rest of me, everything is healthy, just plain old (71). Would even be questioning if my mom (100) and dad (96) hadn't made it so long. I want to as well.

If it's Moffitt and he's done many of these surgeries then chances are that he will do a good job. With your parents longevity, if you can get the prostate out clean, then you may have a long time ahead of you. You never know until you get the treatment but waiting will just increase the chances of failure.

Bethpage
Bethpage in reply to marinoperna

If you're considering RALP and have some worries about outcome, why not consider Dr. Vipul Patel, Celebration? My husband had a simple at age 71 (all biopsies negative for 11 years, but needed surgery for BPH, that's when 3+3 tumor was found) in 2014, and salvage in 2017 at 74. Was back to work teaching on the 5th day after both surgeries. Even after 39 RT in 2019, still has completely continence. Patel is arguably the best in the world for RALP, though you'd not want to consult him for any treatment after surgery.

marinoperna
marinoperna in reply to Bethpage

Hi Beth,

Heard that he is the best as well. I phoned the office to be told of 2-3 months wait for an appointment then another 2-3 months to get on a schedule. With 4+4 gleason of 4 months ago just didn't feel i could risk taking that much longer.

Hear anything of Moffitts director Dr. Pow-Sang?

Bethpage
Bethpage in reply to marinoperna

Yes, I can believe that and understand. In 2014, I got my husband in for the consult in about 2 weeks, but then he waited from June 21 to August 3 for surgery. Patel was worried about my husband's continence because he had been on a catheter for months. Patel offered to refer us to "someone almost as good," but we elected to wait for him because of the negative biopsies. 4+4 would not be a good bet for waiting. I'm wishing you the absolute best of luck!

marinoperna
marinoperna in reply to Bethpage

Much shorter than i was told or may have waited. His website makes him seem like an assembly line which could be good or bad, I suppose!only one core of 4+4 (10%) but yes it is still Gleason 8 (the other 2 (1 of 4 cores each) are 3+4 and a 3+3 all at less than 15%) and making me very nervous, to say the least

Bethpage
Bethpage in reply to marinoperna

marinoperna, did you think of trying again? I was the one to get the appointment for my husband. I called multiple times and got my husband's paperwork in front of the case worker before they could make a decision. I used the same tactic with Dr. Eugene Kwon at Mayo as well - and got him accepted for the C-11 choline in 3 weeks. Patel himself is not assembly line - or at least I've never heard anyone who has had surgery by him complain of that. He has a huge, huge office staff, so that helps with the numbers of patients. At any given time, his waiting room is full full. Over the course of 5 years, we met patients/couples from virtually every country.

marinoperna
marinoperna in reply to Bethpage

i'll have to try again. I emailed the person who sent me the forms and that what she said when i askedThank You

Just dont blame me if things dont turn out well. My long time friend and his radiologist brother recommended radiation and gave me a great sales pitch. Now I wont talk to my old friend anymore. Sad but true.

Would never blame anyone, but do appreciate your replies

Some articles in here about doing prostatectomy and other good info. theprostateadvocate.com/

Thanks for sending

No problem - The more relaxed and low stress you stay, the better off you will be during this hard time. Stressing and worrying will make it worse. As you know, things dont get better by waiting.

Thanks George. Tuesday at Moffitt is the day!

I pray that it all goes great and successful. They have done this many times before so I think you'll be fine. Let's hope they get all the cancer.

Thanks George. Appreciate the thought!

No problem dude

4+ years with stage 4 so far.

I have been telling friends I have 5 more years for over 15 years. At the start that sort of lifespan was literally unthinkable. It does take a while to adapt.

Only 2 years as of now. Expecting 10 to 12 years more.

Diagnosed Nov 2018 at 55 years, I've been in a lot of pain most of that time due to extensive Mets, I asked how long I had and Oncologist estimated 44 months from what he can see and his experience, he said it's pretty aggressive.

I've had some ups and downs, this Xmas was difficult as Zytiga stopped working after only a couple of months and PSA jumped to 360, I was so fatigued I could hardly get out of bed. Chemo is working quite well (last time Chemo lasted 11 months) and I'm mobile again.

