Stage 4 metastatic

[rogerandme]

Interested to know how poofer is doing…. Just starting the journey…stage 4 with Mets just finished 20 rounds of radiation to prostate… lupron every three months… xtandi…so far no real complaints… hot flashes and muscle loss are my only two side effects…diagnosis January 2021…MO says I should live a minimum of 5 years… we shall see…have been physically active my entire life… and still am… I try and enjoy every minute of life… keep a positive attitude… use intermittent fasting… and watch my diet…thankfully I have no pain except for urinatation problems….my RO is less optimistic says none of us gets out of this alive… it just might be your time… not very encouraging words…. But my fate is in God’s hands and I have personally seen medical miracles where doctors sat around scratching their heads… so I will take my meds and trust that the good Lord will leaving scratching their heads once again….😜

[Shooter1]

Looks like we both started with stage 4 Gleason 9/10 with mets.. Lupron, chemo instead of radiation, xtandi which tried to kill me, but I am still on it 1/2 dose. Working on year 5 of my 10 yr plan. Orchiectomy to get off lupron for life. Feeling good now and enjoying life. Life Is Good. Drs can guide and God can heal.

[rogerandme in reply to Shooter1]

Great to hear you are doing better…once the shock wears off it’s time to do battle…positive mind and faith in a higher helps a lot…

[rogerandme in reply to rogerandme]

Higher power

[Vangogh1961 in reply to Shooter1]

I'm meeting with MO tomorrow. I plan on discussing orchiectomy. If I'm ADT for life I see no downside. 2-3 days after shot feel like crap, and maybe switching from Firmagon to Lupron is every 3 mos instead of monthly I still see no upside to the injections over saying goodbye to the boys. How did yours go?

[Shooter1 in reply to Vangogh1961]

Easy, not problems except Drs didn't want to do second surgery the next day. Had my left thumb rebuilt on my 10 yr plan..... Life is Good, especially with two working thumbs...

[Healthaki in reply to Shooter1]

Hi Shooter 1. I have just started lupron3. Just finished the bicalutamide. I decided to start treatment when PSA went up to 1000. I have localised Mets. I am77 yes young. Haha. Tried for 5 yes doing my own thing but enough is enough. I got a bit fed up doing all the healthy eating etc and then PSA took of this year. It started doubling soon after my biopsy in January. Before that it was always below 50.

[jcoil]

Seems like all RO’s aren’t very positive minded and if they can’t be they should just shut their pie holes. Their negativity doesn’t help anyone. God’s got you and that’s all you need to carry you through.

[Bebby1]

What a great attitude.I wish you all the best

Your mindset will keep you here a long time 🙏🏽

[Survivor1965]

Started 2012 Gleason 9 mets to bone and lymph’s. 21 chemos, Zytiga, now Lupron Xtandi for 56 months PSA undetected lesions dormant. They keep telling me I’m toast (Mayo) soon and here I am managing to carve out a decent quality of life. And yup they are scratching their heads. Join me in the club of making dr’s scratch their heads. Keep your chin up, attitude is everything. Johnny

[monte1111 in reply to Survivor1965]

Gotta be the mustard.

[Survivor1965 in reply to monte1111]

Ok I don't get it

[monte1111 in reply to Survivor1965]

Maybe lettuce231 will chime in. Toast, Mayo, Mustard. Wish I could afford bacon.

[Kaliber in reply to monte1111]

Pass the Grey Poupon please ….

Bacon ? ….. seems like a lot of “ ham “ happening ….

( toast …ham… lettuce … Grey Poupon … uh …huh … )

Just say’in 😂😂😂😂

[monte1111 in reply to Kaliber]

Grey Poopon? Isn't that from Greece?

[Kaliber in reply to monte1111]

Yayahahahaya yayahahahaya that’s funny …. The master , J-o-h-n , has taught you well Jedi.

