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.

@markheuer

What does timt mean?

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;Sorry....typo...PSA timing intervals 'at the time of BCR'. Thank you.

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PSA was measured every six months over a ten year span until recurrence was identified.

Since recurrence PSA is taken every month

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I was diagnosed with prostate cancer and treated with radiotherapy 7 years ago ,after that my cancer continued and I'm being treated with hormone therapy, so far not a big problem. Now they want to apply chemotherapy , because of metastasis, and I'm trying to be informed before making a decision whether taking the treatment or not...can someone tell about the real side effects of chemotherapy, I understand that I've got to go through 6 rounds with docexatel....

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@garymun

Sex is over-rated, but PC really sucks. IMHO it is the ultimate menopause equalizer.
My Xtandi/ Leupron routine hasn't hit your PSA goal yet, but a bone scan results should be a better indicator, even if it relies on Radiologist just eyeballing it. Enjoy life, hot flashes, dizzyness and such be damned!

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I am going to try to emulate the attitude of Gary in!

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@dsingstock

Had 3 PSMA PET scans all showed something compared to metastasized prostate cancer. Oncologist said that they (with me) were not particularly useful. The Urologist scheduled them. What the Oncologist liked were C T scans in the chest and abdomen areas. Provided more info.

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Everything I have read states PSMA PET is the gold standard for identifying micro cells with PSA levels 0.3-0.5.. CT Scans are also subject to the quality of the interpretation of human, I was having an CT for an hernia and the qualified personnel actually stated my prostate was of normal size 8 MONTHS post Radical Prostatectomy.

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@rinconingles

I was diagnosed with prostate cancer and treated with radiotherapy 7 years ago ,after that my cancer continued and I'm being treated with hormone therapy, so far not a big problem. Now they want to apply chemotherapy , because of metastasis, and I'm trying to be informed before making a decision whether taking the treatment or not...can someone tell about the real side effects of chemotherapy, I understand that I've got to go through 6 rounds with docexatel....

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Finished 6th treatment Docetaxel 1 month ago, im 47 newly diagnosed in sept 2022 with bone metastasis, in good physical shape: Docetaxel was very tolerable on my case, just need to be careful with yourself with meals, REST after each treatment, and DIRNK lots of water during treatment (+/- 1 glass of water per hour!, add day long)

My most notorious side effect: fatigue, contrary to resting, what you need to do is WALK

best

agustin

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@vjlvpjalways

Everything I have read states PSMA PET is the gold standard for identifying micro cells with PSA levels 0.3-0.5.. CT Scans are also subject to the quality of the interpretation of human, I was having an CT for an hernia and the qualified personnel actually stated my prostate was of normal size 8 MONTHS post Radical Prostatectomy.

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I had 3 PSMA PET scans and Urologist said there it is metastasized on ribs 7 and 9. Not sure we'll do it again. Ya looks like it metastasized, bit you have had broken ribs and there is scar tissue. Let's do it again oh, it appears to be compatible with metastasized cancer. Oncologist said really can't see much need to do 2 CTs, hest and abdomen. Ya, looks like it is compatible. Nothing shown in the abdomen CT. Had radiation and Bracytherapy 12 years ago. No signs of recurred cancer. Now on Xtandi and Eligard injections. Feel like hell. Before Christma on Casodex and psa wrnt down from 20.8 to 2.7 and felt great. Next psa end of the month interesting to see what is happening

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@rinconingles

I was diagnosed with prostate cancer and treated with radiotherapy 7 years ago ,after that my cancer continued and I'm being treated with hormone therapy, so far not a big problem. Now they want to apply chemotherapy , because of metastasis, and I'm trying to be informed before making a decision whether taking the treatment or not...can someone tell about the real side effects of chemotherapy, I understand that I've got to go through 6 rounds with docexatel....

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Ask about xovigo I’m on it now it’s a piece of cake ,I’ve had radiation, 5 chemo treatments , they put me on chemo because they found a new spot that was aggressive prostate cancer I have prostate cancer in both my ribs my sternum and my scapula then this new one popped up that’s when they said they had to put me on radiation and then came to Florida went to Moffitt Cancer Center they took me off the chemo and put me on Xovigo I get six treatments once a month it’s a radiation injection into your bloodstream that goes into the bones and gets absorb blood calcium but if your metastasis is bad they will probably wanna put you on chemo first to knock it down the only reason I went on chemo because of the aggressive cancer otherwise my hormonal therapy was working great good luck DAVE

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@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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My husband is 61, had prostate removed summer 2020. Now he has been told he has stage 4, because it is in a couple lymph nodes, and the bladder. Taking hormone shots. Then going for a blood work, to see if stopping cells growth and then will do some radiation in summer.

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I am curious as to your age, and how this has progressed. I hope we still have many quality years together.

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