How many people are over 5 years in S... - Advanced Prostate...

Advanced Prostate Cancer

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How many people are over 5 years in Stage 4 Prostate cancer?

greatjohn profile image

Everything that I find online says that 30% of people will go over five years with prostate cancer stage four. Since I am at eight years in January with stage four. I’m just wondering how lucky am I? People on this site talk about having had cancer for 15 years and having been eating a vegetarian are all organic or some kind of special diet, but my husband had cancer almost 14 years ago and he had radiation and has eaten all the same food that I’ve been eating since then. Hamburgers french fries, healthy salads, healthy soups, prime rib with horseradish and baked potatoes, all kinds of food!

When I came down with my cancer January 14, 2014, it has been a downward trip for me over the past nearly 8 years. I think we’re all different. I look at myself as amazing to have made it so long. When I mention that a doctor says I might have three more years, people on here think that’s short or not asking for much. To me the idea of living 11 years with stage for prostate cancer sounds like a miracle. I was just discussing with my husband in bed this morning that the last three years I have been when it’s gotten difficult. People still look at me and say they can’t believe I have cancer, but I feel a lot of pain and have a lot of issues including prostate cancer having gone to my brain. I thought originally it was just in the lining, but when I spoke to the brain oncologist and radiologist, it turns out it’s actually in my brain and causing swelling . To me the idea of living another three months seems like a miracle. I’m just curious really how many people have gone more than five years with stage four Prostate cancer? My husband who ate all the same things I ate is still alive after having regular Cancer 14 years ago. (All he did was radiation) I don’t think what you eat has that much to do with it, I think it’s more how lucky you are! I’m just a lucky son of a bitch. The chances of having prostate cancer go into the brain which now I have done is .05%. I’m special LOL.

136 Replies

You amaze me- you feeling lucky while you face such hard times. I believe your positive gratitude will serve you well with any treatment that you chose. Man you really are Great 😊!

And, if ok, I would like to add to your question- how often are those stats updated? How can you reasonably say a person died of specifically from APC when so many other conditions occur with or because of treatment side effects. Statistics help make educated decisions but outcomes are influenced by treatment choices along side lifestyle choices too. Maybe you didn’t need to change your diet !

In Canada with our universal health care, the PSA test cost extra and we have wondered if that deters men since they think it less important because it’s not covered 🤷🏻‍♀️. How many men find prostate cancer thru testing with no symptoms?

Gooilers profile image
Gooilers in reply to 5to0

In Alberta psa tests are covered in our health plan but not standard practice to routinely test. I am 6 years since discovering I had pc stage 4 and wonder if the testing had been routine would it have been found at an earlier stage.

5to0 profile image
5to0 in reply to Gooilers

In Ontario it’s $35 and most of our friends didn’t pay extra for it until my husband got Cancer. He has a family history and our GP tested him every year- he missed 1 year so within that time PSA hit 29 from 4 . His care has been top notch and we are so grateful for his team. It takes a village 🥰

Yes , you are special your Grace, good humor, and honesty has been an inspiration. Myself I am 2 2/2 years in with stage 4 high risk/aggressive prostate cancer. After seeing one of your posts I went back and read many more of them and can only hope when this disease turns truly ugly for me I can be like Great John. Best wishes

I'm not there yet, but coming up on 5 years in February. I expect to make it based on how things are right now, but of course we never know.

Anyone over 5 years with stage 4 is on the lucky side of the survival curve. The CHAARTED trial showed a 4.4 year overall survival for those who did ADT plus Docetaxel at diagnosis vs the Standard of Care (ADT alone).

That's been confirmed recently with the new data from PEACE 1. That trial confirmed ADT plus Docetaxel to have a 4.4 year overall survival while the new treatment of ADT plus Docetaxel plus Abiraterone will exceed 5 years median overall survival when median OS is reached. We can now say that most people with stage 4 will live for more than 5 years with treatment.

There are many of us that have done just fine following Standard of Care treatments without subscribing to what I call "diet religion". Because most of us who eat a reasonably healthy diet are not vocal about our diet choices, we don't get counted in the world of anecdotal evidence. So much of this zealousness about unproven diets and supplements is just pure self-promotion.

I love cooking and appreciate you sharing some the dishes you've made. It reminds me that eating the foods we enjoy is so much a part of quality of life.

So cheers to life! Hope you have more time to enjoy it.

I also read that just 1/4 of stage #4 guys go into an undetectable “remission “ .. I’ve been there six years now . I did cut out all bad foods . No signs of pc but I’m hoping my heart can work for a few mores years after the assaults of RT and adt . I’m with you! It’s amazing to live five years past a bad dx . 🙏

I'm 4 years 6 months out since being diagnosed. I'd say the odds were against me from the very beginning because it was castrate resistant from Day 1. It would've been nice if I could have had some years with the ADT alone. That said, I've been through almost all the conventional treatments including cutting off the family jewels...currently on my 13th dose of Jevtana...next one scheduled Monday after Thanksgiving. After Jevtana will be the LU177...I did heavy diet and exercise but after the Taxotere failed last year, I decided that letting loose a little would improve what years I have left. Like you, I remain very positive...but in the dark corners of my mind, it's hard not to ponder when this slow downhill slide of health will fall off a cliff. I can't remember feeling physically great...who would after so many years of surgery, radiation, chemo, immunotherapy etc. I like following you because you're very positive, and you're a bit ahead of me in the fight. I think the take away here is for all of us to do anything we can to improve our QOL because we'll never know when our time is up. Happy Thanksgiving!

I have always seen you as special.At one point I hoped food might have something to do with successful treatment. Maybe it does more for some than others. I don't know. However, what I feel fairly confident about is the effect of the drugs that treat us and comorbidities. Since coming to my conclusion I have chosen my diet to avoid comorbidities. I lowered my cholesterol to within normal range. Dropped my BMI to normal and my waste line (i.e. visceral fat) to a level recommended by research. I exercise regularly. I figure if my health will decline I prefer it start on a mountain and not a hill. I feel I have been very lucky as well and I can't say I disagree with the role luck plays. Others will attribute this to their God and I am 100% OK with that. I am lucky because the foods others more knowledgeable than me recommend is what I was eating for 10 year before dx and I really do like them. I just dropped saturated fats mostly. I am also lucky that I really enjoy my exercise and plan to keep doing it as long as can. I am lucky that I have been able to keep doing so throughout my treatment. I am lucky that I have a lot of people praying for me regardless of my views on religion.

