Anyone have Prostate Cancer Stage 4 with good results?

My story of prostate cancer:
I retired in March of 2018. Was diagnosed with pc sometime in July of 2018 and had surgery to remove my prostate. I was a 4+4.
I had psa tests every 3 months and then in late 2019 my psa started rising. I have had all of my diagnoses/treatments at the Mayo Clinic in Arizona. In January of 2020 I started radiation treatments every weekday for 3 months. After this my psa was not detectable. I tested every 6 months and it stayed undetectable until January of 2024. Had mri and pet scan and cancer showed in my prostate region. So more radiation but only for 5 days and in different area than previous treatment. Then was sent to oncologist. I was given my first lupron shot in March of 2020 and also started taking arbiraterone tablets daily. The only side effects I had at this time was hot flashes, bothersome but easy to deal with. 6 months later my psa. Still undetected and had my 2nd Lupron injection on 9/30. A week after this injection I started feeling very fatigued and could not walk more than a 100 yards before my legs became super weak and wobbly. I have started physical therapy for about a month now 3 times a week as I read on this forum it might help. So far it has not and I can barely walk to my car from pt clinic. I feel like only half a man. My family always has to ask before we go somewhere “will you be able to walk that far” ? I always say yes even knowing I will be exhausted the whole time.
I will get my 3rd Lupron injection in March of 2025. I am concerned that my fatigue will even get worse after that. If it does not sure what I will do. (Hopefully not a wheelchair as I do not want to be a real burden on my family)
I see my oncologist in January 2025 to go over a bone density test I had last month. I will discuss my fatigue and weakness with her then and see if there’s
An alternative treatment option.
I am 70 and still beating this cancer but it is a rough road. I have read on hear even after the last Lupron injection it takes a longtime for testosterone levels to get back up which would elliviate the fatigue and weakness with.
Anyone else with a similar treatment course and similar side effects??

Thanks for your response. After reading a couple comments on here about increasing my prednisone, I asked my oncologist about increasing mine. She said not a good idea as the effects of increasing it could not be good. I see her in January snd I will discuss with her again. Maybe when she sees how exhausted I am just from walking from the parking lot at mayo in phoenix i can get a different opinion from her
Thanks again for the suggestion

I'm 73. I had a similar reaction after my third lupron injection. Walking was difficult, my hips, knees and ankles were really sore.
I ramped up my yoga exercises to almost daily at home and once to twice a week in a studio. Yoga is the best. I also started back in the gym lifting weights. It is helping but you can easily overdo it so the initial startup has to be gradual. I have learned that you have to physically fight the loss of testosterone. Yoga is my main go to remedy.

My story of prostate cancer:
I retired in March of 2018. Was diagnosed with pc sometime in July of 2018 and had surgery to remove my prostate. I was a 4+4.
I had psa tests every 3 months and then in late 2019 my psa started rising. I have had all of my diagnoses/treatments at the Mayo Clinic in Arizona. In January of 2020 I started radiation treatments every weekday for 3 months. After this my psa was not detectable. I tested every 6 months and it stayed undetectable until January of 2024. Had mri and pet scan and cancer showed in my prostate region. So more radiation but only for 5 days and in different area than previous treatment. Then was sent to oncologist. I was given my first lupron shot in March of 2020 and also started taking arbiraterone tablets daily. The only side effects I had at this time was hot flashes, bothersome but easy to deal with. 6 months later my psa. Still undetected and had my 2nd Lupron injection on 9/30. A week after this injection I started feeling very fatigued and could not walk more than a 100 yards before my legs became super weak and wobbly. I have started physical therapy for about a month now 3 times a week as I read on this forum it might help. So far it has not and I can barely walk to my car from pt clinic. I feel like only half a man. My family always has to ask before we go somewhere “will you be able to walk that far” ? I always say yes even knowing I will be exhausted the whole time.
I will get my 3rd Lupron injection in March of 2025. I am concerned that my fatigue will even get worse after that. If it does not sure what I will do. (Hopefully not a wheelchair as I do not want to be a real burden on my family)
I see my oncologist in January 2025 to go over a bone density test I had last month. I will discuss my fatigue and weakness with her then and see if there’s
An alternative treatment option.
I am 70 and still beating this cancer but it is a rough road. I have read on hear even after the last Lupron injection it takes a longtime for testosterone levels to get back up which would elliviate the fatigue and weakness with.
Anyone else with a similar treatment course and similar side effects??

I was diagnosed with G9 at age 68, right about retirement. Had RP. Six months later I had PSA rise with PET scan showing met at T8. Treated with local (SBRT) radiation. Four months later PSA again rises significantly with another PET scan showing new pelvic node. Went to Johns Hopkins and had triple therapy Lupron for one year, Darolutamide for 3 months, and 4 cycles of Taxotere). PSA went immediately undetectable after second chemo session and has remained so for 2 years.

My last 3 month Lupron shot was July 2023. I experienced all of the usual side effects of low T- fatigue, low libido, loss of muscle, depression etc. My T did not recover (last test was September and T was 52). My JH medical oncologist said I needed to have testosterone replacement therapy (TRT) as I could not continue long term with markedly depressed T. I saw an endocrinologist and was placed on Androgel. I had labs drawn yesterday. T now in high normal range, 845. PSA remains undetectable. My low T side effects are slowly starting to subside.