I know it's hard to put a time limit on these things, most people are dying from other complications caused by PC. I was very fit and a pro sportsman when I was first diagnosed, I figured that had to count for something at least. I don't dwell on it and get on with my life, I see it more of a challenge to beat lol

Lulu700
Lulu700 in reply to Zetabow

Hang tuff Zetabow!

I’m now 57 years old...I was diagnosed in July 2017. Been through most of the protocol drug therapies; Currently on Jevtana. One way or another, I’m going to get to at least 85 years old 😀👍🙏

Karmaji
Karmaji in reply to CRK2

tell us the secret transcending 85...happy journey

CRK2
CRK2 in reply to Karmaji

Lots of prayers and a little chemo now and then. I actually changed my goal from 90 to 85 because I’m into the Jevtana now...not many options left but the power of prayer and a miracle. I have a lot of life left in me...at least mentally 👍

MateoBeach
MateoBeach in reply to CRK2

Dx in 2007 at age 57. Now 71. Told my wife when we started dating 38 years ago that I thought I would live to 90. She keeps reminding and holding me to that. So I comply.

In July it will be 9 years. I remember 3 different doctors all chanting the same mantra - advanced, aggressive and incurable I had radiation therapy and spent 27 months on ADT. I have been off all meds since October 2014 and my PSA is steady at 0.2. My medical oncologist started using the other "C" word ("cured") but I figure I'll know that when I die of something else... Hang in there - best to you...

Okay, maybe it's a long story but how are you off for 6 years? That's like saying, "I went to a baseball game, and the next thing you know I'm addicted to crack." There's a bit of a hole in the story haha.

I did have a similar experience of 9 months of being off of medicine. When I was first diagnosed the medicine only worked for a couple of months. Doc said to give going off of medicine a try to lower my PSA. He said it was a 25% chance of happening, but it crashed for 9 months. Eventually it went back up again.

Is this something similar?

About a month after the radiation therapy my PSA dropped to undetectable; also I had been on Lupron and Casodex for 6 to 7 months at that point (since diagnosis in July 2012). It stayed undetectable and in October 2014 my oncologist decided to stop the ADT. Over the next couple of years my PSA rose first to 0.1 and then to 0.2. It's stayed at that level ever since. Given that I still have my prostate having some measurable PSA is not surprising. At diagnosis a biopsy was evaluated as a Gleason 9 and there were regional metastases to my pelvic lymph nodes and bladder (I had kidney stents in for over 8 months due to a urinary blockage by the tumor in the bladder.)

At any rate I have done very well, much better than I first expected. One never can really know why, though I like to think that my vegan diet (started after diagnosis) and heavy exercise (mostly fitness bicycle riding - about 3000 miles a year) have helped.

Sorry man, I am fascinated by this. Why did he take you off after 2 years? Just to give your body a rest?

I am sure biking 10 miles a day and going Vegan helps a lot. I've always told people "Do what works for you," in regards to their health and wellbeing with cancer.

I asked a Doctor if the Cholean in Eggs and Chicken I ate all the time. He just laughed and said, "I wish it was that easy."

I've said before that I've had to go on a high-fat diet to balance out my hormones because I was going crazy adjusting to not having testosterone anymore.

I have finally adjusted though.

My biggest confidence boost is I am back in America and my Doc isn't happy until his patients' Cancer is "undetectable."

When it took be off the ADT meds my PSA had been undetectable for almost 2 years. While I am not certain what his reasoning was, the use of intermittent ADT is common. It both gives relief from the ADT side effects and also might help delay developing castrate resistant prostate cancer. In my case the cancer was in remission and the meds proved unnecessary.

GeorgeGlass
GeorgeGlass in reply to smroush

what type of radiation did you get?

smroush
smroush in reply to GeorgeGlass

External beam radiation guided by fiduciary markers, targeting the prostate, pelvic lymph nodes and tumor in the bladder; it was done at the University of Michigan hospital. 70 grays.