May your luck continue for more than 3-4 years preferably in a different way than your current luck.

I expect not many are still around after 5 years with stage 4, and those who are gone obviously can't respond.

What we do need to consider are the treatment advances that have been made in the last few years, and are currently in clinical trials not yet ready for prime time. Unfortunately, not enough patients are participating in these trials. I am in my 3rd trial now, and so far so good.

For my dad, he had 4 years total from initial diagnosis, but only 2 years after diagnosis with stage 4. I regret not hitting the cancer hard at the start, but I didn't know any better. Every cancer case is unique. We never even got the opportunity to test out all our options, things just progressed so quickly at the end.

Unfortunately, I would have to agree that those who didn't pass the 5 year mark may not be here to reply :(

Your continued participation on this forum is greatly appreciated, especially since your Dad's recent passing. From what I have read from your previous posts, you really have nothing to regret regarding the various treatment options that were used for your Dad.

The most important thing for you to know is that you did the best you could. Your love and support helped him so much. I am sure he very much knew and appreciated that.

Where is a good place to get hooked with some clinical trials here in the US? I am under the care of doctors at Vanderbilt Medical Center.

I've read your incredible journey several times -- a tough going starting at so young an age -- only 50 yo. The struggle to keep yourself going -- which you have kept up & still maintain since Jan 2014 -- in addition to being caregiver to your dear husband makes you a Great Husband, a Great Human Being, and a Great Friend to so many here. You remain in my thoughts & prayers for miracles big & small to keep you going on & on....

greatjohn profile image
greatjohn in reply to Lyubov

The extra caregiver part that I play is kind of an amazing thing. It makes me wonder how long this could really last. We’re out right now for breakfast at Denny’s, enjoying ourselves! He requested it and I said that’s fine. Got to do what brings you pleasure.

MateoBeach profile image
MateoBeach in reply to greatjohn

Breakfast at Denny’s can be worthwhile just to bring up old fond memories from a healthier and gentler time. 🍳🥓🥞

5 years and 2 months since a Stage 4 high risk PCa diagnosis for my 49th birthday. I credit an aggressive medical team spurred on by an equally aggressive patient :) .... I have reached my goals of seeing my son graduate high school and my daughter graduate college, and now I get to witness her getting married tomorrow to a really nice young fella...

I am indeed fortunate and feel I am in extra time in this little soccer (football) match of mine, i.e., another chance to keep playing.... - Joe M.

greatjohn profile image
greatjohn in reply to SeosamhM

Great news!we are some of us very lucky and lots more to come. Enjoy

Scottybear profile image
Scottybear in reply to SeosamhM

Finish off that penalty kick and take home the cup!

SeosamhM profile image
SeosamhM in reply to Scottybear

I feel more like the goalie defending the PK!

youtube.com/watch?v=8F9jXYO...

4 yrs 8 mos.....i think 5yrs is a real hurdle...ifwe clear it we may go 5 more...butgetting tofive...fingers x

Wishing you all the best of luck!

I do see men post on anniversaries how they have survived for many years -some seem to post less frequently since they are in durable remissions?

OK, here I go. I have 80 months (6.6 years) under my belt. First diagnosed with a PSA of 850, four bone mets and more lymph node involvement than they could accurately count. The met on my L5 remains, everything else no longer shows on standard scans. My treatment has always been and remains SOC protocol. Last month I went to a LabCorp center and bought an ultra sensitive PSA test. It came back at 0.008. I plan on at least 5 more years, probably more with future treatments that hopefully are in the pipeline.

5to0 profile image
5to0 in reply to Nameless999

Hope it’s ok to ask - Was it found in a regular physical? Or did you have symptoms?

Nameless999 profile image
Nameless999 in reply to 5to0

My only symptom was frequent urination. I wrote that off due to my consumption of 80 ounces or so of water daily. I went in to my PCP for a different concern. While I was there I was given a complete blood test along with PSA testing. Funny thing was, two weeks earlier I ran in a marathon which qualified me to run in Boston. Life goes on. Finally 5to0, ask me anything you like, that's what this forum is for.

5to0 profile image
5to0 in reply to Nameless999

Wow qualified for Boston 🤩. My husband is a marathoner too. Thanks for your reply. You being 6+ years give hope to many

DonM253 profile image
DonM253 in reply to Nameless999

I apologize but what does SOC mean? Thank you.

Willydad profile image
Willydad in reply to DonM253

Standard of Care Don. Ever changing with intros of new treatments

DonM253 profile image
DonM253 in reply to Willydad

Thanks. Do you mind if I ask what your SOC was?

Willydad profile image
Willydad in reply to DonM253

Hi Don. I’ve updated my profile so please have a look there. Note that SOC varies from country to country (and even province to province where I live) at any given point in time. Some lead with new advance treatments, others eventually follow along (if societal health funding permits; obviously not the the case in many countries).

You are special! I believe the 30% number is way out of date. Zytiga alone pushed that number up and so many more new drugs and treatments have evolved. Re: food, yeah I am eating salmon and asparagus tonight. But that doesn't mean I'm not having ice cream. L'chaim!

Joes-dad profile image
Joes-dad in reply to GoBucks

I fully agree! When I was diagnosed a little over 4 years ago everything I read sounded like stage 4 was like a hourglass and I'd be gone in 5 years when the sand ran out. Then I saw the results of the Stampede trial. That was like a ray of light for me.

harv8 profile image
harv8 in reply to GoBucks

lchaim! fighting this 5 years

Eleven (11) years, almost to the day living with metastasized prostate cancer. Running low on options and the last 3-4 years, symptoms have affected my QOL. Neuropathy (legs and feet) and mild bone pain. Good luck to both of us.

greatjohn profile image
greatjohn in reply to skateguy

yes...to both of us...and to all others!