TRT in men with history of prostate cancer (especially metastatic -oligo-disease) remains highly controversial. But there are known long term deleterious side effects from low T aside from fatigue, depression etc. Some oncologists may be very reluctant to put their patients on TRT as the T may fuel cancer. I have the utmost confidence in my experienced, knowledgeable oncologist at JH. The TRT isn't for everyone.

I was diagnosed in January 2014...

Attached is my clinical history, 10+ years.

Mine is a high risk PCa, GS 8, Grade Group 4, rapid PSADT and PSAV, time to BCR after surgery.

As others have said, this is a "fortunate" time to be living with Advanced PCa given the exponential advances in imaging, treatment and most importantly, how the medical community thinks about managing advanced PCa.

Gone are the day of continuous, sequential and progressive monotherapy with single agents, each destined to fail with death following. Now, we combine treatments, bring them forward in the PCa and while the general school of thought is Advanced PCa is not "curable," it can be managed as a chronic disease for many, sadly, not for all.

This "wealth of choices", when to image, with what, doublet or triplet therapy, which ADT, which ARI, which type of radiation, PARP, Radioisotopes, Genomic tests...requires us to inform ourselves and have discussions with our medical team about treatment choices, what, when, for how long...

In those 10+ years, I've packed a lot of living - birthdays, anniversaries, skiing in Colorado, watching my daughters graduate from high school and college and go on to the next phases of their lives, vacations to Iceland, The Big 5 in Utah, Oregon, Glacier, Waterton and Banff National Parks...you get the idea. Next April we're planning a trip to Sedona, AZ with our daughters.

I will never forget the phone call from my urologist with the results of the biopsy, the shock, the "pity party..." Since then, I've picked myself up off the floor, informed myself, made decisions...

None of us are thrilled about treatment, each time I've started ADT and when I started chemo, I questioned myself, angry at what I was doing, knowing the side effects...for whatever reason, the radiation treatments (all 69) have not evoked the same feelings, perhaps because for me, zero side effects and a very short treatment window. Each of us make decisions from a plethora of choices while deciding on the balance between quantity, quality of life, treating too soon, too late, continuous or intermittent..,

So, there is "hope."

For friends, colleagues and acquaintances who now know better than to say "oh, you are lucky, isn't that a good cancer", a sharp response of, that's an oxymoron, say that to the 30k who die of it each year and if you want to get into the details of the side effects of treatment, how much time do you have to talk...!

I am not downplaying his PCa, 30k or so die each year of it, not with it. I have a friend who will soon join that group.

So, we are living in a world today where living with our Advanced PCa as a manageable "chronic" disease is more possible.

Kevin

I was diagnosed with G9 at age 68, right about retirement. Had RP. Six months later I had PSA rise with PET scan showing met at T8. Treated with local (SBRT) radiation. Four months later PSA again rises significantly with another PET scan showing new pelvic node. Went to Johns Hopkins and had triple therapy Lupron for one year, Darolutamide for 3 months, and 4 cycles of Taxotere). PSA went immediately undetectable after second chemo session and has remained so for 2 years.

My last 3 month Lupron shot was July 2023. I experienced all of the usual side effects of low T- fatigue, low libido, loss of muscle, depression etc. My T did not recover (last test was September and T was 52). My JH medical oncologist said I needed to have testosterone replacement therapy (TRT) as I could not continue long term with markedly depressed T. I saw an endocrinologist and was placed on Androgel. I had labs drawn yesterday. T now in high normal range, 845. PSA remains undetectable. My low T side effects are slowly starting to subside.

TRT in men with history of prostate cancer (especially metastatic -oligo-disease) remains highly controversial. But there are known long term deleterious side effects from low T aside from fatigue, depression etc. Some oncologists may be very reluctant to put their patients on TRT as the T may fuel cancer. I have the utmost confidence in my experienced, knowledgeable oncologist at JH. The TRT isn't for everyone.

I too have stage 4, Gleason 9. Metastasized to hip,left leg bone spine and spots on rib bones. I have had your meds and chemo. I just finished my 6th treatment of Pluvicto. I'm taking daily Abiraterone and prednisone. Quarterly eligard, monthly zometa infusion for bones a daily pill for hot flashes and numerous supplements and vitamins. I found out in December 2020 and stated the treatments and fighting this cancer in 2021. I started out with my PSA at 1,834 and about 10 days ago it was down to 7.9
I will continue the fighting and treatments to be with my family
Best wishes to all of us "fighters" and survivors.

Thank you for sharing.
In Dec 2024, I discovered I have stage 4 prostate cancer, Gleason 9 & metastases in my left femur, right pubic bone and several spots on my spine (as seen from PET scan).
Taking Lucrin Depot (6 months) and Darolutamide.
PSA went from 17.4 to 0.17 and then to 0.20.
Saw an oncologist. He has sent me for another PETScan to determine if I need chemo.
Your sharing is encouraging.

Thank you for sharing.
In Dec 2024, I discovered I have stage 4 prostate cancer, Gleason 9 & metastases in my left femur, right pubic bone and several spots on my spine (as seen from PET scan).
Taking Lucrin Depot (6 months) and Darolutamide.
PSA went from 17.4 to 0.17 and then to 0.20.
Saw an oncologist. He has sent me for another PETScan to determine if I need chemo.
Your sharing is encouraging.