COOP8
COOP8 in reply to FinalBossMatt

Did the high fat diet seem to help you? My husband has been on ADT for 2 years, plus a few cycles of chemo and now a PARP inhibitor. He’s had cognitive issues and anxiety since he started treatment.

MateoBeach
MateoBeach in reply to smroush

👍🏼👍🏼👍🏼😃🤞

3 1/2 years for me. At first I was terrified but I’ve gotten used to having cancer now. It’s amazing how we can learn to accept and adapt. Like you I feel fine. I’m expecting many more years. Whenever I fill out something that asks how healthy I am, like an insurance application,, I’m not sure how to respond. Take my PCa out of the picture I’m in excellent health,.

Yeah, there's no box for, "Other than I have something that could eventually kill me, I'm good." haha

That's the one thing that is always in the back of the mind. Stage 4, gleason 10, but only 3 bone mets and 1 lymph. After 2 firmagon and first docetaxl psa down to 1.6 from 15.4. I want to be happy, but that creeping terror stays in the back of the mind. Will I respond well, will it be agressive and treatment fail? Being an RN and knowing exactly how it will end, but just no knowing the timeline is what drives me nuts. But one day, another and another, and they're all good. (Plus my wife, my kids are is worth fighting to spend another day with.)

It's okay to lose to cancer. It's not okay to lose to fear.

Hailwood
Hailwood in reply to Vangogh1961

I’m also an RN in BC Canada and seeing what we see daily is not altogether helpful, but like you I have great kids and a wonderful wife and extended family and my Moto Guzzis keep me motivated to be around for as long as possible. Santé mon ami

SooHwa99
SooHwa99 in reply to Vangogh1961

I am also an RN. The knowledge base we have can certainly be a double edged sword to say the least. I am a PICU RN so I am really a bit out my element. I am too blessed with an amazing wife and three grown kids. It sure would be interesting to see how many of us here are Registered Nurses.

There is cancer...sure ...mythological opinionIt is a mind game

What is the norm.....

What is being healthy....

Hawkins..the physics scholar....what a life well lived....

Having PC becomes new norm....

black white small big slim fat ...rich poor...

Life is always there when even shedding rotting robe....

Life was never born never dies ..never suffers

always dancing with joy ...beyond time no limits she knows...

This physical robe as house of life is just a play of few nano seconds on time scale of life which she does not have....

Doing pee three times and lack of libdo new norm...so what

Living fully hugging loving and spreading Joy is all

life is about

laughing ...with chinese Boudha...who walked long way from plains of India

MateoBeach
MateoBeach in reply to Karmaji

Yes you are indeed a most wise brother Karmaji. Your words fill my heart with joy. Laughing like a Buddha. Maybe we should take (another) long walk together? India to China ( or at least to Tibet) The conversation or the silence would be grand on such a pilgrimage. 🙏🏻

LearnAll
LearnAll in reply to MateoBeach

Buddham Sharanam Gacchmi..Sangham Sharanam Gacchami..Om Shanti.

what are you using for treatment?

Hello, Stage 4, advanced metastatic PCa. PSA at diagnosis just below 1700. At the end of May it will be eight years. Current PSA is 0.016. Keep fighting!

what treatments have you done so far?

Hello, On diagnosis at the end of May, 2013, my urologist immediately started me on Zoladex (goserelin) and referred me to a radiation oncologist at the local Cancer Agency. Aside for a year when I was on Firmagon (degarelix), I have been on this drug ever since. When my PSA started to climb in September, 2017 my radiation oncologist switched me to a medical oncologist. My new doctor gave me the choice of Zytiga (abiraterone) or Xtandi (enzalutamide). They are probably the Pepsi and Coke of advanced prostate cancer. For various reasons, I chose Xtandi. My PSA dropped right away.