ElemanJ profile image
ElemanJ in reply to skateguy

Hi from Germany, in the main web forum here approx. 60% stage 4 patients live over 5 years.The no. of guys living over 10 years is increasing consistently with now 3rd and 4th line treatment available. It is common that 3 or less bone mets are now treated with SBRT. If this increases the OS is not proven, but PFS and QL.

I am now in 4th year, 5 in May 22.

Good luck to you guys.

In Nov 2013 I was Very metastatic at first diagnosis and had a PSA of 5,006. Details are in my Profile. I always tried to keep learning, to consult with the better experts I could find, to seek mutual support, to try to maintain a life that was balanced for me, and not to chase fads or other questionable things. Overall, I probably got lucky on the general effectiveness of my various treatments and how long each one worked. (My treatments began in the days before the advantages of things like ADT + Early Docetaxel or Early Zytiga were demonstrated in Clinical Trials.) Things got more complicated when I developed another type of deadly comorbid metastatic cancer a couple of years ago, and more recently went into home Hospice on Oct 1, 2021. Just one anecdotal story, of course.

greatjohn profile image
greatjohn in reply to ctarleton

well...we've both beat the 5 year time...so we did good already. Let's keep hoping for a good future and a smooth end of times. I just got off the internet where I ordered my cremation and pre-paid for it today. Makes me feel good to have things done in advance. I am wishing you all the best ! ! !

dublin1717 profile image
dublin1717 in reply to ctarleton

How are u doing these last few wks Charles?

ctarleton profile image
ctarleton in reply to dublin1717

Hi Dublin, Overall I'm OK. My legs are still weak, and I literally "fell off" a toilet onto the tile floor about a week ago, but my appetite is still OK, and neither of the cancers are creating any major pains yet. The Hospice staff have been very good. I, too, have been tying-up some loose ends on things that very quickly get put into an entirely new perspective when one actually does go into Hospice care.

dublin1717 profile image
dublin1717 in reply to ctarleton

Keep in touch for as long as you can Charles. We need your input, help and experienced advice. Hope you have a good family support network of loved ones around you. 💙🙏🏻💙

Hello GJ, I have been battling this beast for eight ears and six months. My initial PSA was just below 1700 with extensive metastases from my neck to my knees. Fortunately, no soft tissue involvement strictly in the bones and lymph glands. I have managed to keep it under control with Zoladex (goserelin) since initial diagnosis and Xtandi (enzalutamide) for the last five years. That's it, other than that Prolia (denosumab) every six months for bone strength. I was on Firmagon (degarelix) for about a year. Like you I consider myself a lucky person.

What is your qol with all this time

Hello, Up until a few weeks ago it was pretty good. Peripheral neuropathy in my right foot and possible nerve damage due to compressed discs in my lower back is slowing me down. I now use a cane if I am outside the house or using stairs. I hope to see my doctor and receive a telephone call from my oncologist next week. Between the two of them I hope to get a scan which might shed some light on what has brought this on.

March 2016 cancer detected. Prostate robotically removed in June 2016. PSA was persistent after surgery and 40 sessions of radiation . PSA continued to go up through it all. Put into clinical trial at UCSF for GA68 PSMA scan. October of 2018 lung metastasis detected with trial scan. Many nodules . In lungs only. Mid November of 2018 PSA rise stops at start of Zytiga/Prednisone/Lupron . Within 3 months down to <.014 other scans (last month) <.006 now. Never a rise since and scans that can see nodules no growth in those (4-6mm). Last November with consultation from my "local" and UCSF Oncologists I asked for a ADT vacation. I have been on it now a year. PSA done every 3 months and body scan has now gone from every 3 months to 6. My testosterone continues to recover. Now at 480. Still have side effects that may be permanent from ADT?

Its been 6 years for my Dad. Greatjohn Dad's first sympton was a slight seizure. Prostate cancer. Yes to the brain. Our family all panicked and thought this journey would be a short one but every treatment gives us all hope and hope is everything. There were four tumours . One was surgically removed the other 3 to the base of his brain radiated. Only one came back and that was hit again with radiation. Then spread to the adrenal glands. Yes again very rare. He has had 2 Lu177 treatments. One adrenal tumour is gone the other is almost gone his PSA .38. I wished you had had similar success with Lu177 BUT he has now contracted COVID. He was doing so well but COVID could be a game changer. He is 90 in January. Dad also eats and drinks what he likes. Loves a beer and likes his fried foods. You are an inspiration to all of us on this site Greatjohn. Sending you and your family lots of love and hope from our family. Kerrie 💞

John,

You know most of my story. At diagnosis I had a Gleason score of 9 and PSA of 39. This is considered a high grade cancer with a poor outcome. At surgery it was discovered the cancer had spread outside the prostate. So in addition to the Gleason score of 9, I had stage 4 prostate cancer. I had the orchiectomy and 4 years later external beam radiation. Since the radiation I have survived with only casodex, abiraterone and xtandi. I also credit an off market drug (DCA) with providing me 29 years of good quality life. As I have said before, days after my diagnosis I became a vegetarian and later added fish. I always eat healthy, organic, no GMOs or additives in my food. Add in yoga and meditation.

Did my diet give me extra years with high grade cancer? I don't know. I have been very fortunate. But I don't think I would have made it this far without God and eating right.

greatjohn profile image
greatjohn in reply to Magnus1964

you did GREAT ! ! !

tango65 profile image
tango65 in reply to Magnus1964

Great results, particularly with a Gleason 9. Great discipline to do the diet change and keep it for so long. How do you get the DCA?

Magnus1964 profile image
Magnus1964 in reply to tango65

Back when it first came out as a possible tool to fight prostate cancer, I had to get it off the internet. The FDA fought for a long time to ban DCA. It was a already an approved drug for lactic acidosis. A Canadian researcher discovered that it could induce Pca cell death. Today you can but it on Amazon. Just search Sodium Dichloroacetate. Be careful who you buy it from/

Do you continue to use DCA?

