Life expectancy

[Larryfanman]

What is the longest that anyone knows of— a person living with metastatic prostate cancer

[ctarleton]

I know a man in a local Support Group who is at least a 12 year survivor after his original diagnosis as already metastatic.

I'm a 4 1/2 year survivor after also being originally diagnosed as very metastatic with a PSA of 5,006.

Both of us may be statistical outliers, with a combination of lucky treatments and favorable biological responses to our treatments. I've known others who were diagnosed after I was and who have died within the past year.

This classic essay The Median Isn’t the Message – by Stephen Jay Gould also comes to mind.

jonathantreasure.com/the-me...

Charles

[Larryfanman in reply to ctarleton]

Thank you for replying

I just got recently diagnosed with stage 4 prostate cancer – – had spread to the bones and lip nodes — at first you think this is absolute death sentence —

Maybe ( hopefully ) with today’s medicine

There might be a slim chance Of

10-12- or 15 years ??

Sounds like you are doing great — are you able to keep your PSA under control ??

[ctarleton in reply to Larryfanman]

Hi again, Larry.

Here's a summary of my treatments and PSA rollercoaster, to date. Most of the time has been at low PSA levels with minimal symptoms from the cancer, and the usual side effects from the treatments. I fully realize that I am a sample size of one, when it comes to the any of the statistics. (When I was first diagnosed, the options for ADT + early Chemo or ADT + early Zytiga were not yet available, as a result of Clinical Trials showing some long term Overall Survival benefits.) We are also More than just our disease or medical chart information and treatments & responses to treatments. Coming to terms with the personal/emotional aspect of our new reality in the evolving present moment is hugely important, too. I may never be cured of my disease, but I can be healed in many ways.

Charles

Dx Nov 2013 Metastatic Prostate Cancer at Age 65

Numerous Bone Mets and Lymph Nodes, PSA 5,006

ADT Lupron + Zometa, PSA Nadir 1.0

Resistance after two years.

Short rechallenge Casodex.

Oct 2016 Provenge

Dec 2016 Start Xtandi, PSA 95

Sep 2017 Xtandi PSA Nadir 1.2

May 2018 PSA 1.8

[Daddyishealing in reply to ctarleton]

Wow 5 years since dx and going strong what an inspiration xoxo tyfs

[Schwah]

There are people living 15 and 20 years after diagnosis. Although unusual, some people never have a recurrence after Lupron. My radiologist tells me that he has a guy he’s been zapping met spots on for 18 years and he’s fine. If it’s earky with minimum Mets, go all out now while the beast is still weak. I had 3 Mets and I did chemo, Lupron and zytega at the same time and at month 6 had radiation on the 3 spots. My psa just came in at .02. My dr believes that long term remission and even cures can be had with a combination of therapies early in the met process. Especially with minimal Mets. It’s called ogliometastic cancer. He devotes a chapter to the subject in his new book “the key to Prostate cancer”. Like with AIDS when no single drug could do the job , a cocktail of drugs had provided long term remission.

Schwah

[Larryfanman in reply to Schwah]

Schrag

THANK YOU FOR REPLYING

Is your doctor —DR.SCHOLZ

If so- how long have you been going to him ?and was you able to see him directly ?

Is he a hard doctor to make an appointment with ?

[Schwah in reply to Larryfanman]

Yes. Scholz in marina del Rey ca is my guy. He has three drs in his group that are all great. Sometimes it can take a couple of months to get an appointment but usually you can pay for a phone consult with one of them for seconf opinion although yo may have to be out from out of town to do a phone appt.

I actually got a second opinion from ucla and while they agreed on Lupron plus zytega or Lupron plus chemo early on for Mets they could not go along with all 3 early together because There’s no study confirming it. They did say it made sense and they like a study but they’d never recommend something without a study.

Steve Schwartz

714-390-5716

[Larryfanman in reply to Schwah]

What does it usually cost for a second opinion?

How for do you live from DR SCHWARTZ ?

Did you have any lymph nodes involved ?

