First infusion of Provenge yesterday- so far so good. small bruise at the injection site, a little swelling in the same place , the nurse had to poke around a bit in there to nail down that slippery vein. maybe a little more fatigue than usual, but i can't identify any other side effects (yet). the three hours at the Red Cross Monday morning not being able to move my arms wasn't the best time i ever had, but I've definitely been through worse. The plane bringing my 'enhanced' cells back from Georgia yesterday was delayed an hour and a half, so the wait kind of messed up the afternoon, but if this treatment works like they say it will, i'll have a few extra months' worth of afternoons later on to make up for it. looks like Zytiga and Prednisone is up next after i finish Provenge. Hope my liver holds up to it.
what's the general consensus here on HU about Provenge? I've read that a lot of MOs shy away from it because its effectiveness is hard to measure, but my MO seems to like it.
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My husband had provenge in 2020. Hoping the process will extend his life. The strange thing about provenge is no one can really tell you if it works???? We are hoping for the best for you!!
i had chemo almost 2 years ago, radiation to the prostate not long after that, and now Provenge as i am showing emerging castrate resistance. i don't think my MO thinks I am ready for Pluvicto yet, but he was excited to see the FDA approved it. now if i could get him to be excited about BAT....
I had Provenge treatment last summer, my onco, Dr. Sartor said it was a logical next move. My PCa has become castrate resistant after a 6 year run of being undetectable. My PSA is very low and trials have shown that Provenge is most effective if given when your PSA is <5.0. Sartor is also a fan of BAT if a patient meets the criteria for it and is very experienced with it being one of the researchers on the TRANSFORMER trial. That is likely one of my next plays when the time for it is appropriate.
Hi, there. My husband is also followed by Dr. Sartor. We need to schedule an updated visit with him now that he has moved to Mayo, but when I've asked him about Provenge for my husband he has said there has not been a recent study showing efficacy after Nubeqa/darolutamide (one 12 years ago was positive but none since). Husband has been on Nubeqa for a year and he is also using eligard.
Any thoughts? His PSA is heading back up. Got down to 0.03 (November 2022) then started going back up and in March was at 0.26.
His last scan showed 8 positive retroperitoneal lymph nodes.
Would like to talk to Sartor about whether he thinks my husband might be a candidate for BAT, too.
Yes when I shared with him that I was going to opt for Provenge he said that was a reasonable plan but he’s not overly enthusiastic about it. If you know Sartor he is big into trial data, so since there wasn’t anything recent he’s not convinced.
I’ve always taken an aggressive approach to treating my cancer so I went ahead with it. I used to also be a patient of Snuffy Myers and he was big on a multidimensional approach to treatment so I felt Provenge fit nicely into that strategy.
Provenge treatment was not a big deal, the worst part was the needles they use for leukapharesis and having to sit for 3 hours while they collect white blood cells. You can avoid the needles by getting a chest port which in hindsight I probably would have done. SE’s were minimal, I didn’t really have any until after 3rd infusion, then I had chills, fatigue and flu like symptoms for a day or two, much like a Covid shot.
As for BAT, that will be my next option before moving on to something like Lutetium, Sartor has already told me I’m a candidate for it. Currently I’m playing “whack a mole “ with SBRT. My PSA hit 0.18 after a long period of being undetectable. A PSMA scan showed a spot on my rib, I had SBRT in January and last two PSA tests showed a decrease, down to 0.11 then 0.08. Hopefully the trend continues.
If you don’t mind after your Mayo visit let me know about your experience, thanks.
Thank you. I definitely will keep you posted. How did you get Provenge? Did Sartor order it for you? My husband has a local urologist to administer his eligard, but he stopped consulting the practice's PC guy and has been only following Dr. Sartor's plan since December of 2021. I guess now we'll have to get all his records sent to Mayo to establish him as a patient of Sartor's. I wonder if his urologist (been with him since dx in 2018) would order Provenge for him locally? (we're in middle Tennessee)
I had my local MO order it, he and Sartor work together on my care, he always follows Sartor’s lead since PC is his specialty. I would imagine that your urologist could order it.
BTW, Provenge and radiation play well together if your husband ends up going that route too. The dying cancer cells turn on the white blood cells that have been manipulated to kill PC cells. At least that’s what they say.
Hope all goes well, be sure he doesn’t drink too much water beforehand, it tough not using the restroom for 3 hours. I wore a pad just in case I had to let out a little pressure if you know what I mean.
Had it done June 2019 first infusion no problem, second chills, third full blown Flu symptoms for around 12 hours. I took Tylenol and went to sleep got up with absolutely no problems. Never give up Never surrender. Leo
Good luck with Provenge. I found the three visits to be pretty easy.
This is my first post. I am very impressed to read how supportive you all are. I had my RP in 2012 as a 49-year-old. At surgery, T3b with RSVI and two hot LNs. Surgeon at Sloan was wonderful. Recc'ed taking two dozen LNs at first surgery for patients who looked like they were getting along to avoid a subsequent surgery. Went stage IV a year later. Prognosis via nomographs not so hot at that time.
I started with a fairly traditional treatment, with some twists. I had read about a Phase 2 Sporanox (itraconozole) trial, and aped that for a year. Lupron nearly killed me due to serious hypertension. Started intermittent Firmagon/Zytiga with Prednisone/Dexamethasone, all of which I tolerate well. I started getting resistant to Firm about two years ago and Zytiga six months ago. The Dex is giving me a bit of a honeymoon, but I am now resistant.
The other big twist was getting Provenge 4.5 years ago, way out of guidelines. I was told it was given to resistant Gleason 6-7 types, not naive 9 (5+4) types like me. I argued (to Doc a bit but mostly to the insurance Co) that if I waited until resistance the Provenge would not have enough time to do it's work due to my pesky loss of life function. They acquiesced.
In October, my wonderful ONC and I had a hard talk about next steps (Taxotere/Zofigo/LU). He suggested a full-body PET with PSMA to see where we are. The PET came back clear in soft tissue and clear in skeleton, except for two mets in left hip! We jumped over the moon. Gonna zap those spots ASAP, and consider going med-free after that for a while. (I'll keep with the Xgeva, which I have zero side effects with).
Neither of us are sure what has 'disappeared' my mets. I am very suspicious of Provenge. I think it has just possibly, over all that time, slowly gotten my immune system to clean things up. I had been lighting up pretty good on bone scans since 2015. My early 2021 scans were so (relatively) good I figured they were in error.
Sorry for the long post, but I would be pretty hopeful about the Provenge. Good luck!
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