No, Sodium Dichloroacetate (DCA) is (was) a six week treatment. It is taken twice daily with water, Alpha Lipoic Acid and Vitamin B1 for six weeks.

Chadsdad profile image
Chadsdad in reply to Magnus1964

Have you had any issues with peripheral neuropathy using DCA ?

Chadsdad profile image
Chadsdad in reply to Chadsdad

Sorry, read a little father down and answered my own question.

Magnus1964 profile image
Magnus1964 in reply to Chadsdad

I still have peripheral neuropathy from DCA. It took me a few years to find the right combination of supplements and prescriptions to deal with it. Here is the list:

1. Mirapex 1 tablet 0.25mg - prescription

2. Gabapentin 2 capsules (300mg) - prescription

3. Acetyl L-Carnitine 1 capsule 500mg - over the counter

4. Leg Cramps (by Hylands) 2 tablets over the counter

5. Aleve PM 2 220mg - over the counter. Because Aleve can cause liver damage with long term use I have substituted Zyflamend 1 capsule.

I take each of these drugs at least 20 minutes apart in the early evening. This helps me get a good nights sleep. The effects last all day long

novatimo profile image
novatimo in reply to Magnus1964

Who do you recommend as a reputable seller of DCA?

Magnus1964 profile image
Magnus1964 in reply to novatimo

You can now find DCA on Amazon. I would recommend the powder that can be measured and mixed to your weight specifications.

5to0 profile image
5to0 in reply to Magnus1964

Any Side effects for you ?

Magnus1964 profile image
Magnus1964 in reply to 5to0

Neuropathy in my feet. Thankfully I have some prescription drugs and supplements that take care of it.

Ramp7 profile image
Ramp7 in reply to Magnus1964

I'll have to investigate Sodium Dichloroacetate. Interesting.

Congrats to the 5year Brothers💙This is a wonderful group with #stageivpca Survivors, who've all gone through an f'in roller coaster ride of our lives

Yea, old data said a 28 % chance of making this point. But, all the new meds and therapies will render that data passe

In my case, Dx in 01 /2015 with mets to L ureter lymph nodes. PSA at 840.2,

GL 7(4+3), and some GL8 in an 18 core blind biopsy.

ADT stat, then 15 Taxotere chemos in 2015, PSA down to 0.7

Metformin/Lipitor in 2016, PSA nadir at 0.1 in the Summer of 2017, during an 18 month ADT Holiday.

Six Taxotere rechallenge in Spring 2021 failed, after Abiraterone and Xtandi failed in 2020. Now due to have #2 Cabazitaxel two days before Turkey Day.

What a long, strange trip it's been.

Keep on Truckin Fight on y'all ✌️

Randy

greatjohn profile image
greatjohn in reply to dockam

yeah....you're keeping on keeping on! Happy Thanksgiving.

Nameless999 profile image
Nameless999 in reply to dockam

Keep running brother.

Boywonder56 profile image
Boywonder56 in reply to dockam

Box of rain...if you dont need it pass iton...

Hey John, I guess it’s been approximately 13 years at stage 4, eighteen years from diagnosis. It’s hard to keep track of the time anymore. So happy you are staying positive. Keep up the fight.

My husband died after 2 1/2 years. First diagnosed with bone mets and then nephrostomy tubes, ADT, clinical trial, chemo and then nothing seemed to stem the massive leg edema, eventually both legs. He was a kind gentle wonderful man.

longleaf profile image
longleaf in reply to Howard100

So sorry for your loss. Praying.

Chiquis profile image
Chiquis in reply to Howard100

🙏😢

Thank you for posting. I salute you and wish you well. I'm only at 4years3months, but see you as an inspiration. Of course, I've taken chemo, radiation, xofigo, various hormone therapies, spine surgery and whatnot, but believe good support, determination and positivity are vital. Plus laughing when I fall over.

I am 7 years , diagnosed at 49 years old . T4n1m1a PSA 342Docetaxl, biclutamide , zoladex, abiraterone for nearly 6 years now . Diet changed a bit , but run most days with a smile . Still running 150mile races , big plans for 2022 fu draining as i plod . Doc told me 2 years at the outset . I know I am lucky .

I’m on year 8 with stage 4. The MOs I’ve spoken with on that stat say it’s dated and looking in the rear view mirror. Treatments today are much better resulting in longer life spans.

Schwah

Good morning John. 64 months here. I’ve been stable up until now , wonderful ride, fast found a new hot spot on my ribs so will have to see how this works out. Hoping for 8 but will take whatever they give me 🙏🙏🙏

My metastatic disease was diagnosed in 2009. It was determined to be Oglio-metastatic in that I had less than 9 lesions. I’ve been in treatment on and off ever since and still play golf and tennis and appear to be healthy. I feel healthy even though I had a PC lesion removed surgically from the brain 3 months ago. Latest Axumin scan was clear. Latest brain image clear as well. Great John, let’s just keep on going until we don’t. Blessings brother.

Chuck was diagnosed in 2008 (age 49) and given five years. He celebrated his 63rd bday this year. It spread to his spine and he lost the ability to walk, but after successful spinal surgery he was back walking 3-4 miles each day. Been on Xtandi almost five years. Like you, he enjoys good food and looks great! He does suffer awful pain from the many bone mets and other issues, but is thankful to be alive. Your positive attitude and love for your husband and pup carry you thru it all. I appreciate your posts and pictures.

I’m at 4 years and the path ahead is definitely looking much more difficult. Lu177 seems not to be effective on my bone Mets cutting back my options.

This is such a great hopeful and life affirming post. Mike has made it 2 1/2 years since diagnosis and we are hopeful to beat the 5 year mark.

