1. < Prostate Cancer

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

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stevecando54 | @stevecando54 | Mar 22 5:15pm

I almost fell off my chair when the Dr. said stage 4 aggressive. My psa was at 932, I thought I missed a decimal point somewhere. We read it's not curable but my Dr said they can "control" it. All I can ask. I read on here one person at almost 10 years, another at 20 years with stage 4 prostate cancer. That is awesome news and very encouraging. That awful pain you mentioned, mine went away after starting treatment and has not come back. Dr says I'm finished chemo, for now. I understand I will have to keep changing treatment at some point but you hear all the time of new or different treatments. I try to keep smiling even when the day isn't so good. I wish all the best to all who are on this journey.

REPLY
melcanada | @melcanada | Jan 26 8:00am
In reply to @retireddoc "I, too, had triplet therapy and Radiation to isolated met to my lumbar spine and whole..." + (show)
@retireddoc

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.

Jump to this post

Googly Radium 233 and lu 177

REPLY
retireddoc | @retireddoc | Jan 26 7:48am
In reply to @retireddoc "They rely on the PSA to determine when to Image with PSMA PET. They told me..." + (show)
@retireddoc

They rely on the PSA to determine when to Image with PSMA PET. They told me they would wait until my PSA rose to 0.2 before they considered doing another PET From 0.2-0.5 PSA the PET is about 50-60% sensitive. Imaging below 0.2 likely won't show where the cancer is. There is a rare type of prostate cancer, neuroendocrine, that does not elevate the PSA so they do a bone scan and CT every year in the unlikely event that type of cancer is present.

Johns Hopkins (my MO) uses < 0.1 as undetectable. That is what Labcorp tests. They don't use the ultra sensitive PSA test. It is not as reliable at very small number and can fluctuate. Also, if you aren't going to Image or treat until it gets to 0.1, why do the test? I did get an ultra sensitive PSA performed at Emory (where I got my Radiation-they are close to where I live). It came back < 0.014 which is their undetectable number. It varies some by lab and institution.

My MO at JH is very experienced and is the Director of the Brady Urologic Cancer Research Center. He has written (or co-authored) around 500 articles) mostly on prostate cancer. With the rapidly changing treatment options, he believes in individualizing therapy. He believes in balancing quality of life. He has specific reasons for what he does and doesn't do. He doesn't follow a Standard of Care or protocol in the literature as it is changing so rapidly with new advances. Each person's case is different. Different age, Gleason score, stage of cancer, co morbidities, response to treatment etc. He did present me with the options of treatment. I asked "What do you recommend?". He told me and that is what I did.

Jump to this post

Just to add something. When I discovered my PSA had rapidly doubled in 4 months a year and a half ago, despite successful SBRT, I know I had new systemic disease and needed additional treatment. I did research and contacted Diane Reyes, NP for Ken Pienta, MO. They immediately scheduled a ZOOM consult and I sent them my pertinent information. Dr. Pienta gave me recommendations of several Caner Centers/individuals for treatment. I asked about him and MS Reyes. He said they would be glad to help me if that was my choice. A humble but confident physician. BTW, they said there was no charge for the consult as it was out of state ZOOM and they couldn't charge, yet they spent almost an hour with me. Circumstances may have changed. I immediately liked both of them and felt confident in their care.
My story.

REPLY
retireddoc | @retireddoc | Jan 26 7:21am

They rely on the PSA to determine when to Image with PSMA PET. They told me they would wait until my PSA rose to 0.2 before they considered doing another PET From 0.2-0.5 PSA the PET is about 50-60% sensitive. Imaging below 0.2 likely won't show where the cancer is. There is a rare type of prostate cancer, neuroendocrine, that does not elevate the PSA so they do a bone scan and CT every year in the unlikely event that type of cancer is present.

Johns Hopkins (my MO) uses < 0.1 as undetectable. That is what Labcorp tests. They don't use the ultra sensitive PSA test. It is not as reliable at very small number and can fluctuate. Also, if you aren't going to Image or treat until it gets to 0.1, why do the test? I did get an ultra sensitive PSA performed at Emory (where I got my Radiation-they are close to where I live). It came back < 0.014 which is their undetectable number. It varies some by lab and institution.

My MO at JH is very experienced and is the Director of the Brady Urologic Cancer Research Center. He has written (or co-authored) around 500 articles) mostly on prostate cancer. With the rapidly changing treatment options, he believes in individualizing therapy. He believes in balancing quality of life. He has specific reasons for what he does and doesn't do. He doesn't follow a Standard of Care or protocol in the literature as it is changing so rapidly with new advances. Each person's case is different. Different age, Gleason score, stage of cancer, co morbidities, response to treatment etc. He did present me with the options of treatment. I asked "What do you recommend?". He told me and that is what I did.

REPLY
1 reply
wellness100 | @wellness100 | Jan 26 6:42am
In reply to @retireddoc "I, too, had triplet therapy and Radiation to isolated met to my lumbar spine and whole..." + (show)
@retireddoc

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.

Jump to this post

Do you do scans regularly? And what do they mean by undetectable these days, at Johns or anywhere? At what level do they stop medication atJohns? Just curious.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

REPLY
retireddoc | @retireddoc | Jan 25 6:57am
In reply to @wooldridgec "Phil, I was diagnosed with stage 4 prostate cancer de novo July 27, 2022 - I..." + (show)
@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.

REPLY
2 replies
melcanada | @melcanada | Jan 25 6:39am
In reply to @wooldridgec "Phil, I was diagnosed with stage 4 prostate cancer de novo July 27, 2022 - I..." + (show)
@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 | @wooldridgec | Jan 24 9:18am

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
2 replies
melcanada | @melcanada | Jan 24 5:08am
In reply to @weakbutstrong "Dear Phil, I am about the same age as your father, but not as far along..." + (show)
@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
gregorylynn | @gregorylynn | Jan 23 8:34am

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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