PSA up to 112, Xofigo treatment now

[tomtom9148]

Hi folks,

I was diagnosed in May of 2016 with Gleason 9/10 and Mets in 3 bones. I have had Lupron, Doxcetaxal, PROSTVAC, Xtandi, Zytiga, Immuneotherapy trial, Cabazitaxel, and now Awaiting my 3rd dose of Xofigo. My PSA has rose steadily since the Xtandi failed in October of 2019, now up to 112 after prior count of 65 in October of 2020. I am told that Xofigo does not reduce PSA, but attacks the bones and might eventually lower the PSA. I am with Dr Alex Menter at Kaiser Lonetree (Colorado) and I trust him, but I am getting worried. I have an appointment with UCHEALTH cancer center next month for 2nd opinion and clinical trial search. I am mostly healthy, but limited in stamina and fatigue, I have a slight fracture in my sacrum in the S2 area that is affected, not by trauma, but due to the cancer. It’s been a long haul and I am looking for next steps after Xofigo. Provenge is not an option at this point, insurance will not approve it at this point. I am open to suggestions at this point.

[Tall_Allen]

You might want to appeal your insurance company's decision on Provenge. What reason did they give?

[Olivia007 in reply to Tall_Allen]

My dad had Provange 4 years ago what was it supposed to do? I’m still puzzled at the cost and how much work is necessary to get that blood out of your system on time and into your system on time? We did it but looking back it didn’t really do anything?

[Tall_Allen in reply to Olivia007]

"We did it but looking back it didn’t really do anything?" How could you possibly know that it didn't do anything? You can't know what would have happened if he hadn't used it. Perhaps what is confusing you is that it has little or no effect on PSA.

[Olivia007 in reply to Tall_Allen]

True and I guess maybe we were looking for that miracle of not needing to add more treatments? Or a cure but I know it’s not a cure. But we will never really know if Provange did anything or is it the shots and the pills. Or a combination of everything

[tango65]

Provenge could be indicated and it could be beneficial to do it alternating or close to xofigo treatment.

You could also investigate the possibility of Lu 177 PSMA and/or Ac 225 PSMA treatments. There are some clinical trials:

clinicaltrials.gov/ct2/resu...

clinicaltrials.gov/ct2/resu...

There is also the possibility of going to Europe, India or Australia for these treatments, if financially possible.

[Magnus1964]

As amazing as it sounds, for some men their PSA does not start falling untill they have finished xofigo.

[tomtom9148 in reply to Magnus1964]

Thanks Magnus, I have heard that as well. It is now up to 175, hard to fathom, and I have cat scan today. We’ll examine the results before going on #4 Xofigo. I’m looking into trials, latest one is PT-112

[Magnus1964 in reply to tomtom9148]

Your PSA may not Begin to fall till a month or two after xofigo.

[Olivia007]

Do u feel any pain relief in your bones? I know it’s only been one treatment

[tomtom9148]

I have had 3 treatments so far and just got back the results from my Cat Scan. Great news! The Xofigo is working! No new Mets, no growth, bone Mets show “ undergoing treatment”. I didn’t understand the write up so I spoke to my PA and she interpreted it for me. I never felt pain in my bones directly, so I can’t say if they are reduced pain, but I hope for then to be stronger at the end of this treatment, around March 10th. Then either Carboplatin or a clinical trial