How long in the fight?: I just had a... - Advanced Prostate...

Advanced Prostate Cancer
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How long in the fight?

Spaceman210
Spaceman210
86 Replies

I just had a thought it would be encouraging for many of us to know in one convenient post how long some of you other warriors here have been at it!

86 Replies
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billfenley2

Hey Spaceman, Have you heard of Todd Seals? He's been writing a blog called Living With Prostate Cancer for something like 13 years. He's doing well, currently on an ADT holiday, I think. I've read about others who are doing "quite well" 20 years on with advanced PC.

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Longterm101

My neighbor is going on 18 years

John Hopkins, Anderson etc Gave him 2-3 years to live

He was stage 4 with bone Mets

He Looks amazing !!!

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Spaceman210

Wow. Secrets?

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Spaceman210

Thanks will check!

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CreativeOne

"I am only an egg..."

4+ years for me since my RRP and the discovery the cancer had spread.

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Whimpy-p

Hey don’t egg me on ! Four years me too this month whhoohooo.. .......stay CeativeOne...

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NPfisherman

Switched from Mad Jack to Mark Twain...keep going me capo ... the wife says you gotta stick around and I say the same...congratulations... you got this, amigo....

Don Pescado

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whatsinaname

Any reason you sign off with "Don Pescado" ??? :-)

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NPfisherman

It is my nom de guerre.....Lulu gave it to me .... we are the APC mafia... they call me the Lupron Don... mess with me and desire goes out the window... or is it Desiree goes out the back window... some silliness to instigate a smile....

Fish

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YostConner

Twelve years.

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Hex40

April will be one for me but who’s counting.

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whatsinaname
whatsinaname
in reply to Hex40

Just completed ONE year on the 26th of February, 2019. Have already been through Casodex, Eligard, Radiation therapy (38 fractions), Chemo therapy (docetaxel ) 6 cycles and am now on Abiraterone. If and when Abiraterone fails, I am contemplating Lu-177 +Ac-225.

Life is good with hardly any pain worth talking about. A little over a year back I was a normal human being with hopes of living till at least 80/85. I am 62.5 now.

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Spaceman210

Good going!

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whatsinaname

Thank you, Spaceman210.

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NPfisherman

Keep fighting.... my MO has a guy who's been on abiraterone for 6 years...and still going...good luck...

Fish

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whatsinaname

Thanks, Fish. 6 years would be fantastic :-) One can only hope :-)

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NPfisherman

Never lose hope...I wake up....the sun is shining, and I'm happy....another day....one day at a time... keep your head up.... doing good, my man...

Fish or Don Pescado depending on my mood...

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8knots
8knots
in reply to Hex40

Me too.....coming up on one year

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monte1111
monte1111
in reply to Hex40

I think we are all counting. 2 yrs. since diagnosis plus 6 months of symptoms. 6 more months to my expiration date and I look as good or better than the doctor does. Except for the Homer Simpson stomach. Thank you lupron. Hang in there. Enjoy.

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Longterm101

He has had 190 radiation treatments and does intermentent ADT

Once he finds a spot he radiates it !!

He’s starting his second line now

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Whimpy-p

190? Wow

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mjbach

Going on 19 for my husband. We met someone at Fort Myers pCa conference with 21 years.

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joeguy

Little over 2 yrs since surgery. Castrate resistant after 20 months on firmagon and eligard..... now PSA almost undetectable after 4 months on xtandi

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ctarleton

Five years and 3 months after original diagnosis with a PSA of 5,006. I am humbled to have personally known several men who were diagnosed later than I and who have died earlier.

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whatsinaname

Yup, that's the way it is :-(

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jmurgia

16 years

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Hidden
Hidden

Three years, RP April 28,2016, radiation, chemo, and Lupron. Turning just 60 in May. 🎂💪❤️

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MichaelDD

3 years this month. Last October found out that I was metastatic to the lungs. Next month I'm 65. I have a goal to at least make it so my youngest grandson remembers his Grandpa. He's 3. After that I'll set another.

