Please share your experiences with Provenge. What’s it like getting the injections and what are your results?

[SViking]

I’m stage four on Orgovyx and recently went castrate resistant with three small bone mets on my upper spine so we added Zytiga. I started the Eclipse clinical trial three weeks ago with PSA of 3.3 and am authorized for up to four treatments. My plan is to start Provenge after the trial is over. What do you guys think about this?

[Magnus1964]

The worst part was that tube sticking out of my chest for six weeks.

[SViking in reply to Magnus1964]

thanks. Do they always require that port in your chest or sometimes can you get it in the arm?

[Magnus1964 in reply to SViking]

I didn't have a choice. Maybe it is different now.

[Fightinghard in reply to Magnus1964]

agree Magnus, the dual tunnel catheter tube was annoying. But it made the process itself much easier.

Did the Provenge help? Who knows. No way to measure the individual results as far as I know.

[dhccpa in reply to Magnus1964]

How'd it work for you? I know you've had many sections to your journey.

[Magnus1964 in reply to dhccpa]

Yes, I had some nodules in my lungs. After Provenge the nodules shrank and when dormant. That was seven years ago, I have had no problems since.

[SViking in reply to Magnus1964]

Congratulations on that. Were you on ADT or anything else after Provenge?

[Magnus1964 in reply to SViking]

I was not on any other treat while on Provenge.

[dhccpa in reply to Magnus1964]

That's great

[Tall_Allen]

Having gone with a friend, each leukocytapheresis is a long (3 hr) procedure. You can't ask for "the results" because how would anyone know if they lived longer? But we know from randomized clinical trials that patients do.

[dhccpa in reply to Tall_Allen]

Is this a choice when initial ADT falters and PSA rises? Is it used alone or can one do AAP and/or chemo along with it? My MO and I have barely mentioned Provenge.

[Tall_Allen in reply to dhccpa]

I think it is best along with radiation or chemo -- the dead cancer cells release lots of antigens for the dendritic cells to latch onto.

[dhccpa in reply to Tall_Allen]

Thanks I'll bring it up on next visit.

[Kayakbob]

I had Provenge in 2013, after spot radiation had hit mets and PSA was way down again (unmeasurable). Stayed on ADT for about 18 months after Provenge, with PSA still unmeasurable. Started ADT holiday, lasted 6 years before PSA rise (new mets found), back on ADT & Enzalutamide, radiation and surgery, currently receiving Pluvicto (3 doses so far).

Provenge was reasonably tolerable. 3 cycles, 2 weeks apart. White blood cells harvested by Lucapheresis (sp?), with one needle in one arm for blood out, one in the other for blood back in (less white blood cells). WBC's then rushed to lab in California, treated to recognize and attack PC cells. and returned 3 days later and infused back into me. (no chest port required for me, as veins were OK). Harvesting was no issue other than having to stay still for over an hour (can't remember exact timing), infusion was only about 30 minutes. I remember feeling kinda crappy for a couple of days after the infusions, but no big deal.

I am convinced that Provenge, while PC load was at it's lowest, was able to mop up almost all the PC cells, and gave me the long period before reoccurrence. (actual mileage may vary!!).

[dhccpa in reply to Kayakbob]

Can you take it again?

[Kayakbob in reply to dhccpa]

I'm not sure - I've placed a call to Dendreon, waiting for an answer....

Here's the website for Provenge - provenge.com/

[Schwah]

I think Provenge as early as possible is a great choice. A breakdown of the clinical Study showed those with the lowest starting PSA performed the best against others with low PSA and no Provenge. It was easy. Binge watch a good show while you sit for 3 hours each time. I got sick only after the third infusion and it was flu like got 2-3 days. No other issues.

Schwah

[Brysonal in reply to Schwah]

Do you know why it’s not used when hormone sesnsitive?

[pjd55d]

did Provenge in 2018

3 sessions 2 weeks apart -

in the arms

harvest blood on Fridays - blood sent to Atlanta - put back in on Mondays

yeah - long process but brought a friend and we gossiped

Oncologist believes - and I do too - that the treatment has a positive effect on keeping my psa undetectable and kept me going

I'm a believer in it

best to you

[j-o-h-n]

This may be apples and oranges:

I did not have Provenge (immunotherapy meds) but I did have Keytruda (also an immunotherapy meds) for my Melanoma Lung Metastasis and it worked.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/23/2023 3:20 PM DST

[GAdrummer]

Provenge early on was the plan for my husband, but getting on the schedule took time. So ketoconazole and prednisone were used to hold down the psa. He got the 7am slot in 2013 at the Atlanta Red Cross facility. We would drive in the day before and stay in a nearby motel. My husband listened to his favorite music with headphones and napped while I knitted and watched to wipe his nose and change the CDs. He couldn't get the port because of a scheduling foul-up. Xtandi was started as soon as the Provenge treatments finished. The psa took a full year to reach a nadir of 0.1, the best until Keytruda. He stayed on Xtandi for a total of two years before going for a clinical trial.

[tdouds]

I had Provenge in March/April 2021, after finally being kicked out of the clinical trial I had been in for 6 1/2 years. I had gone metastatic, castrate resistant, which is what kicked me out of the clinical trial, but it had been 14 years since diagnosis when that happened. I didn’t have any trouble with the leukapharesis, except for fear that very first treatment to pull. The cells was a bit scary, but really wasn’t a bad issue at all. My problem was I kept falling asleep during the three hours, and I would accidentally bend my arm, and an alarm would go off there and wake me up so I could straighten my arm back out.

Mine were done on Mondays, and they were already in a box and being shipped to a lab in Georgia (I’m in Ohio) before I could get out of the facility! Infusions were then done on Thursday, and I had absolutely no problems with infusions until my third one; unfortunately, it didn’t happen for me at the hospital, though they quizzed me numerous times to see if I was OK… That night when I got home, I felt like I got every single Side effect that’s listed in the brochures all in a two or three hour period that night! I had chills, fever, nausea, you name it, but it was all gone in a couple three hours. Never had another problem, and my PSA did drop, which normally with most patients I believe isn’t something they really look for, but I did have a pretty substantial drop though not to a nadir of any type. It did keep my PSA pretty low.

It’s now 2023, I’m still on the upswing from that .08 that I was at after the Provenge. I’m currently at 3.93, and it’s rising right now, so probably in another 2 - 3 months will add something to the equation other than my quarterly Eligard shot, but I thought it went well. Plus, I got an absolutely fabulous blanket, and the best water bottle I’ve ever had! Oh and a backpack, some hand sanitizer & some squishy balls…pretty good deal for my $130k!

[SViking in reply to tdouds]

two questions. While on Provenge were you taking anything else? And why did you have to pay out-of-pocket instead of using insurance?

[tdouds in reply to SViking]

I was on Eligard during that time; and I did not pay out of pocket. They told me that they’d see what my insurance would pay, then they’d submit that number to a hospital committee to see how much they would pay, then they’d submit the balance to a philanthropist - that they’d only had two people in eleven years who were unable to qualify…they were astonished that my insurance covered it in full…but that was because my wife was dying at this time, and we’d long passed the family maximums that year - not how I’d like to have had it covered, since she passed away 2 months after I completed my treatment, but it was covered.