Symptoms of final days of metastatic prostate bone cancer

Posted by dsle @dsle, Sep 17, 2023

Wanting to know what symptoms are at near death. I'm wanting to know, so I have a better idea when death will occur. What to expect, personally I'm a realistic in my expectations. I know that this questions will be difficult for surviving family. All info greatly appreciated thank you !!!!!!

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@robert570

I have Stage 4 aggresive prostate cancer with metastatic bone cancer and I don't want to know from anyone including the doctor when they think you are in the final stages. It's not 100% accurate it has no meaning to me. It doesn't exist in my mind. I have had radiation and robotic surgery to remove my prostate and any type of treatment available. Some have worked and others have not. I have accepted this as a chronic condition that I will have to deal with the rest of my life and it's not a death sentence. This fall I'm going on my 10th year of this disease and am looking forward to getting better in 2024. I'm 62 years old now and will NEVER accept anyone telling me it's over. Good luck and never accept defeat.

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Way to go! Never accept defeat!

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I think your question is quite reasonable. There are two types of people (in so many ways!), those who want to know what's coming in order to better prepare and those who want to avoid thinking about it as long as possible. My sister has brain cancer, which kills people a lot quicker than PC, and her husband was quite thankful to get a link like https://bkbooks.com/products/end-of-life-guideline-series-a-compilation-of-barbara-karnes-booklets. I guess that puts him in the first group. One way it might help is knowing that some things are NOT the end :-).
If you check out the above resource, you will notice it is not cause specific. One reason is that at the end of life, when everything starts shutting down, the original cause may fade into the background. Another might be that it is hard to collect cause-specific information as death approaches, because all the relevant medical resources are focused on avoiding this, not engaging it and researching it.
Based on my experience as a family member and caregiver alongside the dying, I would say that you may find your "medical team" disengaging as one of the signs that death is approaching. I can understand this although I do not appreciate it. Hospice care has found its niche by stepping into this gap.
Another resource people have found helpful is https://atulgawande.com/book/being-mortal/. One of Gawande's insights is that the time comes when having the best today is more appropriate and important than maximizing the number of tomorrows (my phrasing, not his.)

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@robert570

I have Stage 4 aggresive prostate cancer with metastatic bone cancer and I don't want to know from anyone including the doctor when they think you are in the final stages. It's not 100% accurate it has no meaning to me. It doesn't exist in my mind. I have had radiation and robotic surgery to remove my prostate and any type of treatment available. Some have worked and others have not. I have accepted this as a chronic condition that I will have to deal with the rest of my life and it's not a death sentence. This fall I'm going on my 10th year of this disease and am looking forward to getting better in 2024. I'm 62 years old now and will NEVER accept anyone telling me it's over. Good luck and never accept defeat.

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@robert570 My uncle is also suffering from stage 4 mestatic prostate cancer.He is currently undergoing chemo therapy.Could you please help with treatment that worked for you.

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2018 I had Doxetel which worked well. Fast forward to 2022-23, Jevtana along with Prednisone. Jevtana targets prostate cancer cells only. Jevtana is a bit less invasive, while Doxetel in some people is harsher. I did well with both.

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@robert570

2018 I had Doxetel which worked well. Fast forward to 2022-23, Jevtana along with Prednisone. Jevtana targets prostate cancer cells only. Jevtana is a bit less invasive, while Doxetel in some people is harsher. I did well with both.

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Were you treated at Mayo? May I ask who your oncologist is? Also was it actually in your bones? Your experience is really hopeful for us. 2018-2023 sounds like a dream come true.

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I was diagnosed with prostate cancer in the fall of 2013. I had a prosectomy in 2014. Ive had bone mets for about 10 years. Back of my neck and the middle of my back, with spots on my rib cage. They have been contained. I'm being treated locally in Warren Ohio at St. Joseph Cancer Center. Just a small town oncologist on staff from Boardman, Ohio. His name is Dr. Chahine. I also was treated by a doctor which works with both University Hospital in Cleveland and the Cleveland Clinic. I had Pluvicto there which failed. They didn't offer that treatment in Warren. All I can say is my strong will and great attitude keeps me going. We have a good network of doctors here in northeast Ohio, which consult with each other. We are known for fine health care. As you probably know, the Cleveland Clinic ranks near the top in the nation for health care and that's only 50 miles from me. They have thrown everything but the kitchen sink at me. As long as your doctors do research and consult with others, I don't think it matters whete your at. Stay positive and good luck.

