Prognosis for Stage 4 Metastatic Prostate Cancer

Posted by phil89 @phil89, Jan 16 1:08pm

Good afternoon, and thank you to any one in advance who is reading this and is able to offer any insight/similarities with their journey.

My dad (68 yrs) started experiencing crippling pain in his back this past May, that led to him being almost completely immobile. He was ultimately diagnosed with Stage 4 metastatic/advanced prostate cancer, with metastases to his pelvic and abdominal lymph nodes, as well as to his bones. His Gleason score was 9 at the time of his biopsy, and his PSA level was 800 ng/ml.

For treatment, he has received a total of three shots of Luteinizing hormone–releasing hormone (LHRH) which he will receive indefinitely, is presently taking Darolutamide (Nubeqa), and underwent 6 cycles of chemotherapy (Docetaxel) which he completed in December. They did a round of scans halfway through his chemo and told us that although the cancer seemed to be responding to the treatment (thank goodness!), it was incurable and will eventually find its way around the Darolutamide, hormone therapy and chemo. After chemo my dad's paralyzing pain was reduced to what he described as mild discomfort, which was a huge relief. His PSA settled at 5 ng/ml in the end.

About a week ago, my dad sat me down and said that he did not want to worry me, but admitted that pain seems to be coming back in a way that is progressive and more continuous. He is really worried he is going backwards, but this has not yet been confirmed and for now we are just trying to manage the pain. He has another round of scans (CT, bone scan and blood work) scheduled for next week, and now I am feeling concerned with what they may find.

I am not really sure what to ask, or how to ask, but I am just wondering if there is anyone who can give me some insight on whether they have had a similar experience with pain returning after chemotherapy, and how they managed it.

Finally, my dad's oncologist has been hesitant to offer my dad an honest prognosis, and just keeps saying "it depends". My dad is 68, and does have a history of congestive heart failure (2017), but is healthy otherwise (no diabetes, not overweight, gave up smoking 20 years ago). I know it may potentially be difficult news, but would anyone looking at the information I provided be able to let me know honestly what they think his chances are at living another 5 years or more?

Thank you again, Phil

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

Colleen Young, Connect Director | @colleenyoung | Apr 12 3:46pm

In reply to @mscarepartner "oldfords, my husband is similar to your scenario; diagnosed October 2023 and had to have emergency..." + (show)

@mscarepartner

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.

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@mscarepartner, you sound like someone who finds power in knowledge and is very thorough in finding information.
Here's a discussion that you might be interested in

- Advanced prostate cancer: Anybody on Docetaxel chemotherapy ?
https://connect.mayoclinic.org/discussion/advanced-prostate-cancer/

Active surveillance is the term I prefer to use rather than watch and wait. Watch and wait sounds like inactivity and merely waiting for doom, whereas active surveillance is proactive, monitoring for when and if it is time for additional treatment. Do you and your husband also have a palliative care team?

wellness100 | @wellness100 | Apr 12 10:56pm

In reply to @starman "I like where you’re going with this. Presently I’m stage 4 on Lupron X4 months and..." + (show)

Are you sure you need to go on triplet now? The general knowledge at PSA < 0.1, 99% of the cancer cell is gone. Some even venture to say that 99% plus, ie 99.99% is either dead or dormant. It is questionable if adding chemo would do anything. If your PSA is still falling, your doctor would likely to keep you on hormo until it reaches the 'nadir'. That is when it is stable at some level below 0.1. Then he/she may recommend reduction on hormo, either dosage or eliminate altogether.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

retireddoc | @retireddoc | Apr 13 5:14am

In reply to @marciandpaul "Hello. My husband was diagnosed in 2021. He was 52 at the time of diagnosis. He..." + (show)

@marciandpaul

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.

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My thoughts and prayers are with you both. Yes, enjoy the day. I agree.

stevecando54 | @stevecando54 | Apr 13 5:49am

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.

northoftheborder | @northoftheborder | Apr 13 6:51am

There are many paths that stage-4 prostate cancer can follow. Be ready for the worst, but don't assume it's inevitable. They're still collecting data on new approaches and treatments that have arrived over the past 5–7 years, and don't fully know the long-term outlook yet.

My prostate cancer had also metastasied to my spine when it was detected at age 56 (though that was my only metastasis). It was literally "crippling," in that it left me paralysed from the ribs down.

I had debulking surgery on the spinal lesion, and radiation to there and the prostate. I'm on ADT and an androgen-reception inhibitor (Erleada/Apalutamide).

Because I'm in a study, I get a lot of tests every three months (more than usual). 2½ years in, there has been no progession — my PSA remains undetectable — and while there's permanent nerve damage from the spinal compression, I'm active again, and feeling better and happier every month.

*Do* try to get connected to a cancer centre with research oncologists — that makes a huge difference. An individual urologist, for example, however well-intentioned, might still be attached to what they were doing 10–20 years ago, when the outlook for stage 4 PC was very different.

