1. < Prostate Cancer

Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years?

Posted by ringmastr1 @ringmastr1, May 26, 2023

There is a lot of great info on this forum. I am 54 and was just diagnosed in January with metastatic Stage 4 PC. (Hip, L4, Sacrum, and a small liver lesion). My PSA has gone from 359 in January to .24 last week and I feel great! I am curious to know how many guys on this forum have been treated for more than 10 years and what your quality of life is like. It is stories like this that will give me (and others) more hope. Peace to you all!!!

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

ringmastr1 | @ringmastr1 | Dec 16, 2023
In reply to @robert570 "Just passed 10 years. October 2013. STAGE 4 GLEASON 9. Now 62 and nothing has changed..." + (show)
@robert570

Just passed 10 years. October 2013. STAGE 4 GLEASON 9. Now 62 and nothing has changed except the medicines and treatments.

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Your story gives me lots of hope! What meds did you start with and how have they been adjusted over the years? I've been on daily abiraterone, daily Prednisone, and quarterly lupron for 11 months

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1 reply
wooldridgec | @wooldridgec | Dec 16, 2023

Where you de novo when diagnosed or did you start stage one and progress the stage 4? What was your PSA when you were first diagnosed? What treatments did you receive?

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ringmastr1 | @ringmastr1 | Dec 16, 2023
In reply to @wooldridgec "I am 61 years old. I was diagnosed with metastatic de novo PC July 27 2022...." + (show)
@wooldridgec

I am 61 years old. I was diagnosed with metastatic de novo PC July 27 2022. My birthday of all days. Cancer showed up in my bones - spine, ribs, and hips. I had intense pain at first - I could not lay on my back. After an emergency Gall Bladder surgery - I still could not lie on my back. Went back to the ER - had CT and Bone scans which confirmed adenocarcinoma PC. Started Casodex (30 days) and 10 cycles Radiation to spine and 5 to ribs. Pain disappeared and has never come back. PSA started at 32 and quickly dropped to 1.005. A month later I started Darolutamide and Chemo therapy. I had 10 cycles of Docetaxel because my blood was other-worldy and 10+ cycles of chemotherapy has greater overall survival (OS) stats. Because I could handle chemo very well my doctor asked if I wanted to continue - so I did. At the end of my 10th chemo cycle my PSA dropped to 0.238 and continued to slowly drop to undetectable. I am a slow PSA dropper. All Genetic and Genomic testing also came back negative. I have Zometa infusions every month and eat a 60% plant based diet, exercise (bands & walking) and I work every day. My recent Bone scan showed great improvement and several spots are now resolved. My treatment was patterned after the ARSENS trial. It has been 5+ years since the ARSENS trial ended. At this time Overall Survival (OS) and time to Castration Resistance still has not been reached from the ARSENS trial.

Lastly, I do not look at or except the SARS data. The SARS data is based on ADT alone. This is a Chronic Disease - the medical community does not know how long anyone will live with this disease. I expect to live 20+ more years. Lastly, I find rest and peace with my relationship with Jesus.

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Thank you for sharing the details of your journey! 20 years is a great milestone to look forward to!! I'm doing the same. Wishing you peace this holiday season.

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agustinferrari | @agustinferrari | Dec 17, 2023
In reply to @robert570 "Just passed 10 years. October 2013. STAGE 4 GLEASON 9. Now 62 and nothing has changed..." + (show)
@robert570

Just passed 10 years. October 2013. STAGE 4 GLEASON 9. Now 62 and nothing has changed except the medicines and treatments.

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Wow you are the North Star of hope!

