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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ecurb | @ecurb | Nov 16 12:31pm

In reply to @chipe "Just a question as I know I am late to the conversation: have you considered going..." + (show)

Yes , the flying saucer museum there is really cool.

chipe | @chipe | Nov 16 12:52pm

LOL

chipe | @chipe | Nov 16 12:53pm

In reply to @ecurb "Yes , the flying saucer museum there is really cool." + (show)

🙂

Roswell Cancer Institute, Buffalo, NY

ecurb | @ecurb | Nov 16 2:14pm

In reply to @chipe ":) Roswell Cancer Institute, Buffalo, NY" + (show)

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

melcanada | @melcanada | Nov 17 5:14am

In reply to @ckingbachelor "I have no pain and the Lupron has reduced my PSA to .0001. All that I..." + (show)

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

wooldridgec | @wooldridgec | Nov 17 7:39am

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.

retireddoc | @retireddoc | Nov 18 8:10am

71 year old diagnosed with prostate cancer, G9, 3 years ago. Initial imaging revealed no evidence of spread. PSA 7.5 at max. Had RP in October 2021. In March 2022, after PSA went up to 0.37 from undetectable after surgery, a PSMA PET scan revealed a solitary met to T8. I had successful SBRT to the vertebra and 4 months later the PSA had rapidly increased to 4.5 Repeat PET scan showed new positive node in pelvis.

Did research and sought treatment at Johns Hopkins. The MO immediately began aggressive triple therapy treatment with Docetaxel chemo, Darolutamide and Lupron. PSA went undetectable after second chemo treatment. Off chemo and Daro after 3 months and Lupron after a year. Had whole pelvic radiation 8 weeks after finishing chemo.

My PSA has remained undetectable (even with ultra sensitive test) ever since. My testosterone hasn't recovered-last week it was 52. My MO said they have killed the aggressive clones and my long term prognosis is good. Possibility I am cured and cancer won't return. If it does he said it will be slow growing/indolent and they can manage treatment. He has started me on T replacement therapy.

My MO has extensive experience treating oligo metastatic disease with aggressive triple therapy as soon as diagnosed. This made sense to me. Attack aggressively early and kill as much rapidly dividing, aggressive cancer cells and micro metastasis. Treat the primary tumor with surgery or radiation. Kill any limited mets with radiation. Starting me on TRT is controversial but living long term with very low T as significant deleterious health effects and QOL issues. I treat him and his team completely.

I am just trying to get on with life and live each day. I look forward to stating the T next week. I have been miserable the last 2 years with very low T.

Good luck to everyone fighting this beast.