Prognosis for Stage 4 Metastatic Prostate Cancer

I'm afraid to ask my dr. for "how long". Actually I don't ask too many questions. I leave that up to my copilot. I don't handle this too well. I need to have my routines and if something messes that up I'm in trouble. I'm 69 and still working. I often wonder what will happen when I stop working. For now that keeps me moving giving me purpose, on the weekend I "rest". I'm only one year into this journey, seeing posts of people being 5, 10 years into the journey gives me great hope. Sometimes I ask myself what age do I want to live to, not sure of the answer but not ready to give in yet. This is not how any of us planned to live out our golden years but here we are. I want to thank everyone on here for helping me to keep positive. Best to all.

Yes. I have had that treatment (triplet therapy). I have high volume de novo stage 4 metastatic Prostate Cancer (PC) with metastases in the spin, hips, and ribs (i.e, bone only). I started with 10 radiation treatments to my spin followed by 5 to the ribs. Oncologist first started me on Casodex for 30 days and then I started 3 month injections of Eligard along with 600 mg daily of Darolutamide (Nubeqa). I immediately started chemotherapy (docetaxel) 10 cycles. My PSA dropped from 32 down to 1.005 at the start of chemo and then slowly dropped to undetectable (i.e., < 0.100) 2 months after chemo ended. I continue to stay undetectable. If you have PC in the bone, Alkaline Phosphatase is another important biomarker. Mine was around 180 when I was diagnosed. I consistently stay down between 38-40 now. Alkaline Phosphatase is raised when the PC destroys the bone. It is up to you, but I would request additional cycles of chemo beyond 6. The 6 cycles was arbitrarily chosen to reduce side effects. Your Overall survival goes up dramatically when you increase upfront chemo to 8 or 10 cycles. You need to ice your head, hands, and feet during chemo to reduce neuropathy. Triple therapy is the standard of treatment now and based on the results from ARSENS trial. The trial was 4.2 years and those men who got Darolutamide (Nubeqa), ADT, and 6 chemo's are still alive and are still Castrate Sensitive. Matter of fact, new ARSENS data has been recently been released, and at now 5.5 years, the results for these men are the same. Note that everyone responds differently to treatment. If you can handle more chemo, talk to your doctors about continuing if you have the resolve. Also be aware that it may take longer to recover from chemo if you do extended cycles. Darolutamide does not break the blood Brain barrier so you will not experience much brain fog. But you will get chemo brain. It will pass over time. Lastly, ask your doctor for genetic and genomic testing to make sure you do not have any genetic markers such as BRAC1 or BRAC2. If you have pain from bone metastases ask for palliative radiation to shrink to tumors. No matter what any one says, radiation kills the cancer - even palliative radiation. The idea is to kill the cancer up front and any micro metastases left behind. Think of triplet therapy as carpet bombing the cancer. Let no cancer be left behind and bite you in the butt years later. Do not give it a chance. God Bless you.

Hello. My husband was diagnosed in 2021. He was 52 at the time of diagnosis. He has always been one of the most active and healthy individuals I have ever known. He ran many marathons, including Boston so he was fast, never ate anything unhealthy, never smoked, rarely drank and exercised daily, but has a family history of prostate cancer - both brothers, his dad and uncle all had prostate cancer and one brother at the age of 40.

Nobody in his family ever had prostate cancer spread outside of the prostate, except my husband. And all family members who had prostate cancer had their prostate removed.

At diagnosis my husband’s Gleason was a ten and he was informed he has an aggressive form of prostate cancer.

After he had his prostate removed we were informed that the cancer had spread to his lymph nodes.

This was devastating. Stage 4 metastatic prostate cancer at age 52. We have three children and have been married now for 25 years.

He underwent radiation for 33 days and then two years of hormone therapy. aberaterone, daily steroid and lupron. He felt bad. Not himself, very limited energy and frankly depressed. It was a very difficult time for him and our family.

Fast forward and he is now three years out from initial diagnosis. He has been off the hormone therapy for one year. His PSA is undetectable. He has more energy now than he did during treatment and we are thankful that so far his cancer has not come back.

This diagnosis has forced us to live life by the day. Nobody knows how long we all will have. We have good days and then some days are full of worry and asking what if.

