How to pay for Provenge?

[sammamish]

I am looking to get early Provenge. Studies suggest, the earlier you get it, the better the results. Problem is NO insurance will cover it unless you have a rising PSA under ADT. I am only 3 months post RP(BTW mets were found in neighboring lymphs),so my PSA is sti ll non detect, but know I have metastatic disease so I want to hit this hard and early. Does anyone have any suggestions on how to mitigate an out of pocket expense of 100K besides getting lucky on a power ball ticket? Are there any foundations, or perhaps wheeling and dealing strategoes that can be done with providers, etc.? Any hopeful stories greatly appreciated.

[YostConner]

The manufacturer has an assistance program. I don't know the rules, but it may be a good place to start.

[Tall_Allen]

Before you take out a second mortgage, it MAY be too early. When they tested Provenge in Hormone-sensitive men, they found no improvement in the biochemical failure rate:

clincancerres.aacrjournals....

There is a clinical trial for Provenge for men on Active Surveillance - results expected in 2023.

My guess is that there is an optimal time when the tumor microenvironment makes it susceptible to immunotherapy.

[sammamish in reply to Tall_Allen]

Thanks for the citation Tall. I noticed the statistical power of this study was weak with only 59 participants, hence the high P values, however the hazard ratios clearly trend towards early intervention,, even in this limited study. So I still wonder how to navigate financial challenge. Any ideS?

[Tall_Allen in reply to sammamish]

p=0.74!! That is not the way to deal with a research study - to imagine the results are the exact opposite of what they actually are. I think you are engaging in wishful thinking.

[sammamish in reply to Tall_Allen]

True, .74 is only 1 quartile out, however the doubling time results were compelling were they not? Sipuleucel-T patients had a 48% increase in PSADT following testosterone recovery (155 vs. 105 days, P = 0.038).

[Tall_Allen in reply to sammamish]

Here's what they wrote: " The time to BF was the primary efficacy endpoint of this study; the null hypothesis was that there was no difference in time to BF between the treatment arms." That was what they found - no difference. I think you're trying to make a silk purse out of a sow's ear.

There are some good biological reasons why immunotherapies may not work as well if used too early. Prostate cancer creates an immunosuppressive microenvironment. With the genetic breakdown that occurs over time, the cancer looks less like "self." With time and systemic therapy the immunosuppression may be mitigated. Immune cells do not infiltrate into tumors as well prior to systemic treatment with hormonal agents. immune therapy may be optimized by use with androgen deprivation, radiation and chemo. Some inflammation (but not too much) seems to be necessary for immune infiltration.

You should be aware that not everyone believes Provenge is beneficial at all (not me). I spoke to the head of medical oncology at Cedars last week. He thinks that the study design created a bias because the control group had dendritic cells withdrawn from each patent, but those dendritic cells were allowed to degrade. He noted that the control group had worse than expected outcomes, possibly due to their degraded dendritic cells, which made the treatment group look better by comparison.

[sammamish in reply to Tall_Allen]

I agree lack of good antigen presention and or checkpoint expression would be mitigating to sipT therapy, however I have Gleason 9 with an atm germ line defect. I have no doubt I will numerous mutations as soon as I get tumor mapping. Have to figure out how to pay for that or get insurance to cover as Regency blue cross is rejecting coverage presently. Meanwhile, most of the studies on sip t seem to suggest it has little or no effect on PSA but more importantly... OS. OS Was much greater than the 4.5 months overall average when initiated sooner rather than later. Something like 16 months or more. I do recall a lot of these folks had been through various treatment already.

[Tall_Allen in reply to sammamish]

A germline defective ATM gene is rare. In case no one has mentioned this, you should not have radiation of any kind. You lack the capacity for healthy tissues to recover after radiation. If you had two copies of a defective ATM gene (which you don't), radiation could be fatal, and even sunburns could cause serious injury. With one copy, radiation might be injurious but not fatal.

Have you discussed treatment with carboplatin? You may be able to get in on a clinical trial for a PARP inhibitor. Here's a list of clinical trials that may be appropriate:

pcnrv.blogspot.com/2018/02/...

[charlesmeyers1964 in reply to Tall_Allen]

here's how i feel tall allen. if a person has gone thru what meds that are available where they live with the help of a medical insurance plan with supplement as will ones psa has grown due to the lack of finding zytiga and it cost them o whats the problem. everyone at some time is going to have no back up and if one feels good before the test and after, again i say gto for it. remember i've been fighting the cancer for 10 years i feel great and i would like to live a bet longer. i've heard there are new drugs out there where they guarantee ones live by a couple more weeks and they are very expensive i perfsonaly would say (no way). just my opinion

charlie

[charlesmeyers1964 in reply to Tall_Allen]

i was told it doesn't bring down the psa only somewhat but that isn't its goal. what it does do is build up ones immune resistance to live longer and continue on meds that helps like zytiga,lupron/eliguard shot and the PROVENGE makes living longer and more healthier.some of what these guys have mentioned like lu-177 isn't available in my area. so some drugs are available and some aren't so unless your rich and can travel u deal what is available. i've gone thru most of the normal treatments for the past 10 years and some of these guys again are complaining on psa's lower then the normal range of males without cancer and its so laughable .

