Provenge has been great to deal with, plus no side effects or at least I cannot tell whether any minor side effects are from Provenge or from SBRT radiaiton.
The scheduling in my case has to be a transaction between Dr. Turner's office and Provenge, not directly from me.
It's good that you can have your current insurers Medicare and UHC pay for it this year, (same as mine but I have a different UHC Medicare supplement as opposed to thru former employer), but had that escalation not been successful for you, Provenge has a foundation Patient Access Network (PAN) who would pay any difference.
I assume you are having your Provenge treatments in Orlando. Since I live in a more remote area of Florida, Dr. Turner wanted to control everything in CA with my 3 Friday Lukaphareses at Hemacare in Van Nuys CA and my 3 Infusions in Prostate Oncology's Marina del Rey office.
That is why I am going there Oct 31- Nov 3 for my final Provenge cycle and will meet up with Wampuscats and Tall Allen (possibly TC Vegas) that Sunday at the Inn, but I digress.
Travel expenses in LA are costly but again the PAN foundation thru Dendreon the Provenge manufacturer gave me two separate $2,500 grants to defray my travel expenses.
For Provenge customer service, I call 1-877-336-3736 and follow the prompts (usually option 1) that have always led to a real person who was courteous and helpful.
For PAN, I call 1-866-316-7263 and follow the prompts (usually option 6) and again have always gotten a real person who has always beeen very client oriented.
Once you get by the set up, you can wrap it up over 5 Fridays - Mondays, so about
a month with actual treatments on Friday- Monday #1, #3 and #5, and in your umpiring terminology bye on weekends #2 and another bye on #4.
The ony issue with Provenge is it is hard to discretely measure wherther it is actually working or not, kind of like Cathoilic school where I had to take some things on faith. It is when you do Provenge with something else, like SBRT in my case, that the results are more measureable.
By itself, Provenge may not necessarily cause your PSA to go down, and it may even go up, even though in all likelihood it is working and continues to work on future treatments.
My PSA post-toastie as Tall Allen calls the SBRT portion, is 0.02 but it was very low even when I qualified for Provenge @ 0.05, so no PSA bounce due to the Provenge nor due to the radiaiton. Some folks however do have a PSA ncrease after Provenge, while others do not.prostate-cancer.org/abscopal-effect/
Dr Scholz had this article on the abscopal effect where Provenge makes radiaiton more effecctive.
As I recall you don't have any known needs for radiaiton, just considering the fancy new DCFBC PET/CT scan at NIH, same one Wampuscats are doing. So perhaps you can measure the effectiveness of Provenge cycles via these scans.
Good luck and congrats on your persistence.
Oh, one other thing wear elastic banded sweat pants for the 3 hour Lukapharesis, as once you start, if you have to void, nurses have to bring out the pee bottle since you cannot move you arms that each have a needle in them. Only happened on the first one and I used my Star Wars line, "nothing to see here, move on" thanks to Lupron since 3-28-13.
66 - DX 64 2/13 PSA 3.68 (6 mo doubling) Gleason 9 (4+5)
T1CN0M1B stage IV w. 7 of 12 cores worst ones 70% right PNI
oligometastatic at Dx 5 tumors 1 right sacro, 2 on
T4 & T9, none visible on 5-21-14 whole bodyscan
1st Lupron 4 month 3-28-13,
PSA down was 3.68, Zytiga June 2014
PSA 0.02 and T < 6 on 9/14,
Prostate shrunk from 50.4 to 15.0
Provenge in Sept & SBRT Radiation in Oct
Post Edited (LupronJim) : 10/23/2014 10:01:05 AM (GMT-6)