I have 2 or 3 bone spots ( 2 in the spine & maybe one in left thie—)

Plus 3 or 4 lymph nodes in the front area by the bladder

Diagnosed 3 &1/2 mo. Ago

PSA at that time was 28

After 1st mo. Lupton & chemo .88

After 2nd mo. .48

After 3rd mo. .23

This is where I’m at now ______↗️

I ‘m a veteran & for now I’m using VA hospitals—but in the next 4 or 5 mo. I’m going to get medicare —

At that time I might have more options

[Schwah in reply to Larryfanman]

Your insurance usually pays for a second opinion but if not it’s a few hundred (not thousands) . If you have trouble getting a phone appointment Larry, you can email me directly at [e-mail] and next week I’ll try and help you get one. Either way ask your dr about adding zytega to your regimen. The recent studies have shown zytega with Luprin adds 40% to lifespan if used early with vs lupron or zytega alone. So we know zytega with lupron works better than either alone. And lupron with chemo adds 20% to lifespan if given early on together. So A + B is better than A or B alone. And B + C is better than B or C alone. So Scholz theory is that A + B + C should be better than all of them. No proof yet because no studies yet. But the theory is get the mobster while it’s still weak . So far so good with me as my PSA is down to .02. That’s lower than anyone I’ve heard of yet on this forum. Also lift weights diligently and hard 3 times a week. All muscle groups and the Lupron will be much easier.

Schwah

[Dayatatime]

The fears racing through your mind have been felt by everyone here at one point or another. In every outcome there are men that defy odds, men that are the medium and unfortunately those that don't fare as well no matter what they do. We are all individuals with different genetics, different medical teams and different opinions on what is best. There are so many variables that can affect outcome anything is possible.

Don't let statistics cloud your head. I had 4 different doctors early on in my diagnosis tell me I was inoperable before I found one that gave me a chance. I'm 2 years and 4 months out from a grim diagnosis and currently scans are clean with no detectable PSA. Talking to the other four doctors now they told me they never thought it possible and congratulate me on taking the course I did. The difference being the doctor I went with is a world class Urologist and is a specialist. He believed more can be achieved and so did I. If you want to see my story just check out my profile. It is essential to work with a medical team that will treat this disease aggressively. It seems anyone that has fared the best went with doctors that use unconventional therapies to knock it down.

I do believe early chemo while on HT and then a localized therapy is the key to overcoming this. Ask your doctor his opinion on a multimodal approach. There are opinions for days on surgery or radiation and that is something you will have to research and form your own opinion to decide. No matter which direction it is vital they are a specialist administering the treatment. There are men that have achieved incredible results with bone mets. Check out gourd_dancer and his profile.

Never give up hope. Be determined and understand there will be mountains with the valleys to walk through. Don't get caught up in everything you read. Always remember there are exceptions to every rule and you are not everyone else.

Ron

[YostConner]

I’m at 8 years with confirmed mets.

[abmicro]

I am 17 years in the battle and hope to go much longer. I am a Gleason 8 warrior. Had a lot of the newest drugs to keep it under control after my surgery failed 17 years ago and PSA started going up. Recent spot radiation, looking at more. Survival stats no longer apply with all the new treatments out there to extend life.

[Ptclassics]

I have been battling for 22 years

[leo2634 in reply to Ptclassics]

God bless you that's outstanding.

[TommyTV]

I’m 6.5 years so far, dx PSA 571, Gleason 7, seven major bone Mets, skull, shoulder, two ribs, pelvis and both femurs. Current PSA is immeasurable. I’m on Zytiga, Prednisone and Zoladex.

[leo2634]

I'm on Zytiga,Eligard,and Xgeva for bone Mets. Stay strong and do the research there is a lot going on to combat our enemy.

[Cmdrdata]

I am 12 years, and almost 72 y.o. QoL is great. Inconveniences have mostly been to treatment and old age. Have had SBRT, chemo, ADT and latest is Zytiga with PSA around 0.3.

[larry_dammit]

I’m 23 months out of a stage 4 diagnosis,Ct scan and nuclear scan tomorrow, hoping for the best, Mets in ribs,spin and lymph nodes

[larry_dammit in reply to larry_dammit]

Well saw the doctor this morning, came thru the door smiling and thumbs up. No new cancer, bones are still healing 😀😀😀 wife and are going to uncork a bottle of wine tonight and celebrate,maybe we can sleep tonight. Like good news

[Larryfanman in reply to larry_dammit]

Larry-dammit

What was your PSA at diagnosis – and may I ask what it is now ?

