How long have I got: Does anyone know... - Advanced Prostate...

Advanced Prostate Cancer

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How long have I got

ewhite999
ewhite999

Does anyone know how long you can live with stage 4 prostate cancer? I was diagnosed two years ago and have been down the chemo, immunotherapy, Xgeva, Lupron, Zytiga road. I feel great other than tiredness but apparently my days are numbered. It’s hard to think in terms of the end when you don’t have symptoms but I guess the end is fairly close. I’d like to be able to put a number to it. Is it three years, five or ten? I’ll take ten if I have a choice.

39 Replies

Okay I will give you ten. With all the treatments available and coming that may be likely if you are otherwise healthy.

Morning ewhite999,

I can understand the feeling of wanting to know, it consumed me for the first 7 weeks...but when I decided to let that go and live each day like it was my last. My life has been wonderful. Yes, I have all the side effects of the drugs. but my relationship with my wife and kids have been so fulfilling, loving and caring. I am enjoying the train ride to the station, not worrying about when I will get to the station... :)

The short answer is that noone knows for sure. There are some survival stats that are outdated and too broad to tell you anything about your specific case. But given what little you have shared about your symptoms, you have a very long road ahead of you. As other mentioned, obsessing over this question is counter productive. Your goal is to stay healthy today. Nearly 40,000 people die in car crashes every year in the US, with another 2.5million (approx) injured or disabled. Would you obsess over that and stop driving? you don't even think about that when you drive. Do the same! Get proper treatment and take care of yourself, physically and mentally.

How long have I got? In my opinion, none of us "have" any future, it has not been given to us. We are given exactly one moment to live at a time and no more than that. I have found that learning to live in that moment has brought me a lot of happiness. Every time I start focusing on my imaginary future, I get depressed.

There are people tha have done 17 and 20 years. The only bad thing about that is we have to fight the entire time.

BigRich
BigRich in reply to Tjc1

I have 20 years, there is a lot of time devoted to stay on top of it. But I am blessed, have good doctors and read about the disease. The side effects are from the treatments.

Fight on.

Rich

ewhite999
ewhite999 in reply to BigRich

How old are you if just don’t mind me asking? Also, do you eat any sugar or egg yolks? I’ve heard those are the two worst things to eat if you have stage 4.

Tjc1
Tjc1 in reply to ewhite999

I'll be 60 next month, 52 when diagnosed. I'll eat sugar, not alot though. I pretty much eat what i want.

BigRich
BigRich in reply to ewhite999

76, I drastically limit my sugar. no egg yolks; I eat egg whites and no chicken skin.

Red meat once a week.

Rich

Worry about it when you get there, for now while you feel good enjoy everyday and live life to the fullest.

Dan (dx2006 stage 4 gleason10, bpsa148 age 49,currently hanging on ,psa 225, no real pain.

How many years do you want? You more than likely have at least five, could have ten. OR, in three or four years they might come up with something that will keep you going for fifteen years. See my point? Things change so quickly NO ONE knows how long you have. Now go out and buy a Corvette and speed down the road giving the finger to the neighbors you have never really cared for.

j-o-h-n
j-o-h-n in reply to Bill48162

to Bill48162:

I bet he'll be driving with the finger up in the air for miles upon miles...Good Laugh!

Good Luck and Good Health.

j-o-h-n Friday 09/14/2018 10:59 PM EDT

I have had pc for 8 years now. the only thing you can be sure of is that you can't be sure of anything. Ive had a few cancer doctors and they have all said they don't know how many years I had left. they had the same story. they have seen guys with low psa, low gleason, and no mets die after 6 months and guys with cancer every where and live for 20 years. the science is changing all the time. i have been wrong every time i have tried to guess my future. You have to shorten your vision to chunks you can handle. I'm down to " today is good". PC will drive you crazy if you let it. Stay sane.

Frigataflyer
Frigataflyer in reply to GoEZ

Well said.

It depends what you understand to be stage 4, but usually it means you have it in internal organs and bones, and Psa is rising, and some will last 10 years.

I was diagnosed 2009, Gleason 9, 9 positive biop samples, Psa 6, and it was inoperable, and it probably spawned thousands of micro tumours which began to show in PsMa gallium68 scans in 2016.