Here in Canada, I'm a patient of a Cancer Centre associated with a major research university, and it's made a world of difference. In the US, the equivalent would be somewhere like the Mayo Clinic or Johns Hopkins, I think (though I'm sure there are many less-famous but equally-good options).

melcanada | @melcanada | Apr 13 6:52am

In reply to @wooldridgec "Yes. I have had that treatment (triplet therapy). I have high volume de novo stage 4..." + (show)

@wooldridgec

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.

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Very similar path I have mets in bones only so they skipped chemo and I qualified for Radium 223 or Xofigio Google that Also get Xgeva injection 12 weeks and Zolodex Take 600 gms of calcium daily a mist to replace bone where cancer only is killed by Radium 223
Lu 177 is similar injection but for cancer more that just bone It may become standard of care over chemo
BTW was on Xtandi or Enzalutamide for a year but PSA went to 9.8

pray 80 and doing fine since 2017 radiation of prostate

northoftheborder | @northoftheborder | Apr 13 7:08am

In reply to @stevecando54 "I'm afraid to ask my dr. for "how long". Actually I don't ask too many questions...." + (show)

I did ask "how long" when I found out about my oligometastatic prostate cancer. The initial answer was that it's typically around 4–5 years, but because I was young (56 at the time) and relatively healthy otherwise, possibly 6–7 years.

Now, 2½ years later, they're not setting an upper limit any more, and saying it might be 10+ years before I need any additional treatment (like chemo), although I know there are no guarantees, and I'm always just one blood test away from bad news.

They're still collecting long-term data on newer treatments and approaches not, so the real answer is that they just don't know yet.

wooldridgec | @wooldridgec | Apr 13 7:49am

In reply to @northoftheborder "I did ask "how long" when I found out about my oligometastatic prostate cancer. The initial..." + (show)

I went for a second opinion at Johns Hopkins and that doctors said the average was 7 years. He then said, but that does not at 7 years people die, rather they are still alive and might start having issues again. That was before triplet therapy was adopted as the standard of care. Remember, that the stats on the internet are mostly based on the SEERS data which is mostly just ADT and gave stage 4 prostate cancer patient 1-3 years. My doctors immediately refuted that data as old and out dated based on advanced with treating stage 4 prostate cancer in the last 6 years. That was stated in year 2022. I was told not to consider that data and that they could hopefully just treat my disease as chronic illness and that living with this disease and dying of something else is more probable. Again, everyone is different and responds differently to treatment. Some people never achieve undetectable PSA and the stats are different for those individuals. But I speak to many men that have been fighting this disease for 8+ years and their PSA is like 50. So, I think it depends on how well the cancer is controlled. I asked for Radium 227 but my doctor said Radium 227 is reserved for Castrate Resistant patients. So, I hope I never need Radium 227 and remain castrate sensitive for many many years. On another note, I recently joined a clinical study that does a different kind of genetic/genomic testing for mutations. It was a saliva test. Mine came back with nothing again. I previously had genetic and genomic blood testing and all came back negative for any known mutations (i.e., BRAC1, BRAC2 etc). Lastly, my Nurse Practitioner that exclusively works with cancer patients that I see at the Life With Cancer group says that 10-15% of people with stage prostate cancer and some other cancers - the cancer never returns. Let us pray we are in that group. God Bless everyone - stay string, stay positive. Have a purpose to live and fight. For anyone struggling, I pray the cancer stands down and dies from any treatment you may be facing. Die cancer die!!!!

drmccoyce | @drmccoyce | Apr 14 2:51am

I am about to be 77 in a few months!
Have been dealing with prostate treatment since 2012, 45 rounds of radiation and Lupron injections. 2021, my PSA begin to start increasing, my Oncologist who has been treating me since 2012, he did biopsies and found nothing, we waited a few months, checking each month, my PSA continued to rise, after a couple months, I received an emergency call and was scheduled for Hemotology, had several body scans, brain scans. Cancer had spread up the left side of my body to my head, fortunately had not touched my brain. Consultation resulted in me having to choose an oral treatment that I take myself at home: Abiraterone 1000mg daily and Prednisone 5mg daily everyday, can’t miss a day. I’m still taking Lupron injections every six months: side effects are fatigue, like of engery, weakness mostly. The Abiraterone meds spikes blood pressure, therefore I had to began blood pressure meds. These meds have benefited me tremendously. There are occasional dizziness or light headed side effect, but nothing serious. It is suggested to take theses meds during wee wee hours to minimize discomfort. If the meds are difficult to tolerate you can request a decrease in strength. After three months of being on 1000mg of Aberiterone, it was working so well, my request to decrease to 750mg was agreeable. My PSA went from 356 to 38.6 in three months. I have been diagnosed as Stage IV Prostate Cancer, metastasis incurable. Your Dad can benefit from the proper treatment.

gently | @gently | Apr 14 3:30am

Phil, you might set up a phone consult with Rossi at California Proton.

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