IMMUNOTHERAPY Club (Provenge/Prostvac)

Greetings,

Anyone else out there with experience with Prostvac?

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age 63, diagnosed 8 years ago, gleason 9, IMRT, ADT and Turp. Now failed Firmagon- Psa currently 14 with 5 weeks doubling time. Bone scan shows skeletal mets.

Hi Adjust,
Thanks for the info.
I am 1 month into the Prostvac trial, and trying to figure out if I am in the placebo arm, or not. I want to give it a chance to work (and receive more booster injections), but don't want to wait too long in the face of rising PSA and some pain from bone mets before starting the next treatment (apparently Zytiga).
After the initial injections I had almost no reaction, but the second set (after 2 weeks) caused local pain, swelling, rash, and after 2 days- aches in all of my joints as well as bouts of uncontrolable shivering. Day after that- felt much better! Can I assume that this is a positive reaction to the immunization (and a sure sign that I am not on the placebo!)
Any insights appreciated!

Looks like the chemo/xl184 is doing good things for you!

Health!

Eitan

Eitan,

I never experienced aches in my joints, nor had bouts of uncontrollable shivering, but I did have the local site injection symptoms you discussed. I also had a rash over my entire body shortly after the first shot, but it gradually went away. It is not unusual for each individual to experience different SE's from the various meds we take.

The first trial I was involved with (Prostvac/Xtandi) was a 50% randomized trial, but it was not “blinded”, so there was no placebo arm. Basically I agreed to be part of the trial, they sent my name to some independent party, which came back in less than a ½ hour letting me know that I was in the arm to get Xtandi & Prostvac vs. the Xtandi alone arm. I was happy to be in the arm that got Prostvac, but recognized that Xtandi alone was also a very good therapy, so either arm was a win for me. The second, and current trial, was a phase 1 trial and all patients that enrolled got both XL184 and docetaxel.

I have no idea how they handle trials that are blinded and include a placebo arm. Maybe someone can answer if the placebo is likely to produce symptoms that are similar to the trial drug. Can you share more about the trial you are on? Does the arm getting the placebo get any secondary therapy?

Just FYI, for some therapies PSA response is not a good marker of disease progression, so you have to be careful about judging your response based upon that number rising. Most doc's, including Myers, rely upon radiographic scans as the only accurate way to measure a persons response to a therapy.

Allen,

Shortly after coming off the Xtandi trial, I saw an article on Dr. Antonarakis study of AR-V7 and Xtandi and immediately forwarded it off to the NIH trial docs, asking them if they collaborated with other institutions on matters like this (hoping I could have blood samples sent to Hopkins for testing). They said they would look into it, but I have not heard anything about it since. I guess I missed the article concerning AR-V7 and abiraterone. This is somewhat concerning, as I always looked at aberaterone as being one of the bullets in the chamber. I think I'll press a little harder for some collaboration on my case. Appreciate the info and link!

Post Edited (adjust) : 9/28/2014 3:15:01 PM (GMT-6)

I recently went for my first infusion of Provenge. I can sum that experience up in one word HORIFIC!!! The infusion went off without a hitch, 15 minutes after the infusion I'm screaming for somebody PLEASE HELP ME, I was experiencing the worst back pain I have ever had in my life followed by take your breath away pain in the back followed by crushing pain in the chest so severe I thought my heart was going to stop, this lasted (from what my wife told me) a half hour to 45 minutes until the Morphine they injected me kicked in, then I was left sitting quivering in the infusion chair until the Paramedics showed up along with the ambulance guys as well as the fire dept. Long story short, ended up in the ER for observation. Doing fine now but I know I won't be a lab rat for another infusion. End of story

I had my second infusion of Provenge last Friday. I will get my third and final infusion on October the 2nd. So far so good. I haven't had any side effects from the treatment.

CADguy

Is this thread still active?

If so, please add me to the club. We are shooting for a June/July 2017 date to begin PROVENGE.

Thanks,

Tony

I had Provenge June -July 2016. My veins were and are very good so no picc line. I did not like the 18 gauge needles, laying still for three hours was trying but got through the three sessions of harvesting of the white cells every other tuesday and that friday infusion of the of the powered up T-cells. I did get sick the night after the last infusion but was fine the next day. To be honest I have no idea how beneficial this therapy was. Since then my psa was 7 in September then up to 14 in February and last week up to 20.

I did 2 of 3 Provenge in October 2016. Experienced side effects during the leukapheresis process each time, due to the citrate anticoagulant used in the process. I could go into the details if anyone wants to know. My first infusion of Provenge was a piece of cake. 36 hours later I felt quite bad, fatigued, and weak, which lasted for 3 days. The second infusion went OK, but I (coincidentally?) went into Atrial Fibrillation with Rapid Ventricular Response about 20 minutes afterward, and spent 8 hours in an ER until the rhythm was normalized. Did not feel the fatigue, weakness quite so much afterwards, as the first time. Two days after reinfusion #2, I developed a peripheral vein blood clot and phlebitis in the left arm at the site of the large bore needle work during the prior leukapheresis/infusion work, involving an accumulative 8 hours of work in that vein over a 2-3 week period. Clot was cleared after 4 days with hot wet compresses. I decided, and doctors concurred, that I probably had enough Provenge, and, all things considered, could skip Provenge #3.

Charles