Daughter Supporting Father

[Sunnyday1122]

Hi everyone,

I feel very grateful to have found this resource. I am new here, and I am a 31 y/o daughter who (along with my mom) has been supporting my (almost) 78 year-old father battle Stage IV prostate cancer since January 2017. He has been in and out of remission over the course of time.

Some context: when first diagnosed in 2017, he had Gleason Score of 9 and PSA 31. Mets to bones, all other organs clear. He had 6 rounds of Taxotere, and by the end of treatment, his PSA was undetectable. In 2019, his PSA spiked and he was on Xtandi for a year and a half, with great success, then switched to Zytega when PSA started to creep up. In January 2022 he started 10 rounds of Taxotere again due to a 220 PSA and new mets spots on bones. He finished chemo in August 2022, also withdrew from Prednisone. He has been fatigued but overall tolerated everything well. During chemo, his PSA continued to drop (I want to say around 40s or 50s?) Other than PCa, the only other medical issue he deals with is high blood pressure. Also, he has been getting Xgeva injections since 2017 as well.

That brings us to today, October 2022. His bone scan and CT scan of organs are stable (done 2 weeks ago) , but his PSA jumped 80 points from about 3-4 weeks ago (now 191). His oncologist thinks he is a great candidate for Pluvicto, our first appt with the oncologist who specializes in it is on 11/10.

Concerns:

-Worried the PMSA Petscan will determine he is not a good candidate, then what?

-There is a possible supply chain shortage, and he would have to possibly either do a clinical trial of something or another type of chemo to hold him over until Pluvicto is available...what if those don't help and his conditions worsen? What if he can't get access to Pluvicto for months and months?

-What if Pluvicto doesn't work? I see mixed feedback on here

-The doctor does not like to give timelines, but my dad did ask. If her were to pursue NO further treatment (this is not the plan, just curiosity), on average it could be another 8 months but that is a bell curve and hard to pin point, really. Basically we were trying to get a worst-case scenario, but of course no doctor can truly predict.

-The most heart-breaking concern: I am getting married on 6/3/23. It is my absolute dream to have a first dance with my dad at my wedding. I am so, so worried he is not going to make it. I am utterly crushed to think about him not being there on that day.

I really am just looking here to vent, and asking that all of you send some prayers/positive thoughts our way in the hopes we can extend his remission a little bit longer....any advice or feedback is also welcomed.

Wishing you all healing, hope, and recovery <3

[Tall_Allen]

All these "what if's" are not good for you. Try to stay in the present moment and deal with problems if they occur. "Don't borrow tomorrow's sorrow."

[Sunnyday1122 in reply to Tall_Allen]

I appreciate your perspective, thank you!!!

[Schwah]

I had the same fears of not making it to my daughters wedding to dance with her. I made it and I’m betting so will your dad. Either way enjoy each moment leading up to the wedding. Don’t waste these precious today’s worrying about tomorrows.

Schwah

Dancing at my daughters wedding.

[Sunnyday1122 in reply to Schwah]

What a beautiful picture! I am so happy for you, your daughter, and your family. I pray I get to be as lucky! Wishing you continued health and wellness!

[leebeth]

It is wonderful that you are a great advocate for your dad. I know it is frustrating when there isn’t a firm plan in place, as there is great comfort in having a plan and following it. Right now, you are in the transition of having a loose plan, but don’t know if and when it will come to fruition. That’s hard. But you know you will have a plan soon, and it will NOT include doing nothing. So push that right out of your head and think positive thoughts!

The MO that your father is seeing, has an active Pluvicto program in place? That is important to know, as some facilities have paperwork and contracts signed, but are on hold until supply catches up.

Other centers have large capacity and wait times of 3-4 weeks. So one thing you could do while you are waiting is to check out that detail.

Best of luck to you, your dad, and your dreams of your wedding. My daughter is about your age and has hopefully met her future husband but they are no where near that point. I know she too dreams of him walking her down the aisle and that makes it even harder for her to accept his very aggressive diagnosis. Luckily she is not rushing her relationship just for her dad’s illness, and you aren’t either. Faith and love help a lot!

Nothing makes this easy. But you are on a good track, and you can do this. Best of luck to you!

[Sunnyday1122 in reply to leebeth]

Thank you so much for your support. The MO's office doesn't have it, as it is a branch office, but he said that Jefferson Hospital in Philly does, so he will be going there for treatment if deemed appropriate candidate.

I appreciate you!

[Darryl Partner]

welcome to Malecare!

[Sunnyday1122 in reply to Darryl]

Thank you

[Kaliber]

even when the doctors write you off as a goner, it’s not necessarily so. I’m 48 months past my doctors all encouraging me to enter hospice and still have gas left in the tank ( among other places ). Hang in there, what Tall_Allen and the rest are saying is spot on.

I’ll say welcome to the group as well.

❤️❤️❤️

[Sunnyday1122 in reply to Kaliber]

I will be sending wishes of continued health for you! Thank you for the support, it is so nice to find such a great community.

[Kaliber in reply to Sunnyday1122]

thank you ❤️❤️❤️

[Okay4now]

I was diagnosed with prostate cancer in 2001. Aside from the surgery, chemo, radiation, etc, the best thing I have going for me is the love and care shown to me by my three amazing daughters ! Two have married, and I was honored to be at both weddings - in 2017 and in January of this year. I know you are a blessing to your dad. He and I both are better men because we are honored and loved.

[Sunnyday1122 in reply to Okay4now]

Thank you SO much! Congratulations to you and your family!

[Okay4now in reply to Sunnyday1122]

You're very welcome ! Thank you so much.

[Sunnyday1122]

So sorry for your losses, and yes you are right. Wishing you the best.

[chrisrock]

Yes, PSMA scan will determine his candidature for Pluvicto therapy. If the PSMA scan is negative, then he might opt for chemotherapy.