Greatjohn, I moved to a mets-showing stage 4 in early 2011. Yesterday I had dosing #9 of cabazitaxel. My PSA has been going up about 18 each month on cabaz, but it is Mayo's last protocol treatment, and we are in a holding pattern hoping to make it to Lu177's FDA-approval (and that I'm PSMA-avid, and that my bone marrow doesn't react like yours did!). Please know you are one of the guys here who inspires me and gives me hope!

graph of PCa Treatments

I’m coming up on 8 years in March. Cancer was dormant for about 6 years, now PSA is slightly detectable on an US test. I’ve got some options when the time comes they are necessary according to my MO. Meanwhile taking care of myself in preparation for the battle I know lies ahead and focus on enjoying every day - they are a gift, I’m already beyond my original expiration date.

Ed

greatjohn profile image
greatjohn in reply to EdBar

You’re doing great

You my friend are a symbol of hope. I'm fighting the Beast four years now and don't plan on going out just yet. Never give up Never surrender. Leo

I am still alive! Praise The Lord Jesus! I was diagnosed in May of 2013, prostate out August 1, 39 radiation treatments Nov-Dec, back to work Jan 2014, great pain in upper back started July 2014, back surgery for 3 almost totally eaten-up vertebrae in Nov 2014(I had no idea that prostate cancer ate bone), neck brace for 2 years, 9 months and 4 days(who’s counting?😁), had started Lupron right after surgery which was very expensive even with my company’s insurance), had to retire Nov 2015 because I couldn’t do my courier job(age 61), chemo March 2018(6 treatments) due to PSA going up, 5 months later PSA started back up, added Xtandi and Xgeva to my Lupron around Dec 2018, Dec 2020 PSA starts going back up, Axumin PET Scan June 2021, tumor found in abdominal wall, surgery removed tumor Nov 3, 2021(appointment on 23rd for results), no news is good news, I guess? Sorry I took so long to say, Stage 4 PCa for 8 years, 6 months! Still Alive, Praise The Lord!

I’m at 28 months. Sounds better than 2 years. Your story has always inspired me. I just turned 65 and had the senior flu shot. When I told my Onc help get a couple of more he said let’s shoot for 10. I like the optimism. Wish I was more like that. Best of luck to you. Keep the food pictures coming.

Gleason 9, 4+5 in 2012.

Today PSA less than .1 (which they consider undetectabale) with no current advancement.

No special diet but eat smart and lots of exercise and movement. Go figure....

5 years of treatment coming up on Monday. But probably 4 or more years before the official diagnosis. Still going strong.

It looks like I might be the grandaddy warrior so far on this post. Diagnosed 2000. Gleason 9. Radical Prostatectomy 1/2001. ADT. IMRT. SBRT. Provenge. Currently on Xtandi as mono therapy for 7 years. Keep on keeping on everyone. One day at a time.

You and magnus

I am coming up on 6 years but the treatments have aged me and stolen my strength and energy. My wife and I work and can't afford to work less hours until we find a house to provide a fixed housing expense.

I was diagnosed in 2016, had a prostatectomy in 2017 with Lupron, they found it contained in the prostate with negative margins and yet lymph node involvement!). It has gotten into my system via micro cells. An Axumin scan later found I had a soft tissue tumor in my pelvic area and a bone lesion on my left femur, had radiation treatment and have been taking Zytiga since then.

For me, I am like you and read the same articles, check the same nanograms and statistics, as well as read the stories here. I think the fact that the statistics are so out of date, compared with current treatment, they are unlikely to be accurate, so there may be a higher than 30% survival rate. On the other hand, imaging options are terrible, especially when you have to go off of any ADT to raise your PSA enough to get a somewhat accurate scan.

I think that everyone's cancer is so unique, that they cannot be compared. Yours is very aggressive and able to easily metastasize to vastly different parts of your body and perhaps even produce its own PSA.. I look at cancer as a virus that constantly mutates to reemerge stronger and more aggressive.

For me, comparisons are hard to make and I try to avoid them. My fear is of lingering with painful bone lesions, unable to take care of my self. I know it will kill me, barring the beer truck scenario! I would rather have less time but more enjoyment of the time I have.

Let us know what you find out. Maybe you can create a new nanogram. Good luck.

Hi John. 12 yes since Dx. 7 1/2 in stage 4. Eat everything, just more of the good stuff, less of the bad. Red wine and beer still good friends. I think what has helped is staying physically very active. Big dog insists on lots of walks, plus still playing lots of hockey and golf.

Diagnosed stage four in 2012. Went on Eligard and Casodex until fall 2016. Started IP-6 summer of 2015. Moved to Florida and switched to Lupron and dropped Casodex. Became a vegan in 2018. My current PSA is 0.01.

Hi GJ

See your good old positivism is rubbing on for so many. You my good friend will be here with us for a good long time, all of us are rooting for you ❤️

Myself diagnosed in October 2017, G 4+3, PSA 192, did Docetaxel in 2018, 6 cycles brought PSA down to 1.7. Now rechallenge Docetaxel again as the PSA was at 35, doing cycle no 9, May keep going on as the last count PSA is at 16. So, just crossed the 4 year mark hoping to be around for a long time more 😊 Didn’t do much on the side of Diet, eat moderate and walk at least 3-4 times a week for 3-4 km each time.

So my dear, dear friend stay positive as everyone is not the same. Be happy as you are in the Present. And to all in this forum my best love and hugs and like we always say never give up, don’t ever and smile and laugh as much as we can in pain or not 👌

My very best to you GJ, your hubby and your lovely and dear pet and to all the brothers and caregivers. Season Greetings and good cheer to all.

And please stay safe 😷

Haniff ❤️

greatjohn profile image
greatjohn in reply to Haniff

Thanks for your kindness

I am celebrating my4th year anniversary today since back surgery for spinal compression. Since then I rehabbed to continue playing golf, soccer and skiing. I am 59 years old. I did radiation this past week to keep spinal Mets at bay.John I am looking forward to reading your post on my 5th anniversary. All the best!

This is an encouraging post GJ. I love the success stories. Hubby was diagnosed 8 1/2 years ago. He’s now on Lynparza. He’s currently feeling pretty good after a rough year of Xtandi. ADT for 7 years. Mets to the spine and one rib, but they are not causing any pain. Much to be thankful for this year.