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Stanny1

Four and half years every day is a bonus owe my oncologist so much

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GrizzlyMama

My husband for 16 months. He took Casodex, had radiation and chemo, and is currently on Lupron. In January 2019, he switched Lupron from every 3 months to every month, which has helped decrease the side effects. He is being treated at Stanford.

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MichaelDD

East bay area guy here... at UCSF for treatments and Cancer center Pleasant Hill . Best to you both on your journey.

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Cmdrdata

13 years and still active.

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Ran2599dy

15 years and on a drug vacation (no Casodex). Still taking Avodart, a statin and Metformin.

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BrianF505

16 plus years. Diagnosed @ 44. Soon to be 61. Last 5 years on Xtandi. 😄 best of luck and hang in there.

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monte1111
monte1111
in reply to BrianF505

5 years on Xtandi. Sounds like a record to me.

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BrianF505
BrianF505
in reply to monte1111

Hoping to keep it going till something better comes along!

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GoEZ

9+ years. upright and on the go. today is good.

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NPfisherman
NPfisherman
in reply to GoEZ

Solid attitude....may you be upright for a long time...

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woodpecker43

Six years here.

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NPfisherman

and many more to go so keep fighting....that is great....

Fish

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rogerwegner

I have been on this journey for 12 years . My PSA was 150 at diagnosis . At last check in December it was .4. I can thank apalutamide for the recent drop.from 4.5 in three months.

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NPfisherman

May you journey on for many more years...

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rogerwegner

Thank you for the encouragement. My PSA is continuing to drop. The test last week showed a level of .38 .A. drop that shows apalutamide is still working. I have six more months paid for to see how low it can go.

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Ptclassics

22 Yeats and still going

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NPfisherman

That's fabulous, my man...

Fish

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Beermaker

That is fantastic! I hope I last that long :) Keep on fighting!!!

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Sherpa111

New kid on the block here! 6 months in with Zytiga/Prednisone/Xgeva/Eligard.

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tango65

16 1/2 years.

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NPfisherman
NPfisherman
in reply to tango65

Congratulations...that is magnificent...

Fish

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Magnus1964

I am probably the exception here, 26 years. Diagnosed 1992, PSA 39, Gleason 9.

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NPfisherman

Congratulations... that is encouraging for a "newbie" like me...

Fish

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Magnus1964

I guess I should mention I have been through surgery, radiation, ADT, PROVENGE, 2 drug trials, and a dozen complimentary and alternative supplements.

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NPfisherman

Thank you for your participation in clinical trials...this is how we will beat the beast.... the knowledge from the trials and the sacrifices of participants to involve themselves... I did one trial myself... You are a warrior elite, my man... 26 years...Gleason 9....That is crazy good... keep it going...

Fish

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etenntider

Just past 18 months since RARP, 20 months since biopsy results, 22 since elevated PSA (9.2) started me out. Lupron since post-surgery pathology visit; Zytiga since 2/18 after switching care from urologist/surgeon to MO and Axumin scan showed ribs and spine metastases. Undetectable” PSA for almost a year now.

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JamesAtlanta

4 years in May. PSA was 227 at diagnosis and Gleason 8. Chemo, Radiation, Prostatectomy, ADT + Zytiga now. PSA undetectable for the last 15-months and expecting an ADT holiday by year’s end. Actually started running some this week and have been working out every day for a couple of months! Most energy I’ve had since diagnosis! 😊

We can beat this thing! Never give in!

James

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NPfisherman

Excellent attitude... Fight on....

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noirhole

5 years this July. Holding on zytiga after chemo, 2 sessions of radiation to bladder and a wild lymph node. Neuropathy in my feet limits mobility but I am still kicking.

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ewhite999

Great idea! Very encouraging responses. Three years for me. Feel great.

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bitittle

5+ years. PSA 12, G9 at diagnosis 49 yrs old. RP - 2 1/2 yrs later salvage radiation to prostate bed at PSA 0.18. PSA for now 0.028. No ADT, chemo or other treatments.

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Olman

DX 2001. Failed radiation and on Lupron about 16 years. I’m 79 and still going strong!

Never give up!

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milto27xabc

Since 2005--on Zitiga for 18 months--87 in July

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GeorgeGlass

what has your average psa doubling time been when you would take adt intermittent breaks?

