Need some advice on what tools are still in the toolbox

[Rondief]

Hi everybody, it’s been a while since I posted but I’m looking for some advice. 

I was diagnosed in the fall of 2019 with metastatic prostate cancer with 6 bone lesions (a few have shrunk and a few new one have appeared). FYI, I had my prostate removed in July 2019 Gleason 9, PSA 12.

I’ve run the gambit from Casodex to Docetaxel to Zytiga to Cabazitaxel to Pluvicto currently on Xtandi but it is failing. I’ve also had Lupron and Zometa along the way. All of my treatments have been at Hershey Medical Center. 

My MO was looking to start me on Xofigo, but it was denied by the insurance, so I’m wondering what tools might be left in the toolbox. I was also denied for Talzenna and Lynparza.

I have an appt with on June 15th and I want to do my research and be prepared to discuss other possible options. 

I’ll be 63 next week and I feel great. I retired last year and we are currently traveling out west so I could enjoy my QOL.

I know the end result. So I’m thinking about doing nothing just letting it run its course and enjoying what life I have left, but I’m not sure what to expect as to timeline, pain, QOL. 

Any thoughts would be greatly appreciated.

[Sierra-Charlie]

Hi Rondief. Thanks for sharing your history. Mine is not that different, although you’ve been put on a greater variety of drug therapies than I.

I had removal surgery in 2108, followed by radiation. Diagnosis of metastasis was made so I was put on Lupron 2 years ago. As expected, that became resistant a couple months ago, so now they have added Aberiterone/Prednisone. I have my first blood test this week to see if it is working. The cancer is showing up in torso lymph nodes, but not bone yet.

I can relate to your thoughts of going off treatment and just enjoying your remaining time. I am 58. Most of my research on mCRPC indicates another 2-4 survival. And my research also seems to indicate very little extension of life with any of these drugs and procedures. Usually it is a benefit of months. So, yes, I’m wondering if the treatment is worse than the disease.

[j-o-h-n in reply to Sierra-Charlie]

Hey Sierra, ........ Madre Mio, 2-4 years.......that's donkey dust..... you'll be around long before we get to the year "2108" in your post. Trust me you'll be around so long you're going to be an old Uncle Charlie who pulls that pinky prank on all the little kids...So enjoy your life, laugh at everything and remember the gold dust turned into donkey dust......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/25/2023 6:59 PM DST

[GP24]

You may want to get into this trial: urotoday.com/conference-hig...

This is for patients in your situation.

[Tall_Allen]

Appeal Xofigo. Here is a list of some Xofigo combos that might be even more beneficial than a monotherapy:

prostatecancer.news/2021/02...

[Rondief in reply to Tall_Allen]

Thanks TA, we are appealing the decision but I don’t expect much success with that.

If it does get approved I with discuss the combos with my MO.

[Tall_Allen in reply to Rondief]

The only bases for denying it would be cancer in visceral organs (lymph nodes are OK) or lack of pain (just say there is some bone pain).

[Rondief in reply to Tall_Allen]

Cool that might just work, I may have it in one lymph node.

[CJ4J]

Have you had genetic testing recently? My husband repeated it several times and ended up with high tumor burden and qualified for Keytruda. But that eventually failed as well.Mayo suggested as a last resort Dexamethasone for 30 days which helped alot. Then added Nubeqa as he hadn't had that yet. It's worked a little bit so far.

[Rondief in reply to CJ4J]

no I have not but I will bring these up to my MO. Thanks

[Coop68 in reply to CJ4J]

Did the genetic testing provide different results each time?

[CJ4J in reply to Coop68]

Yes, he didn't show high tumor burden on the first couple of test. Then he developed the ATM. Mayo Clinic believes in repeating the tests.

[Coop68 in reply to CJ4J]

Thank you.

[Dannyboy48]

Red wine, dancing singing,exercise and keep on smiling.

Don’t worry about the PC we will all probably die from something else

I’m 7years + on adt diagnosis stage 4 , bone Mets in pelvis Gleason score of nine

Started with exgiva and Firmagon, quit xgiva after 2 years due to dead jaw syndrome

Just started ellagard due to rising testosterone from 5 up to 45 really fast among other reasons . Three months latter testosterone dropped to <3

Don’t ask me how or why so I will keep on singing, dancing, golfing, and more my red wine for me and my men 😂🎤🍷⛳️

I just turned 75 years old and I thank God every day even for the days when I feel like crap even with no energy on many days. Keep on pushing and keep on praying someday a miracle drug could come and end this.Terrible disease.

[Rondief in reply to Dannyboy48]

I’m right there with you brother. Life should not be about arriving to the grave looking good and in a well preserved body. Hell, I plan is to arrive to my death late, sliding in sideways, in love, and a little drunk 😉

[j-o-h-n in reply to Dannyboy48]

Just for you Danwood.....

youtube.com/watch?v=DquA6Ky...(Not working as expected?)

Good luck, Good Health and Good Humor.

j-o-h-n Thursday 05/25/2023 7:05 PM DST