Who takes 80 mg Xtandi and for how long?

[jbskiatook]

I'm preparing for a discussion with my urologist about moving from a 120 mg a day to 80 mg a day for xtandi. I would like to know how many people out there are using 8 mg per day and how long they have been on that dosage. Can you let me know. I will appreciate it.

[larry_dammit]

If the Xtandi is working at 120 why do you want to cut the dosage ? I’ve been on it now. 5 1/2 years and still doing great on the PSA.

[jbskiatook in reply to larry_dammit]

I'm having problems with constipation which I can't seem to resolve well. It is encouraging to see that you have been on this for 5 and a 1/2 years as far as time it works.

[larry_dammit in reply to jbskiatook]

I have taken a half cap full of Miralax every morning since starting this war. Works for me. Can’t taste it and just like clockwork. I just put it in my coffee. 🙏

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

Put what???

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/13/2022 7:24 PM DST

[jbskiatook in reply to larry_dammit]

Thanks, I sure will look at that since Metamusil is hit or miss. Very encouraging 5 1/2 years

[jbskiatook]

Do you think there is a need to take xtandi and mirlax 2 hours apart?

[larry_dammit in reply to jbskiatook]

I put the Mira lax in my morning coffee. And take the Xtandi in the evening. Just saying

[Zzzgott]

I cut Xtandi to 80 mg 18 months ago with Lupron PSA has stayed undetectable

[jbskiatook in reply to Zzzgott]

Thanks and your Doctor tecommend and why Was it side effects

[Zzzgott in reply to jbskiatook]

Yes the brain fog, fatigue and muscle loss on 160mg were tough.

[Stoneartist in reply to Zzzgott]

It seems that the doctors have no hesitation on reducing the Xtandi dose, but I cant find any reliable info on that. I went from 180 to 120mg and my 3monthly PSA fall continued as before. Are we doomed to use ourselves in a trial and error approach to finding a minimum dosage that still does the job when we are at PSA nadir - or does anyone know of any clinical trials which give reliable info on this??

[TJGuy]

Question why Xtandi and not Zytiga?

[jbskiatook in reply to TJGuy]

Doctor's choice.

[joeguy]

I was on xtandi with Firmagon injections for a couple years. For me the side effect were pretty bad (heart and cognitive issues), but the drugs worked very well and got my PSA to undetectable. I eventually had to take a vacation due to the side effects, but before going on vacation, I had reduced Xtandi all the way down to one pill per day, and it was still working. I am now on Nubeqa and Orgovyx, and while the side effects are much better, they only seem to be able to get PSA down to around 1.0, so maybe not quite as effective as Xtandi was.

[jbskiatook in reply to joeguy]

Thanks

[joeguy in reply to jbskiatook]

are you from Skiatook Ok ?

[jbskiatook in reply to joeguy]

Yes Purcell and you?

[joeguy in reply to jbskiatook]

Ft Gibson lake

[Khshannon]

My father has tried XTandi at least 3 times starting at age 85. Too many side effects with full dosage , so he went off of it and tried another med. When that stopped working he tried XTandi again at 86 by increasing dosages every 2 weeks. Ended up going to 4/day and then back down to 2/day and that was still bad.

Dr. switched to another med again…that stopped working so he tried XTandi again at 1/day. He could handle that but after 6 mos it’s stopped working -PSA JUMPED From 120 TO 330 last month, after a steady decline in previous months. The reason he kept trying was that it was his last option and it worked GREAT for him. At age 88 now, he’s lived with prostate cancer since he was 65(had radiation seeding then)

He’s lived a full life and is also now in memory care after my mother passed.

.

(Cancer started spreading at age 84 to a few lymph nodes and in bones in a few areas- no

Pain at all yet. )

(Forgive my lack of terminology as I’ve lived far away from him for many years, but have had him nearby for 18 mos now. I tried to keep up with his journey, but my mother was his main help/confidant. She passed 6 mos ago, so I’ve stepped into her role as cheerleader/helper/decision maker. )

Good luck to all. 🤞

[jbskiatook in reply to Khshannon]

That is great that no pain. I pray for the same results.

[Khshannon]

My father passed away in November, at age 88, from prostate cancer. He had to go off all prostate cancer meds in July after they stopped working. He was on no other medications his whole life besides the cancer meds.

Luckily, he was in very little pain up until 5 days prior to his death. As a matter of fact, I exercised and danced with him the week before he passed. My father lived fully and loved his life. I wish that for everyone here. God bless.