[larry_dammit in reply to Larryfanman]

Was 11 in April of 16. At diagnosis in August of 16 it was 33.

[chascri]

I am 19 years since diagnosis in 1999 at age 55. Quality of life has gone down considerably the last two years as a result of spinal fractures caused by falls in January of last year and again in March of this year. Currently on Xtandi since August 2017. My profile has a summary of treatments since diagnosis. Longest I can recall hearing of survival after initial diagnosis is 22 years. Good luck to you.

[ann1919]

My Dad was diagnosed with metastic prostate cancer in November 1996. He's 89 years young presently, 21 years 7 months so far.

[Jim_S_Boston]

Hi Larry,

I was diagnosed in 2005 (I was 52 at the time) after a sudden rise in PSA (from 2.4 to 22.5 between annual physicals) and a biopsy that statused me as 4+5=9, which is pretty agressive. One of my early doctors (a radiation oncologist, not my regular oncologist) indicated I had been “dealt a bad hand” and suggested I should expect to live about 2 more years. My regular oncologist suggested I throw out the concept of predicting mortality because these are just statistical constructs (bell curves) and that many, many men exceed the ‘average’ when it comes to lifespan after diagnosis. I went on triple hormone bypass (lupron/finasteride/casodex) for most of the next 10 years and the disease did not progress. I even had some nice ‘holidays’ from hormone therapy without negative effect.

It has been 13 years since my initial diagnosis. I developed my first bone mets in early 2014 and promptly had chemo (taxotere). Last year I had the radium-223 injections (Xofigo). My existing identified bone mets have remained dormant (present by not growing) since 2014.

The take-away is to remember that all mortality statistics are averages and they have long ‘tails’ of folks who survive much longer. I wake up every day thinking I am a bird flying under the tail of the bell curve to longer life. My oncologist says there are still “arrows in his quiver” that can be tried as we go forward.

Will PCa eventually take me? Perhaps. But I’ve had 13 good years of active life after my initial diagnosis. Any pain I have had was usually the effect of treatment, not disease, which is part of the bargain, unfortunately. Some compromises in lifestyle have to be made, of course, but, after all, I was ‘dealt a bad hand’. At least I’m still at the table and in the game.

Keep positive and outwardly directed. Don’t focus on your disease but on living every day in the world. Don’t develop expectations—good or bad—just ‘go with the flow’ and fly toward the open tail of your bell curve.

Best wishes,

Jim in Boston

[Appraiser]

14 years and still ticking.......Gleason 9..... surgery in 2004. Currently taking DES and Metformin. The kicker is my testosterone never got below 200. My oncologist who used to argue with me to take standard therapies after surgery which I wanted no part of because of QOL now agrees I made the right “out of the box decision”. The point is you just never know. Here I am with an aggressive gleason 9 cancer who took a shot with a simple cheap protocol along with some faith and I’m still here. My oncologist now calls me “his most interesting patient.

[mcp1941]

I am in my 21st year. Although no mets were detected when I was Dx, 6 urologists all said surgery was not an option because my PSA was 95. Treated with 9 months hormone therapy, ERBT and Seeds. That was good for 14 years then PSA started rising, went back on hormone therapy for a year. I now have been on Eligard for a year and going to add Erleada this week. Looking for a lot more years to see my granddaughter grow up.

[RogerThat]

I'm on year 23 since diagnosis at age 42. It's important to get into otherwise good health asap to Max out your immune system. I cut out Omega 6 fats (red meat, dairy and replaced all vegetable oils) with olive oil, and lost 90 lbs over a couple of years. Now all my numbers are optimal except PSA. Read Snuffy Myers' books. He's why I'm still here.

[Larryfanman in reply to RogerThat]

Roger

Thank you for responding

That was some very good news — 23 years 👍

At Your time of diagnosis had the cancer already metastasized ?

Mine has — two or three spots to the bones and limp notes

How has your PSA levels been ?

