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.

@redroadtraveler

My path was very similar to your father's - went from very healthy to (within a couple of months) stage IV prostate cancer, similar Gleason and off the chart PSA. It has since metastazide throughout my bones. I light up like a Christmas tree.

I am now eighty years old and four years into this journey. My treatments of Elegard, Keytruda, etc. have basically all run their course and are no longer effective. I opted to not have chemotherapy because it made no sense to me to kill off the good with the bad and hope that the good comes back faster than the bad.

I have just had my first treatment of Pluvecto, the latest version of radiation treatment, which does NOT work like chemotherapy but instead is targeted to the cancer cells. This treatment is a painless IV but it makes you radioactive for a while and you need to pretty much isolate and quarantine yourself for a week or so . Treatments are once every six weeks for a total of six times. I got through the isolation period ok with the biggest problem being boredom and constipation. My pain level has gone from a constant four to just mildly annoying and negligible, so I have to say that for me this treatment is working well.

Mental attitude, diet and continued exercise all play a major role in your well being. I also do non FDA approved energy healing with the spooky2 rife technology. I value quality of life over quantity of life.

The cancer has taken my strength and stamina levels down to maybe 20% of what they used to be, but other than that I feel relatively ok. Just can't do a whole lot and need to be very conscious of pacing myself in any physical activities.

Hope my experiences are helpful to you.

Jump to this post

About to start Radium 223 or Ogofigo Do you know how it compares to Lu 177 or Pluvecto other than fist is ever 4 weeks instead of ever 6 weeks

Also Spooky Rifle system looks like a scam when I search it

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@digger

Your story sounds just like mine I’ I had zovigo last winter,i get my 2 nd pluvicto on the 31 st so far so good zovigo was easy to take also I also lost my stanama I get tired easy I have to watch I don’t do anything physical because my bones can break easily I use to exercise 3 days a week now I’m afraid to because I might break something I have fractured vertebrae in my back and ribs it is a mess my spine dr said they will heal I can feel they r just don’t know how good,the spine dr said she had been doing this for 21 years and has never seen anyone as bad as me I was 6/1 now I’m 5/9 my disc and vertebrates have caused it,I’m lucky to be able to walk,I’m not complaining I know I’m never going to be any better than I am now I can accept that I’m still enjoying what life I have ,after pluvicto I don’t know how much longer I will be here they said I probably will not go back on chemo I had some breathing problems will on it ,I keep hoping for another drug when I’m done with this one,I hope I can work out again even if it’s a little I’m from Ohio in Florida for winter it might be my last one,I enjoy every day good luck keep fighting god bless Dave I’m going to be 70 in march

Jump to this post

About to start Radium 223 or Ogofigo Do you know how it compares to Lu 177 or Pluvecto other than fist is ever 4 weeks instead of ever 6 weeks

REPLY
@redroadtraveler

My path was very similar to your father's - went from very healthy to (within a couple of months) stage IV prostate cancer, similar Gleason and off the chart PSA. It has since metastazide throughout my bones. I light up like a Christmas tree.

I am now eighty years old and four years into this journey. My treatments of Elegard, Keytruda, etc. have basically all run their course and are no longer effective. I opted to not have chemotherapy because it made no sense to me to kill off the good with the bad and hope that the good comes back faster than the bad.

I have just had my first treatment of Pluvecto, the latest version of radiation treatment, which does NOT work like chemotherapy but instead is targeted to the cancer cells. This treatment is a painless IV but it makes you radioactive for a while and you need to pretty much isolate and quarantine yourself for a week or so . Treatments are once every six weeks for a total of six times. I got through the isolation period ok with the biggest problem being boredom and constipation. My pain level has gone from a constant four to just mildly annoying and negligible, so I have to say that for me this treatment is working well.

Mental attitude, diet and continued exercise all play a major role in your well being. I also do non FDA approved energy healing with the spooky2 rife technology. I value quality of life over quantity of life.

The cancer has taken my strength and stamina levels down to maybe 20% of what they used to be, but other than that I feel relatively ok. Just can't do a whole lot and need to be very conscious of pacing myself in any physical activities.

Hope my experiences are helpful to you.

Jump to this post

Wonderfully mindful Post Redroadtraveler. My take is the non FDA approved energy healing spooky2 provides us hope. We are both 4 year stage 4 quality of life over quantity of life guys. Which indicates to me we've learned how to listen to our bodies.

For me “It is not the length of life, but the depth” its Emerson quotes.

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Phil89: this video/webinar from nccn.org might give you some insight on advance prostate cancer as well as the importance of both types of genetic testing to formulate an attack plan.
https://www.nccn.org/patientresources/patient-resources/prostate-cancer-webinar

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Dear Phil,
I am about the same age as your father, but not as far along with cancer spreading and his pain levels, he has raised a good man in you. Perhaps you all may wish to research various clinical trials after having a face to face with his Doctor. God's Blessings and strength on all of you.

