My father will begin taking Xtandi-

[Daddysdaughter]

My father will begin taking Xtandi- any personal experiences, stories to share on side effects, whatto exoect and how he might feel?

[Tonyland]

Hi there,

My dad was just approved for Xtandi as well. He's currently on Zytiga but he's has a psa increase and a new met on scan.

I'll be interested as well to see the comments on this.

[podsart]

I am on xtandi since feb 16. My Psa dropped to undetectable immediately and has been there since. But my Psa was low when started xtandi. My xtandi dose was ramped up to full dose for a while and is slowly being ramped down. I was supposed to experience great fatigue dr said but didn't nor much of any side effects

[chascri]

I started Xtandi August 15. Take four capsules daily. I take mine about an hour before bedtime with a glass of milk. My only noticeable side effects so far are increased fatigue and constipation. My PSA has gone down from 5.35 on August 15 to 3.36 on September 5.

[charmander]

I was on Zytiga then moved to Xtandi. Neither had any real side effects. Maybe I had some increased fatigue but that could also have been attributed to the Lupron. When I felt tired I often made myself go for a walk or do some other physical activity that made me feel like I was saying screw you, I can survive!

[Hidden]

Hi All,

After reading the above posts of guys being moved to X after Z, I'd like to know what your PSA changes were, to call for the change. My MedOnc doesn't seem to be on my page. In all truthfulness, I want to get off the ADT completely.

Joe

[AlanMeyer in reply to Hidden]

Joe,

As I understand it, most oncologists want to see a full year of undetectable PSAs before they endorse getting off ADT completely. Even then, it would be unusual to be able to stay off for a long period, e.g., a year of more, without a rising PSA.

There is a new approach called "Bipolar Androgen Therapy" ("BAT") that involves a period of cutting off testosterone followed by a period of super high testosterone, cycling back and forth between the two phases. It's possible that will give you some (half and half?) of the quality of life you'd like to get back without making your life shorter. I suggest that you read up on it as much as you can and then go see your oncologist about it. One reason for reading up in advance is that your oncologist may have no experience with this and be afraid to try it. If you can give him good info, maybe even a printout or two of the best articles, it might convince him that you have thought a lot about this and know what the relative risks and rewards are.

If you want to pursue this in this group I suggest 1) searching for BAT in past postings and, 2) starting a new topic since not everyone with information about BAT or intermittent androgen therapy (IAD) is likely to be reading this posting.

Good luck.

Alan

[Wflaggs]

I have been on Xtandi for 3 1/2 years. PSA has stayed non-detectable once it went down very early after I started. Side effects have been few and very tolerable. Obviously some fatigue and strength issues which I attribute more to the Lupron. I had a few cognitive transient issues but nothing significant and nothing that lasted. Obviously very happy about its effectiveness.

[Daddysdaughter in reply to Wflaggs]

Thank you, so much, glad to hear that you had little side effects. I hope and wish the same for my father!

[Guber]

W Flags are you on just xtandi or Lupron plus xtandi

[Daddysdaughter in reply to Guber]

Lupron, and will begin Xtandi today🙏🏻🙏🏻🙏🏻

[TRinVirginiaBeach]

I began Firmagon (degerelix) in June 2016 then added Xtandi in February 2017.

My PSA dropped to <.01 within two months.

The major SE for me are fatigue, moderate brain fog, and loss of muscle strength.

The fatigue usually comes on mid-afternoon. I have several options for fighting that: strong coffee, 5-hour energy drinks, a 1-hour nap or just grind through it.

Brain fog: I began taking Prevagen. I can't prove it, but I feel as thought the fog has improved.

Strength loss: I hit the gym 4-5 times weekly. I do at least 30 minutes of cardio with my heart rate >70% and 15-20 minutes strength on each visit.

It's tough to add muscle with 0-35 Testosterone, but, I think I have stopped the loss of muscle.

I hope this helps.

Tiny

[David20451]

Had the Provenge protocol between rising PSA on Zytiga and starting Xtandi. Been on Xtandi for 3-1/2 years with undetectable PSA.

[Daddysdaughter in reply to David20451]

David when you started Xtandi you never have any symptoms or side effects?

[JPD7]

I have been on Xtandi for 3 months. I have experienced sluggishness, bloating and swollen feet. Other than that, not too bad!

[Daddysdaughter in reply to JPD7]

Did you start out with the full dose?

[JPD7 in reply to Daddysdaughter]

Yes, full dose of 4 pills.

[Daddysdaughter in reply to JPD7]

How long after you started did side effects begin?

[JPD7 in reply to Daddysdaughter]

About two weeks.

[Lakefisher]

I find that taking Xtandi at night works for me. Don't have any side effects during the day. Sometimes I take .5mg Atavan to help me sleep.

[Daddysdaughter in reply to Lakefisher]

Do I take 4 pills a day?

[Magnus1964]

I am on a drug trial that includes xtandi. My doctor told me that some of the participants had to drop out because of side affects, others because their PSA started to rise again. I am the last man standing in the trial. I have bee on the trial for 1 1/2 years, had minimal side affects.

[Wflaggs]

Lupron plus xtandi

[Daddysdaughter]

Lymph node metastasis and swollen leg? Is it possible it's from lymph node or because of Xtandi? Not bilateral, just left side.

[Tonyland in reply to Daddysdaughter]

Hi there. How's your dad doing?

Mine started Xtandi last sat and as of today, we've has two days in the week with dementia type events. Seems to be after he takes his pills for the evening.

[Daddysdaughter in reply to Tonyland]

Well, he doesn’t complain of any memory loss foggieness or dementia type symptoms as of YET🙏🏻

[RonL]

I’ve been taking Zytiga plus Prednisone for six months. I experienced no additional side effects than I initially experienced from the Eligard which I’ve been taking for three and a half of the last four and a half years and am currently on.