[RogerThat]

Hey Larry: No, mine was contained from 1996 until around 2006-2008. Prostate biopsies in 2006 were no longer positive. After 9 doctors I met Dr. Myers who did first bone scan in 2008 showing dozens of bone mets. No bone pain til this year.

[snoraste]

I have to say that the responses here are all very inspiring.

I agree with all. Do not look into the stats. They are outdated and backward looking, and everyone is different.

Given the number of mets, I recommend you take a hard look at “multimodal” therapy approach. Search this forum. There’s plenty of materials.

[BigRich]

I read in the medical literature, of a gentleman who made 39 years and was still alive on medication. I don't remember the title of the article. We have people on this site who have made 25 years and are on ADT and still alive today. Remember you are a statistic of one.

Rich

[TinCanDel]

Hi Larry

I was diagnosed by the VA 8/2009. at age 71. The psa was 6.20, Gleason 7(4-3). Had 1 Zoldex 10.8mg injection followed by 41 IGRT treatments, psa reduced to 0.03. Went the "watchful waiting" until 4/2015 psa went to 22.9. 5/2015 had Cryosurgery at Duke UnvCancCntr. Post Cryo the psa was 37.7 now in spine and lymph nodes. Treated with 6 mos injections Lupron/Elgar reducing psa to undetectable. Continued with the L/E treatment 7/2017-psa remained undetectable. Reaching age 80 the VA gave me the option of going off all treatment. They suggested a once a year psa reading until it reached 10.0 with my option to resume L/E on & off every 6 months. The VA accepted my plan: psa every 90 days (consult every 6 mos) my option to resume best current treatment available. 1/2018 psa 0.1, 4/2018 psa 0.3, next psa 7/2018 I'll be able to able to chart the rate of psa change. Through this entire journey I've been fortunate to lead a very active life style. Feel even greater without the L/E side affects. Work out at the gym 6 days per week with an hour on tread mill each visit, travel and hike the near by mountain trails. I also have been diagnosed with Parkinson's, spinal stenosis & osteoporosis. As for how long I will last? As long as the "Good Lord Above" keeps granting me one more day- I afford to waste my today's, being concerned how many tomorrows I might or might not have. Know that everyone is different with different results coming from like treatments. Sharing our experiences is healthy - expecting the same out come can be non-productive. Wishing you the best of everything on your journey

[Wflaggs]

I’m at 17 years after original diagnosis. Have had it metastasize into thoracic lymph node twice. Obviously better than bone or another organ. Tend to stay long time on treatments.

[Rexwayne]

Well everyone is different but you can manage your cancer with your doctor. I'm in 14 years from first diagnoses. Now I'm state 4 castrate resistant. Pushing six years. I have small tumors in two lympth nodes. Had a tumor return where my prostate was. A tumor the size of a golf ball on my right thigh. A small one on on my right , one on my skull above my eye and others. I have completed several radiation treatments, hormone, provenge and taxotere chemo. Right now my PSA is 1.2 and slowly climbing. I doing hormone treartments and traveling while I can. By the end of summer I will have a new treatment. So you just don't know how long we might have. If you can enjoy life when you can, fight when you must. New treatments are coming soon. Who knows so don't worry about stuff if you can avoid it. Just living is tough enough.

[Larryfanman in reply to Rexwayne]

When I was diagnosed I had metastatic — in my bones 3spots -and in my lymph nodes

I was wondering – – how long someone has lived with that diagnosis ?

[Magnus1964]

I was stage 4 out of the gate, that was 25 years ago. I have had (I think) every treatment accept chemo. Currently on Xtandi plus a mystery trial drug. I have been on the study for 2 years.

[Larryfanman in reply to Magnus1964]

Wow that’s great

Did you have any bone metastasize at first diagnosis ??

How long did Lupron work for you ?

[Magnus1964 in reply to Larryfanman]

No bone involvement, the lymph nodes on both sides of the prostate had cancer in them. I had the orchiectomy so Lupron was not an option for me.