( grease )

😂😂😂😂

[j-o-h-n in reply to monte1111]

It's a specialty in Greece,,,,,,,goes good with feta....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/25/2021 10:49 PM DST

[Mw921000000 in reply to Survivor1965]

Stories like this give me hope for my dad. 59 diagnosed in January with stage 4 Metastatic PSA 277. Multiple bone lesions and lymph node involvement. Praying his time here is not as limited as the doctors predict. Thanks for sharing and all the best to you 🙏🏻

[larry_dammit]

Never give in, pull all your loved ones close and enjoy the time you have been given. 63 months and counting here 🙏🙏🙏

[Kaliber in reply to larry_dammit]

Amen 👏👏👏❤️❤️❤️

[33Ford]

Sounds like a similar start on your journey as mine! Unlike some others, I prefer a realistic prognosis, then I set my goals to beat it. Sure, we should be positive and hope (work toward) the best outcome, yet at the same time plan for the possibility of a wore case outcome. I feel I owe it to my family to get my ducks in a row!!! My goal is at least a 10 year run. 😊

[Shooter1 in reply to 33Ford]

I also am working on a 10 yr plan.. 3 down and 7 to go... working on my 5th yr with aPca, but started my 10 yr plan with thumb rebuild and waving goodbye to the boys...

[monte1111]

I'm a slob, as many will agree, and I made it 4 and a half years. So I don't think 5 years will be a problem for you. I'm Metastatic to bone with skeletal event - T12 compression fracture. 5 year survival is about 1% Excuse me, was 1% My opinion, either the drugs work, or they don't. Alcoholic, widower and my idea of a balanced meal is Marie Callender's. It certainly isn't my life style that's been getting me through this so far. The drugs and treatments that came out 10 years ago are why many of us have continued on to annoy others. For those whose treatments didn't slow the monster, to the seventh friend, I scratch my head and wonder why. Is it all just a roll of the dice? Roger, over and out.

[j-o-h-n in reply to monte1111]

Okay monte.....enough B S tell us about the time you were 8 years old and hiding in the wings of a theatre watching a strip tease show. You were there watching for a while and suddenly you started running out of the theatre. Well the manager grabbed you and said "okay kid you were watching the show for awhile and now you're darting out, why is that?" Your reply was "My mom told me that if I saw a naked woman I would turn to stone. And I was beginning to and thought it best to get out of here"...

P.S. It's Never "Roger, over and out". Cause what your saying to the receiver is "Right, you can talk now, goodbye"..... (signal corps),,,,

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/25/2021 11:01 PM DST

[Fitzbruce1]

Roger-Sorry to hear that you are part of the group that no one wants to join! My first few months were horrible but now after over 3.5 years with high volume stage 4 PC, I am living a normal life. Yes I have hot flashes n some muscle loss but I am very active. Riding dirt bikes in Moab, riding jet skis from

Lauderdale to Bimini, parachuting, paddle boarding almost every day and having a very active social life with my wife and my younger group of friends. I pretty much don’t even think about cancer during the day unless I am reading this forum, going to a doctors visit or taking my pills. You will be here for a long time! Enjoy the ride!

[Radtech40]

No one should give a timeline. My father was diagnosed 6 years ago stage 4 mets to bone everywhere and lymph nodes, psa 1240!! It’s been 6 years and he’s still in remission just chugging along. He’s done radiation, xgeva, Lupron, casodex and still hasn’t had to use Xtandi or Zytiga yet. Each time limit they gave us on how long each drug would last theyve been wrong. Keep a positive mindset and enjoy life.

They’ve got new treatments coming out all of the time.

[j-o-h-n]

Hello roger and me, poofer is still looking for Hoofer....

(Roger & Me tells the story of Flint, Michigan after General Motors chairman Roger Smith, shut down the GM plant leaving the entire town in financial ruin).

Anyway:

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

When a doctor tells you that you have 5 more years........politely kick him in the balls....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/25/2021 11:09 PM DST

[NRH_Beach]

Very similar to my diagnosis in 2019. I enrolled in the METACURE trial. RP, SBRT on the (3) vertebra tumors; later general radiation (39) sessions) to my "prostate bed"

I have the BRCA2 gene mutation and I have seen during my one (5 month) ADT vacation that this makes my cancer very aggressive.

I also had the advantage of starting as a fairly fit (57 year old). I now see fitness as my primary lever to extend my sensitivity to the ADT meds.

My Oncologists did not give me life expectancy - and I am grateful. There are folks on this board who are active after 18+ years. That became my private goal.

Best, Neil