You are truly special and I so appreciate your sharing of your journey which shines a loving light for all to see! I thank you!

My husband is one of those young, fit, healthy guys that was diagnosed at 55 with Stage IV BRCA2 aggressive! We have done almost all alternative and Hyperthermia in Germany and Canada annually. He's still going strong at 5.5 years. Allopathic treatments have been lupron on/off carefully. And just in this last year, radiation with hyperthermia to hip/vertebra. TURP. And most recently his PSA shot up so we started him on Xtandi. It's back down. So keep on keeping on!! He's getting stronger and his scans show bone improvement!

greatjohn profile image
greatjohn in reply to Rsdutcher7

congratulations!

Hey Greatjohn,kudos to your eight years living with stage 4. I am on my eight year now. I try not to dwell on the number of years i have lived with this disease, which like you is a miracle, but steel myself for the battles ahead. I am a man of faith and believe that when its your time, whether 1year or 10 ,you will get the call. And we don't know when this will be. My kids say that I will probably die of some other ailment . I too, like you enjoy all the regular foods and have not gone into some crazy restrictive diet. I figure if you are going to die anyway you might as well enjoy what you eat as no one has proven that any diet will help with the fight.

My one fear though is that as years pass by I am running out of road .

My hope is that they will find a medication that will add a few more years ,and then another few years. So far my cancer has stayed metastezised in my bones. I hope it can stay that way.

So keep up the good fight and hopefully we will chat again in 2022. Enjoy those baked potatoes my favourite with all the fixings!

Me. Coming up on 9 years. PSA undetectable on darolutamide presently

Chiquis profile image
Chiquis in reply to wagscure259

Congratulations!!🙏👍

congratulations...and WOW

For a GS 9 5+4 and numerous bony mets just alot of prayers and I guess the mutations I might have (?). I do work out hard 7 days a week and have lost 20 lbs. this last year and gained a fair amount of muscle. I know I have been blessed and also have inspired by many on this forum especially you for which I am thankful and always live with an attitude of gratitude. I pray daily for all on this forum and their caregivers because “ the prayers of a righteous man avails much”Happy thanksgiving to you and your husband.

Your story seems amazing. Your destiny is one many would trade to have. Thanks so much 🍀

Greetings Great John! You are a Warrior and a Hero and I appreciate all of your posts.

Stage 4 PCa for 10 years, 5 months. Seems like yesterday when I got my biopsy results.Prostatectomy, 2 BCR's, 2 Radiation Sessions (Bed and Pelvis), 2 years of ADT. Spread only to Pelvic Lymph Node. PSA undetectable for the last 2.5 years.

Best wishes to you Brother!

Just starting but my MO says minimum 5 to 7 years my RO says who know could be a year could be 10 less optimistic… says I have a few bone Mets but probably lots of microscopic disease….

I think its almost impossible to prognosticate the survival length. I am 85. I was diagnosed by accident in 2007. I was symptomless. My calcium kept fall for no known reason. Tried vit D, calcium tabs , sunlight for 3 months. Then my alkaline phosphatase went up! Went for a bone scan, and found my bones were riddles with prostate cancer! I then checked my PSA. It was 946!! So I must have had the disease for quite sometime before that. Its 14 years since diagnosis, but it must have started probably 20 years ago. Metastatic disease cannot be cured, but it can be controlled. I responded well to Zoladex and Xjeva . Since then I have had recurrences off and on. I have had all the possible treatments in sequence. The latest is LU77 isotope combined with Veyonda. I have had 4 courses. My PSA is now 6.8. Apart from my other chronic diseases which are well controlled, I am mobile and lead a normal life. My metastases are: one in the spine at t6, and a few small nodes in the pelvis. I too am surprised at my survival. It time ir recurs, fortunately a new treatment is available to carry me through a little longer!

greatjohn profile image
greatjohn in reply to AveoR24

I did LU177 and had my platelets dropped to 6000 and my hemoglobin to 7. One treatment almost killed me...and after taking it...my PSA went from around 400 to 1017. It's a luck thing....some are lucky....some are not. At 64...I'd love a few more years, but it's looking "not so obvious".

John with you positive attitude you will set the record. We are all cheering you on!!

We have been riding the rollercoaster for 12 years. Diagnosis was result of high blood pressure at surgeon's 2 yr. post op checkup. Sent to a new GP who did the full new patient workup. Surprise! PSA 40 punched his ticket for the ride of his life. QOL is part of the experience: chemo fog, numbness, loss of taste. Nearly lost him to a calcium blocked aortic valve. If there was a rare side effect of a treatment, he experienced it. He finally got lucky with Keytruda and has been undetectable for 2 yrs. But recently he developed blue nail beds in his dominate hand 3 days after unusual exertion caused pain in the same arm/shoulder. Two weeks later when he could finally be seen by the veinous center, the hand was back to normal so they did nothing. They think there probably was a blood clot that shed cells into the arm that were trapped in the capillaries of the nail bed. I suspect that some cells must have made it into his brain, because he suddenly became fixated on the federal estimated income tax payments for 2021, angrily insisting that they were a penalty for 2020. This is an intelligent man who prepared our taxes for 50 years.

greatjohn profile image
greatjohn in reply to GAdrummer

wishing the best. This sounds painful.

You are special great John, and it’s got nothing to do with the longevity of your diagnosis. I too agree that diet doesn’t seem to impact outcomes, albeit healthy eating is great.

I hope to be reading your posts for a long time to come

Take care

Keep eating !!

greatjohn profile image
greatjohn in reply to Bebby1

such kind words...THANKS! and back to you!

Some background...

I am the youngest of 8 children in my family, and as such, I was always the follower, always benefitted from others experience and watching what they did or didn't do and their successes or failures that went along with their decisions. It had benefitted me greatly over the years, lol, avoiding some major mistakes ...

Point is, I feel the same way as I've encountered this and another forum or two, that I'm a newbie in the game and have been afforded a great luxury to benefit by the journey of others who share their experiences and journey with this disease. And their are some who have shown themselves as a beacon, a lighthouse in the fog, giving hope that there is perilous rocks ahead in the surf, but there is also safe harbor, and yet ultimately all ships come to Port.