Other than those two cancer fighting drugs I also take Prolia (denosumab) which is a bone strengthening drug. I am on a maintenance dose of one injection every six months. It prevents any possibility of a fracture or Skeletal Related Event (SRE). I have been taking Prolia for close to eight years. Some side effects from these three drugs but nothing I can't handle. Hope that helps!

why did you take prolia from 2013? Where your bones weak then? What is your age? I'm glad the xtandi is working. I am on ADT still but havent started taking xtandi yet. Some doctors and people on here think I should start the xtandi while still adt sensitive but other think I should wait til ADT failure.

Hello, My oncologist put me on Prolia because I had extensive bone metastasis from my neck to my knees. Fortunately no soft tissue involvement. He was worried then, and to a lesser extent now, about a fracture or Skeletal Related Event (SRE). He also felt Prolia was a safer option for me than Zometa (zoledronic acid) and other bone strengthening medications. No serious side effects, although you should let your dentist know because there is a very rare possibility of Osteonecrosis of the Jaw (ONJ). I was told less than 2%.

As for age, I was 67 when diagnosed at the end of May 2013. My PSA at the time was just below 1700. It is currently 0.015. I am currently 75 and will turn 76 in the fall. Hope that helps!

That's great to hear about your success so far Ryder. Quite a high PSA you had there. I hope you keep doing well for many years. I dont have any bone issues now but I learned something from your story. thanks!

Hi FBM:

After getting diagnosed last Jan and a newbie cancer survivor, focus life in the moment. This relieves my stress. I know it may sound corny but I try live each day to the fullest. It’s not how long you live it’s more so on QOL and what you do with it. I’m trying to give back by offering time to increase pca awareness as i think many still know little about this disease. In fact, I was talking to a few youngsters who thought their prostrate was part of their scritum. Go figure....more work is needed! Stay strong!

Hi, diagnosed in 01/2015 at 57 with #stageivpca PSA at 840.2, GL7, Mets to left ureter lymph nodes. ADT and 15 chemos. Nadir in 2017 @ 0.1. Abiraterone and Xtandi failed in 2020. Have one more Taxotere chemo as a rechallenge to hopefully get the PCa to resensitize to those anti Androgens that failed. PSA went from 9.6 to 4.2 with another Axumin scan in a few weeks

tehachapinews.com/lifestyle...

Fight on y'all

Randy

Diagnosed December 2015. Some chemo. Some radiation. Lupron every 90 days and 4 Zytiga pills each day. PSA 0.1. Feeling great but lost quite a bit of weight recently so time to get back in the gym.

does zytiga cause any heart issues for you? I haven't researched the mechanism of how zytiga causes heart problems in men. Is it due to raising blood pressure, which combined with artery plaque, leads to heart attacks?

Zytiga does increase blood pressure and I do take lisinopril daily to counter this.

thats why xtandi is probably safer than zytiga for me. Does the lisinopril work well? What is your average BP on lisinopril?

16 years total, 11 years stage 4. I’ve stopped all treatment and I have to be honest and say I feel better now than I have in years (other than fatigue). God is good.

Karmaji
Karmaji in reply to JimBarringer

Sure God is good who gave me PC...I thank him every day for his or her humanity

JimBarringer
JimBarringer in reply to Karmaji

Karmaji, I admit, I didn’t thank God when I learned the diagnosis, but I did thank Him for giving me the internal strength to fight through it. I thanked Him for helping me to keep a positive outlook. I thanked Him for providing loving family and friends who were always there to help me through this. And finally, being a believer in Jesus Christ, I thanked Him for the eternal plan He has for me where I will receive a new, uncorrupted body for all of eternity. Through this journey I have certainly felt His love and His presence. I pray that sometime soon, you will too, since He loves you just as much as He loves me.

Hey man, I get if you're not thrilled with people saying, "God is good." Even though I have a relationship with God I don't like to say, "I'm blessed." My thought is, "If I am blessed, does that mean God doesn't like the people who died or who are going through lots of pain?"

I just like to say that I am "Fortunate."

Still, I'm trying to keep it positive for people who have whigged out like the rest of us when we were first diagnosed, so please let's try not to get into "Is God Good, or is he a dick," argument please. :)

How long have you been without treatment and what are your expectations? Will you continue to do spot treatments?

