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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@oldfords

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.

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FIND Xofigio or Radium 223 It will save you and stop the stress Mel

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@melcanada

URGENT I am on Zolodex every 12 weeks to reduce testosterone the fertilizer of pc
When cancer went to bones they radiated 1 inch out of L2 lumbar in 2020 Then put me on Xtandi or Enzalutamide which lasted a year keeping my PSA down to 1.7 It rose to 9.8 so takenOFF of Xtandi which fails after a year
They were going to start Chemo docetaxel when I went to PMH Princess Margaret Hospital and said NO
As its only in bones you qualify for Radium 223 or Xofigio which targets only cancer cells in bones and kills them and only the cancer cells No hair loss just a tad tired and occasional pooping One 3 minute injection in vein every 4 weeks for 6 months then another bone scan My local Mississauga hospital does it every Wed for me so no travel to Toronto Its all covered by healthcare I am 79 Had prostate radiated out in 2017 It came back 4 yrs later
They also include a 12 week needle injection of Xgeva that puts calcium from the blood back into the bones I take 600 mg of calcium with D and K pills from pharmacy as well as 2 apple cider vinegar gummies daily
GOOGLE all these names
Stop chemo get immediately on Xofigio. Lu 177 is still clinical trials but its for cancer that has spread outside the bones Radium 223 is for bone only which you have
Find Xofigio support from a oncologist Save yourself I am on 4th injection Feel great.

c

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Thanks for the response. I will look into this and speak with my doctor about R233. At this point I am looking for anything that will offer a little hope.

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Zofigio https://www.drugs.com/xofigo.html

Read The OS today is far longer before chemo being needed or LU 177 radium

OS Overall survival I hear is 31 months

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@melcanada

URGENT I am on Zolodex every 12 weeks to reduce testosterone the fertilizer of pc
When cancer went to bones they radiated 1 inch out of L2 lumbar in 2020 Then put me on Xtandi or Enzalutamide which lasted a year keeping my PSA down to 1.7 It rose to 9.8 so takenOFF of Xtandi which fails after a year
They were going to start Chemo docetaxel when I went to PMH Princess Margaret Hospital and said NO
As its only in bones you qualify for Radium 223 or Xofigio which targets only cancer cells in bones and kills them and only the cancer cells No hair loss just a tad tired and occasional pooping One 3 minute injection in vein every 4 weeks for 6 months then another bone scan My local Mississauga hospital does it every Wed for me so no travel to Toronto Its all covered by healthcare I am 79 Had prostate radiated out in 2017 It came back 4 yrs later
They also include a 12 week needle injection of Xgeva that puts calcium from the blood back into the bones I take 600 mg of calcium with D and K pills from pharmacy as well as 2 apple cider vinegar gummies daily
GOOGLE all these names
Stop chemo get immediately on Xofigio. Lu 177 is still clinical trials but its for cancer that has spread outside the bones Radium 223 is for bone only which you have
Find Xofigio support from a oncologist Save yourself I am on 4th injection Feel great.

c

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Lutetium 177 is now available to patients outside clinical trials, at least in the U.S. It is marketed as Pluvicto, and deals with metastases on the spine and other bones as well as elsewhere. Many people on Mayo Connect are discussing Pluvicto. If you are in South Dakota, oldfords, you could easily get to Mayo Rochester if there is no one closer to you. Do a search on "Pluvicto" in Mayo Connect and you can read these discussions.

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Get a comparison of Lu 177 to Radium 223 with OS overall survival statistics

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@oldfords

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.

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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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I hope we can both get some good solid advice quickly. I don't have any underlying issue, so maybe that is in my favor. They said that it has not entered any major organs of the blood morrow yet, so maybe I can stop it before it does. Thanks for your response.

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@oldfords

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.

Jump to this post

I am now 71 years old and had this "triplet" therapy last year at Johns Hopkins. I had metastatic prostate cancer to a single vertebral body and a lymph node in my pelvis on PSMA PET. In all likelihood it had spread elsewhere but was too small to see. After the second Chemo treatment my PSA became undetectable and has remained so for more than a year.
The chemo caused some hair loss but it came back after a half year. I have had the usual side effects from the Lupron-fatigue, hot flashes, some muscle loss etc but it is manageable.
I am not sure you would get any different treatment if you lived in Boston or New York. It woulds like you are getting pretty much state-of-the-art treatment from the little you have stated.
Good luck to you and God Bless.

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Thank you for responding. It is great to hear from someone who has had this treatment. I don't know what test you had but mine went like this. PSA started rising so a biopsy was done. Showed nothing. A full body bone scan, again nothing. The Dr decided to wait 6 months and see what happened. PSA went to 252 so I did a PET-CT which showed my problem. Widespread metastatic disease. So now am going to start the treatments. Thanks for telling me that the issues with the treatment are manageable. It is good to hear even a little good news.

thank you al

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Phil -
I applaud you for being actively involved in the journey with your father.
I am in the same position as your father and I am 69. Of course, at Mayo your father has a team of doctors behind him, which is great. But...I caution you about your request to know about how long he may live. I pushed that issue until I got an answer from the medical oncologist. It changed my life, and not necessarily for the better. True, no one really knows for sure, but the doctors at Mayo are some of the best in the world and are very experienced. So, it is also logical that they do have some ideas about length of life. For me, I was told that chemo was the last option and that after that, life would be short. I was told I might live 5 years. Well, it has been about 3 years and things have progressively gotten worse. Today, I wish that I had never asked "the question." While there are many reasons, having an "end date" has put an enormous amount of pressure on myself. That pressure has gotten in the way of life and relationships. I encourage all who reads this, to think carefully before asking "the question." Be thankful for each day, live each day as it was your last, and draw close to your creator for needed comfort.

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