Suggestions for next step?

After nearly a year and a ton of research, I still feel like I'm stumbling around in the dark.

Newest PSA is 2.210 up from 0.687 last month. Continues on daily Casodex and Lupron injections every 6 months. PA said at check up yesterday everything looked great and MO wants to see him in 2 weeks. His PSA was only 2.4 on diagnosis.

I'm highly concerned and wondering what our next steps should be. Waiting two weeks seems like an eternity!

Any advice or information would be greatly appreciated!

Zytiga or Xtandi are good next steps after chemo. He can also try Provenge. There are many good clinical trials, depending on where he's located.

DMC395-
Your name, anything to do with the great group Run DMC?
Just one more vote for Zytiga, it is working for many of us!~
Winger

Hi Dmc695. It is often hard to know what to do next. Especially with this Gleason 9 stuff, since it can be aggressive and a bit unpredictable. The uncertainty can become quite stressful.

I've added you to the G9 Crew roster on our thread for those of us facing this diagnosis. It's a gathering place to exchange information, and to see some other forum member names with it. There are links to many of their initial posts, too. You may find some useful information by checking on them.

Here's a link to that thread:
The Gleason 9 Crew -- Part 2, continued.

This forum is a good resource to help with your research. As you've already seen, there are people here who can suggest avenues to explore.

If you wanted to do some preliminary stuff before the next appointment with the Oncologist, you might review the Formulary data for your Dad's current insurance coverage. Look for Zytiga (abiraterone acetate) and Xtandi (enzalutamide). See how they may be covered. Whether any PreApprovals may be required. Perhaps print out any PreApproval forms and contact info to take to a future appointment, for possible future use by the back office staff. See if there may be a designated Specialty Pharmacy to which the prescribing physician may be required to send the order, after a PreApproval is confirmed. See what the anticipated copays will be. If your Dad may be getting his drug coverage in the US Medicare system in a manner involving the "donut hole", look for some estimates of what his monthly copays will be for the first year, as he enters and then leaves the "donut hole", etc. If he is of modest $ means, perhaps look on the drug providers websites for information about their financial assistance programs, etc.

Being metastatic but still generally asymptomatic, I tried Provenge in 2016. The prescribing folks in conjunction with the Provenge folks, took care of all the insurance preapprovals and scheduling details. It involves a six week period of time, during which 3 leukapheresis procedures lasting about 3-4 hours each are done at a blood center to remove certain blood cells and send them off to become "Provenge" (Sipuleucel-T), and are then followed a few days later by 3 cycles of the reinfusion of those treated cells at an infusion center, in hopes of triggering a lasting, long term immune response. (Total cost for Provenge comes to around $93,000, so those preapprovals and other possible financial assistance matters are things to watch carefully.)

I started Xtandi in Nov 2016. Had to do a little hand holding with the office staff and the preapproval folks, and the specialty pharmacy for my particular insurance coverage, but it soon settled-down. Got a preapproval letter good for the first 12 months. Now I either call or get a call from the Specialty Pharmacy well ahead of when my monthly Xtandi capsules bottle is due for a refill. They ship directly to my house via overnight air UPS. (My Xtandi in the USA will currently come in at over $110,000 per year as billed to insurance for my particular coverage. Fortunately, I have a very nominal copay, but other's may not. Good to explore ahead of time.)

Zytiga may or may not have similar insurance/prescribing quirks. Hopefully handled very smoothly for your Dad by the Oncologist and staff.

Charles