11 anniversaries since diagnosis of stage 4 prostate cancer

Posted by mccsjm @mccsjm, May 25 12:47am

Diagnosed at 63, I did not have the confidence at that time to believe I would live another 10 years. Yet, I just completed another follow-up visit in the past two weeks. My semiannual routine includes a blood draw for PSA and metabolic panel, followed by a visit to my oncologist's office. Given the many years of hormone therapy, they added a DEXA scan to check my bones.

Overall, they are happy with the results. PSA remains undetectable (might not be the most sensitive assay. My lipid levels remain elevated, so lipid-lowering medication may be inevitable in the near future, but it's not the end of the world. I hope my experience can encourage my fellow warriors. Living with prostate cancer is entirely achievable.

I also learned that the website for clinical trial matching that my oncologist pointed me to previously (inforeach.org) has added search for treatments recommended by clinical guidelines. It's quite intriguing as you can check if your treatment is consistent with the standard of care. Sharing this information for anyone who may want to check it out.

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

@retireddoc

Just to add to the conversation a bit more. My MO and his NP have been treating oligo metastatic disease, as I described in my other post, for a number of years now. In fact, a search of the literature is how I discovered them, contacted them by email which led to a Zoom consultation and then treatment in 2022. I read an article by Diane Reyes (his NP) and Ken Pienta ( my MO) titled "Total Eradication Therapy". It was a smaller series of men treated with RP/radiation of the primary, triple therapy, MDT with radiation to the few mets and pelvic radiation. This was in the initial castrate sensitive state. The ADT (Lupron) was discontinued after one year in patients with an undetectable PSA. The majority had their T return to normal levels while maintaining an undetectable PSA off all medication. I remain undetectable after completing triple therapy in 12/22 and last 3 month Lupron injection in 7/23. My T has yet to return to normal, although they say this can take a year after the effects of the ADT wear off.

You are right that this aggressive treatment is still controversial, but hitting the cancer hard in the beginning and killing as many clones and cells as possible made sense to me.

Dr. Pienta is the Director of the Johns Hopkins Brady Urologic Research Institute and holds appointments in the Departments of Urology, Medical Oncology and Molecular Biology. He has published > 300 peer reviewed articles on prostate research, diagnosis and treatment. I have total confidence in both him and Diane Reyes. I will do as they suggest. I have read on many forums patients that read literature and try to direct their own treatment to some degree. That doesn't work for me. I know just enough to be dangerous having practiced medicine for 40 years but also know enough to realize my specialists know much more than me.

Each person needs to find their own path and I wish everyone the best.

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Yes, I am keeping a close eye on it, and it sounds promising. My fear is that if I tried it now, in a year or two my currently highly-stable, castrate-sensistive PCa could come back as castrate-resistant.

I might have chosen that therapy if it had been offered to me right at the beginning, before I knew how I'd respond to radiation, ADT, and ARSI. However, after a rapid PSA decline to undetectable and stability for nearly three years, as well as tolerating the treatments without too much difficulty, I have the extra info (prior coin flips, if you will, or choosing the first door in the Monty Hall Problem) that change the risk calculation for me, so it will take a much bigger body of evidence now to convince me to upset the apple cart.

In 2021, I wouldn't have known that this approach would end up working so well for me, so I'd have been willing to risk a more drastic one, like you did.

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If your treatment has resulted in an undetectable PSA for 3 years, I wouldn't do anything differently either! With so many new drugs, treatments and combinations to choose from it's hard to know what is the right thing to do. But if it's working, I wouldn't change anything.

Good luck to you!

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Thank you, this has helped a lot, I’ve been having a hard time coping with my stage 4A situation.

RAPL, ADT, Abiraterone, Prednisone and just finished 38 Radiation sessions.

No detectible PSA, I guess slim chance of being cancer free but possible.

I can live with this, but recently had to stop Abiraterone due to high liver enzymes… will go back on again in a month. Nervous being off of it for 5 months though.

Anyhow, thank you for showing me a way.

Regards

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@tenders2023

Thank you, this has helped a lot, I’ve been having a hard time coping with my stage 4A situation.

RAPL, ADT, Abiraterone, Prednisone and just finished 38 Radiation sessions.

No detectible PSA, I guess slim chance of being cancer free but possible.

I can live with this, but recently had to stop Abiraterone due to high liver enzymes… will go back on again in a month. Nervous being off of it for 5 months though.

Anyhow, thank you for showing me a way.

Regards

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At stage 4b (oligometastatic) myself, I'd love to think I could be cancer free some day, but I'll be happy to settle for managing my cancer as a long-term chronic disease until old age, like we can now with HIV/AIDS.

We might be arriving at that point in 2024, but we won't know for sure for a few more years until researchers have done follow-up surveys and crunched the numbers. The author of this article thinks there's a good chance:
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/

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@tenders2023

Thank you, this has helped a lot, I’ve been having a hard time coping with my stage 4A situation.

