Hi all, this group has been a great resource for me so far so thank you! My father (80 years old) was recently diagnosed with metastatic PC. He discovered it because on new years eve he was having back pain and trouble breathing and went to the ER. They discovered at the hospital that he had two fractured ribs and bone mets (see dr notes below) His PSA was ~1400 at the hospital, so, very high. He started ADT (Casodex) at the hospital, and last week switched to Nubeqa per his MO at NYU Langone. He got another PSA test on 1/23 at his first oncologist appointment, and it was down to 751.
My first question: anyone experience dizziness & trouble walking from the bone mets? At the hospital he was having blood pressure issues so they started him on meds, which brought it down. His main issue right now that he's been having issues walking. This started in the hospital and no one gave any answers as to why. He's basically been bedridden ever since getting home from the hospital. He can walk straight and be okay but when he turns he gets vertigo. He has a neurologist appointment next week, so hoping they can provide some answers. Has anyone experienced this? It makes sense to me that it would be from all the bone mets, but curious to hear peoples experiences.
My other question is: he was initially booked to have a PSMA pet scan this past week but the doctor said it actually wasn't really necessary, and wouldn't change his course of action re: treatment. He's ONLY on Nubeqa right now. This seems weird to me given all my research. I'm confused as to why the PSMA wasn't considered medically necessary and also why a more aggressive treatment like triplet therapy isn't advised. Can anyone give any insight into that? I want to make sure we aren't missing out on the best course of action, but of course I'm not involved in the conversations with the doctor.
MO NOTES:
12/30/24 MRI lumbar spine- multifocal osseous mets. Regions of epidural extension at T6-T8 and T-10-T11. Mild T6 superior endplate pathologic compression fracture without retropulsion. Focus of epidural extension right lateral recess at L3 inseparable from the ipsilateral L3 nerve root. Mild L2 and S1 pathologic compression fractures without retropulsion.
12/30/24 CT AP- Probable bone mets within the spine and left ribs and multiple enlarged pelvic LNs.
12/30/24 CT chest- Sclerotic/moderate appearance involving multiple bilateral ribs, sclerotic appearance of T6 ans T7.
1/13/25 Prostate bx- Gleason 4+4, 1/5 ? Started on Casodex
Impression:
Patient is a 80 y.o. man who presents to discuss management of his de novo high volume hormone sensitive metastatic prostate cancer involving bone.
We discussed that hormone sensitive metastatic prostate cancer is incurable but treatable disease. We reviewed treatment options which include ADT with or without abiraterone or docetaxel or enzalutamide or apalutamide and we also discussed the benefit of concurrent docetaxel with either abiraterone or darolutamide for men with high volume metastatic prostate cancer. We reviewed the results of the randomized phase 3 trials reporting results of studies using these newer agents showing overall survival benefit. We also discussed the recent STAMPEDE radiation study which demonstrated an overall survival benefit (HR 0.68 at 3 years) for the addition of prostate-directed radiation therapy in patients with low-volume hormone sensitive metastatic disease, in a pre-specified sub-group analysis.
1 mo ago developed pain, gait instability, started bicalutamide and now improving gait, fatigue. Since 1/13/25 his walking has been improved. Possibly myelopathy. Fatigue from bicalutamide
I recommended starting darolutamide and hold bicalutamide once darolutamide arrives.
Thank you!
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Charleecattledog
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Although sometimes you see Bicalutamide described as ADT, it is not.
Bicalutamide is an older generation androgen receptor antagonist, and works to jam up the androgen receptors on the surface of all cells but especially prostate cancer cells. It does not suppress the production of testosterone, which is what one usually thinks of as the function of ADT.
ADT such as Firmagon or Lupron works on hormone production from glands under the brain which start the production of testosterone. ADT has been the foundation of all prostate cancer therapy for half a century. In the case of spinal cord risk, the distinction between the two main classes of ADT is important, specifically whether the ADT that is prescribed is a GnRH agonist or a GnRH antagonist.
Not being a doctor and not knowing the situation of course, it's impossible for me know why your Dad's doctors have not prescribed ADT, and have instead opted for monotherapy. A quick review and search suggests that this might be due to an assessment of your Dad's strength. At least you should understand the strategy.
Very good point Mgtd, specifically for an ADT GnRH agonist-type like Lupron etc. of course. (I didn't know this and had to look it up; thank you for highlighting!) From the original post though it seems that there wasn't any Lupron or other ADT actually given?
Greetings Charlee the cattle dog (ACD, Cattle Dog, Blue/Red Heeler, Queensland Heeler),
I'm having balancing issues..... been on Lupron forever and switched over to Nubeqa from Casodex in April 2023. But I'm 88 and fighting this shit since 2002, although balancing has been an issue for about 2 years (Not too bad btw).
None of my business but I would have taken your dear Dad to MSK (best Ca hospital) uptown a few blocks from NYU. Keep up the great work for your Dad.
When you have time please update your dad's bio. All info is voluntary but it will help him/you and help us too. Thank you and Keep Posting!!!
Hi John, thanks for your reply. I’ve been encouraging my dad to go to SKM but he’s had a few relatives who have had not so good experiences there. I’ll keep trying though.
