1. < Prostate Cancer

Metastic prostate Cancer Survivors - longevity and quality of life

Posted by ringmastr1 @ringmastr1, Feb 26, 2023

I was just diagnosed at the beginning of January and of course the news hit me hard. I have found a lot of hope in the discussions within this group. I am curious to know how long ago people in this group were diagnosed with metastatic prostate cancer and what your quality of life is like. Right now I have no symptoms from the cancer itself other than weight loss (which I am actively monitoring and dealing with via extra eating) and I have no side effects from the medications the doctors are prescribing. I know that I am at the beginning of this journey and I hope that my current status stays the way it is for many years. We all need to have hope, and I am learning a lot about traditional and new Treatment options.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

ringmastr1 | @ringmastr1 | Aug 24, 2023
In reply to @agustinferrari "1- Did anybody applied for Social Security disability after the diagnosis? Yes yes can you please..." + (show)
@agustinferrari

1- Did anybody applied for Social Security disability after the diagnosis? Yes yes can you please explain?
2- Who is the longest survivor in this chat with MPC? Im 9 month into this journey...

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I applied for SSD on June 30th and my application was approved within a few weeks since I have PC with mets to my hip and lower back. There is a 5 month waiting period before you get your first check. The SSD people were very helpful.

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ringmastr1 | @ringmastr1 | Aug 24, 2023
In reply to @round5 "Your situation sounds very similar to mine. 8 years of fighting this cancer. Anytime I go..." + (show)
@round5

Your situation sounds very similar to mine. 8 years of fighting this cancer. Anytime I go off treatment it comes back.
Early 2015:PSA 19. Gleason 9 with CT and bone scan clear. Radical Prostatectomy MD Anderson.
Early 2016 Biochemical reoccurrence and went into clinical trial at MD Anderson with Zytiga and Leuprolide for 8 months when CT and bone scan negative.
2017 off treatment with PSA slowly rising.
2018 PSA 3.5,scans still clear,crossed over to Leuprolide alone for 8 months(big mistake,I should have left that place)
Early 2019 off treatment with PSA again rising. Left MD Anderson for Mayo and first PET scan done(Choline) and received summer of salvage radiation with the ADT of course when cancer found in prostate bed.
2020 off treatment but as soon as testosterone started up so did the PSA.
2021 another summer of radiation and ADT when choline scan found some spots higher up. Then in
2022 testosterone did not recover well at all but when it barely did in January 2023 PSA up to 0.37 and choline scan showed spot on rib so received my 3rd. round of radiation to that area,one time dose. PSA 7 weeks later(today)
0.47 so I guess there’s still active cancer somewhere.
Anytime I have a testosterone level the PSA rises. The radiation treatments were a piece of cake but the drugs are knocking me on my ass despite my continued exercising. Back to Mayo in 6 weeks for my first PSMA scan.

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@round5 How are you doing? Your story is inspirational and gives me more hope. I was diagnosed with Stage 4 PC in January at age 54

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ringmastr1 | @ringmastr1 | Aug 24, 2023
In reply to @ringmastr1 "You are pushing yourself the way I plan to push myself. Do you have a nutritionist..." + (show)
@ringmastr1

You are pushing yourself the way I plan to push myself. Do you have a nutritionist who can help you with eating the right stuff to maintain weight/strength? Your 13+ year journey is exactly the hope that I am looking for! Thanks for sharing.

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7 months into this journey and I'm rereading the posts in this thread. I've learned so much about various treatments and options, and the posts from my fellow warriors are important and useful. I had 5 radiation treatments to my hip and lower back. I'm on ADT. I generally feel great, except for the libido issues and shrunken testicles. @dsingstock How are you doing?

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cesar52 | @cesar52 | Aug 24, 2023
In reply to @agustinferrari "1- Did anybody applied for Social Security disability after the diagnosis? Yes yes can you please..." + (show)
@agustinferrari

1- Did anybody applied for Social Security disability after the diagnosis? Yes yes can you please explain?
2- Who is the longest survivor in this chat with MPC? Im 9 month into this journey...

Jump to this post

Had metastasis to lymph nodes in 2018. Stage 4B. Did fine for 4 years. Now PSA up. Diagnosed at 65. Now 70. I believe some of the guys have been dealing with metastatic PC longer then me.

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billfarm | @billfarm | Aug 24, 2023

Equally inquisitive about how this stage 4 goes foreword.Currently on xytiga/orgovyx only side effect is fatigue. Care team seems fixated on radiating pelvic area where prostrate and lymph nodes were removed. I question efficacy of this as metastased cells will still need drug therapy which I am tolerating well now.Question is why do I voluantarily give up 7wks of my life for treatment and struggle to recover from radiation for a unknown period?Real quality of life issue.

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melcanada | @melcanada | Aug 24, 2023
In reply to @brewst "Possibly metastatic prostate bone cancer? I'm on several ADTs but different bones ache sporadically. It's just..." + (show)
@brewst

Possibly metastatic prostate bone cancer? I'm on several ADTs but different bones ache sporadically. It's just grin and bear it now but I'm still on the green side of the grass at 88.

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When did the journey start with rad of prostate and now metastasis
I had it radiated 2017 It met to L 1 in 2020 Had that radiated In Jan 2023 L2 had 1 inch Put me on Xtandi and Xgiva PSA 1 to 9.8 to 1,7 to 2,3 and now 3 since Jan
On Zolodex last 3 years again

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round5 | @round5 | Aug 24, 2023
In reply to @ringmastr1 "@round5 How are you doing? Your story is inspirational and gives me more hope. I was..." + (show)
@ringmastr1

@round5 How are you doing? Your story is inspirational and gives me more hope. I was diagnosed with Stage 4 PC in January at age 54

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Scan bad. Just finished 6 cycles of Docetaxel and Carboplantin a couple weeks ago. Rescan Tuesday to see effectiveness. Lynzparza and Pluvicto on the table.

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fuzzy123 | @fuzzy123 | Aug 25, 2023

I’m 65 , Diagnosed Late June 2022. Stage 4 !! Been on Zytiga and prednisone with Lupron injections every 6 mos. My 3rd scheduled injection in 3 days !! I’m alive and dealing with the meds side effects !! It is what it is, as these are our only options if we want to Live !! Other health issues stole my 1st year 🙈 Hopefully the 2nd one is better ✌️ After that, that’s a whole different ballgame 🙈 and I’m told I’m the losing team 🙈 Not much to look forward to 🙈 Good Luck All

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agustinferrari | @agustinferrari | Aug 25, 2023

15 months into this journey, went thru docetaxel+nubeqa+Eligard every 3 months

So far so good, of course adt kills sex but I’m alive, working, traveling.

Newly diagnosed 6/2022 with PSA at 252 with several Mets age 47

There are 987 clinical trials going on, let’s hope one of them has the key to make this illness chronic!

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brewst | @brewst | Aug 29, 2023
In reply to @brewst "Possibly metastatic prostate bone cancer? I'm on several ADTs but different bones ache sporadically. It's just..." + (show)
@brewst

Possibly metastatic prostate bone cancer? I'm on several ADTs but different bones ache sporadically. It's just grin and bear it now but I'm still on the green side of the grass at 88.

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Yes, lower back (iliac crest) and hip aches. Also lowest rib, right side. Radiologic bone scans show lesions in those places. (on my own I'm also trying soursop (graviola) herbal capsules which some people say are effective -- possibly!)

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