Looks like I may be starting Provenge immunotherapy soon, although I'm still being evaluated for castrate resistance. I finally found a local clinic to administer it (although I may have to go to Orlando to have the blood drawn each time).
Interestingly, it is being done by a Urology clinic. Apparently, that is more the norm for Provenge than not, that it is handled in a Urology setting rather than oncological.
In fact, whenever I have searched clinical trials.gov looking for trials in my area, this clinic seems to be involved in most of them. In fact, there's one starting soon that I may join where one arm of patients get a 4th Provenge treatment 20 weeks after the first three end.
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Provenge is allowed after one has a diagnosis of castration-resistance. It may work better when used simultaneously with some kind of radiation that releases more cancer antigens into the blood.
I said thanks something to consider when I should have said how much I appreciate your wisdom which comes from a tremendous amount of work and that you so freely share with so many people. Now I can say a simple Thanks.
i did it two years ago and used a local red cross facility. Piece of cake. Just be prepared to not move out of your seat for four hours. Pick a hood tv series and enjoy.
interesting question. I actually used Provenge while I was still hormone sensitive about 26 months ago. It is not approved for HS so I had to pay out of pocket. I chose to do that because my MO and i looked at the various tranches in the phase 4 trial snd noticed that the lower the starting PSA, the greater the median increases in survival. For example, the median survival increase for the entire trial was only 4 months. But in the lowest tranche the increase was 14 months longer than men with similar PSAs in the control group. As far as results, my first “drug vacation” ended at 5.0 PSA after 18 months. I’m on my second vacation at 26 months and my PSA has actually decreased (with zero treatment for 26 months) over the last 6 months from 2.7 to 2.3 (15.%). Since I only did a focal treatment originally, I still have 60% of a prostate so 2.2 is actually close to normal PSA. I can’t say if the “causation” is the provenge, but the “correlation” is sure there. It was quite expensive out of pocket, so i hope it’s the reason.
Good luck with this. My husband has completed his 3 rounds of Provenge and in a few more weeks we meet with the onc to do tests, etc. regarding efficacy.
Question, though. How will your doctor determine efficacy? I thought Provenge gave no indication about whether it worked (or didn't work). I'm still learning, though.
We meet with the good Dr. in about 3 weeks— so I’ll let you know what she says then. I’m guessing that a scan should give some indication. But I don’t know how long they like to wait or what kind it will be. As you already know, PSA numbers are not an indicator with this treatment….
Yes. But I also read that Provenge does not stop progression of current cancer. At least, that's the way. I understood it. I've guessed that it is supposed to impact development of future cancer cells.
Have you come across that? I'd ask about it, as I intend to. I've assumed that the patient, after the treatment, needs to continue to proactively monitor and treat the situation as it existed before Provenge treatment.
TA might know more about this aspect. I'll send something on that if I can locate it easily.
I had Provenge infusions back in 2019 hopefully they are contributing to my longevity. I can certainly give some pointers make sure you go the bathroom before your first leukaprisa blood draw because you're sitting still for about three hours unless it's been changed fro 2019.
You might want to add Provenge to your profile. When you had it, were you castrate resistant while on hormone therapy? Lupron/Eligard only or AA/wPred as well (back in 2019)?
I do not know where you are in Florida. I had my blood drawn at Blood one in Ocala and had the infusion at Moffett in Tampa. Also I did 2 trials with Florida Cancer at their Clinic in Sarasota 600 Cattleman Drive or Road. Dr. Manish Patel. I was sent there by my Onco at Dana Farber. Great people there. Highly recommend..
Have you tried Mayo, that is where I go now for treatment. Just put me on Nubeqa. Also I got really sick after my second blood draw they said it was because I ate eggs. But I have read here that that is not uncommon.
Yes, I contacted Mayo in Jacksonville. Apparently, they no longer use Provenge. I don't know about Mayo in Minnesota, but I've heard Dr. Kwon doesn't use it.
I just finished my final cycle of Provenge. My experience is as such:
First lukepheresis was not pleasant at all. I showed up in shorts and a tank top given that it was 90+ degrees outside.
Mine was drawn in a strip mall blood draw center an hour away and returned at my cancer center.
The setting was not ideal for comfort, bright Florecent lights, chair does not recline all the way and the tech sits and watches you the entire 3 hours. There’s a tv, but It wasn’t on. I brought headphones. Just be aware that you have both arms IV’d and you’ll have to squeeze ball with one hand and the other is pretty immobile for scrolling purposes.
The worst part of the experience for me was the chill. I got soooo freakin cold my teeth were chattering. The next cycle I showed up in a sweat suite and a heated vest.
The 2nd and 3rd cycle were easier. Perhaps because I was more prepared clothing wise and my body adjusted to the stress.
My PSA has gone from 28 to 124 throughout the 6 weeks. I have scans scheduled soon to see progression but considering that I’m not in tumor pain, I’d suspect something’s working.
Good luck friend. Positivity is our most valuable friend.
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Please share update with us. 
MRI prior to HDR Brachy and HDR intensity.
PSA holding low!!
Introduction and asking for help interpreting latest scan results and thoughts on future treatment plan please.