I ha Keytruda in November and it really knocked me for a loop. Lots of vomiting and such. I decided, after 40 plus radiation treatments, fourteen chemo rounds, three clinical trial, casodex, zytiga, enzalitamide and Lipton, I’m done. I suppose I’ll do bone and ct scans but other than that, nothing. Be well

Looking back, would you change the treatments or the order of when you did them? I'm still castration sensitive and on ADT. There is a lot of debate on this site about adding enzalutimide now instead of waiting for castration resistance. Even the four doctors I spoke to are divided - two to two.

George, I don’t think I would change anything. Many, if not most, of the treatments I received weren’t even available when first diagnosed. In fact, I seem to recall hearing that chemo wasn’t used for prostate cancer when first diagnosed. Lots has changed in 16 years. Good luck to you

3 years, looking at 20 more if God be willing, Lupton and arbritone since December, PSA down to 1 from 12.5, feeling great.

Maybe it's just me, but I feel a little bit irritated when people say they have been fighting prostate cancer for 10, 15, 20 years or whatever. I find that quite meaningless without any further details. What stage cancer are you? What was your Gleason score when diagnosed? What treatment have you had? I was diagnosed with stage 4, Gleason 8 in March 2019. I don't expect to be predicting my longevity in double figures. While I celebrate the good fortune of others, it does bring me down sometimes. But, it is what is is.

MateoBeach
MateoBeach in reply to Dastardly

I have two remembrances:1. A life well lived is long enough.

2. Life goes on in ever new ways. Paul

Dastardly
Dastardly in reply to MateoBeach

Just been doing an idle bit of googling, as you do, and come across a quote from the best guitarist the world has ever known....

“I'm the one that's got to die when it's time for me to die, so let me live my life the way I want to.” - Jimi Hendrix

Quite apt for Pca really.

Well, the most important battles we fight are in the heart and soul so it would be accurate to say it's a fight."

Your dislike for "fighting" is like mine for calling this thing, "A journey." It just sounds fruity. I get why people do that but with some of the rough spots I've had, I can't stand it when people say, "Oh you're on a journey."

They're trying to be nice so I don't say anything.

What a long strange trip it's been! (Snicker, snicker)

😆

Understand what you’re saying. I was diagnosed with Gleason 9 and cancer already escaped. That was 16 years ago. Did 40 rounds radiation and Lipton and casodex. Things went well for almost five years when first bone tumor reared it’s ugly head. Since then I’ve had enzalutamide, zytiga, three clinical trials. Each new protocol did good stuff, until it didn’t. Last straw for me was cancer in liver but not the evil small cell (btw, don’t believe anyone who says a liver biopsy doesn’t hurt. They are lying). I tried Keytruda and even though I did a Keytruda clinical with no side effects, this time it put me down so low I seriously thought I wouldn’t make it to january2021. Decided to stop everything in a “let’s get this over with” attitude and surprisingly everything is going very well for me. I’m pleasantly surprised and thank God for this turn around. Be well Mr Dastardly. Be positive too. You’ve got this. (By that I mean you can handle this-of course you and I already “got this.”😜

Hi Jim,Funny old world isn't it? You stop your treatment and then feel a whole let better. I am so pleased for you. That was a brave (or desperate?) move, but it was your choice and you owned it. I have come to the conclusion that we can spend far to much time looking over our shoulder to see what is creeping up on us, and miss the open road of opportunity ahead.

Good luck and take care.

gregg57
gregg57 in reply to Dastardly

I also find that irritating, especially when they say they have had stage 4 for 10 or 15 years and turns out they really didn't. This kind of thing is often done with some kind of self-serving, attention getting "sales pitch" for whatever alternative nonsense they are doing. "Oh, I've had really aggressive prostate cancer and my doctor gave me 3 months to live, but here I am at 20 years now and I'm keeping it from progressing because of my special diet and supplements bla bla bla."

Interesting point on the sales pitch since dummies love to virtue signal.