Good morning. I am sorry your dad is in trouble. I read the notes . The imaging shows extensive epidural infiltration. . The difficulty walking and loss of balance is most likely to be due to myelopathy. Did they do a neurological exam to confirm this??
I do not want to appear insensitive but the outlook is not good and while there is a chance that adt/ari might help, I feel he should have access to palliative care (if not already accessed) and to explore his wishes about further active treatment. The choice of ADT or ARI is not really the central questionn.
Myelopathy is a condition that affects the spinal cord, causing damage or compression.
Causes:
Myelopathy can be caused by various factors, including:
Degenerative changes: Age-related wear and tear of the spine, such as herniated discs or spinal stenosis
Trauma: Injuries to the spinal cord, such as accidents or falls
Tumors: Tumors that grow in or around the spinal cord
Infections: Spinal cord infections, such as meningitis or encephalitis
Autoimmune disorders: Conditions that cause the body's immune system to attack the spinal cord
Symptoms:
Symptoms of myelopathy may vary depending on the severity and location of the damage. Common symptoms include:
Pain in the neck, back, or limbs
Numbness, tingling, or weakness in the arms, legs, or hands
Difficulty walking or coordinating movements
Loss of balance
Muscle spasms
Difficulty with bladder or bowel function
Diagnosis:
To diagnose myelopathy, a doctor will typically perform a physical exam, medical history review, and imaging tests such as an X-ray, MRI, or CT scan.
Treatment:
Treatment for myelopathy depends on the underlying cause and severity of the condition. Options may include:
Medications: Pain relievers, anti-inflammatories, or muscle relaxants
Surgery: To remove tumors, decompress the spinal cord, or stabilize the spine
Physical therapy: To improve mobility and strength
Occupational therapy: To help with daily activities
Prognosis:
The prognosis for myelopathy varies depending on the cause and severity. With prompt diagnosis and treatment, some people may recover fully or with minimal disability. However, in severe cases, myelopathy can lead to permanent damage and disability.
Myelopathy | Johns Hopkins Medicine
Nonsurgical Myelopathy Treatment Nonsurgical treatment for myelopathy may include bracing, physical therapy and medication. These...
Johns Hopkins Medicine
Myelopathy | Johns Hopkins Medicine
Surgical Myelopathy Treatment Spinal decompression surgery is a common treatment for myelopathy.
Johns Hopkins Medicine
Myelopathy | Johns Hopkins Medicine
Nonsurgical Myelopathy Treatment Nonsurgical treatment for myelopathy may include bracing, physical therapy and medication.
Don't know if this will help, I've had prostate cancer for almost 12 years and have had a variety of Tx's (treatments)!! Hate to say his cancer is Very extensive and doing a PSMA Pet scan will show probably even More cancer areas. But it won't change his overall Tx. He has so many lesions that they can radiate only those areas that give him the most pain. My question to you is "How did he go for so long without any signs of possible cancer"? I've never heard of a PSA level quite That High!! Good Luck to you on the road ahead. Hang in there RC
Thank you. I’m still piecing it together but from what I understand, he had a cancer scare when he was in his 50s from the PSA test being elevated, and they biopsied and it came back clear so it seems like he’s kind of been a PSA skeptic ever since. Not to mention, he’s extremely skeptical of big pharma and the for profit health insurance system in the US. I cannot get a straight answer as to when he last had his PSA checked. He says he wasn’t in any pain until this recent episode. He says he’s actually not in any pain now after starting the meds, just the walking issues.
Actually I can relate to his feelings, I Too put Off having My PSA tested in my 50's! I figured I had No family Hx (history) so I would be Fine. I went 2 years without checking and I have regretted that decision Big Time!! And the "Real Kicker" is I'm in the medical field.... I'm a Nurse!! When I finally got checked and biopsied All my Gleason Scores were 9- 10!! But my PSA level was only 8. I live in SC now but at the time of initial diagnosis I lived down state near West Point NY. I believe you also are in NYC, given My circumstances, my Wife immediately picked me up and went to Sloan Kettering cancer center! It is World Renowned as being the Best in the country. But as several oncology nurses have said about me in 12 years You've been through "Hell and Back" several times!! I've had 2 months of daily radiation at Sloan Kettering and Hormone therapy and Numerous surgeries and infections and PICC lines and IV antibiotics. Due to the effects of radiation I lost my bladder and 2 inches of my pubic bone! It's amazing I'm still walking. Also lost a kidney due to scar tissue and sadly I could Keep Going with my cancer story!! So YES I regret Not checking My PSA regularly, because All of this would have been Avoided!!!! So if you're married or have siblings or children... Tell them Please once they reach 50 have their PSA checked regularly. There is Still No Guarantees but if Caught Early Prostate cancer is Very Treatable! Lastly, as others have replied to you in this feed, your Dad's cancer is so extensive I don't know how much the Dr's can do!! But I would recommend getting a second Opinion from Sloan Kettering, what do you have to loose?! After All I've been through, I still Believe that "Miracles Still Exist" in this World! Good Luck to you, if you have any questions please feel free to text me and I will try to answer them the best way I can. Or point you in the direction of someone who can. Sorry for the long note!
Sorry, I should have added that your doc is quite right saying that PSMA will add nothing to decision making in the context of such wide spread disease.
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Progress Summary of my journey 