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@robert570

I was diagnosed with prostate cancer in the fall of 2013. I had a prosectomy in 2014. Ive had bone mets for about 10 years. Back of my neck and the middle of my back, with spots on my rib cage. They have been contained. I'm being treated locally in Warren Ohio at St. Joseph Cancer Center. Just a small town oncologist on staff from Boardman, Ohio. His name is Dr. Chahine. I also was treated by a doctor which works with both University Hospital in Cleveland and the Cleveland Clinic. I had Pluvicto there which failed. They didn't offer that treatment in Warren. All I can say is my strong will and great attitude keeps me going. We have a good network of doctors here in northeast Ohio, which consult with each other. We are known for fine health care. As you probably know, the Cleveland Clinic ranks near the top in the nation for health care and that's only 50 miles from me. They have thrown everything but the kitchen sink at me. As long as your doctors do research and consult with others, I don't think it matters whete your at. Stay positive and good luck.

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Your experience is wonderful to hear about. It really offers hope. Can you tell me what has been done, what are you taking, to contain the mets? My husband, 73, was diagnosed with PC about 4 months ago. He was told it was contained and low-level, so active surveillance was recommended. At a very recent PSA test, his numbers had shot up significantly. A psma test showed spread to 3 bone locations (skull, L5 and hip). He was given Orgovix 2 weeks ago and Eleada, which he just began. The plan is to radiate the L5 mets now, and continue the 2 pills for 3 months, then radiate the prostate, with 5 doses over 2 weeks.
Currently he’s having a lot of pain and difficulty urinating, even though he has frequent urges. These feelings are not among the expected side effects of either drug. If this continues I don’t know how he can cope with 3 months of it.
So, that is why I’m asking what has had your mets contained? And wishing you many more good years of containment! Thanks in advance for any information.

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@robert570

I have Stage 4 aggresive prostate cancer with metastatic bone cancer and I don't want to know from anyone including the doctor when they think you are in the final stages. It's not 100% accurate it has no meaning to me. It doesn't exist in my mind. I have had radiation and robotic surgery to remove my prostate and any type of treatment available. Some have worked and others have not. I have accepted this as a chronic condition that I will have to deal with the rest of my life and it's not a death sentence. This fall I'm going on my 10th year of this disease and am looking forward to getting better in 2024. I'm 62 years old now and will NEVER accept anyone telling me it's over. Good luck and never accept defeat.

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Are you saying you currently have metastatic bone cancer from prostate and have lived with it for 10years!

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@darylhall

Are you saying you currently have metastatic bone cancer from prostate and have lived with it for 10years!

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Yes, 10 years this past fall. Summary of treatments: Prosectomy, Radiation, Provenge Treatment, Docetaxel chemo, lupron Depot, abiraterone acetate with Prednisone, Xtandi, Jevtana chemo with Prednisone, Pluvicto, back to Jevtana and Prednisone currently. Xjeva for the bones, Numerous bone scans bone mets involving the iliac, right & left ribcage, back of the neck and on the spine in the middle of my back. Stage 4, Metastatic
castration -resistant prostate cancer with minimal pain thanks to Percocet, which some days I don't need. It sounds horrible but the thing I suffer the most from is fatigue.

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@catbuddy

Your experience is wonderful to hear about. It really offers hope. Can you tell me what has been done, what are you taking, to contain the mets? My husband, 73, was diagnosed with PC about 4 months ago. He was told it was contained and low-level, so active surveillance was recommended. At a very recent PSA test, his numbers had shot up significantly. A psma test showed spread to 3 bone locations (skull, L5 and hip). He was given Orgovix 2 weeks ago and Eleada, which he just began. The plan is to radiate the L5 mets now, and continue the 2 pills for 3 months, then radiate the prostate, with 5 doses over 2 weeks.
Currently he’s having a lot of pain and difficulty urinating, even though he has frequent urges. These feelings are not among the expected side effects of either drug. If this continues I don’t know how he can cope with 3 months of it.
So, that is why I’m asking what has had your mets contained? And wishing you many more good years of containment! Thanks in advance for any information.

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An update on my husband’s painful, frequent and uncontrollable urination: it turns out he had a urinary tract infection, for which he was given a strong 2-week antibiotic. He’s over it now and no more of those symptoms. His PSA has finally dropped and appears to continue to drop. We can thank his primary care doc for figuring it out and for vigilance in testing and re-testing. No other doc had anything useful to offer. My husband is back on track for treatment—had his simulation yesterday for the first radiation, on L5 bone.

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