John, you and others here have provided so much insight and hope to people like me. Encouragement and knowledge that we may live with the disease rather than surrender to it! A value that cannot be measured or correctly placed...

I was diagnosed with PCa just 4 short years ago at the age of 53, and it's been a wild ride so far. RP in 18', and persistent PSA led to ADT in 18-19 with IMRT in early 19', persistent PSA in 20' and symptoms of flank pain led to an attempted Appendectomy which discovered my Stage IV disease, subsequent completion of the Appendectomy and Partial/Hemi Colectomy to remove lesions and also Docetaxel/ADT began early this year. So only now, just one year with Stage IV, again, a newbie! My diagnosis includes the Stage IV Mets to the Peritoneal and Appendix, very rare presentation of the disease, meaning no customers have gone before, no stratification ability due to the lack of history by other patients... I am, if you will, a boat adrift without a rudder!

But, with all those I have come across and met, especially here, I am not down or beaten, I refuse to surrender. I am actually encouraged and emboldened by the longevity I see and read about daily. I am amazed at how well others have done, and I think it provides pause and humility that we are stronger most of the time than we think.

I too have wondered at the question if how much time is left on my meter... And although it's there, I try not to compare myself to others, but envision a great length of time on the road ahead. Mainly because of everyone who has done so well, especially you John! I've seen the stats, the curves, the low % of patients who cross the decade mark. But by exhibition here, and by testament, those charts may be old news!

Great thread, and great question posed by an awesome selfless individual sharing his journey with us all.

Godspeed and Best Regards!

greatjohn profile image
greatjohn in reply to Cooolone

and you have my wishes for a "healthy feeling" long life. I am learning that sometimes the "pain" that comes...can make one not so sure of wishing for a LONG life. I've had such a GREAT life up .....up until the past 3 years of the cancer...that's it's hard to want to let these new "feelings" to shade how great life used to be. All the healthy, happy, easy BEST amount of years you can have.

John right behind you as I’ll be 7 years in Feb. I think my Keytruda is starting fail so not sure if 8 yrs. Is in my future.

greatjohn profile image
greatjohn in reply to Jackpine

I'll keep my fingers crossed for you!

I’m at 8 years, also. I’m blessed, lucky, grateful and feel as good as a 73-year old can, I guess. Plus I’m playing the best golf I’ve played in years and get in a couple of hours of pickleball 3 times/ week. Thanks be to God.

I’m sorry not all can the same. I keep all you guys in my prayers.

Diagnosed 2012...still on Lupron and Xtandi...so like 9 years. Did many supplements, PSA was .04 last time I checked it. Had no vacations from treatment. I get small bags of Zometa too. Take Aspirin and Tylenol for pain from neuropathy. On anti depressants Wellbutrin, Desipramine, and Prozac. Take Gabapentin for neuropathy in toes. I'm kinda weak a lot. Muscles are shot. Did plumbing yesterday , felt like a zombie the next day. Don't excercise enough. I also take Lipitor , Atenolol and Tapazole for hyperthyroidism. I'll probably croak soon but every morning I'm down for breakfast. Still in clinical at NIH. They're giving me Xtandi. They had a two branch study going. It was Prostvac and Xtandi or just Xtandi. I got in the ' just Xtandi' arm. They found the Prostvac ( a fowel pox vaccine) didn't work with Xtandi well enough to continue that arm. They say I can continue with Xtandi as long as I benefit. I have to take Lupron with it so I'm tired a lot. I feel bad for those who are on such a rollercoaster with so many treatments. I had 3 bone Mets that kinda went away. I also had 'tree in bud' in right lung with glass paucity but that kinda disappeared. I think Xtandi wiped out my nose hairs and cilia in right trachea so off white colored phlegm comes up sometimes. I thought they'd have a cure by now but shoot...

greatjohn profile image
greatjohn in reply to Kevinski65

Your story is very interesting it makes me more aware of what I’m believing now. That people have a destiny and it doesn’t make much difference what they do they have a destiny. Some people try really hard and and end up dead.I know some of these. And then you take me as an example…. The last six years nothing really seem to work, but my cancer didn’t really seem to spread much. But then I heard of the fabulous LU177, by the luck of all luck was able to get into a study in Omaha. It turned out to be like a death sentence for me my PSA went from around 150 to a little over 1000 at my bone marrow stop working damaged by the LU177 and now I have had a mini low Hemoglobin‘s and amazingly low platelets. I did it back in April of this year and it’s amazing I’m still alive. It’s now gone to my actual brain. I think some people just get lucky, their destiny is better than others destiny. I see so many very young people on here, are used to be very upset that I started this journey at 57, but I see so many more people starting it in their 40s. My 40s were amazing. My whole life was amazing. However I would not say this cancer journey was something I would wish on my worst enemy. My journey is much harder because I am also the caregiver to my husband who has Lewy body dementia…

I have no caregiver, but I have Hospice on speed dial in my phone. It doesn’t sound like a really good thing. And I’m on no anti-depressants, but I have found the joy of oxycodone. Because with bone cancer in every bone in my body and now my brain. Pain is an issue. Best of luck to you keeping up a good destiny.

Kevinski65 profile image
Kevinski65 in reply to greatjohn

My wife has hairy cell leukemia, a rare chronic leukemia. She's was diagnosed in 1996. After running out of treatments here I found a trial at NIH. She's almost died many times; low platelets, low neutrophils, anemia red cells down to 5. I've gotten. Her platelets and Red cells by getting aggressive at the hospital. They always seem to find a new treatment for her to go a few more years. We are both caring for each other. It's Deen a long rough road so I know what you mean.

5to0 profile image
5to0 in reply to Kevinski65

So sorry that you have had to weather such a rough storm and how lucky you are both to have each other and that you don’t take that for granted. Sending you both some warm hopeful energy.

greatjohn profile image
greatjohn in reply to Kevinski65

It’s not easy. It’s really not easy. Wishing you all the best.

