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Prognosis for Stage 4 Metastatic Prostate Cancer
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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Phil my heart goes out to you.
The mds are hesitant because they genuinely don't know. The past statistical rate is 33% for five years, but present and advancing science gives a person untold prospect.
Best luck to you and your dad.
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5 ReactionsThank you very much for your kindness @gently. I am hoping for him to live as many years as possible, with perhaps more of an emphasis on quality over quantity. That is why I am asking honestly, because I want to make sure that we squeeze as much as we possibly can out of the time he has left.
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2 ReactionsMy heart goes out to both you and dad. Thank you for being there for dad. It, my cancer journey, improved. I still carry that "You can be treated, but never cured" comment my first oncologist made. Comments like that never go away. I changed how I carry it.
My days are much better now because of two things I learned after my year of suffering during intense treatments (Radiation, Chemo, ADT). Wellness and Quality of life. Strange to say but my days now, cancer and all, feel like I am living the best version of myself. Lots of exercise, nutrition, mindfulness practiced every day. Accompanied by intense gratitude and self-compassion. Hope is good friend, hope is very good.
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8 ReactionsThe treatment of advanced cancer seems very diverse, and probably properly so.
At some point, you may want to consult with a center of excellence, or even a different such facility.
My heart goes out to you, your father and all impacted.
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1 ReactionAny experience with Radium 233 appreciated and its OS stats
Sounds like your Dad was dealt a very poor hand. As psychologist, Carl Rogers said - "Success in life is learning how to play a poor hand well." Hope your dad is seeing Dr. Eugene Kwon at Mayo. He and his team have some 8,000 metastatic PC patients under treatment. Have you viewed Dr. Kwon's You Tube presentations. If not do so soon. Mayo Clinic is the best choice for treatment of metastatic PC.
My recurrence of took over 20 years and so far treatment with Lupron, Nebeqa, and two rounds of chemo seem to be working in resolution of four Stage 4 lesions with with one on bone. The drugs have caused pains primarily leg when lying down. A oncological pharmacist recommended I take anti-histamines. I take Claritin once daily and that has helped reduce the pain by more than 90%.
I also read the book How Not to Die and am following most of the recommendations in the book. In addition I'm working with a PhD Clinical Nutritionist and a resistance trainer. Also, believe our belief system is powerful and it is important for your Dad to have something important yet to do in his life. That could be as simple as mentoring his grandchildren. PC is variable and I wish your dad the best possible outcome. Bob
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2 ReactionsThere are other treatments if/when these stop working and more are in development. Was your husband tested for BRCA1 or BRCA2 genes? Finding out my husband was BRCA1 positive opened an entirely new avenue of treatment options.
My husband and I had a deal with his oncologist: tell us when there's no medical path forward. Until then, we keep fighting.
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1 ReactionI'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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6 ReactionsMy 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.
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9 ReactionsYour 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
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