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Hi Phil,
I too, am 68 and have experienced much of what your father has. I have found that there will always be triggers that make a person concerned about their health and longevity. No matter how long you live with a possible life ending diagnosis, it will not get easier. The fight for life gets more intense internally. The doctors are limited as to what they can see in the future with any degree of certainty. It can get discouraging. Personally, I have found that I do have limits and as time goes on, quality of life gets to be a greater issue. The one thing that encourages me the most (other than my relationship with God) is that I have at least one person I can count on when I need help or am feeling low. Their ability to listen, not fix, is what is important to me. I do not need to be reminded by anyone that I am not going to live as long as I would like. It is interesting that there sometimes are no words that will sooth my situation and feelings. It may just be a person's presence that help me feel better. Do your best to be a good friend to your father for as long as it takes. And never forget, he may outlive you!

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@weakbutstrong

Dear Phil,
I am about the same age as your father, but not as far along with cancer spreading and his pain levels, he has raised a good man in you. Perhaps you all may wish to research various clinical trials after having a face to face with his Doctor. God's Blessings and strength on all of you.

Jump to this post

Radium 233 if in bones else lu 177

Precious blood of Jesus please heal me

REPLY

Phil,
I was diagnosed with stage 4 prostate cancer de novo July 27, 2022 - I am 61 years old now. I started out with terrible pain in my back that ultimately turned out to be from bone metastases in my spin and ribs. At first I thought it was my gall bladder and unaware I had cancer had emergency surgery to have it removed. After I was released from the hospital the pain in my back continued. It was the worst pain I had felt in my life and I could not sleep laying down. My doctors ordered an MRI which revealed bone metastases in my spin. Later a bone scan revealed bone metastases to my spin, ribs, and hips. The cancer only traveled to bone. Because the pain was so bad my Oncologist ordered palliative radiation to the spin (10 cycles) and ribs (5 cycles). I too did triplet therapy like your father: Eligard (ADT), Darolutamide, and 10 cycles of Chemotherapy (Docetaxel). My PSA initially dropped to 0.238 at the end of chemo and continued to drop after Chemotherapy. I am now undetectable. What I want to share with you is that after radiation I had no more pain and I still do not have any pain. I also think that me getting radiation first to bone metastases shrunk and damaged the DNA of the cancer cells. I believe the 10 cycles of Docetaxel Chemo did even more damage to the cancer and just knocked the hell out of the cancer. I was very aggressive in my treatment. I agreed to 10 cycles of chemo but had my doctors allowed it I would have done 12 cycles. My wife just found a study that shows Darolutamide continues to enhance the chemotherapy death cycle (apoptosis). That should encourage your father as well.

I am also getting Zometa infusions every month. After every infusion I experience some bone and muscle discomfort - not pain. During Chemo I ran to the ER worried the cancer was spreading because I felt some discomfort in my back - only to find out it was pain and discomfort from Zometa. Every time the CT scans came back stabilized metastatic disease. I did this 2 times and my doctor had to sit me down and tell me that not every pain is not from or is (in my case) from the cancer. Everyone with this disease is different and reacts differently to treatment. Regardless, every PSA check is stressful and scary for all of us. But I am encouraged your father received triplet therapy and responded well to the treatment. You should know, Men are living longer with the disease. Some do have more struggles if they have genetic or genomic markers (i.e., BRAC1 and BRAC2). Those of us that received triplet therapy based on the ARSENS trial are being watched closely - because there has been great success with triplet therapy. There is hope. Trust in Jesus.

As a final note my oncologist will not tell me how much time I have because she does not know. Everyone is different. Initially I did get a second opinion at Hopkins and that doctors said the average is 7 to 8 years but that does not mean I would die is 7 to 8 years. He said he many patients that have been living with stage 4 prostate cancer 10, 15, and 20+ years. He said this before triplet therapy was approved as the standard of treatment. So be encouraged.

REPLY
@wooldridgec

Phil,
I was diagnosed with stage 4 prostate cancer de novo July 27, 2022 - I am 61 years old now. I started out with terrible pain in my back that ultimately turned out to be from bone metastases in my spin and ribs. At first I thought it was my gall bladder and unaware I had cancer had emergency surgery to have it removed. After I was released from the hospital the pain in my back continued. It was the worst pain I had felt in my life and I could not sleep laying down. My doctors ordered an MRI which revealed bone metastases in my spin. Later a bone scan revealed bone metastases to my spin, ribs, and hips. The cancer only traveled to bone. Because the pain was so bad my Oncologist ordered palliative radiation to the spin (10 cycles) and ribs (5 cycles). I too did triplet therapy like your father: Eligard (ADT), Darolutamide, and 10 cycles of Chemotherapy (Docetaxel). My PSA initially dropped to 0.238 at the end of chemo and continued to drop after Chemotherapy. I am now undetectable. What I want to share with you is that after radiation I had no more pain and I still do not have any pain. I also think that me getting radiation first to bone metastases shrunk and damaged the DNA of the cancer cells. I believe the 10 cycles of Docetaxel Chemo did even more damage to the cancer and just knocked the hell out of the cancer. I was very aggressive in my treatment. I agreed to 10 cycles of chemo but had my doctors allowed it I would have done 12 cycles. My wife just found a study that shows Darolutamide continues to enhance the chemotherapy death cycle (apoptosis). That should encourage your father as well.