5 years since diagnosis of Gleason 9 with lymph mets, but I’m pretty sure i was a late diagnosis since I had urinary systems for several years before that. I had 6 rounds of chemo, get Lupron and Xtandi and do intermittent fasting three days a week. PSA has been rising - now 8.9. Never did get lower than 2.7.

Six years and in good health. My aggressive tubular prostate cancer is still ADT sensitive for which I am very grateful.

I will be ten years in Stage 4 in January. You are one amazing fellow having thrown the book at this disease!I had every scan imaginable last week, a requirement to enter a new immunotherapy trial next month. The PSMA-PET revealed mets I didn’t know existed in lymph nodes in my neck and also in my bladder. But as my oncologist said I can have a 100 lymph node mets & as long as I am in no pain I can join this Phase 1 trial. I have one bone met that is growing rapidly. No pain.

Absent the trial, Lu-177 and another round of chemo might slow things down. I will hold these in reserve.

Have a happy thanksgiving!

greatjohn profile image
greatjohn in reply to tallguy2

Thanks so much and happy Thanksgiving to you!

My husband was originally diagnosed in 2005 with gleason score of 7 and PSA was like 6. He had 50 radiation treatments and then started on Eligard. That was it for years then PSA started slowly rising and the cancer had went to his bones and some lymph nodes by then and eventually in Dec. 2016 PSA was really rising and they wanted to give him Chemo and he had like 6 treatments. PSA went down but not to normal so then he was started on Zytiga I believe it was in August 2017. Then in March 2018 he had the 3 Provenge treatments. But then in May 2018 when they did more scans it was still spreading and he was having to have blood transfusions like almost monthly or Procrit injections for his blood. The Dr. at the VA told him in May 2019 he had maybe 14-16 months to live. But he made it 20 months. But from the time of it being considered stage 4 once it went to his bones and lymph nodes lived 4 years and 1 month. It had went to his brain and we had absolutely no clue it was even there. There are a few other treatments he had done also. The one and only good thing I thank God for everyday for is that he never suffered or had any pain that tylenol couldn't handle from the bone mets. He went very peacefully in his sleep at home in our bed and never had to have not even one of the hospice drugs they bring in for later. He went the way he wanted in Jan. this year after fighting this disease for 15 years from diagnosis at age 79.

Chiquis profile image
Chiquis in reply to sgrama

That's my daily prayer, for my husband not to have any pain and for him to go peaceful in his sleep. Thanks you for sharing. You are not alone🙏

sgrama profile image
sgrama in reply to Chiquis

That's about the only thing that keeps me hanging in there now without him is knowing he went exactly the way he wanted if he had to leave. It gives me peace knowing that even though I miss him terribly bad every second of the day. You're very welcome I just want people on here to know that it doesn't always end with horrible pain. My thoughts and prayers go out to you and your family. Take Care.

5to0 profile image
5to0 in reply to sgrama

Thanks for sharing - gave comfort to me

sgrama profile image
sgrama in reply to 5to0

You're so very welcome, Happy Thanksgiving to you and your family. Take Care

Thank you so much for posting this! Every comment has given great info. I have enjoyed all of your posts greatjohn. Amazing that you are taking such great care of your husband as well. I was diagnosed with breast cancer 2 yrs after my husband's diagnosis. Had a dbl mastectomy and so far so good. Luckily we'd moved my parents in 3 years ago. My mom is a big help along with our 3 kids (14, 16 and 18 at my husband's diagnosis)My husband was diagnosed 4 years and 4 months ago at age 49. Gleason 9; Mets to spine, hip, pelvic bone, local lymphs; PSA over 677 (lovely urologist never did tests during 2 years of symptoms*self catheterizing for a year, sweats, UTIs etc* and family history- my husband had turp where cancer was found. Said urologist put him on bicalutimide for 2 weeks after finding cancer before doing first PSA. So who knows what PSA was. I think he was trying to cover his butt- Wish I'd known more then)

I started research and we found great doctors. My husband was in great shape otherwise at diagnosis so we hit it hard using Chaarted trial. ADT plus chemo then straight to zytiga plus prednisone ever since. He added Xgeva this past year. PSA has gone down SLOWLY- 25 adter chemo but then after over 4 years still never gone below 2.8. But never gone up except tenth ticks explained by Oncs as not significant. Last year's scans in Dec showed no active mets! We are coming up on this year's scans in two weeks so I have scanxiety now.

He works and is active. I've noticed more fatigue and some fogginess at times- especially lately- but no pain.

He did go vegan and no alcohol for first two years and upped his weightlifting. I think he just wanted to feel some control- not that he thought that diet would be curative. He now added seafood and now has beer or wine occasionally and a bourbon on rare nights.

Your posts are a great inspiration to me and I'm so very grateful for each of them. Thank you!! Happy Thanksgiving. Enjoy all the good stuff!

greatjohn profile image
greatjohn in reply to pakb

Happy Thanksgiving and good luck with everything! Thanks for your kind words

Hey John- I tried the vegan thing after Dx. But I was living in remote Alaska where you get your groceries from the Forest and ocean, and vegetables were poor quality and expensive. But all the fresh wild salmon you want for free. I think the diet and supplement conservation on this forum is about trying to have some amount of control. If you eat vegan or not I don’t really think matters. I think unless you really really understand biochemistry- supplements can be risky. In the end it’s all about balance. Good food with carbs in moderation and good exercise. I had smoked wild goose last night and I’m still alive this morning. Looking to giving thanks for an elk roast on t-day. Peace brother

greatjohn profile image
greatjohn in reply to Chugach

your story is amazing. Having to leave Alaska, etc. I feel as though the most important thing we must realize is that we have a "Destiny". Wish you all the best. Happy Thanksgiving.

Started at stage 4 and PSA of 1,505 five years and five months ago. Still battling. Getting those good days is getting harder all the time. But we’re still swinging!

greatjohn profile image
greatjohn in reply to LonnieLue

For me almost all days have some goodness in them, but almost all days have some times that are really tough. Wishing you all the best.

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