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Posted 3/3/2016 2:48 PM (GMT 0)
I'm all set up for provenge now, will harvest my first blood cells next Friday. Has anyone else out there done provenge? If so, any advise on side effects or effectiveness?

I'm 62 going on 11th year with advanced prostate cancer. Gleason of 7.5 with original finding and spread to the testicular walls. Did chemo last year, whereupon the psa dropped to 1.8 from 35. Then up to 2.5 and then 13. A very rapid rise for only three months :-(
Posted 3/3/2016 6:52 PM (GMT 0)
Todd1963 is a Provenge guy, among others.
It typically extends survival but doesn't lower PSA.
Good luck with it.
Posted 3/3/2016 8:50 PM (GMT 0)
I completed the Provenge treatment in May of 2015. No side effects, no problems. PSA has stayed steady at.06 ever since and am getting ready to start my first ADT2 vacation.
Posted 3/3/2016 9:33 PM (GMT 0)
In theory Provenge makes all your future treatments more effective, but its impact does not necessarily manifest itself in lowering of PSA.

In my case I did Provenge in conjunction with SBRT to measure the combined effect since there is no reliable metric for Provenge as a monotherapy.

I had no side effects, last infusion 11-03-14 and PSA remains < 0.01. Started IHT at end of April 2015
Posted 3/4/2016 12:16 AM (GMT 0)
I did Provenge therapy three years ago. I had no side effects. The cell collection was the most difficult part. The sweet little nurse worried that I might be cold so she turned on the blood heater. Apparently she didn't realize that I had been on hormone therapy for five years and was prone to severe hot flashes. It's not a bad procedure when you're having the pheresis done. it is just time consuming. The procedure lasted between three and four hours. The infusion only takes a couple hours. All in all my Provenge experience was extremely positive. actually thinking that May 1st will be four years since I did Provenge. My PSA has been undetectable for the last 3 1/2 years now. Is far as I'm concerned the treatment you were getting is the best bang for the buck. Good luck on your treatment Todd
Posted 3/7/2016 2:13 PM (GMT 0)
Thank you all for your positive remarks. My attitude is certainly improving with this support. My best wishes for you all

Dennis
Posted 3/8/2016 10:42 AM (GMT 0)
I have a question for the Provenge guys. 61yo with no medical problems. I was diagnosed with metastatic prostate cancer in Dec 2014 (age 60). Gleason score 7-8 in all 10 cores. Questionable metastasis to two local lymph nodes in the groin on PET scan. No bone involvement. PSA was 147 at diagnosis. I started on ADT right away and then EBRT (radiation) to the prostate and lymph nodes which finished in March 2015. I had a PET scan after that which was clear. My PSA dropped to 0.5 on the ADT. I ABSOLUTELY could not stand the ADT so my doctor and I decided to try intermittent therapy and my last dose of Eligard (Lupron) was Sept 2015 when my PSA was 0.5. In November my PSA was 1.4. My next PSA was done in late Feb was 15. My doctor says it could be two things. A PSA bounce following EBRT but more likely active cancer. I am scheduled for another PET scan next week. We are going to hold off on the hormone treatment for another month to check the PSA velocity as long as the PET scan is clear. My wife is a nurse and she was looking into Provenge. Supposedly, I have to be hormone resistant and there are no clinical trials for hormone sensitive. Can any of you tell me your experience in getting the Provenge?
Posted 3/8/2016 5:56 PM (GMT 0)
That sounds similar to what I was told, Hormone refractory and also that I needed detectable mets. My Uro was pushing for the Provenge, the MO said, something new ( a met possibly) was visible on the cat scan. that was good enough to get me qualified for the treatment. They both thought I was the ideal candidate for it. High risk, low volume young (58) and healthy (except for ADT2 related). Hope that helps.
Posted 5/13/2016 6:56 AM (GMT 0)
So, let me get this straight. You are still hormone sensitive but because you had something new on your PET scan, they approved it?
Posted 5/13/2016 6:58 PM (GMT 0)
Ferb40
Great progress and treatment so far, Just wondering about your latest update and PSA. Wish a could have tried the Provenge route. Take care, keep the faith!
Dan in So Cal
Posted 5/13/2016 8:12 PM (GMT 0)
Provenge 4 years ago. Currently on Zytiga but psa has been undetectable for 3 years. Psa was rising on Provenge but psa is not a good metering tool for Provenge effectiveness. I just couldn't handle watching it go up. No side effects. Also this is weird but I haven't had a cold that lasted more than a day or 2 since starting Provenge. Probably no connection but still strange.
Posted 5/13/2016 8:16 PM (GMT 0)
In order to qualify for Provenge I needed 2 PSA increases at least 14 days apart, and pulled out all the stops.

Date PSA Testosterone

20140710 <0.04
20140731 0.03 <3
20140812 0.04 8
20140826 0.05 11

My July 31 test did not equal or exceed 0.04 but did serve as a new baseline of = 0.03.

I did my August 12 test the same day as my endorectal coil exam which can't be good for PSA reading, and it only came out = 0.04.

On August 25 I did a 16 mile bike ride and sat through each bump or pot hole rather than getting up out of the saddle, and achieved = 0.05.

Like Todd I had no adverse side effects, other than the length of apheresis and having to watch a movie with a needle in each arm.

Wear sweat pants with elastic band in case the nurse has to bring you a bottle to pee into. For the Monday reinfusion there is only one needle so you can wheel the unit into the restroom with you.

Double up on calcium a few days in advance of the blood draw. TUMS tablets have a lot of calcium or you can just use calcium supplements.

If your insurance does not cover all your expenses, there is financial assistance available. Medicare covered all the medical costs but financial assistance did pay my travel expenses from Fl to LAX as I was having SBRT at UCLA concurrent with the Provenge.
Posted 5/13/2016 8:22 PM (GMT 0)
Nomar,
Let me get this straight. Your PSAs were 0.03 to 0.05??

I guess I thought they had to be greater than 0.2 .

If so, I'm switching to the ultra-sensitive test.
Posted 5/13/2016 8:40 PM (GMT 0)
Dan, they had labeled me castrate resistant when 6 months after radiation PSA was back to detectable at .05 and then climbed to .07 on 2/15 and 4/15. since Provenge it went to .06 5/15, 9/15, 1/16. with things stable they decided it was a good time for an ADT vacation and I received my last Lupron shot in Jan, and stopped the Casodex as well. It gets better after that, PSA dropped to undetectable at the 4/16 follow up.
Posted 5/14/2016 2:42 PM (GMT 0)
Apparently the rule is two PSA increases. So yes in this case ultra sensitive makes that more achievable than having to go from <0.1 to 0.1 to 0.2.

The only thing my medical oncologist had to attest was that he had prescribed Zytiga and my PSA continued to rise. I made sure not to tell him that I had temporarily suspended taking the Zytiga so as to not cause him an ethical dilemma. I still had the lingering effects of the Lupron shots when the PSA increases occurred.

I resumed taking the Zytiga the day I achieved the 2 PSA increases and have remained undetectable ever since. A year ago I went on IHT and suspended both the Zytiga and the Lupron.

Depends what your goal is at time of measurement as minor fluctuations that still round to <0.1 can cause a lot of guys undue stress as they show an increase. So if your goal is to not have an increase the regular PSA test is preferable under the theory that PSA rises slowly and it only matters when it consistently grows from <0.1 to =0.1 at which time you may want to convert to ultra sensitive to more closely monitor the trending.
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