1. < Prostate Cancer

Prognosis for Stage 4 Metastatic Prostate Cancer

Posted by phil89 @phil89, Jan 16, 2024

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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melcanada | @melcanada | Jan 24, 2024
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, 2024

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!

REPLY
weakbutstrong | @weakbutstrong | Jan 22, 2024

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.

REPLY
1 reply
bens1 | @bens1 | Jan 21, 2024

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

REPLY
proftom2 | @proftom2 | Jan 21, 2024
In reply to @redroadtraveler "My path was very similar to your father's - went from very healthy to (within a..." + (show)
@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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melcanada | @melcanada | Jan 21, 2024
In reply to @digger "Your story sounds just like mine I’ I had zovigo last winter,i get my 2 nd..." + (show)
@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
melcanada | @melcanada | Jan 21, 2024
In reply to @redroadtraveler "My path was very similar to your father's - went from very healthy to (within a..." + (show)
@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

REPLY
digger | @digger | Jan 20, 2024
In reply to @redroadtraveler "My path was very similar to your father's - went from very healthy to (within a..." + (show)
@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

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

REPLY
2 replies
redroadtraveler | @redroadtraveler | Jan 20, 2024

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.

REPLY
3 replies
samidh | @samidh | Jan 20, 2024

I've been a member of this group for over a year now, witnessing numerous instances where metastasis to multiple regions has occurred, with cases involving Grade 4 cancers and Gleason in the 8s and 9s. Surprisingly, some individuals are still actively participating in the forum despite having battled cancer for several years. As you mentioned in a previous post, maintaining a delicate equilibrium between the quality and quantity of life is paramount. These are undoubtedly challenging times for you, but as a fellow sufferer, I can only say chin up.

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