Moving forward with treatment: Xtandi and Provenge

[Lynsi13]

It's been over four years since my dad was diagnosed with stage 4 PC. It had metastasized to a single nearby lymph node and his PSA was 257. He underwent 6 rounds of chemo and has remained on Lupron and Casodex since. Six months ago his PSA was .07, than three months ago it was .13 and this past week it was .23. So, it's on the move.

His doctor would like to start him on a second line hormone therapy. He's thinking xtandi or erleada as my dad struggles with maintaining his blood pressure and zytiga has been known to increase blood pressure. I asked him about provenge and mentioned the latest study showing that men who received the immunotherapy when their PSA was less than 5 did substantially better then men who received it later. He agreed and is setting us up with a prostate cancer specialist at the Cleveland Clinic main campus to get it rolling.

I really like my dad's oncologist, he's very open-minded, compassionate and truly cares. However his specialty is not prostate cancer. The bulk of his patients have breast cancer. So when I mentioned the latest results about provenge, he was quick to admit that I actually knew more about the latest prostate research than he does. (Thanks largely to you all!) He even came up to me in the hall while my dad was getting his Lupron shot to thanked me for thinking about the Provenge, telling me that it was a good idea and admitting that he would not have thought of it. So while I really like him I wish he were a bit more on the ball.

The good thing is though that we are being referred to a prostate specialist at the main Cleveland campus and I'm planning on talking at length about my dad's care with him/her. From here they will be considered on our team as well and I'm hoping to take full advantage of that!

In the meantime, my poor dad was pretty much lost during the appointment bless his heart! However once I was able to fill him in when we got through the appointment he seemed at peace about it and ready to take it on.

[Patrick-Turner]

As far as I know Provenge gives very mixed results and mean extension of life of 4 months, and its very expensive. But some get much more time and methinks it was because they got Provenge which is treatment of removed white cells, then re-injecting them with cancer fighting capacity. Maybe the white cells fight Pca for awhile, maybe months, but if the cancer fighting character is passed on to new generations of white cells then the cancer fighting capability continues. One man emailed me to say he had Provenge just after its invention at 9 years previously to that email and he was doing fine.

I am amazed your dad had only one met. I thought I had no mets at 6 years after initial treatment in 2010, with EBRT and ADT. Then PsMa scans began finding more and more in next 2 PsMa scans, but now there's less and less in last 2 PsMa scans after having 4 shots of Lu177 and Psa is at 0.4, low for me.

Best results for PsMa scans are with Psa > 0.2 and < 10.0.

Your docs need to also know if your dad has some Pca that does not generate Psa or express PsMa avidity.

Better they know more sooner rather than later. The best doctors don't mind if you have a list of possible treatments they have not thought of. You and them are your *team for dad*, OK. By all means like the doctors you meet, but never assume they know everything. Since the advent of theranostic treatments here with nuclides such as Lu177, my oncologist has had to study it well, and watch what happens to his patients who have it, and I am one of them, and I've been seeing my oncologist for last 6 years, and seen him go from "not my field of expertise" to being right on the ball about it all.

Patrick Turner.

[whatsinaname in reply to Patrick-Turner]

Well said, Patrick. You tell it as it is. I like that. Thank you.

[DoggieDaddy]

Bless your heart for keeping an eye-out for your Dad...want you to know you are greatly appreciated in this community for your eagerness to do the research your doing. Best wishes to you and Dad.

[Zaric]

You’re a good daughter! Bless your dad. Keep him staying positive! How old is he?

[j-o-h-n]

"The good thing is though that we are being referred to a prostate specialist at the main Cleveland campus"

Now you're cooking with propane gas.... Your Dad must be a terrific guy cause his daughter is the cat's pajamas....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/29/2019 6:11 PM DST

[Hidden]

So wonderful that you are his advocate .. This is a great love .. Good luck to both you and your father .. he done good having you ❤️