It's like a guy I watch on youtube who used to be ex-military. He hates it when people say, "triggered" when he has PTSD from being in Iraq and his jeep flipped from an IED. Each time he hears fireworks he gets a real "trigger" and that's his problem when people would say dumb shit like, "President Trump gets me triggered" and stuff like that.

Yeah there was a guy on here a while back that claimed he had stage 4 for something like 18 years but no other details. Everyone was saying "Wow, that's amazing! What treatments did you do?" To answer that, he posted a link to Amazon where you could buy his book! The book was a bunch of BS, mainly appealing to people who know nothing about stage 4 cancer.

Lots of people like to read these kinds of stories of miraculous recovery, beating the odds, going against the "medical establishment" with unproven, alternatives to treatment. As long as it sounds good, who cares if it's true.

Maleko808
Maleko808 in reply to gregg57

I hear ya. Tell me how you got to 5, 8 , 10 years, not sell me a book. I've known I have been stage 4 since October 2018, but probably was at that stage earlier. I looked for those who claimed over 3 years of longevity. Most folks had that info out there but the couple I did click on that didnt were snake oil salesmen.

gregg57
gregg57 in reply to Maleko808

If you think about it, someone who claims to have had stage 4 for 18 years would have had almost no treatments available at diagnosis or even 5 years after.

Almost everything we depend on beyond ADT or Docetaxel chemotherapy (16-17 years ago) has come along in the last 11 years or so. Back then, the 5 year survival was only 27%. So you know if someone tells you they've survived that long with stage 4 it's very, very unlikely to be true.

Dastardly
Dastardly in reply to gregg57

Sometimes it can look a bit like bragging. Yeh, Iv'e had cancer a lot longer than you, so there.

COOP8
COOP8 in reply to Dastardly

Dastardly, I completely agree with you. My husband was diagnosed 2 yrs ago at age 50, Gleason 9, stage 4 with mets throughout skeleton. Did chemo, and while it helped bring his PSA down to about 3 for a few months, he ended up w cognitive issues and severe anxiety. His PSA started rising again shortly after that, and Zytiga did nothing for it. He was then deemed castrate resistant. So now, after more chemo, he’s on a PARP inhibitor and feels like garbage every day. I think everyone’s journey is different, and it’s so difficult to compare. To me, it sounds like most of the men who are doing great have had success at some point with Zytiga and Xtandi.

I read these longevity threads thinking it’ll help me feel more optimistic and hopeful, but unfortunately they tend to make me realize my husband’s cancer might just be worse than most of these other men. I try to be as optimistic as possible for him, and remind him all the time that any day now they could find a new amazing treatment that will work for him!

Dastardly
Dastardly in reply to COOP8

Hi Coop8,The best treatment your husband could have is you, especially when he feels like 'garbage'. You obviously give him a great deal of love and support. My cancer has turned me in to an optimist. Survival rates today are an awful lot better than they have ever been, so let's all keep looking for the next thing that might work for us.

Love and best wishes to you both.

gregg57
gregg57 in reply to COOP8

You said: "To me, it sounds like most of the men who are doing great have had success at some point with Zytiga and Xtandi." I agree. Good response to second-line ADT drugs is an important factor with stage 4. This is true for me. Zytiga and ADT have given me over 2 years of undetectable PSA and I do realize that I am lucky that my cancer is still so hormone sensitive. I know that will eventaully change and then my options are more limited. My doctor said about 20% of his patients go as long as I have on Zytiga. I still have a lot of anxiety when I go for those blood tests.

11 for me and 8 grandchildren later!Enjoy every day or you will die worrying!

Just a little ahead of you at 56 months. Not on prednisone but have gained 20 pounds. Just that bowl of ice cream every night 😁😁. Never give up warrior

Yes my husband is going on four years as well. A lot of weight gain due to steroids. He cannot control weight due to insane hunger. Any advice? He fishes a lot with grandkids which seems to make him enjoy his days.

Really hard to say. I do know my stuff with nutrition which made me crazy why I couldn't stop eating. Maybe he can just ride it out as I did.

