xtandi Guys: I have been on xtandi now... - Advanced Prostate...

Advanced Prostate Cancer

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xtandi Guys

Echotango51 profile image
32 Replies

I have been on xtandi now for 14 months PSA<0.1. How long have you been on xtandi or how long did it take for the drug too fail. Also I been on lupron continuously since 2016.

Thanks for your opinions

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Echotango51 profile image
Echotango51
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32 Replies
lcfcpolo profile image
lcfcpolo

I've been on Xtandi since July 2020. A few weeks under 3 years plus Lupron. High starting PSA of 1311. Good luck.

dockam profile image
dockam

Hi, so happy that you had such a wonderful response to Xtandi💙

In my case Abiraterone failed in 9 months in 2020 and Xtandi failed in 3 months. Did a 6 Taxotere rechallenge(had 15 in 2015) and that failed, and so did 18 Cabazitaxels in 2022.

Looks like the 28 IMRTs are working for me so far😁, still on Lupron since 2015

My best to you Brother

Fight on

Randy

RyderLake2 profile image
RyderLake2

Hello,

I was on Xtandi for nearly five years before switching to Zytiga plus Prednisone. Like you I started with a high PSA (1700) plus widespread bone metastases.

Echotango51 profile image
Echotango51 in reply to RyderLake2

Why did your doctor take you off xtandi. My PSA was 1.06 when I started xtandi.

RyderLake1 profile image
RyderLake1 in reply to Echotango51

Hello,

The reason I came off Xtandi (enzalutamide) was my PSA was starting to go up. It was becoming obvious that Xtandi was no longer as effective as it once was. I have always been interested in Lutetium as a possible next step. My oncologist recommended me for the SPLASH clinical trial and I was fortunate enough to get in. This trial is investigating the use of Lutetium pre-chemotherapy. My clinical trial team put me in the control (non-Lutetium) arm and switched me from Xtandi to Zytiga (abiraterone) which I have been taking for the past ten months. I have been told there is the possibility of a crossover to the Lutetium arm should scans and PSA reveal a sudden increase in activity. My PSA is climbing but very slowly. In the meantime the SPLASH team and my oncologist are watching me like a hawk with monthly blood work and PSA tests. Hope that answers your question.

Kaliber profile image
Kaliber

been on Lupron Xtandi for about 54 months and still going strong. Xtandi saved me from inpatient hospice. Good stuff if it works for you. Its success seems to depend upon what species of cancer you have ( degree of aggressiveness) and body chemistry. Seems to vary a lot among different guys but for many it’s great for a long time. Other guys, not so much. These are my personal anecdotal observations.

❤️❤️❤️

Echotango51 profile image
Echotango51 in reply to Kaliber

thanks for the info

Magnus1964 profile image
Magnus1964

I was on xtandi for 4 years before it failed.

Echotango51 profile image
Echotango51 in reply to Magnus1964

That was a good run. What treatments are you doing now?

Magnus1964 profile image
Magnus1964 in reply to Echotango51

I'm not on any treatments, not sure of future options.

PSA680 profile image
PSA680

Hi Echotango51 - I started Xtandi May 20 (+ Firmagon Mar 20), PSA 680 & extensive bone mets. I’ve been lucky. Went undetectable PSA Nov 20 & been undetectable since. Coincidentally 3monthly Oncology appointment today so 🤞PSA still undetectable. Hope it lasts a long time for you my friend and you can live your best life.

Kind Regards

Darren

Foldem profile image
Foldem

I was on for at least 6 years before it failed. Good luck

Echotango51 profile image
Echotango51 in reply to Foldem

That was a good run. What treatments are you doing now?

larry_dammit profile image
larry_dammit

well I’ve been on Xtandi now since Dec. of 2016. Longest of any of my doctors patients.

Echotango51 profile image
Echotango51 in reply to larry_dammit

That’s great, I hope I’ll can get a run like that!

larry_dammit profile image
larry_dammit in reply to Echotango51

just don’t give up.

FortyWinks profile image
FortyWinks

33 months with Firmagon. PSA rising very slowly but still only .3. Got familiar and accepting of side effects though not easy.

Benkaymel profile image
Benkaymel

I've been on Xtandi for 8 months (and Prostap for 12) and PSA is still dropping slowly - started at 13.0, now down to 0.05. However, the mets are not shrinking from scans, in fact pelvic LNs are slightly increasing.

Echotango51 profile image
Echotango51 in reply to Benkaymel

What has your doctor said about your Mets and LN? I had a lupron injection yesterday, PSA down to 0.06. Three months ago it was 0.08.

Benkaymel profile image
Benkaymel in reply to Echotango51

He's arranging a biopsy of one of the mets the mets to see what's going on.

EdBar profile image
EdBar

I’ve been on Xtandi since 2015, became castrate resistant a little over a year ago but I still take Xtandi, my PSA is still extremely low, just not undetectable like it was for 6-7 years. Had a PSMA scan when it reached 0.2, showed a spot on my rib, had SBRT and it’s close to undetectable again, just keep kicking the can down the road.

Ed

Shamrock46 profile image
Shamrock46

My husband was on Lupron/Xtandi about 18 mos. but the Xtandi dose had to be continually lowered from 4/day to 3, 2 and 1 due to worsening multiple SEs. His PSA started doubling and he went off both in April 2023. Since April his PSA rose from 1.09 to 6.92 while SEs have diminished. He has now been referred to palliative care.

Seasid profile image
Seasid in reply to Shamrock46

Could you change to Abiraterone full dose?

Shamrock46 profile image
Shamrock46 in reply to Seasid

Not doable since he has cardiac problems and an implanted defib. The SEs are worse than Xtandi and it would probably only work for a short time.

Seasid profile image
Seasid in reply to Shamrock46

Could you ask for Darolutamide?

Shamrock46 profile image
Shamrock46 in reply to Seasid

no...it's already in S1, L5 and T1

Tinuriel profile image
Tinuriel

My husband got 9 months before Xtandi failed. Sounds like you're doing well with it.

SteveTheJ profile image
SteveTheJ

Not Xtandi, Erleada, since April 2020 and it's going fine.

Survivor1965 profile image
Survivor1965

Xtandi 77 months, Lupron even longer. PSA less that .1 which they like to call undetectable

tarhoosier profile image
tarhoosier

Xtandi monotherapy in place of conventional ADT. Started Nov 2016 and continuing with varying dose. T=546. This is not an average or normal response.

Rocketman1960 profile image
Rocketman1960

Been on Xtandi a bit over 5 years. still working although PSA climbing now to 1.9 but has held steady there for a year. I pray I can ride the horse a bit longer. Good luck my friend.

Miccoman profile image
Miccoman

Started on Xtandi 8/2016 with PSA of 5.62. Started Lupron in 2014.

By 6/17 it bottomed out at 0.20, then bobbled around that value until it started to slowly rise late in 2019.

In April of 2021 PSA was 2.7 when I stopped for Provenge Immunotherapy.

Started Xtandi again in August '21 which started my PSA back down but it came up again and I went to Docetaxel, which I couldn't tolerate and stopped after 4 infusions.

So I lasted about 6 years on Xtandi.

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