Psa has been bouncing up and down after ADT, Cosadex, Zytiga, more salvation RT between lowest of 0.08 to highesat at 8.8 since 2010, and 8 weeks ago Psa was 12, but now 30 after 3 x docetaxel chemo infusions, and organs are OK but bones have countless mets.

I am after Lu177 treatment because the chemo seems to be failure so far. How long has a man got? My doc says I have 8 years, I thought maybe 4 years, and Aunty Destinee sneered at me and said 2 years.

I keep busy, and fit, and ride a bicycle a lot, and no bone pain yet.

Knowing you are temporary worries the hell out of some, but when the time comes I'll be glad to cease to exist. Pain will determine when I beg to die. But otherwise, life ain't too bad.

Patrick Turner.

How long do I have question drives me crazy. Like you, I wonder how long. Last Christmas it didn't look good. Now the MO slaps me on the shoulder, glances at my results and says looking good, see ya. I'm on year one now. 67 yrs old. Look at everything differently now. We have to learn to let go. Do what makes you happy and enjoy each day

heeeeeeeeeeeeee i've had stage 4 for 10 yrs. i've had radiation, lupron/eliguard zytiga and newest treatment that came out in 2006. my psa after 10 years is 28. the new treatment is called PROVENGE. been told if ones psa is low below 31 u got more then 4 years, i'm just 72 nd my oncologist there is no definite time frame. remember these oncologists are maintenance docs that's all they want u to follow the rule book and heaven if u should go off of it.

All of us stage 4s think about that question. It’s normal. But who knows? Better to live each day and hope for the best.

My first surgeon at Johns Hopkins told me I had 5 to 10 years. Stage 4. That was 26 years ago. Don't let anyone tell you how long you have.

Bedrich
Bedrich in reply to Magnus1964

wow!

Ahk1
Ahk1 in reply to Magnus1964

Hi. What was your diagnosis 26 years ago? Like details, psa?, etc. thanks

Magnus1964
Magnus1964 in reply to Ahk1

26 years ago I had a PSA of 39, Gleason 9. Biopsy of the prostate show multiple nodes. The cancer had spread beyond the prostate to the local lymph nodes. I had the orchiectomy, prostate not removed. I guess the prognosis at that time was accurate. But the medical science marches on with new drugs and new treatments.

Well Brother we are all on borrowed time with or without APC so live life like a Rock Star . As for me I've always wanted a classic BMW so now it sits in my garage. I am in the process of planning a cruise so that will be two things off my bucket list.

Remember get busy living or get busy dieing.. Never give up never surrender.

The truth is that everyone dies. The men here have a slightly better idea of why we will die but none of us knows when. In that regard we are no different than everyone else.

My oncologist gave me 3-7 years last year, so now its 2-6 years. I intend to prove her wrong.

My goal is to die with prostate cancer but not of it. Will I succeed? Only time will tell.

Ahk1
Ahk1 in reply to FCoffey

What is your stats?

FCoffey
FCoffey in reply to Ahk1

98th percentile. 2.3 lb std deviation. Skewness and kurtosis nominal.

Hey ewhite999,

From my point of view you have every right to ask and I think you would be something less than human if you didn’t wonder about how long you have. The indefinite nature can be maddening. I have personally spun in on this myself several times. (Probably will again)

Having said that I am in agreement with all who have advocated for living in this moment. The greatest minds and spiritual leaders throughout history have told us that this is a key to a happy and productive life. This return to center is what pulls me back when emotions decide to take me for a ride.

So to summarize it sucks to be human with how uncertain our time is, and it’s fantastic to be human because we can choose to find beauty from chaos

Go be blessed and a blessing our brother

Bees

When I failed Lupron I was told to do chemo and I could stay alive another 2 to 3 years. That was 16 years ago. Obviously, I am still alive because I am writing this note.

That opinion reflected lack of knowledge 15 years ago, because even 15 years ago we had off label drugs for prostate cancer such as ketoconozale and estrogen. I ended up doing ketoconozale, estrogen, and leukine and got a zero psa for 3 years, and good control for another 3 years after that, so that blew past my 3 years past my survival prediction. Still had not done any chemo.

