Rising PSA -- Next Phase of the Journey

Hi all. Zufus, Redwing and others had asked about my situation. I'm seeing an increase in PSA and i just moved halfway across the country.

My PSA has risen steadily from 0.022 this Summer to now at 0.304; I figure i'm at 21 day PSADT (doubling time). My T and DHT levels are both undetectable. Scans (CT and Bone) don't show anything meaningful at this point, so that's still to the good. But overall this is getting real very fast.

My doctors are all in agreement that i go with Provenge and then to Zytiga. However, my insurance co isn't cooperating. Doctor is planning to talk with Dendreon tomorrow and insurance company to see if they'll budge. It's the craziest thing: the insurance requires 'evidence of radiological progression' in order to approve Provenge. By the time we're dealing with anything that the scans show, it'll be too late for the Provenge to work. A true Catch-22. We're arguing the case though ... from what you've all told me and my research it looks like the best thing for someone my age to buy more months or years.

I'm a bit bummed out to be castrate resistant so quickly; but i've got some great doctors in my corner and i'm hoping that by next week we have some good news.

Ray

Provenge is indicated for metastatic CRPC, so I would think that your pathology-proven lymph node involvement ought to be more than enough evidence for them. Pathology proven would seem to be better evidence than radiologically proven.

Alternatively there are some clinical trials you just became eligible for. There are some really promising ones, like cabozantanib, Zytiga+Xtandi, Prostvac-VF, or Provenge+Yervoy.

- Allen

SteelGuy,

Good that you and your doctors decide that next step for you is Provenge. And If you will continue to have difficulties with your insurance company you maybe will consider explore this trial:

Sequencing of Sipuleucel-T and ADT in Men With Non-metastatic Prostate Cancer

It is indicate this study is ongoing, but not recruiting participants, but it will no hurt try to call to different centers and talk to them. What good about it - no Placebo. It will be : Provenge followed by ADT ( Eligard ) or ADT ( Eligard ) followed by Provenge.

www.clinicaltrials.gov/ct2/show/NCT01431391?term=provenge&rank=4

You can also maybe will be interesting to see this :

Utilizing Early Imaging to Detect Metastatic CRPC

"Emerging data suggests that many patients with M0 castration-resistant prostate cancer (CRPC) may actually have M1 disease that has not yet been detected, suggests Evan Y. Yu, MD. During the enrollment process for a phase III trial, approximately a third of patients thought to have M0 disease actually tested positive for radiographically detectable metastatic disease, Yu notes. Patients with early metastatic CRPC are ideal candidates for less toxic treatments, such as sipuleucel-T and abiraterone acetate.

Unfortunately, the case report forms from this phase III trial did not indicate characteristics to help detect patients that have transitioned from M0 to M1 disease, Yu points out. However,another trial was able to find a correlation between the time to the first bone metastasis and PSA doubling time. In this analysis, for the entire population the median time to metastasis was over 2 years, Yu notes. However, for men with short PSA doubling times the first bone metastasis occurred in less than 7.7 months. To help gain a better understanding of metastases, Yu images patients following a continued rise in PSA levels and before changing therapies."

www.onclive.com/peer-exchange/crpc-cases/Utilizing-Early-Imaging-to-Detect-Metastatic-CRPC

My best to you
Hope

Post Edited (HOPENEVERDIE) : 11/22/2013 8:56:30 AM (GMT-7)

Ray,

Can't give you any specific advice, in your difficult situation, but keep on keeping on, and never give up hope. There's got to be the right protocol for you at this juncture in your PC journey.

Please keep us well posted, and we will continue to hope for the best for you.

David

Thanks all ...

Meeting with doc again tomorrow ... i'm hoping there's progress. Some thoughts/clarifications:

* I've got lymph node mets, so i can't get into the no-metastases trial
* Doctor recommends and I agree lets focus on things with proven results: Provenge, Zytiga, Xtandi ... then we'll start rolling dice with the clinical trials and trying the low % secondary ADT: DES, estrogen, Keto, etc. (zufus, i know they worked for you, but that's a lower % game for my high risk situation)
* Gunfighter ... i think i said "blow torch and pliers" ... so far, my insurance hasn't approved that either
* Tall Allen ... I know and you know it's indicated for mCRPC, however most insurance i've seen then says only if "evidence of radiological progression' and they mean after primary treatment or PSA rise of 5!! It's a catch-22 -- by the time i'd qualify, it'd be too late. It's a scam i'm telling you; a way to get out of paying. Death panels. This is actually something that needs to be addressed globally for all of us. I'm appealing now, but everyone else should just get this as soon as mCRPC, period.
* Imaging ... i'm getting more interested in the imaging angle; might want to try the Arizona PET just to see where this is

Thanks all ... this forum helps me fight. Google: "median is not the message" ... we are the right end of the tail.

Ray

*

Sundance ...

Thanks ... It's not the doctor/provider that i need in this case. I've got three doctors across the country, one is director of a major cancer center and all are recommending Provenge as next course of treatment. It's the insurance company. And as i've looked at other insurance company requirements, they really don't seem to make sense either. Some require a PSA increase of 5 points within a month!

Ray

BTW, has any one of the doctors mentioned sodium fluoride, or NaF, PET scans? This is probably the most sensitive, but there also may be problems getting the insurance company to pay for them.

Ted

SteelGuy,
With your "get her done" attitude and "hammer and tong" approach I'm really happy that you are moving ahead! I would imagine(hope) that you had some help "behind the scenes" which would have been more than appropriate!
Godspeed Thor.
Bill

Thanks GunFighter and RedWing ...

Prayer and family and friends are my blow torch and pliers these days ....

And glad to see you guys are hanging in there well with the Lupron ... it's not that bad for me at least.

Ray

logo ...

I think he's talking not about my case in particular but about how the changes in the insurance industry will affect us all; i think it was discussed in a now locked thread ...

Ray