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Living with metastic prostate cancer: Any positive stories to share?

Posted by olsente @olsente, Feb 17, 2023

Diagnosed with metastic prostrate cancer Nov17,2022, the cancer had already spread to my pelvic bone, lymph nodes , thoracic spine and throughout my bones fracturing 11 ribs, and to top it off 3 tumors in my head 1 of them behind my right eye causing vision problems. I started chemo Nov 28 ish , I’m on casodex and get the Lupron injection! My symptoms were back pain and I had seen multiple doctors through middle summer/fall! These doctors had me on physical therapy , accupuncture, 2 specialist stated I needed surgery on my back, they filled me with pain meds..not one doctor did series of blood test! Only test was an X-ray! My wife took me to mercy hospital Nov 11 in Buffalo because I was in so much pain and could barely walk. Within 4 hours in the ER the doctor told us they were quite sure I had cancer and would need to admit me run a lot of tests along with getting me healthy enough to go home.Sure shit I was admitted for 13 days,, then the day after my first chemo I ended up back in the hospital for 7 more days, I have had so many blood transfusion due to my counts being so low, a Foley catheter was put in me as well because I couldn’t urinate! I still have my catheter in and am doing my chemo! Does anyone have anything positive they can share with similarity!!! I am having my wife write this due to my vision

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olsente | @olsente | Feb 17, 2023

I forgot to add this was my 49 bday present😢

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2 replies
cynthiac | @cynthiac | Feb 17, 2023

Omgosh you poor thing. How horrible for you that you were misdiagnosed by so many doctors. That's just gut wrenching. I suppose they were either lazy or didn't think someone 49 would have prostate cancer. It breaks my heart to hear stories like yours. God bless you and your wife.

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cynthiac | @cynthiac | Feb 17, 2023
In reply to @olsente "I forgot to add this was my 49 bday present😢" + (show)
@olsente

I forgot to add this was my 49 bday present😢

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I'm here because my dad has prostate cancer that has spread. He beat it 15 years ago and has been cancer free until about 6 months ago when his numbers were high. He's 90yrs old and the doctor says any treatment would be too much for him. He also has a fair amount of dementia/alzheimers. So he's to go back in 4 months. I feel so helpless. He's started not wanting to get.out of bed. He still has an appetite and will get up to eat that's about it. It just so hopeless.

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1 reply
proftom2 | @proftom2 | Feb 18, 2023

They, primary care guys, there were many, lots of turnover in the practice, started me on watchful waiting at age 49. The wait ended when I was 67, 2.5 years ago. Like you I had back pain that became severe as time went on. Finally they caught he full thing, stage IV Prostate Cancer in the emergency room. Within days I was introduced to a new world of prostate cancer treatments. Bedridden for six months, radiation, chemo, hormone but things started to improve.

My friend, you can do this. Yes, I have stage IV prostate cancer, I learned to live with it. It's extremely hard to do. I am now a much better version of myself than I've ever been. Savor every moment of this incredible wonderful thing we call life.

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1 reply
rxharleydude | @rxharleydude | Feb 18, 2023
In reply to @olsente "I forgot to add this was my 49 bday present😢" + (show)
@olsente

I forgot to add this was my 49 bday present😢

Jump to this post

I just cannot believe that you had to go through all of this misdiagnosis, treatment etc., etc.! There is simply no excuse for what you are going through!
I am 83 years old and was diagnosed with metastatic prostate cancer 12 years ago as a patient at Mayo clinic. As a result of being properly diagnosed and treated over the past 12 years, I have been blessed with pretty much a normal life. I realize that the battle is far from over and that there will be difficult days ahead.
My prayers go up to you in the battles you will be facing. just try to hang in there and put your trust in God!

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2 replies
ringmastr1 | @ringmastr1 | Feb 19, 2023
In reply to @rxharleydude "I just cannot believe that you had to go through all of this misdiagnosis, treatment etc.,..." + (show)
@rxharleydude

I just cannot believe that you had to go through all of this misdiagnosis, treatment etc., etc.! There is simply no excuse for what you are going through!
I am 83 years old and was diagnosed with metastatic prostate cancer 12 years ago as a patient at Mayo clinic. As a result of being properly diagnosed and treated over the past 12 years, I have been blessed with pretty much a normal life. I realize that the battle is far from over and that there will be difficult days ahead.
My prayers go up to you in the battles you will be facing. just try to hang in there and put your trust in God!

Jump to this post

I was just diagnosed a with Stage 4 a few weeks ago. I'm 54. I am now taking Abiraterone and Prednisol. Next week I get my first shots of Xgeva and Lupron from my oncologist at Phelps in Westchester. What meds have you taken that have been so successful? I'm learning so much, so quickly about something I never expected

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4 replies
digger | @digger | Feb 19, 2023
In reply to @rxharleydude "I just cannot believe that you had to go through all of this misdiagnosis, treatment etc.,..." + (show)
@rxharleydude

I just cannot believe that you had to go through all of this misdiagnosis, treatment etc., etc.! There is simply no excuse for what you are going through!
I am 83 years old and was diagnosed with metastatic prostate cancer 12 years ago as a patient at Mayo clinic. As a result of being properly diagnosed and treated over the past 12 years, I have been blessed with pretty much a normal life. I realize that the battle is far from over and that there will be difficult days ahead.
My prayers go up to you in the battles you will be facing. just try to hang in there and put your trust in God!

Jump to this post

Hi I would love to hear your complete journey i to have stage four metatastic prostate cancer and one spot with aggressive prostate cancer on lupron had radiation,had chemo,now on Xofigo don’t no what’s next thanks good luck

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vjlvpjalways | @vjlvpjalways | Feb 19, 2023
In reply to @proftom2 "They, primary care guys, there were many, lots of turnover in the practice, started me on..." + (show)
@proftom2

They, primary care guys, there were many, lots of turnover in the practice, started me on watchful waiting at age 49. The wait ended when I was 67, 2.5 years ago. Like you I had back pain that became severe as time went on. Finally they caught he full thing, stage IV Prostate Cancer in the emergency room. Within days I was introduced to a new world of prostate cancer treatments. Bedridden for six months, radiation, chemo, hormone but things started to improve.

My friend, you can do this. Yes, I have stage IV prostate cancer, I learned to live with it. It's extremely hard to do. I am now a much better version of myself than I've ever been. Savor every moment of this incredible wonderful thing we call life.

Jump to this post

May l ask?
During your watchful waiting how often did you have PSA or Biopsy’s done?

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1 reply
melcanada | @melcanada | Feb 19, 2023

Zolodex injections and now just on Xtandi or Enzalutamide May get L2 radiated again MRIs next week

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proftom2 | @proftom2 | Feb 19, 2023
In reply to @vjlvpjalways "May l ask? During your watchful waiting how often did you have PSA or Biopsy’s done?" + (show)
@vjlvpjalways

May l ask?
During your watchful waiting how often did you have PSA or Biopsy’s done?

Jump to this post

Yes, annual PSA's for decades. Lots of DRE's. Only one biopsy.

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