RAPL, ADT, Abiraterone, Prednisone and just finished 38 Radiation sessions.

No detectible PSA, I guess slim chance of being cancer free but possible.

I can live with this, but recently had to stop Abiraterone due to high liver enzymes… will go back on again in a month. Nervous being off of it for 5 months though.

Anyhow, thank you for showing me a way.

Regards

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When you got off of Arbiterone, did your fatigue go away,?
?

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Lordy your doing well with a stage 4 diagnosis . Your on hormone therapy ....BUT still, outstanding progress . Remember , research is changing things so quick that they probably have a replacement for hormone therapy soon ! I had operation March 31, 2021 . My PSA did not go to zero , it hung around 0.14 and a slight rise . About a year ago I got 22 sessions of radiation with no chemicals or ADT . Now my PSA is sliding . from 0.14 , it went to 0.072 after about 5 months , and now is at 0.056 . this is after a year . It takes this long for radiation to work ? My next test for PSA is in 2.5 weeks . Im starting to loose sleep over it . I get up and walk around the house with the dogs at 3 am . My stress around PSA is bad . My father passed away with PC about 26 years ago - I know the world has changed since then . I was his care giver . He suffered in silence . I closed his eyes and drew the sheets over his head upon his death 26 years ago at his age of 67 . That stuck with me . I have good care here , but I am haunted by my past caring for my father . Any ideas ? James on Vancouver Island .

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@vancouverislandhiker

Lordy your doing well with a stage 4 diagnosis . Your on hormone therapy ....BUT still, outstanding progress . Remember , research is changing things so quick that they probably have a replacement for hormone therapy soon ! I had operation March 31, 2021 . My PSA did not go to zero , it hung around 0.14 and a slight rise . About a year ago I got 22 sessions of radiation with no chemicals or ADT . Now my PSA is sliding . from 0.14 , it went to 0.072 after about 5 months , and now is at 0.056 . this is after a year . It takes this long for radiation to work ? My next test for PSA is in 2.5 weeks . Im starting to loose sleep over it . I get up and walk around the house with the dogs at 3 am . My stress around PSA is bad . My father passed away with PC about 26 years ago - I know the world has changed since then . I was his care giver . He suffered in silence . I closed his eyes and drew the sheets over his head upon his death 26 years ago at his age of 67 . That stuck with me . I have good care here , but I am haunted by my past caring for my father . Any ideas ? James on Vancouver Island .

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My father died of colon cancer 14 years ago. He waited too long, and then didn't want to fight it, so he spent most of the last year of his life just lying in a hospital bed.

I promised my kids that if it ever happened to me, I'd fight. I didn't think I'd have to keep the promise so soon, but I did.

There's a saying in aviation that you have to keep flying the plane until every piece of it stops moving. I apply that to life as well. This isn't our fathers' cancer, and we have a lot more tools to keep living *almost* normal lives.

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yes , I agree with you . Its tough seeing our fathers this way . My father hated doctors , he was a Chemical Engineer by education. Smart man , but hated doctors . He told me they do too much "guess work" ! That was dad though . He was a kind man.

Yoru aviation analogy hit home . "Any landing that you walk away from - IS a good landing" , I was taught in Private school ...later on at the aviation academy we tweeted this saying a bit . With the IFR and jet endorsement you began to trust ATC and the whole support system around you . I started flying when I was 15 . Private license at 16 , commercial license at 18 and so on . Flying in remote areas of Africa , to Europe to Latin America. I did it all . Makes me wonder , with th radio bank and transponder at my pelvic level and radiation from flying at FL410 or FL 390 ....makes me wonder what the role of radiation played in the PC I have . Likely mostly genetics I think as dad likely had it in his 50's , but discovered it at 60 . died at 67 . God Bless you Sir ! James on Vancouver Island .

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I would so love to talk to you more. My dad is 75 and was just diagnosed with stage 4 metric prostate cancer and we need guidance , advice and help!

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@sixto

What Stage 4 do you have? Stage 4A is contained within the pelvic region. I was diagnosed with Stage 4B metathesis throughout my body to my lymph nodes in my upper body - chest, neck , thorax etc.
Diagnosed in August, 2023. My prognosis is 50% survival to 5 to 7 years after diagnosis.

Does anybody else have Stage 4B?

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Hi; on 04/15/24 I was diagnosed with PC metastatic to the bones up to my spine also in lymph nodes. Gleason:9.
They said 5 years of survival with the triplet therapy (eligard injection, nubeqa tablets, chemo doxetacel) I am on second round of chemo holding well. First round I ended up in hospital for 5 days; neutroponic fever and sinus infection.
Thank you the positive news that the survival projections sometimes are too pessimistic!
Let’s keep on rocking!

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