Treatment Failure

[Lombardi24]

Just wondering what I am doing wrong. I am reading posts from men with aggressive metastatic prostate cancer that have survived for 17 plus years. I cant seem to experience one lengthy remission. I've been to Dana Farber and Sloan in NYC and have been through chemo...radiation...hormone deprivation and nothing stops it. PSA will drop but not for long. It seems as though patients of Dr.Snuffy Myers are all living. Ive had no success with ED either and the doc spared one nerve during robotic prostatectomy. So...what am I missing?

[Tall_Allen]

It can only produce anxiety to compare yourself to others. Every cancer is different. It sounds like you have a very virulent subtype.

[Lombardi24 in reply to Tall_Allen]

Treatments have kept it confined to pelvis for 4 yrs, but spot appeared in lung that doc is watching and it has moved to right side of pelvis now. When do you decide to just throw in the towel? Really isn't anything left now except for chemo and I'm not so sure I want to go thru that again for the 3 months i get post treatment.

[Tall_Allen in reply to Lombardi24]

Orchiectomy or lifelong ADT will slow it down. There are some promising trials of radiopharmaceuticals (e.g., Ac-225-PSMA or Lu-177-psma).

[Lombardi24 in reply to Tall_Allen]

I am on Lupron. Have been since beginning. Med onc states that the other ADT drugs (I was on zytiga and xtandi) will no longer benefit me. If I've done Xofigo and it didnt work...do you think the ones you mentioned might? I've also read where prolactin deprivation might be and option.

[Tall_Allen in reply to Lombardi24]

Xofigo only works on bone mets, where there is active overgrowth - are your bone mets blastic or lytic? If lytic, your mets should be biopsied. The other radiopharmaceuticals will work on soft tissue mets also.

[Lombardi24 in reply to Tall_Allen]

Not sure. They were biopsied to test for BRCA mutation. The way they were described it sounds like there blastic.

[TimCo in reply to Lombardi24]

At this juncture a strong support system is critical. Lean on me and the other men here who are wise insightful and compassionate.

[Lombardi24 in reply to TimCo]

Thx Tim. I am and have been. Support here is invaluable. ❤

[ctarleton in reply to Lombardi24]

If you may not have already been sharing your story and needs in a face-to-face Advanced Prostate Cancer Support Group, the kind of info at links like this might help.

cancerabcs.org/support-groups

Charles

[Lombardi24 in reply to ctarleton]

Thx Charles

[erjlg3]

My heart hurts for your pain Bill. Your strength is amazing.

Jackie

[Lombardi24 in reply to erjlg3]

Thx Jackie. Not as emotionally strong as a was a few yrs back

[erjlg3 in reply to Lombardi24]

It takes its toll on your mind , body and soul Bill You're still searching and fighting to live..... which makes you tough as nails. You may not feel like it but you're so brave and courageous..... look at all you've gone through. All of you... is going through a horrific war... each and every day. I wish, hope and pray for something to help you asap. Sending you all my good wishes, good vibes, good juju, prayers out to the universe, love and my prayers precious Bill.

Most sincere,

🌼Jackie

[Lombardi24 in reply to erjlg3]

Thx Jackie. ❤

[Bcgkelly in reply to Lombardi24]

Thinking of you & how hard you have it. Sending positive thoughts and energy. You seem amazing to me given what you have and are going through as I’m only a short while after surgery and at times find it hard to stay positive. Keep the head up cause your surely due a break.

[Lombardi24 in reply to Bcgkelly]

Thx Bcgkelly.

[greatjohn]

We're in the same boat pretty much...I've just finished Provenge and started Xtandi at same time.....hoping this (finally) gives some remission time in years...not just months. Good luck, I'm following you and hoping for the best for us both.

John

[Lombardi24 in reply to greatjohn]

Thx greatjohn!

[Dreamweaverman]

Hi Bill, I just want to encourage you to hang in there. I am worried about experiencing the same issues although my surgery was recent. One thing for sure is that you are doing NOTHING wrong. Everyone's body heals differently, and it seems you are doing all the necessary steps towards your recovery. Hang in there, buddy.

[Lombardi24 in reply to Dreamweaverman]

Thank you, Dreamweaverman.