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robert570 | @robert570 | Dec 17, 2023
In reply to @ringmastr1 "Your story gives me lots of hope! What meds did you start with and how have..." + (show)
@ringmastr1

Your story gives me lots of hope! What meds did you start with and how have they been adjusted over the years? I've been on daily abiraterone, daily Prednisone, and quarterly lupron for 11 months

Jump to this post

I started out with a prosectomy, followed by radiation,
followed by provenge treatment. From there I had taxotere chemotherapy, lupron shots twice a year. Next was Abirateone acetate and prednisone which kept me in remission for almost 4 years. After that stopped working, they gave me Xtandi. That only lasted 3 months. Then they gave me 13 rounds of Jevtana. Pluvicto came available and that failed after 3 rounds because it made my PSA rise rapidly in my opinion. They put me back on Jevtana now, with 5 rounds of carboplatin with it. I'm on Jevtana alone again, every 3 weeks. This is where I stand now. My PSA rose from 1.56 to 20.83 after using Pluvicto, which failed. My PSA is now 19.33 after 5 rounds of Jevtana. As long as it works, they have me approved for that for a year.

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melcanada | @melcanada | Dec 18, 2023

Any idea why Jevtana is better than taxotere chemo for yo

Why did Lu 177 or Pluvicto not ork, The want me on a clinical trial of both

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4 replies
digger | @digger | Dec 18, 2023
In reply to @melcanada "Any idea why Jevtana is better than taxotere chemo for yo Why did Lu 177 or..." + (show)
@melcanada

Any idea why Jevtana is better than taxotere chemo for yo

Why did Lu 177 or Pluvicto not ork, The want me on a clinical trial of both

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Hi I’m getting my first pluvicto treatment tomorrow can you give me any advice or how the side effects were and how long you had to stay away from people 2-3/days thank you Dave

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2 replies
melcanada | @melcanada | Dec 18, 2023
In reply to @digger "Hi I’m getting my first pluvicto treatment tomorrow can you give me any advice or how..." + (show)
@digger

Hi I’m getting my first pluvicto treatment tomorrow can you give me any advice or how the side effects were and how long you had to stay away from people 2-3/days thank you Dave

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Ask @robert570 he was on it as above

I have not been accepted yet

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rkurtzjr | @rkurtzjr | Dec 18, 2023
In reply to @edmond1971 "54 is young for joining the club, so I'm thinking positive thoughts for your long-term good..." + (show)
@edmond1971

54 is young for joining the club, so I'm thinking positive thoughts for your long-term good health. An important part of your self-education journey (which needs to occur continuously) is to make sure that any information about life expectancy is always reviewed in context to the age (median, average), the definition of metastatic spread, and the overall health of the participants. Rarely do I find all that information available.

I'm 52 and had my prostate removed at 42, and things were fine until last summer when my PSA skyrocketed and now I'm on Eligard/Zytiga for the past six months and my PSA is at undetectable levels. My metastatic spread is limited to 10+ lymph nodes in my iliac region, and while that isn't something that brings joy, it is very different then having it spread into the bones or organs. I also have a small lesion on my liver but the PSMAPET showed no uptake, so we discounted it. My oncologist doesn't give any guidance beyond 10 years but he puts me in the category of 10+ years.

Do you research and you will be informed, confident, and able to live a positive long life.

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Why no radiation to the lymph nodes?

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2 replies
wooldridgec | @wooldridgec | Dec 18, 2023
In reply to @melcanada "Any idea why Jevtana is better than taxotere chemo for yo Why did Lu 177 or..." + (show)
@melcanada

Any idea why Jevtana is better than taxotere chemo for yo

Why did Lu 177 or Pluvicto not ork, The want me on a clinical trial of both

Jump to this post

I think insurance companies prefer Docetaxel versus Jevtana when Castrate Sensitive. At least that is what I have been told. Jevtana also seems to have fewer side effects and is better tolerated. My understanding is that for some who become Castrate Resistant doctors may choose a combination of Jevtana and Carboplatin. My understanding regarding Pluvicto is that people respond in three ways. 1) It does not work. 2) It works but only drops PSA 50%, or 3) there is a profound response to the treatment. I do not know why Pluvicto works for some and not others. I have the same questions about chemotherapy and ADT. I'm guessing it depends on the type of PC mutation that one is experiencing. Is there BRAC1 or BRAC2 involvement or some other mutation that one might not be aware they have. Prostate Cancer sucks. We have to keep fighting.

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