Finally found a local doctor to talk with about Provenge. Appointment is early Monday morning. For anyone familiar with Provenge, can you suggest questions for me to ask?
My PSA has been rising after six years on Lupron only. 1.92 in June, all-time lows .5 3/2021.
Hi,
Provenge is similar to a biologic. Its effects may not be reflected in your PSA. When I had it, I was initially sent to the American Red Cross to have my veins evaluated. You need a good vein in each arm. Your blood is withdrawn from one vein, the blood is run through a centrifuge separating the white blood cells. The red blood cells and plasma are then pumped back into your body via the other vein.
The white blood cells are sent to the pharmaceutical company and adds some prostate cancer cells, so your body may create anti-bodies to fight PCa. This is infused into your body 3 days later. This whole procedure is done 3 times, I believe every 2 weeks. I had the blood draw at the American Red Cross and the treated white blood cells (Provenge) infused at the MO.
My veins were not deemed strong enough; so I had a port placed in my chest. That turned out to be a blessing. If you have good veins, you are attached to that machine for about 3 hours. You cannot move your arms. You cannot stop to use a bathroom. I understand many men wear depends due to this reason. Mind you, the port has its own issues. I had to cover it when I showered. You have tubes sticking out of your chest. I hope this explanation of the procedure allows you to formulate some questions valid for you.
Where along the way in your treatment did you have it? What treatments came before and after? I'll check your profile as well.
Thanks for your input.
As soon as I recovered from chemo and my leukocytes sort of returned to normal (they never really recovered from chemo), I pursued Provenge. Timing with other treatments isn’t as critical - Having as many healthy leukocytes as possible to be “trained” is the important part. Leukopheresis was no fun for me - unlike MJCA, I did not have a central line and I had a problematic reaction to the blood thinner (a rare side effect). Since my blood values were low, each leukopheresis session took 5+ hours and I had to have 4 instead of 3 (at the end of one session, the bag with my precious cells broke all over the floor…yah, not a great day). There were no issues with reinfusion.
If you don’t get a central line, plan on wearing a diaper. Not great, but that’s cancer life!
Thanks! Interestingly, the Prostate Cancer Foundation guide says Provenge is best if done before chemo, which is why I'm pursuing it now.
Yes. I call prostate cancer the gift that keeps on giving. Every time I speak with my oncologist, he already has the next treatment queued up. I am living for my cancer treatments. I have come to a decision that once I finish Pluvicto, I am taking a one year holiday from additional chemo or biologics. I want to enjoy life a little. Best of luck. If you have additional questions please feel free to message me. I’m always there to help others when I can.
Why don't you get a psma pet ct scan and see where your cancer is? I am on Bicalutamide now in a similar situation like you. The psma pet ct scan identified cancer only I my prostate therefore I irradiated it and after recurrence started Bicalutamide. I believe maybe I had to start Bicalutamide much much earlier.
I'm already on Lupron. PSMA on Wednesday.
You should add Bicalutamide at PSA 1. See MarcBC from Canada profile. He added Bicalutamide to lupron when his PSA raised to 1. His PSA dropped from 1 to 0.2 after 4 month starting Bicalutamide and was slowly rising to 1 in 15 months after the minimum PSA was achieved. Therefore he was 19 months on Bicalutamide. After that 19 months he switched to Abiraterone plus prednisolone.
Maybe now is too late? Just wait until the PSMA pet ct scan results to see if you have cancer and where it is.
Maybe you have only cancer in your prostate because the prostate has a high DHT environment very good for the cancer. By knowing what are you doing I believe that the only visible cancer you may have is in your prostate. You should than irradiate your prostate before the CRPC from your prostate metastasis out of your prostate.
I wish you luck.
Why are you in such a hurry to utilize Provenge when less invasive and most likely more effective 2nd line hormone therapy is available. You PCA seems to be well controlled with hormone therapy.
From what I read, the best time to use is once ADT has begun to fail, while PSA is still relatively low, no pain in bones, etc. I can always do every other treatment following Provenge. SEs supposedly are few and only 3 treatment sessions.
If I could do I would also do provenge as soon someone wants to pay for it.
He is castrate resistant on his current lupron. Yes can add 2nd level and see if and how long that will keep PSA down. If cost is really no issue what so ever Provenge can add years to life, the earlier the greater benefit.
try to keep the collect blood before provenge, You may need same blood in future for other treatment
I didn't realize that. Where would I store it?
