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

Advanced Prostate Cancer

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How long in the fight?

Spaceman210 profile image
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!

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Spaceman210 profile image
Spaceman210
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86 Replies
billfenley2 profile image
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.

Longterm101 profile image
Longterm101 in reply tobillfenley2

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 !!!

Spaceman210 profile image
Spaceman210 in reply toLongterm101

Wow. Secrets?

Spaceman210 profile image
Spaceman210 in reply tobillfenley2

Thanks will check!

CreativeOne profile image
CreativeOne

"I am only an egg..."

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

in reply toCreativeOne

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

NPfisherman profile image
NPfisherman in reply to

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

whatsinaname profile image
whatsinaname in reply toNPfisherman

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

NPfisherman profile image
NPfisherman in reply towhatsinaname

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

YostConner profile image
YostConner

Twelve years.

Hex40 profile image
Hex40

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

whatsinaname profile image
whatsinaname in reply toHex40

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.

Spaceman210 profile image
Spaceman210 in reply towhatsinaname

Good going!

whatsinaname profile image
whatsinaname in reply toSpaceman210

Thank you, Spaceman210.

NPfisherman profile image
NPfisherman in reply towhatsinaname

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

Fish

whatsinaname profile image
whatsinaname in reply toNPfisherman

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

NPfisherman profile image
NPfisherman in reply towhatsinaname

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...

in reply toHex40

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

monte1111 profile image
monte1111 in reply toHex40

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.

Longterm101 profile image
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

in reply toLongterm101

190? Wow

Grumpyswife profile image
Grumpyswife

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

joeguy profile image
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

ctarleton profile image
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.

whatsinaname profile image
whatsinaname in reply toctarleton

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

jmurgia profile image
jmurgia

16 years

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

MichaelDD profile image
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.

Stanny1 profile image
Stanny1

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

GrizzlyMama profile image
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.

MichaelDD profile image
MichaelDD in reply toGrizzlyMama

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

Cmdrdata profile image
Cmdrdata

13 years and still active.

Ran2599dy profile image
Ran2599dy

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

BrianF505 profile image
BrianF505

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

monte1111 profile image
monte1111 in reply toBrianF505

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

BrianF505 profile image
BrianF505 in reply tomonte1111

Hoping to keep it going till something better comes along!

GoEZ profile image
GoEZ

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

NPfisherman profile image
NPfisherman in reply toGoEZ

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

woodpecker43 profile image
woodpecker43

Six years here.

NPfisherman profile image
NPfisherman in reply towoodpecker43

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

Fish

rogerwegner profile image
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.

NPfisherman profile image
NPfisherman in reply torogerwegner

May you journey on for many more years...

rogerwegner profile image
rogerwegner in reply toNPfisherman

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.

Ptclassics profile image
Ptclassics

22 Yeats and still going

NPfisherman profile image
NPfisherman in reply toPtclassics

That's fabulous, my man...

Fish

Beermaker profile image
Beermaker in reply toPtclassics

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

Sherpa111 profile image
Sherpa111

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

tango65 profile image
tango65

16 1/2 years.

NPfisherman profile image
NPfisherman in reply totango65

Congratulations...that is magnificent...

Fish

Magnus1964 profile image
Magnus1964

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

NPfisherman profile image
NPfisherman in reply toMagnus1964

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

Fish

Magnus1964 profile image
Magnus1964 in reply toNPfisherman

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

NPfisherman profile image
NPfisherman in reply toMagnus1964

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

etenntider profile image
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.

JamesAtlanta profile image
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

NPfisherman profile image
NPfisherman in reply toJamesAtlanta

Excellent attitude... Fight on....

noirhole profile image
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.

ewhite999 profile image
ewhite999

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

bitittle profile image
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.

Olman profile image
Olman

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

Never give up!

milto27xabc profile image
milto27xabc

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

GeorgeGlass profile image
GeorgeGlass in reply tomilto27xabc

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

PAQFAS profile image
PAQFAS

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

Tjc1 profile image
Tjc1

8 years here. On second line ADT.

monkey1991 profile image
monkey1991

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

chascri profile image
chascri

Since 1999. Summary of treatments in profile.

Rogersw profile image
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

Spaceman210 profile image
Spaceman210 in reply toRogersw

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

20PeteG16 profile image
20PeteG16

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

PeteG

Moespy profile image
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

JimVanHorn profile image
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.

dockam profile image
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...

Beermaker profile image
Beermaker in reply todockam

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

dockam profile image
dockam in reply toBeermaker

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

NPfisherman profile image
NPfisherman in reply todockam

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

dockam profile image
dockam in reply toNPfisherman

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...

NPfisherman profile image
NPfisherman in reply todockam

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

Dalph87 profile image
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).

PapaDugi profile image
PapaDugi

19 years for me.

RCOG2000 profile image
RCOG2000

Since summer of 2000. Yes. 2000

cbgjr profile image
cbgjr

Diagnosed with PCa in 2010...

CG

GAdrummer profile image
GAdrummer

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

j-o-h-n profile image
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

JavaMan profile image
JavaMan

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

ggbk profile image
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.

Beermaker profile image
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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