Provenge update

[dhccpa]

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.

[Tall_Allen]

Often, the Red Cross does the leukapheresis.

[God_Loves_Me in reply to Tall_Allen]

Learning questions: If I do Provenge, is there a way for another clinic can find out from blood work or other tests that I am on Provenge?

[Tall_Allen in reply to God_Loves_Me]

Not easily, but I guess they could if they did a blood test looking for amped up dendritic cells.

[jbskiatook in reply to Tall_Allen]

When on Xtandi with good results should I look at Provenge now or when Xtandi starts to fail?

[Tall_Allen in reply to jbskiatook]

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.

prostatecancer.news/2016/08...

[jbskiatook in reply to Tall_Allen]

Thanks something to consider.

[jbskiatook in reply to Tall_Allen]

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.

[dhccpa in reply to Tall_Allen]

Thanks. TA. I'll ask at the clinic. If Red Cross locally does it, so much the better

[God_Loves_Me]

Good Luck Please share update with us.

[dhccpa in reply to God_Loves_Me]

Will do.

[Maxone73]

good luck bro!!

[dhccpa in reply to Maxone73]

Thanks!

[Schwah]

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.

Schwah

[dhccpa in reply to Schwah]

Thanks!

[BigTom123 in reply to Schwah]

How did it work?

[Schwah in reply to BigTom123]

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.

Schwah

[EdBar]

I had the leukapheresis done at a local Red Cross and the infusion done at my oncologist infusion center. That was around 2 years ago.

Ed

[dhccpa in reply to EdBar]

That would be easiest for me if it can be done. I'll definitely ask about it.

[KocoPr]

good luck with it!

[dhccpa in reply to KocoPr]

Thanks!

[Lavender22]

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.

Do keep us posted about the 4th treatment!

e

[Lavender22 in reply to Lavender22]

Ps my husband brought audio books to listen to during the blood draws.

[Mgtd in reply to Lavender22]

Great idea!

[dhccpa in reply to Lavender22]

Thanks, I'll do that.

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.

[Lavender22 in reply to dhccpa]

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….

[dhccpa in reply to Lavender22]

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.

[leo2634]

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.

[dhccpa in reply to leo2634]

No, you're correct. Hold it, hold it hold it! LOL

[dhccpa in reply to leo2634]

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)?

[jedgar1]

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..

[dhccpa in reply to jedgar1]

I'm in Daytona area across the state.

[jedgar1]

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.

Best of luck to you.

[Hidden in reply to jedgar1]

NO EGGS!....LOL

[dhccpa in reply to jedgar1]

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.

[Hidden]

Good luck buddy.....you are my Prostate Hero!

[dhccpa in reply to Hidden]

Quite a title! I'll keep you posted.

[No_stone_unturned]

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.

[dhccpa in reply to No_stone_unturned]

Thanks very much for the tips. I probably will have a port installed.

I usually freeze in A/C, so I'll definitely wear looking pants/sleeves.

Please keep us posted on your own progress.