Xtandi

[Fight11]

Could any of you that have been on or that is on Xtandi share some feedback? Is it pretty tolerable ? Is a steroid taken with it? Thank you !!!

[Shooter1]

No steroids required and tolerated by most, but not me....at least not at full dose. I'm on 80mg as 160mg made me a complete invalid.

[Magnus1964]

I was in xtandi for 4 years. No steroids no problems.

[Olivia007]

My dad was on it but he was older and was sedentary he had a lot of aches and pains and some other serious side effects but the dr put him on half dosage and he tolerated it better.

[Clotter1]

I’ve been on Enzo for 17 months. It worked well until a month ago when my psa started to climb. I tolerated it well fo 11-12 months, when my ankles and feet became painful. Because of other comorbidities I found it hard to exercise. If will help to keep walking a lot and keep ahead of the pain.

[larry_dammit]

I’ve been on it now since 12-2016. No I don’t take steroids with it. I take it at night to lessen the way it makes me feel. Not bad just quizze , only caution is do Not start any new meds without first talking in with there pharmacy, it does not play well with a lot of other drugs especially pain meds

[EdBar]

I’ve been on it for almost 7 years now, main side effect is fatigue so take at night, I usually take it around 8pm. Other side effects for me are some cognitive issues and brain fog. After about 5 years I reduced the dose by half per my oncologist, the side effects seemed to be cumulative and the half dose was still effective however when first taking it it is important to take the full dose per your doctor. If side effects become unmanageable there are plenty of guys who get away with a lesser dose but this must be coordinated with your doctor. Just know that it is an option.

Ed

[XrayDir]

I was on Xtandi for 6 months before it was no longer working for me. The only SE was slight fatigue. I was able to normal activity, I just got tired easier. Good luck with it. I hope it works for you.

[RyderLake2]

Hello, I have been on Xtandi (enzalutamide) for nearly five years. Four pills a day does cause fatigue so take them at night. Like all drugs there are side effects. The major ones for me include loss of interest in sex (low libido), and loss of body hair including my pubic hair. Fortunately no significant hair on my head. Less serious (for me) are occasional hot flashes and some brain fog. The hot flashes went away after the first year. I can tolerate a lot to spend quality time with my wife, adult children, grandchildren and friends. Good luck as you start this new chapter in your battle against this damn disease.

[Chugach]

I didn’t have any side effects

[oilcan4]

My husband had Stage 4 prostrate cancer with bone metastasis. Took Xtandi for 6 months with no reduction in PSA. He had no significant side effects

[PHnerd in reply to oilcan4]

What was his treatment after the Xtandi?

[Fight11 in reply to PHnerd]

He has never been on Xtandi. He is on Darolutimide . The doctor said seeing as though he’s not doing well with that there’s no sense in taking the Xtandi. They are very similar and she said it wouldn’t work.

[PHnerd in reply to Fight11]

Sorry, I was asking oilcan4.

[oilcan4 in reply to PHnerd]

he had to have carotid artery surgery and could not start his chemo for 3 months. He then had 3 rounds of Taxotere and it was not reducing his PSA. They then tried Zofigo but his platelets started going down so had to stop after 3 infusions. After that, they took a bone marrow sample too see if it would be a match for an experimental drug, but he started declining rapidly and passed away before they could get an answer. all this took 14 months. Before Xtandi I believe he took Zytigaa for 6 months

[Tvssog902]

I have been taking Xtandi (160mg) since 12/10/20 and Eligard (22.5mg) shots every 3 months. I have tolerated it well with mostly fatigue and some hot flashes. Brought my PSA down to <0.04 and feel am on track so far.

[Rocketman1960]

On Xtandi alongcwith Lupron for the past 4 years. held psa very low till about 6 months ago. PSA starting to rise slowly. I think Ixwill be changing meda pretty soon but will ride this pony till it no longer works. Fatigue was the only issue but you can learn to power through it.

[diatom]

Taking 240mg at nightNo side effects

Been on it for a month but PSA still rising

[j-o-h-n]

"Xtandi"

I call my booger "Xtandi"

Because I'm beat on "Xtandi"

and "Xtandi's" heat on me.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/02/2022 6:43 PM DST

[OTPrincess]

Husband has been on it long with Lupron shots for a year so far.Initially he had hot flashes but greatly diminished. Fatigued requiring more sleep but still able to ride bike 10-15 miles a day. He only had a psa of 4.01 when metastatic pc was found.psa is now .07. Xtandi is expensive, $10,000 a year on Medicare g with a drug supplement but we are grateful that it is resolving small Mets and preventing new ones. He has no other symptoms.

[NotAlwaysSunshine]

Tolerated for a few months until it stopped working.

[Ghostlycomet]

Started on Xtandi along with Decapeptyl 6 months now roughly. Diagnosed with stage 4 n1 m1 at 55 with a PSA of 46.7 which is now less than 0.03 so working well so far. Mild hot flashes and slight tiredness just. Take mine at night .Have had more problems getting over covid that I caught in January.

Best of luck on this long journey