Hope to start Provenge

My PSA is progressing while on Lupron moving up from 0.09 to 0.74 in the last 4 months, my oncologist and I are discussing Provenge then followed by Zytiga......I have done some research and that makes complete sense to me. However I have to do a PET CT BONE SCAN next week...my doc says I need some evidence of mets before we can start the Provenge ( I did have documented prostate cancer mets to my lymph nodes , two of which were removed during my colon resection) Also I have been having some low level hip pain for the last 6 weeks... hopefully not a met at my current PSA level !! Anyway kinda looking where guys were status wise when starting. Does a bone met cause minimal pain ? What were your qualifications for getting Provenge approved ?

Thanks

My husband also has had minor hip pain and is worried, even though latest PSA test is undetectable. I guess the good thing is that a painless scan can quickly put these fears to rest.
I don't have any knowledge to impart but just wanted to admire your spirit in the face of your many setbacks. You certainly have faced some serious side effects of this cancer and I am in awe of your uncomplaining perseverance.

Ziggy ...

Just went through something similar ... this is what happened to me fwiw:

PSA was rising even on Lupron. went from .03 to .30 to 2.2. We started asking for the Provenge when it got to 0.30. The insurance company wanted to see 'evidence of radiological progression'. So i was sent to get the CT scan and the standard bone scan. Both came up negative. (Previously, before radiation and HT, they'd shown extensive lymph node mets.

I still pushed for Provenge, as should you. The NCCN lists Provenge as category one for mCRPca ... it doesn't say anything about having growing mets. I can give you a copy of the letter used to get approved; i was pretty compelling. My doc sent the letter, and it was approved. But it took a couple of months. I know that kayakBob was in a similar situation and it took a number of appeals to get his approved.

Before starting Zytiga, with the PSA still going up rapidly I took the opportunity to get a C11 scan and a F18 bone scan. Both are much more sensitive. Those scans found a bone met on my collarbone that the other scans had all missed for two years. So don't trust the low quality scans too much. If you have the chance to find the location and it's a localized,treatable spot ... that's a bonus. The spot is a touch sore, but is it from carrying backpack,or exercise? who knows ...

Hope my experience can help some.

Ray

Thanks guys for the input.....it will be helpful when I meet with the onc later this week.