[Darcym1 in reply to Magnus1964]

Good to hear that you have made it so far! I was also diagnosed with Stage 4 (metastasis) out of the gate, with PSA over 100 and pretty bad pelvic, hip, and lower back pain. That was in late 2014, I was 57 then. They put me on Eligard (Lupron) immediately, as well as about 20 weeks of chemo (docetaxel). Still on Eligard, and PSA remains undetectable. I still have pain from lesions that caused damage in my hips, but life is pretty good, considering the alternatives. I also have a lot a lot of side effects from the Eligard (especially fatigue), but you learn to live with it, becomes the new normal. I was able to take a holiday for a few months from the Eligard (intermittent treatment), though PSA started rising again after a few months so I am back on treatment. I’m hoping for a lot of years yet.

[Magnus1964 in reply to Darcym1]

There is a lot more out there for prostate cancer now than there was when I was first diagnosed. More options and a better chance for longer life.

[poofers]

I have been on first line HT Firmagon and Casodex for almost 4 years. Got to undetectable PSA around 5 months after the start of treatment and have been the same ever since. My dr tells me that he has a guy who was on first line treatment for over 10 years and is going on 20 years now and is still doing well. No one knows how long one will live with stage 4 PC or not. Take every day as a gift and enjoy every minute of life

[Magnus1964 in reply to poofers]

That's fantastic, I wish all of these options were available when I was diagnosed.

[Apollo123]

This is an amazing post! Brilliant to hear so many men who smash statistics! 👍

[Doofusthefirst]

For me, it has been 19 years. For a newly diagnosed person with all that the last 19 years has brought to the medical community; well let me say that your retirement fund should plan to take you to at least 90.

Just my opinion, your mileage may vary.

Mike

[Larryfanman in reply to Doofusthefirst]

That’s really good that’s even a possibility

Remember I was diagnosed with metastatic prostate cancer from the get go 3 bone mats and some lymph nodes

Does that change your opinion

[Doofusthefirst in reply to Larryfanman]

I was diagnosed initially in 1999 with a PSA of 41 but no mets. About five years ago a spot on my spine showed up on a bone scan. My last scan was in November 2017 showing cancer all across my pelvis, in about three vertebra, two ribs, both legs and both upper arm bones.

Last December I did have some radiation to ease pain from a nerve being impinged by a tumor. Fifteen rounds and the pain is gone.

If I didn't know I had cancer I would assume that my lack of excess energy was because I am 70 years old.

So far, so good.

Mike

[roseanduwe]

That result is inspiring. My husband has recent psa over 900 and mets found in bone and lymph nodes. Starting chemo in 2 weeks and then heading for clinical trial of lu-177 when he is well enough to travel. LUPRON in combo with XTANDI worked in keeping psa down for a while but everything blew off the charts since December. So great to hear some positive results in treatment.

[RogerThat]

Re: Bbruce comment, at my first appointment with Snuffy Myers 10+ years ago, I used the term "cancer cell" and he interrupted to say you can't discuss cancer without specifying the kind because each kind is different. he said that prostate cancer cells do NOT uptake sugar. They thrive on vegetable oils such as corn oil, sunflower, soy, etc. Since that day I have eliminated all oils but fruit oils like high Omega-3 Olive oil, whether for salads or cooking. Olive has a lower smoke temperature but I can live with that (literally). Remember also that since we feed most of our farm animals ground corn, eliminate all red/dark meat and dairy unless it's grass fed. This has been difficult but getting easier to find. I have never cut back on sugar even though I lost 90 lbs following his cookbook (primarily because I read labels and put back on the shelf everything containing even a trace of high Omega-6 oils). Sugar of course still has its own health risks, but PCA isn't one of them or I would not likely be here 22 years later.

[cwc1]

That's a good question

I was diagnosed 1 year ago at 59 with Gleason 9 PSA 80

bone scan found some mets.

feeling great now been on Firmagon monthly PSA currently .2

My urologist recommend going to 6 month Lupron.

Can anyone advise on changing from firmagon to lupron

[leo2634 in reply to cwc1]

I got the six month injections in March only side effects are hot flashes which are tolerable and ED which is managed. I'm also on Zytiga,Prednisone and Xgeva for bone Mets. PSA is undetectable since first treatments. I feel better than I have in years. Best of luck Leo.