I am also getting Zometa infusions every month. After every infusion I experience some bone and muscle discomfort - not pain. During Chemo I ran to the ER worried the cancer was spreading because I felt some discomfort in my back - only to find out it was pain and discomfort from Zometa. Every time the CT scans came back stabilized metastatic disease. I did this 2 times and my doctor had to sit me down and tell me that not every pain is not from or is (in my case) from the cancer. Everyone with this disease is different and reacts differently to treatment. Regardless, every PSA check is stressful and scary for all of us. But I am encouraged your father received triplet therapy and responded well to the treatment. You should know, Men are living longer with the disease. Some do have more struggles if they have genetic or genomic markers (i.e., BRAC1 and BRAC2). Those of us that received triplet therapy based on the ARSENS trial are being watched closely - because there has been great success with triplet therapy. There is hope. Trust in Jesus.

As a final note my oncologist will not tell me how much time I have because she does not know. Everyone is different. Initially I did get a second opinion at Hopkins and that doctors said the average is 7 to 8 years but that does not mean I would die is 7 to 8 years. He said he many patients that have been living with stage 4 prostate cancer 10, 15, and 20+ years. He said this before triplet therapy was approved as the standard of treatment. So be encouraged.

Jump to this post

Look at Radium 233

One minute injection 4 weeks targets cancer only no hair loss minimal side effects

If out side bones lu 177

REPLY
@wooldridgec

Phil,
I was diagnosed with stage 4 prostate cancer de novo July 27, 2022 - I am 61 years old now. I started out with terrible pain in my back that ultimately turned out to be from bone metastases in my spin and ribs. At first I thought it was my gall bladder and unaware I had cancer had emergency surgery to have it removed. After I was released from the hospital the pain in my back continued. It was the worst pain I had felt in my life and I could not sleep laying down. My doctors ordered an MRI which revealed bone metastases in my spin. Later a bone scan revealed bone metastases to my spin, ribs, and hips. The cancer only traveled to bone. Because the pain was so bad my Oncologist ordered palliative radiation to the spin (10 cycles) and ribs (5 cycles). I too did triplet therapy like your father: Eligard (ADT), Darolutamide, and 10 cycles of Chemotherapy (Docetaxel). My PSA initially dropped to 0.238 at the end of chemo and continued to drop after Chemotherapy. I am now undetectable. What I want to share with you is that after radiation I had no more pain and I still do not have any pain. I also think that me getting radiation first to bone metastases shrunk and damaged the DNA of the cancer cells. I believe the 10 cycles of Docetaxel Chemo did even more damage to the cancer and just knocked the hell out of the cancer. I was very aggressive in my treatment. I agreed to 10 cycles of chemo but had my doctors allowed it I would have done 12 cycles. My wife just found a study that shows Darolutamide continues to enhance the chemotherapy death cycle (apoptosis). That should encourage your father as well.

I am also getting Zometa infusions every month. After every infusion I experience some bone and muscle discomfort - not pain. During Chemo I ran to the ER worried the cancer was spreading because I felt some discomfort in my back - only to find out it was pain and discomfort from Zometa. Every time the CT scans came back stabilized metastatic disease. I did this 2 times and my doctor had to sit me down and tell me that not every pain is not from or is (in my case) from the cancer. Everyone with this disease is different and reacts differently to treatment. Regardless, every PSA check is stressful and scary for all of us. But I am encouraged your father received triplet therapy and responded well to the treatment. You should know, Men are living longer with the disease. Some do have more struggles if they have genetic or genomic markers (i.e., BRAC1 and BRAC2). Those of us that received triplet therapy based on the ARSENS trial are being watched closely - because there has been great success with triplet therapy. There is hope. Trust in Jesus.

As a final note my oncologist will not tell me how much time I have because she does not know. Everyone is different. Initially I did get a second opinion at Hopkins and that doctors said the average is 7 to 8 years but that does not mean I would die is 7 to 8 years. He said he many patients that have been living with stage 4 prostate cancer 10, 15, and 20+ years. He said this before triplet therapy was approved as the standard of treatment. So be encouraged.

Jump to this post

I, too, had triplet therapy and Radiation to isolated met to my lumbar spine and whole pelvic radiation as well. After second chemo treatment over a year ago my PSA became undetectable. Now off all medications. Monitoring PSA and testosterone.
The diagnosis is obviously anxiety provoking to me and anyone with this disease. I was treated at Johns Hopkins with the Radiation Therapy at Emory. My very experienced MO at Hopkins said I have 5 years for sure but he didn't know about 10. He is honest and blunt. However, I am hopeful about the longer term outlook. Should my PSA go up and PSMA PET reveal another met or 2, the plan is to use SBRT to kill the tumor and perhaps a short (3 month) term course of ADT. As the treatment is progressing at such a rapid rate, there really is no definitive SOC and that is why I wanted an experienced MO with prostate specialization directing my care. I want aggressive treatment but I also want quality of life.
Good luck to you and all on this going through this journey.

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