Experiences using Xtandi?

[hunter44]

Xtandi

[ctarleton]

I've been on Xtandi for 3 years now, added to Lupron which was started 3 years prior. Xtandi has worked well to bring my PSA back down to a range comparable to when I first started Lupron. After starting Xtandi, the general fatigue level definitely ramped up a notch or two. My skin produces even less oily perspiration now, and it is very dry unless I use a good lotion or cream. A little bit of "man boobs" gynecomastia tried to start during the first year on added Xtandi, but really didn't amount to much that particularly concerned me. All the other usual "low availability of Testosterone" symptoms have continued since starting on the Androgen Receptor inhibitor Xtandi. Continued loss of libido, hot flashes, etc. are still just a part of my new life now.

Charles

[hunter44 in reply to ctarleton]

Thx. I have just began using Xtandi after two previous chemo's. Xtandi is my last resort.

[mitch068 in reply to hunter44]

ask your doc about clinical trials.

[Magnus1964]

I have been on xtandi for for 3 1/2 years. What other treatments have you been on?

[hunter44 in reply to Magnus1964]

I had 42 courses of radiation (Imrt) and was told my PSA was .001. For six years I had PSA test with Dr. sending card saying ok. I moved to Arizona and took my regular PSA check up and it was 4.6. The doctor never read my file. I was sent to an Oncologist. Started on Lipron for 2 years, it became ineffectiv so I was perscribed Taxotere, after 18 months it was ineffective. Perscribed Jevtana, 1 year, no positive results. Started Xtandi 3 weeks ago. I have not taken a blood test.

Will test on 11/20. I have Neuropothy from Taxotere and all treatments have fatigue as a side effect.

[Magnus1964 in reply to hunter44]

It sounds like you still have other ADT options. Take it slow and mike xtandi for all its worth.

[EdBar]

Been on Xtandi for over 4 years now, PSA has remained undetectable. SE’s include fatigue, memory/cognitive issues, headaches etc. Dr. Sartor reduced my dose from 4 per day to 2 per day about 2 years ago because SEs got to be pretty rough. I had my 6 month visit with Sartor this past Tuesday and he recommended stopping it given my good PSA run which is great news. I remain on Lupron, dutasteride and estradiol patches along with metformin.

Ed

[ChuckBandChar]

Husband has been on it for over 4 years now with Lupron. PSA < .1. He takes four pills each AM and walks 3-4 miles each day to keep the fatigue at bay. However, it really slowed him down and by mid-afternoon he is done. I agree with the others, use it as a last resort because the side effects can really impact you.

[larry_dammit]

As the others have said. Been on it for little over 3 years. PSA <0.05 since starting. Have to stay busy but other than a belly ache if I take them without food , I’m on eligard ( Lupron ) and Xgeva as well monthly. Tendons are all dried out, aches and pains , dry skin , man boobs, loss of hair on face and arm pits, the higher the humidity the worse the hot flashes, runny nose all the time . Just fighting the monster day by day

[Shooter1 in reply to larry_dammit]

Had all of those and more. Made me a complete invalid after about 6 mo. Cut back on dosage, now on 80mg and have a life back.

[Max135]

Hunter44

I have just started the stuff (27 days) Enzi... it was not an easy one for me. Had to wait 7 months worth of PSA rises from 0.06 to 4.45 until I had no choice but to start. 3 years so far on this journey with most every treatment completed (ADT, Chemo, IMRT, Provenge and second biopsy to confirm the grand was fried after PET showed something). Not sure how long Xtandi will work and for sure not sure what the side effects will be but for me the choice was only to do or see how high my PSA would go... Tomorrow I get the first set of labs after my 28 days of being on the stuff and hopeful that my PCa burden will be low.

AS for side effects - at this point the ones I have noticed are the return of hot flashes (3-10 per days), additional fatigue most noticeable later in the day and a little mind fog. All of which can be managed with the exception of the hot flashes... and for those hopeful they will diminish after a few months. Will be shocked if my PSA does not drop like a rock along with my T - levels but like most things on this journey I will live with whatever happens and move along to the next new thing when required. Until my options end but for now my days are mine and I will spend them wisely. Best of luck on your journey Hunter44....

[EdBar]

You might want to try estradiol patches for hot flashes, works like a charm.

Ed

[Prostratehelp]

My OC put me on Xtandi after Zytiga/Predisone stopped working (PSA keep rising). I had almost every side effect from the Xtandi and was so sick they took me off of it after 3 months. PSA continued to rise during the 3 months I was on it. Now have numbness in my feet that they say might never go away.

[Shooter1 in reply to Prostratehelp]

Numb hands and feet. Nerve study showed NR (no response) in some nerves and slowed response in both sensory and reactive nerves. Pushed PSA way down though.

[Prostratehelp in reply to Shooter1]

They took me off Xtandi because of all my he side effects and it wasn’t working. PSA kept rising whole time.

I just start with monthly infusions with Xofigo. Have my second infusion next week. No side effects so far.