How To Gain Access to All The New Dru... - Advanced Prostate...

Advanced Prostate Cancer
10,760 members12,899 posts

How To Gain Access to All The New Drugs Without Being Castrate Resistant


If anyone knows I would sure like to hear Doc says I am blocked from everything even Provenge ...the idiots at the FDA mandate CR on Lupron...when all these new drugs would work far better and longer if you are not Doc says Xtandi does not lead to CR and when it fails Lupron still works....I want to go the route of Xtandi - Apalutamide - Darolutamide - Proxilutamide and not have some SOB at the FDA telling me I first have to become CR on Lupron first...I was lucky and was able to buy some Xtandi cheap....I will go on DES before I ever go on Lupron


14 Replies

Very interesting point of view.

My Urologist--after my RP wanted to put me on Xtandi--said he had a way to get it with some foundation money---Never took him up on it--I see him this week coming up as to me doing my monthly PSA and T and E2 blood tests. I will ask how he gets it.


podsart in reply to Nalakrats

Good point; Dr Myers had a way, wish I asked him before he retired

There is the PAN Foundation but it has to be prescribed. Have you considered orchiectomy?

This is one of my biggest frustrations - Getting access to newer drugs when I’m being told I can’t as I don’t have a spiking PSA or “enough” mets...

Minipulating the the luutamides in the off cycles of adt worked well for many. I tried it with casodex for 7+ yrs and considering xtandi , but we do have that problem of moving these drugs up early

The FDA has very strict regulations. I was on a study for a drug company that wanted to use Zytiga "before" patients had chemo. At that time doctors could only use Zytiga after chemo. The no brainer is of course Zytiga works on patients before chemo. This is the FDA regulatory world the drug companies have created. The FDAs mandate is to protect the profits of the drugs companies. This system prevents some upstart from coming up with a new drug that would be cheaper and better than the expensive stuff big pharma is making.

If you don't think the big drug companies could not march into the FDA building in Washington and demand they get rig of those cumbersome regulations, I have a bridge to sell you.

The Bloody Pharma companies are driven by the almighty $$$. We have to find some way of putting more money into research to counteract this. I will be looking at fundraising in Australia for prostate cancer as it seems to be a hidden epidemic here... Everyone talks about breast and cervical cancer but not prostate.

I seems men don't talk about medical maladies like women do. At least here in the US that is the case. I have attended several conferences where at least part of the agenda was spread the word and don't be shy about Prostate Cancer.

At least there has been movement on some drugs now available before evidence of metastasis. That is helpful to me at least and going in the right direction.


I'm not CR, but when I had an issue with Zytiga at the beginning (rising liver enzymes), my MO wanted to put me on Xtandi right away. I share your frustration, especially given the cost of the drugs if used off-label. Do you think another MO would be able to justify it for you to the insurance companies?

gusgold in reply to snoraste

No...MO tried but Ins Co has access to medical records...requires rising PSA on Lupron

I think PSA not only has to be rising but also above 2.0 to be consider CR

Have you considered lying? Report an allergic reaction to Lupron and no one can question it. Hard ball

You may also like...