Is anyone taking Enzalutamide for advanced prostate cancer?

[Villavictoria]

Is anyone taking Enzalutamide?

[Tall_Allen]

Put "Xtandi" in the search bar. What questions do you have about it?

[Villavictoria in reply to Tall_Allen]

My husband is about to start taking it. Wondered about side effects and results.

[Pinkpeanuts07 in reply to Villavictoria]

Villavictoria how has your husband got on with Xtandi? My dad has been offered it but not sure as worried about the side effects.

[Shooter1]

Yes, half dose after full dose made me an invalid.

[monte1111]

After 8 cycles chemo went to Xtandi August 2017. With Lupron also, my psa is <0.1 after almost 4 years. I take the Xtandi in the evening, now at bed time. It may cause fatigue. Everyone can have a different reaction. It has worked well for me. I have extensive bone mets that at last scan are stable. I'm thinking of moving to New Zealand to get away from the Covid.

[Hidden in reply to monte1111]

I would have believed you if you said to get away from j-o-h-n.

[monte1111 in reply to Hidden]

I've got my shots. New plan is to send j-o-h-n to New Zealand.

[Hidden in reply to monte1111]

That's the best plan I've come across in a long long time.

Are you taking over maintaining the list?

[monte1111 in reply to Hidden]

Don't worry, you are on the list.

[RyderLake2]

Hello, I have been taking Xtandi for three years and six months. Four pills every evening. Some side effects but nothing I can't handle. Good luck in your battle.

[Magnus1964]

I have been on xtandi for 4 years. I had to stop because I'm having bypass surgery.

[NWLiving]

My husband also did well on it for over 3 years. Some loss of strength but gained some valuable time without progression of cancer in his bone Mets.

[2dee]

For ME (78yr) it works a charm.Added to my Lupron in 5/19 after PSA began a rapid rise after a nadir of 1.2 (down from 1300+ in 2018), up to 9.1.

Below 1 after only a couple of months and now around .4.

Hasn't been that low since I was 10yr old.

MY side effects include more fatigue and loss of balance...

I'm REALLY glad my MO added. No idea how long it lasts but every day is a bonus.

MY use by date was 2018.

Luck. Give it a try.

2Dee

[Atlpapa]

I've been on Xtandi along with Eligard 3 month shots since 02/2020 which is when I was first diagnosed with stage 4 (bone mets and 1 lymph node). My PSA has gone from 30 to less than 0.01. For side effects I've had some fatigue but that could easily be from the Eligard. The other side effect I've got is numbness in my feet that started about 3 -4 weeks after starting Xtandi. The numbness in feet (mostly toes and front part of feet) started very mild but has gotten a little more intense lately, and is just starting in my hands. Nothing I can't handle just annoying that it is there all the time and a little worse at night. Numbness in feet or hands is listed as one of the possible side effects of Xtandi so I have assumed it is the cause since it started shortly after starting ADT but I was thinking of posting the question on this forum to see if other have gotten the numbness. I have read other have it but they usually have had Chemo in the past which I have not.

[BigTex3 in reply to Atlpapa]

I’ve been on Xtandi for 3 months. It’s definitely stopped the bone pain. I’m taking it at night also. I think that’s much better than in the morning. That was great info to learn from this site. I’ve also been experiencing numbness in my right foot. Also my hands and feet both stay cold a lot. I also experience random hot flashes throughout the day. I must admit those are interesting. I now have a new appreciation for what weomen go through. Sometimes we just have to laugh and thank God for each day. At 52 with extensive bone Mets praying for many more years with whatever side effects that may come.

[EdBar]

I’ve been on it for over five years, it’s been effective for me and has kept PSA at an undetectable or barely detectable level during that time in combination with Lupron etc. Side effects for me include fatigue, cognitive issues, muscle weakness, BP issues, etc. I reduced to a half dose about two years ago to mitigate side effects which seemed to be cumulative. The reduced dose helped, I consider the side effects substantial but tolerable. Keep in mind everyone is different.

I suggest that he take it in the evening to help with the fatigue. Also a healthy diet and daily exercise seems to help.

Ed

[Pinkpeanuts07 in reply to EdBar]

Hi Ed - how was your elevated BP treated? Did the lower dose help? My dad has been in Xtandi for 3 months and his Bp has started to creep up from 110/69; 135/65; 170/85. Otherwise doing ok so far.Pinkpeanuts

[EdBar in reply to Pinkpeanuts07]

Lower dose made me feel better but BP was still elevated, my cardiologist adjusted BP meds and it’s better. I rely on home BP readings, it’s always high in doctor’s office. I started seeing a cardiologist after being on ADT for a couple years.

Ed

[Pinkpeanuts07 in reply to EdBar]

Thanks Ed. Hope you doing fine. It’s a great help to hear your experience.Pinkpeanuts.

[ctarleton]

I've been on Xtandi since Nov 2016. Took my PSA back down from 95.0 to 1.2. Main side effect was fatigue. Started becoming less effective during the year 2020. Still on it, though. (My main problem now is progressing metastatic melanoma.)

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

Forgive me but I don't recall if I ever mentioned my metastatic melanoma to you that went to my lungs. It's was treated with Keytruda and it works (so far). I haven't had a treatment sincemy number 16 treatment on Wednesday 01/10/2018.

Hope this helps, if you need more info message me........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/05/2021 9:48 PM EST

[Ybor]

Xtandi works well for lowering PSA for most people. It also has a lot of side effects some serious for some individuals. Everyone is a bit different.I was on Xtandi for about 3 years along with Lupron and a couple trips to Germany for Lu-177 treatment. My PSA is negligible. However, I have experienced nearly every side affect Mentioned in other posts. In December2020, after discussions with Mayo Clinic, I discontinued Xtandi and have switched to Nubeqa or Darolutmide. My discussions with my care team at Mayo were prompted by the reviews of trial reports presented at the ASCO 2020 meeting comparing Xtandi,Zytiga and Nubeqa. Nubeqa seemed to show many fewer side affects. To early to render an opinion, but I was eager to discontinue Xtandi!