charlie

[E2-Guy in reply to charlesmeyers1964]

Charles, I don't think that you can make PSA comparisons between PCa patients who have undergone treatments and men who don't have PCa. For example, a post RP PSA of 0.2 indicates biochemical failure whereas a middle age man with a PSA of <2.0 is usually considered normal. That doesn't mean that he will never be diagnosed with PCa; however, most statistics show that only ~one Caucasian man out of every six will ever be diagnosed.

[charlesmeyers1964 in reply to E2-Guy]

if a male psa is will in the normal of no cancer why put your body,plus added expense. most doctors start checking ones psa 1 x a year after 55. if u again i repeat is within the normal range range of not having it just go ahead and get tested once a year write it down and see if it grows if so then thats the time to get pro-active i feel.

charlie

[Tall_Allen in reply to charlesmeyers1964]

It is NOT normal for a man who has been treated to have a PSA in what you consider to be the "normal range."

[tango65]

Look for trials with the vaccine Prostvac. I does not work in castrate resistant prostate cancer but it does work in hormone sensitive prostate cancer. I had Prostvac in 2007 when my cancer was hormone sensitive and it stopped the cancer for 6-7 years.

clinicaltrials.gov/ct2/resu...

[Tall_Allen in reply to tango65]

It does not work in metastatic castration-resistant men:

bavarian-nordic.com/investo...

And there is no evidence that it has any effect on men with hormone-sensitive PC - that's what they are doing clinical trials to determine.

You have no way of knowing that "it stopped the cancer for 6-7 years." How could you possibly know how the cancer might have progressed if you hadn't taken it? It's to get away from spurious anecdotes like that that they do clinical trials.

[tango65 in reply to Tall_Allen]

I agree with you abut the need to do prospective control studies and in staying away from anecdotical information. I was just describing a personal experience with this vaccine.

My PSA was increasing for 1 year with a PSADT of 3 months before having the vaccine. After the vaccine the PSA did not double until 6 years later.

I was not the only patient having a stabilization of the PSA after the vaccine. Sixty three percent of the patients in the study did not have progression of the PSA at 6 months.

ncbi.nlm.nih.gov/pubmed/255...

This is another study describing stabilization of the PSA up to 25 months after receiving the vaccine.

ncbi.nlm.nih.gov/pubmed/108...

Looking forward to the data of phase III studies of Prostvac in hormone sensitive patients.

[Tall_Allen in reply to tango65]

Me too!

[Fairwind]

In the States, the insurance companies pretty much control which treatments you can have and which ones you can't..Unless of course you can afford to be self-insured...

[charlesmeyers1964]

so your not 62-65 on medicare if that is true i doubt u could get PROVENGE. my treatments were either 72ending in 43,000 one time or for all three treatments. BEING ON MEDICARE/SUPPLEMENT I PAID 0. u didn't mentioned what your psa was and what treatments you've had. if not old enough to qualify for ss i would say u get nothing. pay for it on your own is my suggestion talk to a qualify specialist on what qualifications u need.

[larry_dammit]

A lot of drug companies have a assistance program to lower the cost or get it for free. We just received a years free for zitega from Johnson and Johnson for my father who is on SS and couldn’t afford the cost. Contact them or have the DO contact them to see if you qualify.

[Break60]

Why not just hit all pelvic lymph nodes with IMRT and go on ADT? Why go to provenge so soon?

[sammamish in reply to Break60]

ATM germ line defect, probably not wise to radiate

[Patrick-Turner]

If you own a house or an apartment, maybe get a reverse mortagage loan where a bank pays for the medical treatment but takes the cost out of your estate when you die, and charges a high interest rate between now and then.

If you have no property and no money, and no lending entity will lend you the dough, knowing you might die, then I think you'll have to join most ppl and settle for continuing ADT and other cheaper things for years. Provenge does not have a high success rate with average extension to lifetime of 4 months. A few men have had 9 years, ie, they have survived since it was first used, but banks et all will not pay because the odds in your favour are so low.

I begin Lu177 in 3 days, its $40,000 for 4 injects. It gives average life time increase of 14 mths. I can pay, but those who cannot have to settle for chemo which does not have a high success rate with mets in bones like mine.

But yesterday, I cycled 70km, the day was good on a bicycle, and I am 72, and still able to live OK. Psa is about 45.

Patrick Turner.

[Magnus1964]

Have your doctor contact the Patient Access Network. They can provide Provenge age no cost. You will have to provide a copy of your 1040. Personally I don't think you should go on provenge till you have some significant PSA readings.