Xtandi for castrate resistant PC

[joeguy]

I just started Xtandi a couple of weeks ago after becoming castrate resistant. I was on Firagon, Eligard, and briefly Casodex for 20 months before becoming resistant. PSA is still relatively low at just under 2, but doubling time is fast at about 6 weeks. Has anyone that is castrate resistant had good results with Xtandi? Thanks

[RyderLake2]

Hi joeguy,

I have had some amazing results with Xtandi (enzalutamide). Fifteen months and my PSA is still (touch wood) undetectable (less than 0.008). Few side effects other than fatigue. Not too bad considering my PSA at diagnosis was a little under 1700 with extensive bone mets. That was five and a half years ago. Good luck with your battle.

[joeguy in reply to RyderLake2]

Are you castrate resistant? Im not sure if that makes a difference, but very encouraged to hear your results!

[RyderLake2 in reply to joeguy]

Hi joeguy,

I was over the summer of 2017. Zoladex (goserelin) was no longer working and my PSA was starting to climb. It was 1.3 in July, 2017; 2.4 in August; and 3.4 in September. My medical oncologist said he wanted me to stay on the Zoladex injections (every three months) but that he wanted to add a second line drug. He gave me the choice of Xtandi or Zytiga (abiraterone acetate with prednisone) and I chose Xtandi partially because I'd had a good reaction to Casodex (bi-calutamide) much earlier in my treatment. Casodex and Xtandi both belong to the "lutamide" family but Xtandi is ten times stronger. My PSA immediately went down and it has stayed down for the whole of 2018. It has been undetectable since April, 2018. Good luck with your decision!

[joeguy in reply to RyderLake2]

Thanks Ryder, I also had good results with casodex in combo with eligard, but stopped casodex after a few months because the fatigue was kicking my ass. Have been on firmagom monthly since. Now that I'm resistant, and starting xtandi, doc wants to switch back to 3 month eligard injections. Hoping to get at least a couple years out of it without too much fatigue

[whatsinaname in reply to joeguy]

Just a thought.

If Casodex (which is not as strong as Eligard) gave you so much fatigue, why do you think Eligard will not "kick your ass" more severely ??

[joeguy in reply to whatsinaname]

It seemed to be the combination of the two that was the problem

[Kevinski65 in reply to joeguy]

They are supposed to be taken together

[DaughterOnAMission in reply to RyderLake2]

Hi! My dad is on zytiga and we are thinking of switching to xtandi. Hes having bad leg pain on zytiga. I dont know why I thought xtandi was no good, sounds like it's working for you.

[GeorgeGlass in reply to RyderLake2]

what was your doubling time before you started ADT? So the ADT worked alone for 5 1/2 years?

[RyderLake2 in reply to GeorgeGlass]

Hello George,

My PSA at diagnosis (May 2013) was a little under 1700 so I consider myself very fortunate to have had a positive reaction to first Zoladex (Goserelin) and, when that started to fail in the fall of 2017 to a combination of Zoladex and Xtandi (enzalutamide). My PSA is slowly starting to creep up again so I am not quite sure what my medical oncologist has up his sleeve for the coming months. I am hoping to get on the VISION trial.

If you are asking how quickly my PSA was going up in 2013 before starting ADT? I really don't know. At diagnosis the oncologist at the nearby Cancer Clinic placed me on Casodex (bi-calutamide) immediately. After three weeks I was taken off the Casodex pills and started Zoladex injections. When my PSA began inching up in 2017, I started Xtandi which I continue to take. The last four PSA readings that I had in 2017 prior to beginning Xtandi were 0.79 (June 5), 1.3 (July 14), 2.4 (August 15) and 3.4 (September 18). After starting on Xtandi my PSA plummeted and for most of 2018 it was less than <0.008 or undetectable. The last reading taken today was 0.19.

Hope that answers your question.

[EZgoi]

My hubby was practically an invalid on 4 pills of xtandi after a couple of weeks...dropped down to 2 per day ... really helped with SE.. BUT...in 4 weeks of that half dosage PSA only dropped to 10.8 from 11.1. Today he is going to go to 3 per day and see if he can tolerate those SE in hopes of getting better results. ZYTIGA worked great until he became resistant after 3 yrs on it. Will post next month regarding results. Also, he does still get the headaches even on half dosage...never had any bad SE on Zytiga.

[joeguy in reply to EZgoi]

I dropped down to 3 xtandi after 3 weeks. The constant headache and brain fog was a bit much. So far 3/4 dose is not too bad and headache is much better

[GeorgeGlass in reply to EZgoi]

did the zytiga cause any issues with his heart?

Did he start the zytiga when the Lupron/ADT started failing as a solo treatment?

George

[EZgoi in reply to GeorgeGlass]

No heart issues but it failed and left hi with continuing joint discomfort. He started it after Zytiga failed after approx 2 1/2 yrs. Xtandi was a total failure...looking at chemo next.

[GeorgeGlass in reply to EZgoi]

I wish you luck and blessing EZ. Have you been eating healthy and exercising?

[ctarleton]

About 5 years ago I was very metastatic and had an initial PSA of 5,006. Initial Lupron / Zometa took that down to a nadir of 1.0 and worked well for nearly two years. After I became castrate resistant on Lupron, I eventually had Provenge while PSA was rising up through 80. Then I started Xtandi a little over two years ago with a PSA of 95.0. The added Xtandi took the PSA back down to a secondary nadir of 1.2 about 18 months ago. Current PSA is 2.2. I am humbled and grateful to have been a 5 year survivor, as of last month.

Charles

[Magnus1964]

I have been on Xtandi for 3 1/2 years. Have you been on Zytiga yet? I also had good results with it.

[joeguy in reply to Magnus1964]

I haven't been on Zytiga. Xtandi is the first "next level" drug I have tried. I have the first blood draw since starting it this Thursday, so I guess I will find out how well its working.

[Magnus1964]

Good luck.

[Kevinski65]

I don't know if I need to write this... Zytiga and Xtandi were meant to be an add on to a major androgen blocker like Lupron, degarilix, eligard and so on.

[Lt036]

Been on Xtandi for about six months. Seems to be working right now but side effects are terrible. Extreme fatigue weakness no balance and feel terrible. Other than that not bad.

Good luck God bless us all