When PSA started creeping up to about 5, did a comprehensive set of scans which included one new one that was not approved for prostate cancer, only breast cancer to detect lymph nodes, and found a small spot on a pelvic bone. (Lymphs were clean). Radiated that bone and got my PSA back to zero again. By that time Provenge came out. Hit it with Provenge, and PSA went from 0.1 to less than 0.02. A lot of years had past, and XGEVA and XTANDI came out. Used it and got my PSA to behave at less than 0.02 for a long time.

That remission got me by until a year ago, when that same bone got cancer again. Radiated it and got the PSA back down to 3, but other bones were starting to show spots. Did Radium 223 and got control again, but after Radium 223, PSA started running amuck. Finally time for Chemo. Chemo knocked it down from PSA 22 to PSA 3. Lined up a clinical trial for LU177 at UCLA for about 2 months after my last Chemo infusion. While waiting, I will do an XTANDI re-challenge and possibly delay the trial a few months until XTANDI fails again. Perhaps by that time, there will be other LU177 trials closer to where I live in NCAL.

I dont know if the new drugs will ever stop arriving. Every time I think I am on my last line of treatment, and think this is my last few years to live, something new comes out.

I stopped spending my retirement account.

I am over 14 years and still undetectable. Enjoy life and cross that bridge if and when it happens. Worrying causes undo stress.

When I started in 2004, my Oncologist told me that with aggressive treatment that he could buy me 5 additional years. At five years, I asked again, and he said confpgratukatiibs you have another five years. At ten years, when I asked, he chuckled, you got this and will die of something else.

Gourd Dancer

Last December the oncologists at Kaiser were all telling me I'd be dead by this fall. Looks like they're going to be wrong. We've already made travel plans for next summer. The others on this site are right; live for today and enjoy what you have. Don't worry about being human. Your brothers here are with you.

The problem is that there is not just one prostate cancer. There are slow growing and fast growing cancers, they are in different parts of the prostate, metastatic cancer can be anywhere in your body, depending on your age and genetics, and your age with other diseases you already have. No one knows how long you will have PCa. I have had it for 10 years. I have had 72 radiations and Lupron injections for 6 and 1/2 years. Currently I have stopped all therapy and my PSA is 0.00. But we will see what happens next. I have diabetes, heart disease and kidney disease as well, I am 73 years old. So just keep listening to your Doctors, get several opinions, and just keep truckin'.

It sounds like you have gone through some of the most important drugs to keep you alive with good quality of life. Yes there are more options but without knowing the details my gut senses you may not be getting the most out of each one of the treatments. Its better to error on the side of of staying on a drug a little too long than cutting to short. You should never be taken off a treatment for PSA alone. I would be happy to discuss further over phone. You can direct message me and i can give you my cell phone.

to ewhite999;

It's like this you have:

youtube.com/watch?v=e0dJWfQ...

Years.

(Only God knows and he/she ain't telling)

Good Luck and Good Health.

j-o-h-n Friday 09/14/2018 11:15 PM EDT

I'm a stickler for people on here posting (proudly) their ages. Since I couldn't figure out from your profile..or quickly running through your posts....how old you are ~~ I give up.

If you are 98 y.o. now...I'd say you have very slim chance of making it to 100.

If you're 49 or 55 or 61 y.o. (as I am currently) ...you might have a few more years.

Age is NOT just a number...just like I have to explain to people PSA is NOT just a number.

my humble 2 cents on age, death & morbidity.

John

Reply to John ..in my humble opinion, your 2 cents is actually worth about 1 Cent..mainly because you can't really advise people something like "a few more years " ...as I am suppose to be long gone "a few years ago" currently undetectable! DAN AGE 63

Reply to Wings-of-Eagles..No need to be rude to John. I think he was trying to be sarcastic in a humorous way. That's my 2 cents, what's it worth in your form of currency?

greatjohn
greatjohn in reply to Bill48162

Thanks Bill. Today was a good day ....and for that I am Thankful. Hoping for another good day tomorrow. Life is beautiful.

ewhite999
ewhite999 in reply to greatjohn

59

ewhite999
ewhite999 in reply to greatjohn

I’m 59

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