High volume, advanced metastatic prostate cancer

[lgutman]

Hello. I am looking for guidance. My dad (now 81) was diagnosed with metastatic prostate cancer at the initial point of diagnosis in the ER on 10/25/2022. It had spread to 8 bones and was all over his spine, hip, base of skull, etc, but also as far as the base of the skull, and shoulder. His PSA was 137. He was treated with palliative radiation and a hormone blocker bicalutamide, steroids (that was for about 3-4 months), and a shot he takes twice a year.  First hormone blocker was great and we got about 8 months out of it.  We did not have a biopsy done on the prostate and never saw a urologist because his cancer was found in the ER we were sent directly to an oncologist. He is treated at the VA and his MO is great. He said this is the #1 cancer they treat. The MO said that there were three different types of main hormone blockers that we could use to fight it and chemo. Additionally, shortly after his diagnosis he fell and broke his hip and they were able to get really good tissue samples as the surgeon said his hip had a ton of cancer in it. It confirmed it was prostate cancer. When the PSA started to rise, his medication was switched up, a petscan was done and it demonstrated a partial response to cancer, with no advancement of the cancer and as our MO said it was still asleep and not growing.  My dad started Xtandi, which MO said was the third drug in his line up because the second drug (not sure what that was) required daily use of a steriod, which my dad was trying to avoid using due to his glaucoma. He is blind in one eye with low vision in the other. At our last visit (4 weeks ago) his PSA had moved from .3 to .75 and the MO mentioned that when we needed to switch this drug we would regardless of the side effects and have the eye doctor do more monitoring of the eye pressure and steriod reaction. Yesterday I took my dad to the ER because he had unrelenting pain in his shoulder and neck that got progressively worse over a 24 period. They ran a ton of CT scans and the cancer has spread all across the upper body, shoulder, clavicle, a second tumor at the base of the skull. The ER doctor had me read the reports and there were so many tumors. The palliative care doctor admitted him to get control of the pain, and I walked down to the palliative care doctor we normally see. She hugged me and told me the reason my dad was in so much pain as these were the types of tumors that ate away the bone and there were a lot of them. She said we were down, but not out. She said we would start a new treatment plan in the next week and she promised me she would not let my dad be in pain. She said we will do radiation too on the new area to help shrink the tumors and control the pain. I asked the ER doctor to pull his PSA and it was 1.4--doubled in 4 weeks, but really low for so many tumors. I suspect we will have a Petscan too to check the entire body and organ involvement. My dad has become so frail over the past 15 months. He is working with a physical and occupational therapist to help build strength. It has been gut-wrenching to watch the decline. I don't know what to expect. I can't believe Xtandi only worked for 5 months. I have been fortunate in never having to watch a loved one (firsthand) fight cancer. It feels like overnight his cancer came racing back with a vengeance. We are moving my dad to an assisted living place today (this was in the works for the past month) and it is a great place. The food is wonderful, he has his own apartment, which is almost like independent living with assistance. He had several falls and we needed him to be somewhere he had assistance if needed. He is also more homebound, so it will give him social interactions. I am at a loss for what is next, and why this seems so aggressive, and I am really worried about the skull mets and how if feels like the cancer is everywhere. Any help, advice, or suggestions is appreciated. 

[Tall_Allen]

I'm so sorry to hear that he and you are going through all this. It sounds like he has some good, caring doctors. I hope chemo will give him some relief. They may want to mix docetaxel and carboplatin. Maybe a bone strengthening agent will help prevent fractures.

[lgutman in reply to Tall_Allen]

Thank you. It is common for prostate cancer to spread so fast. The CT scan showed so many tumors, and the palliatve care dr said it was the type that just ate up the bone. His PSA is still low although increasing I was shocked at the vengeance it came back with. Not knowing a Gleason score, I am unsure what to think other than we are in bad place. Any idea what life expectancy is when testosterone and PSA is still so low yet the cancer is everywhere?

[Tall_Allen in reply to lgutman]

Yes, he does seem to have a rare particularly virulent strain. I don't know what the life expectancy is. A lot depends on his response to chemo.

[lgutman in reply to Tall_Allen]

Thanks. I think my gut tells me they are going to do some type of triple therapy with chemo, hormone, radiation, etc. I read his CT scans online on a few it talks about lyctic lessions on the skull portion and other parts.

[Sailing-Todd]

Thank you for looking after your Dad. It sounds like you are doing an incredible job at an extremely difficult time. I hope they manage to improve things for him.

[j-o-h-n]

I know with all of your Dear Dad's issues you may want to tell me to "pound sand" but sometimes it helps to let us know the following: Are you his son or his daughter? Where is your Dad located (city/state)?

If you've been a member of H.U. as long as I have you would have undoubtedly seen the many improvements and new meds introduced in fighting Pca. They are a miracle in themselves... So your dear Dad has a much greater chance of reaching my age then I did when I was first diagnosed with this fucking disease. It is always darkest before the dawn....so remember that God is on his side and of course cherish every moment you have him with you.....Give him my regards (oops our regards) for being a true war baby. (Make him laugh).

Good Luck, Good Health and Good Humor.

j-o-h-n

[lgutman in reply to j-o-h-n]

Thank you. I am his daughter and I just moved my Dad to Scottsdale AZ. I have been reading about all the different meds and I thought Xtandi was one of the best of them but it didn't even work for 5 months. What was shocking to me is that his PSA is still low at 1.4 and his testosterone was low too around 19. The cancer grew really quick. I believe that they are going to give him all the drugs they can and I just hope it lasts to give him some more time.

[j-o-h-n]

Well, you are a wonderful daughter.....I hope all the meds and your and your brother's prayers and love will keep him around until he reaches my age.........You all stay well...........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Professorgary]

I take low dose abiraterone and only 5mg of prednisone. You may want to ask your doctor about that possibility. You said his testosterone was only 19. That is not really that low when fighting prostate cancer. If he goes on Abi the T level should drop more. God bless.

[lgutman in reply to Professorgary]

I believe that was the drug we skipped to go to xtandi. I had asked his MO when that happened if it was a medication we could go back to and he said yes. I told my dad that his cancer was more important than eyes for now and we could have his eye pressure monitored more often and if it did go up they could treat it or he could decide what to do. He understands. I just don't feel like the hormone blocker is going to work if xtandi didn't. His PSA went from .3 to .76 within 8 weeks and then 1.41 4 weeks later. I thought xtandi was supposed to be a great drug.