Xtandi is failing: Details are in my... - Advanced Prostate...

Advanced Prostate Cancer

22,355 members28,111 posts

Xtandi is failing

Bjry profile image
Bjry
11 Replies

Details are in my profile. Overall I’ve had good but not remarkably long term PCa control from standard of care treatments.

In July 2018 when first diagnosed with widespread multiple tumours, I needed to turn things around in a hurry. Zoladex and docetaxel initially delivered a nadir of 0.06. I had a 2nd scare in April/May 2022 when my PSA rose to 39 and was doubling every 3 months.

I started Xtandi in about May 2022 and got to 0.08 in a few months but PSA is increasing at a rate of around 10 times every 3 months and is now 8.7; that is concerning. A recent Pet scan showed low tumour volume but low PSMA avidity that unfortunately rules out Lutetium as an option. I see my MO in a couple of weeks when I expect to be prescribed Cabazitaxel.

The main good news is so far my PCa symptoms are more irritating than serious. In 2018 my main disease symptom was bladder control and today my main disease symptom is still bladder control. In February 2023 I was also diagnosed with Barrett’s oesophagus, a biopsy showed some precancerous growth that has been surgically removed - I have 1 last day procedure to remove any remainder.

So what can you do other than enjoy life from one blood test to the next and keep exercising to maintain my reduced stamina. Of course I’m always searching for that that elusive clinical trial offering the chance of longer PCa control.

Written by
Bjry profile image
Bjry
To view profiles and participate in discussions please or .
Read more about...
11 Replies

Best of luck at your MO appointment.

Tall_Allen profile image
Tall_Allen

Several good choices:

prostatecancer.news/2021/02...

prostatecancer.news/2022/10...

Bjry profile image
Bjry in reply toTall_Allen

Thanks TA. I've added these to my discussion points with my MO. I was initially afraid I was nearing the end of the treatment pipeline .

Ramp7 profile image
Ramp7

I did Lupron/Zytiga, and LuPSMA177. Now doing a self administered BAT protocol. I'm responding well. QOL greatly improved. I have convinced my local MO to assist as arms length. This is not SOC. I also have two research Doctors following my progress at the top research medical facilities in the Country.

Bjry profile image
Bjry in reply toRamp7

Thanks Ramp: I"ve got BAT in my points to raise with my MO.

Ramp7 profile image
Ramp7 in reply toBjry

One thing to keep in mind. I was strongly discouraged from going forward with the protocol. Denmeade was positive about BAT but never mentioned doing it alone. It wasn't until I got some positive evidence that I was a responder that my local MO acted in supportive manner.

Fiddler2004 profile image
Fiddler2004

Definitely check out the links from Tall Allen especially #2 prostatecancer.news/2022/10...

Sam2346 profile image
Sam2346

unrelated to pca, but with barrett’s a low acid diet is imperative.

Bjry profile image
Bjry in reply toSam2346

Thanks Sam, the Barretts was an unexpected pain in the butt. Low acid diet is a good tip.

Sam2346 profile image
Sam2346 in reply toBjry

i have gerd, so I have a little idea of what you are going through. find a good group to help with foods

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

"the chance of longer PCa control".

Don't stop taking chances.........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/14/2023 6:59 PM DST

Not what you're looking for?

You may also like...

Is Xtandi failing?

I have been on Xtandi ( on a trial) for the last 6 months because of spread to my bones. I am...
taxman profile image

Xtandi is my next treatment

Hi, I'm new here. Was diagnosed with PCa in 2015, Stage IV, PSA 22.2 when diagnosed mets to brain,...
Jashelby profile image

SOC is working for me - so far anyway.

I’m 77 and first diagnosed in July 2018 as Stage 4 Gleason 8 PCa with widespread metastases. I had...
Bjry profile image

Xtandi ?

Cost of Xtandi (enzalutamide) Diagnosed in 2000 at age 61. PSA 5.6. Radical retropubic...
Davisjl profile image

Bummed, PSA went up 0.08 in a Week! Am I failing ADT?

Ok being dramatic Rising PSA? So damn soon? 15 months in Gleason 8/9 Low Volume High Grade...

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.