Need advice for my father, very serious

This is a complicated one. My father has stage 4 PCa. Was diagnosed 2007, put on ADT (Lupron) for several years. Cancer went meta 2013 and is now spread all over. He has been on Zytgia (lasted two months), and Taxotere (PSA kept going up in leaps and bounds).

Because of my own PCa and BRCA2 mutation, I tried to get him on Veliparib, which is a PARP-Inhibitor which has been working for me for more than 2 years now. Since we have the same genetics (he tested positive for BRCA2), I brought him to Dana-Farber to see if he can get the PARP (I got it through a clinical trial which is now closed), and he was told that he can't get Veliparib because it is not approved by FDA.

He did start Taxotere with platinum compounds which is supposed to work with BRCA and lo and behold, for the first time in over a year, his PSA started going down. So by all accounts the Taxotere combo is "working."

However, in private conversation with the oncologist behind my father's back, the nurse practitioner said, "Honestly we don't have anything else for him," and then proceeded to predict that he doesn't have more than a year left.

I'm sorry, but if this was 1995, I would believe it, but I can't accept it. I don't feel like this is denial on my behalf. I really feel that saying that they don't have anything more for him is BS!!!

What about Xtandi? What about Xofigio? What about pushing to get clinical drugs for him? What about compassionate use?

I feel I have to become his patient advocate now because I don't think he is in a position to get aggressive on his own. The medical science behind all this overwhelms him and he doesn't have any instinct for it.

Does anyone know what steps I can take to get him Veliparib outside of a clinical trial despite the fact that it's not FDA approved? I'm a bit in shock now and need some advice on what the first step could be.

Considering that my own cancer could start progressing at any time, and the fact that I want my father to have several more years of life (he's 78), I need some help on this to avoid getting pessimistic.

Thanks.

Hi John, I just wanted to say, that the fact you are being your father´s advocate and helping him through means more than anything to him. There is already so much value in what you are doing, and I am not saying this lightly.

As for the medication, I think one advantage you may have is that you have been successfully on Veliparib for 2 years. You should use this to try to write to the company, Abbvie, I believe it is. Make it a local media story, do you know any journalists? Perhaps, someone or sombody would feel inspired enough to offer your father Veliparib, if this is what could help him, and it sounds like it could. You have proof that you have the same mutation as your father, and that medication has helped you for 2 years. You have some very important facts and proof on your side, use them.

I read so many times of patients being close to death, losing weight, etc, and you give them the right medication, they turn around 180. Hope other will chime in.

I can't add anything but no one wants to hear from the medical profession that there are no additional avenues to pursue. I am happy to see to posted. I have followed your journey since you started. You are a very strong and determined man. I am sure that will help your father!

There is another PARP inhibitor Lynparza (Olaparib) that was FDA approved last year for certain types of ovarian cancer. That means that a doctor can legally prescribe it "off label" for prostate cancer as well. Getting it paid for is another matter. I would start with a phone call to Astra-Zeneca asking for financial assistance with it.

The other option is to see if he can get on a clinical trial - there are two. One is Velaparib combined with Zytiga; the other is an experimental PARP inhibitor, Talazoparib (BMN673). The one with Zytiga uses that as the control, so there's a risk he wouldn't get the PARP inhibitor. In the other ones, everyone gets the experimental drug. Call the contacts in the following and ask if your father qualifies (these are all in the northeast):

Pilot Trial of BMN 673, an Oral PARP Inhibitor, in Patients With Advanced Solid Tumors and Deleterious BRCA Mutations

PARP Inhibitor BMN-673, Carboplatin, and Pa***axel in Treating Patients With Solid Tumors That Are Metastatic or Cannot Be Removed by Surgery

Abiraterone Acetate and Prednisone With or Without Veliparib in Treating Patients With Metastatic Hormone-Resistant Prostate Cancer

As for what else, there are a few options. Jevtana often works when Taxotere no longer does, and the problem with taste buds isn't as severe - other SEs, just not that one. Maybe that combined with a platin. The combo of chemo with a PARP inhibitor would be ideal.

Xtandi doesn't work well after Zytiga fails - they create cross resistance. There are third line hormonals like estrogen patches and ketoconazole.

Xofigo is an option if he can handle the myelosuppression, as is also true for chemo.

The combination immunotherapies in clinical trials may still have some activity, but without the PARP inhibitor, I don't know how much he'd get out of it.

- Allen

You are a very good son. So many parents fall thru the medical cracks because they have no one like you to help navigate through the medical treatments and options. And we are lucky to have someone like Allen on board, who has expert knowledge of treatment options. Take care and hang in there....Tim

John,

I would investigate the possibility of using estrogen patches (at 1mg dosage or similar). These have been used as third-line hormonal therapy for some time, and are also being studied in various trials.

Depending on side effects and his food intake risk assessment, he could consider taking Zytiga with food. This is not the standard way of intake. However, this study has shown that for some patients, taking the drug with food massively increases its potency in the body (more than 10-fold), resulting in more effective anti-PC response: prostatecancerinfolink.net/2015/05/12/abiraterone-acetate-and-the-food-effect/

Ketoconezole has been reported to work, when Zytiga does not. So that would definitely be another avenue to pursue.

Lastly, Xtandi's manufacturer has a patient access program, which provides the drug for free. It requires an application, which is not complicated to go through. Though the implications for cross-resistance are there, it might be worth taking, if you can get it. Remember with Xtandi, it takes at least 4 weeks for the drug to reach maximum therapeutic effect (steady state in the body), so stopping it before that is premature (unless warranted by side effects).

You're so right not to accept the nurse's "prognosis". There's more to be tried, fight on!

Arthur

My father was his oncologist and said, "My son's doctor is at the ASCO Conference in Chicago this week" and the doctor replied, "That's more than I want to know," and changed the subject.

Since getting cancer, I've come to appreciate that someone with a medical degree and years of experience with a practice is not necessarily fighting for their patient's lives.

For the record, my father is going there for his Lupron and XGeva shots. For all else he is going to a specialist at Dana-Farber.