6 Months on Xtandi

[Nicnatno]

Gentlemen, I've been on Xtandi since April and has kept my PSA to undectable from 6.7. When I told my Onc 2 weeks ago about the extra fatigue that sometimes can be unbearable, i asked him if we can reduce it. He said we can try 3 instead of the 4 pills. I chickened out and stayed with 4. I didn't want to risk having my PSA going up this early. Has anyone had succes in reducing their xtandi quantity and keeping their PSA low? Life is good and Quality of Life is good. Stay healthy all- Nick

[Tall_Allen]

A friend was able to convince his insurance company to let him have Nubeqa instead of Xtandi. It isn't approved for metastatic men, but with a letter from his oncologist, they approved it. It may be less fatiguing because it doesn't activate GABAA receptors.

[Nicnatno in reply to Tall_Allen]

Good Point TA. I'll mention that with my Onc.

[Shooter1]

At 6 months on Xtandi I was a complete invalid...Cut dosage all the way to 80 mg before I could function. Still on it 3 1/2 years into battle.

[Hidden in reply to Shooter1]

It is still working well?

[Shooter1 in reply to Hidden]

Hope so. Last 2 PSA on the rise, next month may shed light on effectiveness. Now 0.12.

[Hidden in reply to Shooter1]

Sounds like it's working well.

[Nicnatno in reply to Shooter1]

wow. 3 1/2 years is outstanding. The average that one gets from Xtandi is 18 months.

[Shooter1 in reply to Nicnatno]

Still hoping for 5 years +++. Wish me luck.

[Nicnatno in reply to Shooter1]

Wishing you the best Shooter

Nick

[monte1111 in reply to Nicnatno]

I never cut my dose. The side effects for me are annoying. But it has worked for a little over 3 yrs. Psa <0.1 (extensive bone mets). Lupron now of course and chemo before I started Xtandi. Several here that have used it more than 3 years. But now I am fatigued and must go. Enjoy.

[Roscoaus2000]

I went onto Xtandi after Casodex stopped working after 12 months. It made me feel wonderful and full of energy. Unfortunately after 4 months I had a minor seizure and had to stop using it. I was changed to Zytiga and have been on this for 30 months. It took a while to adjust but it has been ok.

[EdBar]

I’ve been on 80 mg for over 2 years now, my PSA is still undetectable. SE’s are still there but not as bad. I’ve been taking Xtandi for over 5 1/2 years now.

The 160mg dose is the maximum amount that could be used without high grade SE’s, so it became SOC. But it is still active and effective at lower doses for many guys.

Ed

[Nicnatno in reply to EdBar]

Ed, at what point did you reduce to two?

[EdBar in reply to Nicnatno]

After around 3 years on it, SE’s seemed to be cumulative and my MO, Dr. Sartor advised I cut back to 2 saying there is still significant activity on this dose

[Nicnatno in reply to EdBar]

But there's still some fatigue, right?

[EdBar in reply to Nicnatno]

Absolutely, fatigue, cognitive issues, headaches. There’s meds I take to help with these, you can pm me if you like for details.

[joeguy]

I was on ADT for 3 years before I had to stop because of side effects to the heart, Firmagon and Eligard stoped working after about 2 year, and Xtandi was added to the mix. Xtandi worked amazingly well, but the side effects were horrible. I reduced dosage to 3 pills, then 2, and finally all the way down to 1 pill per day, and it was still keeping my PSA at 0.0. I am currently looking at all my options with radiation and chemo.... I will save drugs like Xtandi for the end for fear I wont survive the side effects anyway.

[Nicnatno in reply to joeguy]

Taking only 1 pill ? You probably don't even need it

[joeguy in reply to Nicnatno]

when I went on drug vacation and stoped Xtandi and Firmagon, I stayed at PSA 0.0 for about 8 months before it started climing. At my blood draw in about a week, I expect PSA to be around 1.5 ..... doubling time is at about 5 weeks. Considering I am castrate resistant, and the Firmagon no longer keeps my PSA down by itself, I would say the lower dose Xtandi was still doing its thing.

[Nicnatno in reply to joeguy]

Good to know. Thank you Joe

Nick

[IBstan]

I've been taking Xtandi for 5 years and no mets. I started with 4 pills and then reduced the dosage monthly by 1 pill at a time, down to 1 pill every other day. Psa is staying at >2.0 . I feel fine and no fatigue and not much brain fade. I even stop taking it completely for a vacation until the psa climbs up again to the 10. range then I start again with 2 pills a day until the psa drops to >1. and then go back to the 1 pill a day or every other day to keep Psa below 2. My Doc says less is better if you can keep psa low ... Best Regards...

[OldFart81 in reply to IBstan]

Good informative post. Thank you, IBstan.

[Rocketman1960 in reply to IBstan]

Fascinating. Do you know how Xtandi works in the body? What it does? I have been on but for almost 3 years and would love to reduce dosage.

[Nicnatno]

Thank you Ibstan

[j-o-h-n]

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/04/2020 6:36 PM EST

[Nicnatno in reply to j-o-h-n]

Did you have a nice nap Kuya John?

[j-o-h-n in reply to Nicnatno]

Tuloug ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/05/2020 5:54 PM EST

[Kaliber in reply to Nicnatno]

That’s not sleep, it’s the sound he makes playing with his Hasbro toy barber clippers. 😂😂😂