Provenge Questions

Hi All -- I was a regular visitor to this site years ago during my husband's PCa ordeal, and am back now because a friend of a friend is dealing with a new, scary metastatic PCa diagnosis. They asked me for input, and this was always my first stop when I was researching our treatment options back in the day.

He's fairly newly diagnosed, and his MO has brought up Provenge. During our fading days, Provenge was one of the buzzy new options not many were eligible for, but from snooping around now, it seems it's very rarely mentioned. Is that because it's only appropriate in fairly narrow circumstances, or because it just isn't working as well as other options, or the price, or...? I'm hoping one of you can easily fill me on the current consensus on Provenge.

Had his doctor not brought up Provenge, from reading a few recent posts, I'm taking away that the usual advice would be ADT + Zytiga or xtandi, or potentially chemo. None of those are surprises...I guess the only surprise is that we tried all of those in a journey that ended 2.5 years ago -- I was expecting there would be more new news. But it feels like maybe we were fortunate to be fighting during a phase of rapid progress, and things have settled down a bit for the moment.

thanks in advance for any perspective on Provenge

As you mention, the criteria to qualify is narrow. And it does not lower PSA, so it is hard to measure benefit except for disease progression. We have a member here who used it and has had a good benefit.
If the patient qualifies and insurance will pay for $100,000 cost, then I recommend it. The sooner it is taken, the more likely it is to help.

People should be free to choose whatever TX they deem best for themselves. Sequencing may play a part and that again is for the patient to learn about and make informed choices. In my particular case, we've gone more "old school" with maximizing the good days now rather than just shooting for some maximized total lifetime. As my PSA tops 1000 any day now, I am pretty desperate for meds that can keep me in a relatively stable status quo. The last 4 plus years have given me so much pleasure, in ways I couldn't predict. I am nowhere near giving up, but dealing with the greater toxicity of treatment can be a bother.

I hear ya Infohound2. PC has made a tremendous personality adjustment in me. Probably many. But for sure, frugality has taken a step back. GFMPH is a very useful acronym.

My urology group continues to be bullish and has reacted several hundred with Provenge. They, and others claim it enables subsequent treatments to be more effective. Todd1963 is our Provenge pioneer. You should speak with him regarding his experience.

Regarding cost, it is no more expensive then the blocking drugs that cost $6k per month or more and many are on for years.

My husband was diagnosed in Dec 2016, Gleason 7 (4+3), PSA 75, lots of lymph node involvement and three bone mets. He started on Casodex/Lupron, dropped casodex after a month, did 6 rounds of taxotere, PSA dropped to around 1.5 and started a slight rise, husband went back on casodex (without consulting with MO - he's such a rebel) and PSA went down. At that time, December of 2017 Zytiga had been approved for castrate resistant PCa and he started on that. PSA has remained stable at >.06 or .01 (new machine) since. His MO started talking about Provenge over a year ago as it's seen as being more effective when PSA's are low. It took my husband some time to agree because it bothered him that there was no way to measure whether it works or not. He finished the three treatments April 2019. PSA is still stable. Since July 1st, he has been focused on loosing weight and has lost 18 pounds with daily treadmill exercise and following a strict low carb diet. He feels better than he has in years, works full time and plays guitar in his cover band. He did think that going through Provenge treatments was harder than chemo - I don't quite understand that ( he had no side effects from Provenge) but he's the one that did the treatments so I believe him.

Sorry to be late to the party. Is typical as I do t hang here as often as I use to. For me, Provenge was an amazing experience and I am confident that it is still working 7 years later. Provenge got a bad rap and a lot of doctors are reluctant to prescribe as it does not exhibit a PSA response. If your friend is eligible I highly recommend the treatment

Hi Infohound,
I remember you now. I still struggle with Lupron brain but I did have a vacation from treatment albeit a short one. Just enough to get testosterone up to a healthy level and remember what passion for my bride was like. Oh well, back to my alter ego. You may have heard of him. He is a super hero “Lupron Man” able to incinerate his enemy’s with the hot flash ray of death.
I am still water skiing LOL actual I moved into the 21st century and started riding a wake board. Last year I learned to fly. I would show you a pic but we still do not have that
Capability. Sigh!
I hope your friend opts for
Provenge. The research continues to be encouraging. Though not curative it enables greater effectiveness of other treatments. Thank you for sharing my blog. I still write but rarely have anything new or fresh to share. That in and of itself could be considered testament to the effectiveness of Provenge