FOMO about being more aggressive with options

[CantChoose]

We have a great MO, one recommended by the board here. Every time my husband sees her, I ask him to ask about doing treatments such as LU177 now, while the cancer has not mutated. Her response is always "there will be time for that down the road."

He's doing chemo. PSA has dropped to 3 from 280. ALP is closer to normal. Should I just be happy?

I feel panicked that we're not doing enough. SOC always ends in death goes through my head every morning.

Not sure if I need medical advice or emotional support, lol.

[Tall_Allen]

Great response to chemo! I suspect there's a synergy between chemo and Provenge.

[CantChoose in reply to Tall_Allen]

He's 3 sessions in already. We can ask, but not sure we could line up approval fast enough. Do you think there's as much of a benefit following chemo?

[Tall_Allen in reply to CantChoose]

Not sure.

[TNCanuck]

Great news on the PSA drop! I wanted to throw multiple treatments at my husband's cancer too.

If you're like me, you need medical advice AND emotional support. Make sure to take care of yourself. We're here for you.

[MateoBeach]

Appreciate the feeling, the uncertainty around doing more earlier. That a treatment that makes some difference in late stage disease might make a greater difference if used earlier. (Deflecting the curve of progression.) It just isn't known.

As for Lu-PSMA, being not-yet-approved and not available here outside of VISION trial, many MOs probably feel the same as yours. And yet the limited available evidence suggests it might be of more benefit to a higher number in lower burden of disease.

This can be evaluated to help guide your decision making via the Ga-PSMA scan which can be obtained for $2700, if qualified, at the UCLA study. Knowledge helps to empower reasoned decision-making, while navigating this sea of uncertainty. Happy that the chemo worked so well.

[tom67inMA]

I suspect your quandry is quite common, and it's certainly something I'm wrestling with as well.

My advice to you and your husband (and the advice I'm trying desperately to follow myself), is to focus on living and set some ambitious but realistic goals that he wants to achieve within the next year or two. Then the question becomes "will additional treatment help him achieve these goals?" It's a way of coming up with your own definition for what it means to "beat cancer", and it doesn't require being cancer free.

Everybody's road eventually leads to death whether it be due to cancer, heart attack, or simple old age. I've seen men here on this forum that have literally traveled the world seeking out the best care, then pass after only a few years. Meanwhile, other men have followed SOC and are still alive many years later without so much as changing their diet.

So really, nobody knows how much time they have left, and a large part of it is simple luck. As cancer patients, we have to balance treatment to prolong life with going about the business of living life. I'd hate to find myself still alive a decade from now and see myself having spent all that time worrying about staying alive.

[CantChoose in reply to tom67inMA]

This is great advice. I read and read because that's my coping mechanism, but maybe it's time to focus forward, on life instead of death.

[j-o-h-n]

If you focus on death you might as well be dead. Laugh!!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/30/2019 12:23 PM DST - Pinnes

[CantChoose]

PSA dropped another half point this round. Still above 3 though.