How long have you lived after DX cast... - Advanced Prostate...

Advanced Prostate Cancer

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How long have you lived after DX castration resistant Pca?

petrig profile image
27 Replies

After successful treatments(triplet Adt+Doce+Nubeqa) my psa starting to rise. 0,4 to 8,1. Psa tested again,Ct scanning in 7.April and specialist in 11. April.So I am in metastatic castration resistant stage.How long have you lived after same or same kind DX?

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petrig profile image
petrig
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27 Replies
speranza10 profile image
speranza10

I'm sorry the triplet didn't work very long for you. I wish you better luck with future treatments

mrscruffy profile image
mrscruffy

15 months since CR

Fonske profile image
Fonske

Have you discussed SBRT with your doctors?

My last PSA showed an increase to 0.77 after having dropped to 0.21, the latter was 5 months after the end of the 6th docetaxel.

This morning I had a consultation with the radiologists at the hospital where I was treated with docetaxel. They confirmed the need to start SBRT treatment ASAP for 1 met on C7 and 1 met on humerus.

petrig profile image
petrig in reply toFonske

I will discuss about treatments with my doctor in 11. this month. I will propose starting Xgeva(Prolia ,denosumab)) every 4 week and 6 times Xofigo (Radium 223).I dont want to start cabazitaxel.I had 6 times Docetaxel year ago.

Maybe Lutetium-177PSMA but its 705 km to travel every 4 to 6 weeks.

Radium 223 only 218 km away..

Maybe Lynparza(olaparib) if I have abnormal BRCA gene.

petabyte profile image
petabyte in reply topetrig

Sounds like somatic genetic testing (not just for BRCA) could also suggest future treatments...

I saw in a video from an oncologist that with NGS they sequence everything and only report the panels requested.

petabyte profile image
petabyte

In some cases BAT can restore hormone sensitivity. I don't have any experience with it but I have seen on this forum that the well known doctors investigating BAT will consult and guide other oncologists remotely.

Broccoli24 profile image
Broccoli24

Sorry to hear that. Did you recently switch from Firmagon to Orgovyx? I think you mentioned it in some recent posts and I wondered if that had had anything to do with it?

Good luck.

petrig profile image
petrig in reply toBroccoli24

I though that too. I had blood test week ago. I have appointment to my doctor in April 11. Hope my testosterone is higher than 50 so Orgovyx is "leaking" . Nurse did not think so..We will see Hope testosterone is not in castration level..🤞

Broccoli24 profile image
Broccoli24 in reply topetrig

Really crossing my fingers for you!! 🤞

Seasid profile image
Seasid in reply topetrig

What did your doctor say?

Seasid profile image
Seasid

Did you have a resent scan to see where is your cancer now?

petrig profile image
petrig in reply toSeasid

It was all around my bones already in DX 2023.

GSDF profile image
GSDF

3 years since became castrate resistant Pca

Scousegit profile image
Scousegit in reply toGSDF

Well done that's vey encouraging for us all to see. Good luck and please keep us posted on how you're doing.

icanwintwice profile image
icanwintwice in reply toGSDF

Hey GSDF. thank you for the info. wonder if you are still on the Ivermectin, and how you felt about the drug....

GSDF profile image
GSDF in reply toicanwintwice

Yes, still taking ivermectin

Mike_B21 profile image
Mike_B21 in reply toGSDF

what dose IVM are you taking? 1kg/lb?

GSDF profile image
GSDF in reply toMike_B21

I take approx half inch glob from syringe I get at Tractor Supply. 3 days on 4 days off.

Watcher24 profile image
Watcher24

Try BAT, I have been on that for two years, PSA now 7

GSDF profile image
GSDF in reply toWatcher24

Have done BAT. Got about a year out of it before PSA began rising rapidly

EdBar profile image
EdBar

Around 3 years and still clicking along.

Ed

icanwintwice profile image
icanwintwice in reply toEdBar

Hey EdBar. Read your profile. I was a patient of Dr Myers as well. Recently, my PSA jumped from .04 to .12. Did a PSMA test and they think they found a met on my rib. I heard that a high percentage of mets found on PSMA tests are false positives. How did you determine that yours were cancerous. Looking at SBRT. PSA has fallen to .08 since diagnosis.

I also didn't notice what you were currently on, please let me know...

Impressed with your efforts...keep it up!!

EdBar profile image
EdBar in reply toicanwintwice

I believe PSMA scans are pretty accurate, that said, ribs are notorious for false positives but my RO felt pretty certain that what showed up on my ribs were tumors. So I had a met on a rib treated with SBRT twice on two separate occasions one year apart and each time PSA fell to nearly undetectable. Furthermore the site of the first treatment was almost completely resolved so it was likely a tumor. I’m currently on Lupron, Xtandi, dutasteride, metformin and estradiol patch all originally prescribed by Snuffy around 10 years ago. If it works don’t fix it and I’m not one to FAFO, being aggressive in my treatment has worked for me, something else Snuffy preached.

Ed

Kayakbob profile image
Kayakbob

I have been one of the lucky ones. 15 years since original diagnosis, continuous ADT. 12 years since CR diagnosis. After spot radiation (PSA went back down) and Provenge treatment, additional ADT for 16 months, tried ADT holiday. MedOnc said should only last 6-9 months b4 PSA rise. This ADT holiday lasted 6 1/2 years before recurrence 3 years ago. Oddly, at this recurrence, I responded to ADT again (no longer CR???). ADT dropped PSA again. PSMA PET found mass at L4, surgically removed and radiation. Once again, PSA dropped, then rose again. PSMA-PET again showed mets at L3 & L5 with some soft tissue involvement. Orgovyx started, and xtandi added prior to Pluvicto treatment for its' synergistic effects. After Pluvicto and 3 more months Org/xtandi, started another ADT holiday - so far, it's been 15 months, and PSA has only risen to 0.11, T is back to lower edge of normal. Taking it one day at a time.

icanwintwice profile image
icanwintwice in reply toKayakbob

Hey Kayakbob, who is your doctor if you don't mind me asking?

Islandboy2021 profile image
Islandboy2021

It’s been 8 years since diagnosis. Now I have exhausted all the SOC treatments. Waiting for access to trials now.

I would make sure you try all treatment options available to you. If you can get into trials. Travel and pay for treatments if you can afford them.

Don’t wait because the cancer doesn’t stop spreading if not being treated.

j-o-h-n profile image
j-o-h-n

I'm very thankful that so far I've lived before I died....

Good Luck, Good Health and Good Humor.

j-o-h-n

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