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PAQFAS

2 years. On abiraterone. Great to hear longevity of our partners. Climb every mountain...

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Tjc1

8 years here. On second line ADT.

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monkey1991

17 years with stage 4. Mostly vegetarian and work out 8 times a week.

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chascri

Since 1999. Summary of treatments in profile.

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Rogersw

Almost 5 years psa 180 at diagnosis 6 now. Prostrap(lupron) only life quite normal downside weight gain/fatigue but i am nearly 72. Went vegetarian and non dairy on diagnosis

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Spaceman210
Spaceman210
in reply to Rogersw

I went vegan and now have osteopenia. Do you take calcium or something?

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20PeteG16

9 years and counting forward with exercise, faith and good food practices.

PeteG

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Moespy

8 Years in. Exercise, supplements and diet modification. Current PSA is undetectable. Started ADT a month ago, pelvic radiation starts next month for 2nd recurrence since RP in 2011. Being treated at Johns Hopkins.

Best wishes to all,

Jim

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JimVanHorn

11 years and no more signs of cancer! I have had 72 radiations and 6 1/2 years of Eligard. I am on active surveillance now, it has been 1 year since I have had any therapy. My PSA is 0.006 but my T is 16! In June I will be checked again and I'll let you know.

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dockam

Stage IV, PSA at 840, GL 7(4+3) mets to L ureter lymph nodes. Did 15 Taxotere chemos in 2015 and 30 months ADT - got to a nadir of 0.1 in 2017 for 3 months. Coming up on my 5 year, old data stated back then I had a 28% chance of hitting the 5 year point. Back on ADT as PSA got to 10.8, but got it down to 4.4 with T at 18. Completed 29 marathons post Dx and have the Orange County marathon this May and in 2015, I did it three days after a chemo session. It'll be my 150th marathon overall. I've had a sign on my back thru them all, exhorted men to get screened and now honoring those taken by damn PCa . A blog post: blog.athlinks.com/2017/05/1...

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Beermaker
Beermaker
in reply to dockam

29 marathons since DX? FANTASTIC! Keep it up, keep kicking the bastard.

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dockam
dockam
in reply to Beermaker

Mahalo - my new mission to share my story and have maybe someone get screened cuz they read my sign and maybe a life saved.

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NPfisherman
NPfisherman
in reply to dockam

That's why I follow you, my man... part of my Magnificent 7... a brave, tough lot that just won't quit... simply Magnificent....

Fish

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dockam
dockam
in reply to NPfisherman

Thanks brother, my marathon times are at least two hours slower than prior, but I do it for those who can't. There is an app that will collate them for you: athlinks.com/athletes/73539...

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NPfisherman
NPfisherman
in reply to dockam

Still doing it, my man... Marathon?? Just getting to 5K here and not fast... but....still doing it... Keep at it, Randy... you are doing great... your story is inspirational for anyone here....

Fish

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Dalph87

2 years, we are still newbies but doing very well so far with almost nadir PSA and still plenty options left in our pocket. PSA was 95 at diagnosis and Gleason 7 (4+3).

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PapaDugi

19 years for me.

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RCOG2000

Since summer of 2000. Yes. 2000

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cbgjr

Diagnosed with PCa in 2010...

CG

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GAdrummer

My husband has been enduring ADT for 9.5 years and chemo for the past two years.

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j-o-h-n

I can't remember....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/19/2019 6:32 PM EDT

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JavaMan

I’m still counting months - only 8 of them. Age 53, enjoying life in Cincinnati. Looking forward to high double digits in years.

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ggbk

Diagnosed January 2014. PSA 10.5 Gleason 9. RP followed by radiation in 2014, PSA down to .2. When it slowly climbed to 2.7 in Jan 2018 started Zytiga/lupron/prednisone. It has been <.1 since. Have mets in the lungs that are shrinking. Thinking about Zytiga ADT vacation.

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Beermaker

Now 7.5 years, still on ADT (one brief and bad vacation) with Xtandi added about 18 months ago (2 pills a day now.) Had my bloodwork done last week, it is still <0.1. Seeing my MO tomorrow. Hoping to go to mars in a few years!

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