Is there an end to this train ride? and how will they know?

@lacraig1 "My Zytiga costs $1500 a month". I'm thinking you may need to shop around. I pay $76 a month after I was paying much more than that from a place my doctors sent me to. I now go to one of my local supermarket pharmacies for mine. Talk to local pharmacies and ask them what kind of discounts are available.
Good luck!

@lacraig1 "My Zytiga costs $1500 a month". I'm thinking you may need to shop around. I pay $76 a month after I was paying much more than that from a place my doctors sent me to. I now go to one of my local supermarket pharmacies for mine. Talk to local pharmacies and ask them what kind of discounts are available.
Good luck!

@lacraig1 my husband is getting zytiga too and next year insurance doesn't cover it and he really doesn't want lupron.... anyways the office said there might be manufacture help in some way, we'll see when the year rolls around.

I'm almost exactly where you are. I had RP surgery in November 2024, and have a low but rising PSA. We made the decision to move forward with radiation because of some of the adverse factors (bladder neck invasion, cribriform and others) that made recurrence likely. I had the Lupron Oct. 15 and started radiation this week. No issues with the radiation after 3 days but the hot flashes from Lupron are miserable.

I've pretty much convinced myself that dealing with cancer and the regular testing is my new normal. The guys in my monthly support group have been dealing with this for 5-10 years. The testing is less often for them, but it's still there. I'm 68 so 10 years of testing would make that 78, which is about as far into the future as I'm willing to consider.

The nurse yesterday recommended a product called Cylease from a company called Boiron. The flyer says it's for menopausal women but I'm planning to try it. I wake up 4-5 times a night with hot flashes or night sweats, so I'll try anything at this point.

@anosmic1 I’m 78, psa 54, waiting for 6th infusion of pluvicto in pain for12 weeks, 2 mg morphine helps a little.
Anyone wth similar symptoms please let me know

@jxj
Sounds like they found your prostate cancer when it was pretty advanced. Most people with prostate cancer don’t have any symptoms at all, even if it’s advanced.

Pluvicto only works really well on about 1/3 of people OK on 1/3 of people and not at all on 1/3 of people. Since you are already preparing for your sixth infusion, it sounds like it’s not really working for you.

Chemo might work better since it doesn’t have this issue with only working real well with a small percentage of people. Have you discussed chemo with your doctors? Is that an option for you? You could get chemo with carboplatin which is more aggressive in killing the cancer cells. Just bringing this up as things to talk to your RO doctor about.

Are you on ADT and an ARPI (Zytiga or a lutamide)? They can shrink the metastasis and stop them from spreading and reduces the pain for most people.

You ask...

"What will it take for doctors to say that you are cured? Or even in remission?"

While there is a school of thought that says advanced PCa may be "cured" in certain situations, the general consensus is no, it can't, currently.

The discussion shifts to managing advanced PCa. That managing includes determining what clinical data constitutes a need to treat. If so with what, for how long, intermittent or continuous, if the former, what's the criteria for coming off treatment...

"Will I be seeing oncologists and having PSAs the rest of my life?"

Not to be a downer, but, probably...

If your treatment is for a defined period then there is decision criteria associated with that - Grade Group, GS, PSA doubling and velocity, number and location of metastases, genomic testing results...

If intermittent then terms like progression free survival and radiographic progression free survival enter the discussion.

How long might the break from intermittent treatment be? Nobody can say, too many variables, baseline T, age, lifestyle, type of treatment - doublet, triplet, MDT only.

I am 12 years in to my membership in this club. Three of those have been actively on treatment.. My breaks from triplet and doublet have been five years and currently at 20 months.

During those breaks I have had labs, jabs and consults every 2-4 months.

I have lived a lot in those 12 years... birthdays, anniversaries, vacations, daughter graduating from high school and college, celebrating World Series, Super Bowls and NCAA basketball championships of my favorite teams, concerts, holidays. Likely you can too.

There are statistics about 5, 10, and 15 year survival with PCa. As with any statistics, caution,, they are population based and may be dated. Kind of like the mileage sticker on a new car...estimated..,your mileage may vary!

And, let us not forget, some 35k die each year of PCa here in the US.

So, yes, you are likely dealing with this the rest of your life. It may be an oxymoron but that's the "good" news...!

Kevin

so the train doesn't stop until the passenger dies.