We are thankful for the time we have now. My husband has plans to do some things he would otherwise put off for later on in his life had he not been diagnosed with cancer.

He’s going to run the Grand Canyon from rim to rim, in the fall. Even if the definition of run may include several breaks in between to stop and rest.

I read these posts weekly and it helps me to hear your stories.

Enjoy the day today. The present is really all anyone has.

I like where you’re going with this. Presently I’m stage 4 on Lupron X4 months and Erleada 120 mg daily. My psa is 0.02 and I will ask for triplet therapy. Thanks

oldfords, my husband is similar to your scenario; diagnosed October 2023 and had to have emergency Lymph Node biopsy because he was so ill. Unfortunately he was positive for metastatic disease in his peritoneal nodes and also soon after in his bones. No prostatectomy. His psa was at 717 at time of the biopsy. He has not been informed of either low or high in the bones, only words used in PSMA Petscan report was "scattered in skeleton" with a few suv values between 2.00-3.00. Was never given a gleason score and we only were told 2 places that had an SUV value and have no idea where else the cancer was seen. Unfortunately it was a regular radiologist that did the PSMA Petscan and not a specialized radiologist oncologist. I have spend many many hours researching and following videos, conferences, blogs, etc to learn whatever we can learn. My husband has "Aphasia" from stroke from 12 years ago so he has difficulty with language and expression. He currently on Xtandi 80mg 2x for 4 months now and as of mid March PSA down to 0.04. Very fatigued but no pain with very sore breast. We have concerns of the toxicity of Xtandi and he has CKD stage IV (also heart issues). Oncologist has not provided any other plans at this time as his words to my husband "not curable but treatable and quality of life is important" . My husband did get one injection of Xgeva but unfortunately his calcium went way down to 7.2 and oncologist nurse told us to speak to Neuphrologist about advise so we jumped on the wagon and added Calcitrate Petites (500 iu Vit D, 400mg Calcium and increased prescribed Calcitriol 0.50mcg) and stopped the Xgeva injections. Oldfords, we totally understadd getting advise from others and also would like feedback. Thinking about adding Docetaxel but our impression is that his oncologist is following the prior years recommendations and just taking an observation stance until the next stage (his oncologist calls his MCSPC and next stage would be MCRPC) but we are not comfortable with waiting and staying on the Xtandi until his cancer gets worst. My understanding is that the new recommendations are to take an earlier aggressive approach in 2024. I had read that Darolutamide is less toxic on the kidneys and the heart. Should we do Docetaxel and localized radiation or just one treatment at a time? Hope we can both get feedback.

I am new here and thanks in advance to anyone reading and commenting. I am 77 years old and just got the news that I have osteoblastic metastatic disease. I guess I am somewhat lucky that it is not in any major organs, (heart, kidneys, liver or others). It also has not reached the bone morrow yet. I am just now being evaluated for treatment. They are looking at a three step approach, Lupron, Darolutamide, and Docetaxel. Has anyone else had this kind of treatment? I live in the Black Hills of South Dakota, so my options are not as great as if I was in a more populated location. Meantime stress and anxiety are trying to eat me alive. Thanks for reading and thanks for this forum.

You are right. Unfortunately, there are grey areas in prostate cancer treatment, as in any branch if science. New discoveries are made. Sometimes they create their own grey areas. According to practitioners who treat thousands of men every year for decades, triple does work. It works better than the studies indicate. Those necessary have limited time frame and parameters. But at the same time this form of treatment may not have been long enough, and widespread enough to provide the data for positive conclusion. For example, UK only approve of the use of triplet in 2022 or there abouts.
So when you press a doctor, he or she would just have to go back to what they learned at Med School.
On the other hand, it is the experience of practicing doctors that those who reach the PSA level < 0.1 is cured or in long term remission. But their opinion seems to be based on RT and Homo only.
What if the PSA falls below 0.1, or even 0.003 undetectable on triplet, without radiation or surgery? It seems even the doctors of the big clinics in USA has not yet come up with an answer. The presumption is they must be the same as the others. Who knows?
In some ways, that is where forum like this is most helpful. Apart from mutual encouragement, we have real examples of long term recovery, or perhaps even cure.
Sorry to get rather long winded, again! I am just another layman trying to make some sense of the whole thing.