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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@chipe

Just a question as I know I am late to the conversation: have you considered going to Roswell?

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Yes , the flying saucer museum there is really cool.

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@ecurb

Yes , the flying saucer museum there is really cool.

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🙂

Roswell Cancer Institute, Buffalo, NY

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@chipe

🙂

Roswell Cancer Institute, Buffalo, NY

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Ooops. Sorry. My aunt lives in Batavia , nearby. Take care like I m doing too with PCa.

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@ckingbachelor

I have no pain and the Lupron has reduced my PSA to .0001. All that I have read says no radiation until I have pain in my L4 or L5. I see my urologist in April. The oncologist wanted to start radiation. I am just going to wait and see. My prostrate was removed in 2012.

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Ok look at geting one radiated I did L 2 took out 1 inch

Did Xtandi, Xofigio and 2 chemos

Got fluid on lungs plus PSA flair google that

Get Xgeva infusions and 600mg Cal daily plus K2 + D3 combo cosco

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My story is very similar. I was diagnosed July 27th 2022 with metastatic prostate cancer that traveled to my spin, ribs, hips, scapula, clavicle, femurs, and skull. I too kept going to doctors with intense pain in my back. I could not sleep on my back for 2 months. The doctors said it was my Gall Bladder and on July 8th 2022 I had emergency surgery to have it removed. There was no cancer in the Gall Bladder nor detected anywhere else at that time. I got home believing the pain would be gone and I could move on with my life. The pain continued. I then got an MRI and it showed bone metastases throughout my my spin. Horrified, I went back to the ER and was admitted. Additional blood tests reveal a PSA of 32 and Alkaline Phosphates well over 170. The ER did a bone scan and bone biopsy which revealed Adenocarcinoma Prostate Cancer. I was immediately given Casodex for 30 days which immediately lowered my PSA to 1.0. I was given 10 rounds of radiation to my spin and 5 rounds to my ribs. After 30 days of Casodex I was started on Eligard injections every 3 months. Almost immediately after that I was started on Nubeqa and had surgery to insert a port in my chest for chemotherapy. I received 10 rounds of Docetaxal. The doctors said 6 rounds is the standard but when my PSA rose slightly after my 5th round of chemo I agreed to continue up to 10 rounds. Thankfully, my PSA started going down again and after finishing chemo my PSA landed at 0.238. My doctor was concerned because she was hoping my PSA would have been undetectable at that time. Thanks be to God, my PSA continued to lower after completing chemo and I have been undetectable now for over 16 months. So, it tool almost 11 months for me to achieve an undetectable PSA. My Alkaline Phosphate remains low and stays around 35. I also received Zometa infusions monthly for 22 months but had to stop because I had an allergic reaction. The doctor switched me to Xgeva injections every 6 weeks. So, I am 2 years and 4 months into this journey. I am still frightened every time I get a pain in my back or am waiting for my PSA results every 3 months. I do get fatigued from the ADT and Nubeqa but I was determined not to let this disease stop my life. I have my own software company (I am a consultant) and I work 13 to 14 hours Monday through Friday to support my family. The ADT has caused me to gain weight which I do not like but everyone that has known me for a long time says I look great and I look healthy. My wife feeds me a 60% plant based diet and I feel so much better eating clean. Never smoked and I have not had one drink since being diagnosed. But I still enjoy a slice of pizza or two and desert from time to time. I am praying I remain castrate sensitive for years giving science time to come up with additional curative medications and treatment. My doctors says the amount of cancer does not matter, it is how well you respond to ADT, ARSI's and chemo that determines your overall survival. So, take heart.

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