[cwc1 in reply to leo2634]

thanks for the info leo2634

the only treatment I've had so far has been Firmagon daily

Doc had recommend Xgeva but BCBS insurance didn't approve

so I just had 1000/800 calcium/vitamin D daily.

Good luck!

[leo2634 in reply to cwc1]

My insurance didn't appove it at first but Doctor overrides their decision at least in my case. I also take Vit D and Calcium on my Doctors advice.

[Ptclassics]

I have had 22 years since my first seeds and have had every treatment there is except chemo that is next for me

[Jvaughan0]

I believe it is possible to die the exact second a man is told he has prostate cancer. I'm pretty sure I did. It took me a couple of years to come back from that lifeless place. I had to stop asking myself how long will I live and replace that overwhelmingly loud mental flood of thoughts with a quieter reflection on how will I live. It helped.

[Larryfanman in reply to Jvaughan0]

Jvaughano

I know what you mean – – in a strange way – it is almost like dying – when the doctor tells you stage 4 and no cure — I got diagnosed about four months ago - and still can’t think of anything else — so sad

Thank you for responding

[leo2634 in reply to Larryfanman]

I'm about the same time Larry Feb. 27,th of this year. It's amazing I have trouble with Birthdays,Anniversary dates but will never forget that day. I chose to take a screw you approach to the cancer after my initial cry 😢 which by the way I did by myself my family was devastated enough without seeing me a mess. The very next day I said NO this will not do me in at least until I finished living my life,watching my grandchildren grow up, so I made a bucket list , changed my attitude and started fulfilling my list. Number one was a ,Classic BMW 540i that's I've wanted all my life it now sits in my garage. Please take the beast on with all you got and never give up never surrender.Leo

[dorke in reply to Jvaughan0]

Wow ! thank you for this post !

I did die the day I was diagnosed.

I haven't yet found the strength to reflect on how to live and instead i'm busy trying to figure out answers and outcomes nobody has.

The psychological burden of this disease is no doubt devastating

[Larryfanman in reply to dorke]

dorks

I know a lot of men say — that we have to be strong to fight this - AND I AGREE

But so for – I’ve not figured how to be strong

Maybe with time It will get easier

But for now I just cannot help myself — I can’t hold back the tears

— I guess it just takes time To figure all of this out

Good luck buddy

Larry

[leo2634 in reply to Larryfanman]

Yes it does Larry but think back on your life and maybe what challenges you have already overcome.

[Larryfanman in reply to dorke]

dorks

This is Larry

I think you and I feel a lot the same

It is so hard to imagine that we got this CANCER ( WHY US -WHAT DID WE DO TO DESERVE THIS ?

When the doctor told me stage ( 4 NO CURE )

I about shit

The doctor actually gave me no hope at all

I just felt so sad - and didn’t understand – – WHY ME — at that time I had no hope

In my opinion we need hope— To help fight this

A couple things that is making it a little easier on me is —I started learning as much as I could about ( prostate Cancer )

1 I found out there are guys with stage 4 that have lived a long time

2 there are more options now then ever before- even more than just five or six years ago

3 And with more options – and by helping ourselves we don’t just have to sit back and die

4 I started exercising

5 I got involved with a support group where you could talk to the man face to face

ALL OF A SUDDEN YOU WILL SEE A RAY OF HOPE — and this is what we need !!

GOOD LUCK BUDDY ( we will make it through this )

[dorke in reply to Larryfanman]

Thank you Larry for your words.

Very good points !

The best days I have are those that I'm so busy at work that I forget that I have cancer.

I dont ask myself why me since I believe it was my fate.

At the same time I'm trying to take advantage as much as I can from this situation.

Everyone else who was not diagnosed with some serious illness , lives with the false feeling that life will go on forever ,thus there is good possibility he will not be able to appreciate what life has to offer right now.

On the other hand,us that we know that life has an expiration date,are in a good position to appreciate each moment we are around.

Good luck to you too and lots of good health

[Larryfanman in reply to dorke]

Thank you

[j-o-h-n]

Well, the only comment I can make is why most men die before their wives do. It's because they want to.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/25/2019 7:13 PM DST (Greek Independence day)