4 years,66 years old. I asked Doctor to keep me alive to watch my Grandkids grow up so far so good!!

Prostate cancer discovered in 2008, G8, PSA 8., age 62 Rad Therapy 2008. Diagnosed Stage 4 December 2011 with PSA over 4. ADT intermittent 2012, 2014, 2016. ADT continuous every three months since June 2020. A few sore spots in tailbone, rib, spine, skull, back lymph nodes came and went along the way. PSA now <0.1 for past six months. Now 75 years old in good health except elevated blood pressure, overweight a bit, eyesight, memory, and hearing off a bit. Trying not to let fear of stage 4 mPC or Covid 19 stop me from fully enjoying life.

braccy in 2005 lymp node in 2007 interrmittent adt , casodex then continuous lupron then zitiga and prednisone in 2018. so at 88 and 16 years with the monster I;m still here---exercised whole life eat without rules drink a bit too much--hate the fatigue===suspect something else will get me but have had a great ride good luck all

I’m new at this and Only diagnosed 18 moths ago. I hope to be here many years. :-)

Diagnosed G9 (5+4) in 2003 at age 58. Radiation, Dr Myers ADT etc...bone metasis a few years ago but still doing well....Was nationally ranked Triathlete when diagnosed, considering trying to do a tri this summer...

Did you have any mets? Good luck with the tri!!

I do not understand but it seems right now that I do not have any major ones....my new Oncologist at CU Anchutz thinks I am doing great. Scans showed a lot of bone problems five years ago but now I seem to be clear.....I do not understand but I keep taking all the supplements Dr. Myers recommended: Metformin, Vitamin D, resversatol, pompgranate, plus Avodart. My PSA has come up slightly, but still not anything to be concerned about. Don't know if my old knees will hold up for the run on the tri but I am swimming fine.

Five years in June

22 months and it has been a hell of a ride...RP, ADT and Salvage Radiation..stage 4...GL9, T2N1M0 .78 DECIPHER. ....and then a layer of Covid-19 precautions through most of it. Feel fine except for hot flashes and lethargy....and miss my testosterone and sex mostly....can't wait to travel again. Just reached 68...quality of life will determine my end point.

I agree, some information is necessary to paint a picture:

Diagnosed end of 2017'Original G4+3, 90% 6/12 cores, PNI, ECE, SVI, IDC-p, M0N0, Genetics clear

RP 4/2018 +Margins, G7 confirmed

Persistent PSA

ADT 11/2018, RT 1/2019 (72gy)

Persistent PSA 5/2020

Stg.IV 8/2020

Genetics - 11 mutations

ADT 10/2020

Mets to Peritoneal, 10/2020

Mets to Appendix, Surgery 12/2020

Docetaxel 3/2021-6/2021

...

Kicking and fighting, sleeves rolled up and not giving an inch, won't back down, punch drunk and bloodied! Presentation to Peritoneal and Appendix is rare manifestation, and not many cases to allow for prognosticating my condition. But going through the program (SOC) and seeing what it does! Concerns about not being able to walk paths others have traveled and paving my own way, but encouraged by the timelines presented here. MO assures me there's years, but checked himself at a "decade" prediction when asked.

Will love to laugh about this all in 20yrs, lol.

Carry on!

SooHwa99
SooHwa99 in reply to Cooolone

Man I cannot believe your timeline is so similar to mine, albeit a year later. I was G 4+3, but with everything clear. RP April 2019, persistent PSA, ADT November 2019, RT 68 Gy January 2020. My last PSA was 0.03 not <0.03. I am hoping was a lab error. I guess I will know in a week or so. I hope I won't continue to follow you though, but I had a Decipher of 0.71 so not particularly hopeful...I think sometimes they don't look at G 4+3 as serious as they should.

Boobs, no energy, no sex. Speaking of sex I used to have something down there but now I couldn't find it with a search party. Yup, it's great to be alive.