I think dr will refer you to store your original blood cell so in future you can use for other immunotherapy. It is important questions before fixing T-cell in your blood.
I'll ask about it.
Expand on this, why would "old" blood be beneficial in the future. What could actually be done with it, and why would his current blood in the future not be sufficient?
Here is the source : healthunlocked.com/advanced...
copy paste from source :
Will be starting Keytruda later this month and MO wants to do apheresis to collect T cells to freeze for possible CAR-T therapy in future, if Keytruda doesn't work well or issues with SEs. Makes sense, but wonder about taking T cells away perhaps less than a week before trying to boost their activity.
In my person opinion, I would collect the original T-cells and freeze them for future treatment like Cart Therapy
The blood is circulated back in you during the collection of white blood cells, then those are manipulated and injected thru an infusion back into you. There’s no blood to keep/store. Plenty of videos on YouTube about Provenge, probably the best is one by UCLA medical, you might come up with questions after watching.
Ed
Thank you.
Agree
Provenge is not supposed to lower PSA. Mine was rising on Lupron after chemo. My PSA dropped and stayed low about 3 1/2 years after Provenge. I got a nice low PSA extension for years. As a disclaimer, it’s supposed to extend life, not lower PSA.
Thanks. Yes, I understand that. Interesting that yours dropped.
The company that brought Provenge to FDA approval (in 2012 I believe)went bankrupt before they could clinical trial it for hormone sensitive PC. So the fact that it didn't lower PSA turned out to be it's deathbed. Now what it is thought to do is kill off circulating tumors, thus preventing or slowing the spread of PC and as we know it the matastiies that kill you.
The belief has been that the earlier the better, and the longer the benefit would be expected.
Provenge doubled their price overnight about 5 or so years ago to near $200k for three treatments. What is the cost today?
I'm hoping with Medicare it's FREEEEE!
Medicare paid for mine in 2021. It ran $104,526.24 for the leukapheresis and processing but the Medicare amount was $36,174. There was a separate $733 for the infusion part. I'm poor so I don't have any co-pays although I'm sure any co-pay would be based on the Medicare amount. Co-pay would depend, I think of what kind of Medicare you have.
I have Medicare plus a supplement plan with United Health.
Exact same here. Since I'm poor (spent down everything except house and car in 2014 to avoid co-pays bankrupting me) I get "extra help" from Medicare that takes care of co-pays 
OTOH I'm too poor to really enjoy my life right now -- attempting to fix that with room rentals and finding side jobs (at 75). Meanwhile doing some volunteering and enjoying parks and reduced entry at museums and zoo.
most recent statistics about prolonging survival. Improvements in the bio- chemistry? I had my Provenge about 10 years ago when I was 14 years out from my original terminal diagnosis in the last century. I have no scientific proof but I swear that treatment saved my life and gave me a better chance at long term survival. Hardest part? Sitting still for 3 hours! Best of luck to you. 24 years and counting.
Hi! If I can ask, any genetic mutation?
Great to hear! I'll sit still without peeing for a day to add years to my life!
Can you comment on what Provenge did to your PSA, slow it, maintain it, drop it? Did it cause any tiredness or strength issues like ADT. Were you able to be off ADT for any time due to Provenge. What was the effect over time? Thanks for any info you can share with us.
As far as I understand he was on ADT all the time, but I may be wrong. It is almost not possible to stay alive without ADT for so long.
My PSA did go down very little (2.57 to 2.37) while I was doing Provenge. I was on Lupron but Xtandi had stopped working so it was just Lupron. Then PSA started up and I then tried Xtandi again to no avail so I ended up going to 4 sessions of Docetaxel then Pluvicto.
PSA was quite low at this stage. Started out at 30. I have been on Lupron continuously since 2000. Can’t tell if Provenge affected fatigue or not. Maybe it was psychological but I swear it provided an immune boost for me. I have not contracted COVID I am now 75.
Hey dhccpa. I hope things go well with the Provenge. This post is very helpful for me because, like you, leuprolide alone has stopped working for me and I have been researching my options, including Provenge. Some of the responses to this post are very encouraging to me. Thank you to you and to all who've responded on this. I will be following your progress with this. As for me, I have chosen abiraterone+prednisone as my next step, and will hopefully be starting it this week as soon as I receive the medication. My PSA & AP have shot up super high while on leuprolide alone and I'm praying that the abiraterone+prednisone will work for me.
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