From my era of Rocky and Bullwinkle Also was underdog. “ Have no fear”! “ underdog is here “! No Juevos , unit shrank in half. Whoo hoo!

Man over board ! Call off the search . That ship has sunk . But it Beats pushin daises.😂

Funny how they never tell you about the disappearing dick before putting you on ADT. It seems a lot of onco's are very reluctant to talk about some of the worst side effects of chemo and ADT. I recently had to fill out my 10 yearly census form. When it asked me if I was the same sex as when I was born, I had to stop and think. What with the dd and the boobs, I'm not sure what I am anymore.

They completely dropped the ball. Pun intended.

I’m 5 1/2 years and still fit and strong and never had my psa drop below 1.

13 yrs, Gleason 8, never been at nadir. 68 yo now. Hang in there and keep checking the clinical trials. I'm doing lutetium at Hopkins! Just continue to buy time!

Dx 1/1997 (24 years ago) PSA 95. Had many opinions regarding treatment and all the urologists were unanimous that surgery was out of the question. Started Lupron and Casodex 1/97 then 5 1/2 weeks EBRT April/May 97 finally Brachy 9/97. Stopped hormone therapy 9/97. Went 15 years before PSA started to make a steady climb. Since then I have been on and off hormone therapy. Dec 2020 prostate cancer spread to bladder. Had that taken out and now just checking PSA level every month.

MikeP

Stage IV diagnosed March 6, 2017. Prognosis: one and a half to two and a half years. Feel strongly that I will make it to five years. Unless I have a heart attack or j-o-h-n has me assassinated.

Maleko808
Maleko808 in reply to monte1111

I have my money on j-o-h-n. That is if he can stop playing with his girlfriends.

You made the right bet. J-o-h-n's favorite girlfriend is Dolly Parton. She is unbelievably life-like.

7 years with stage 4. So far so good.

I am old in age--83, but new to PCa--11 mos. I am in this situation where I must stick around as long as I can because my wife has cerebral atrophy and is speeding on the down hill road to full blown dementia. Her mobility is limited and doesn't have much short term memory. I would like to participate in a trial, but feel deeply that I need to stick to the general SoC. I also have a shitpot of comorbidities to keep at bay, too. This forum has been a great help in so many ways. And I do like all the 😁🤔😥

From the beginning till now......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/05/2021 7:55 PM DST

j-o-h-n checking in. :)

You are just in time to be too late............🛑🛑🛑

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/08/2021 1:00 PM DST

4 more years!😷✌️

In a group such as this, those who do not do well exit quickly, & the group ends up with a disproportionate number of survivors. When I was first diagnosed, I made a point to pay attention to the 10-year survivors with mets. What did they do differently? A cynic will say 'well, those guys obviously didn't have serious disease' or 'they were lucky to have indolent cancer', but that's not true of many long-term survivors, IMO.

-Patrick

What are the most important things that the longer survivors have in common in your estimate?

Hi George,

I have used testosterone in one way or another for 16 years & I know that the others haven't. So is there something that they have in common? Treatments & lifestyle changes.

-Patrick

Hi Patrick, Does that mean that the guys with bad outcomes are not using testosterone or treatments? I don't really understand what you mean.George

Not at all. I'm saying that I'm an exception & you need to look at the other 10-year+ guys for a pattern.

I guess you could say that my adt breaks are "using T" I've done three of them.

10-year survivor. RP, 2 BCR's with radiation treatments each time and just finished 2 years of Lupron. My current PSA is undetectable. I take supplements, I have a fatty liver and I am fat as hell. 2.5 years ago I proactively went after a PSMA scan which lit up a pelvic lymph node and immediately radiated the whole pelvic theater. Hoping for 10 more years.

Just passed 5 yr mark

Nice Congrats getting to the 25% survival rate club. I got one more year.

15 years, but I died a few years ago

barrybayarea
barrybayarea in reply to 407ca

No using the D-word here!

I am a newbie - diagnosed in Oct 2019. Fighting hard! It is nice to read stories of 8,16,28 ... years, gives the rest of us hope. Keep them coming ...

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