Fatigue on Xtandi - tips?

My dad started Xtandi 1 month ago, and he's struggling with extreme fatigue and loss of appetite. He also has some pain in his arm that came along with Xtandi.
Is there anything we can do at all? I don't like to see him like this.

HI Smurfine,

Jim has the load of side effects from Xtandi but its doing the job on his PSA so he tend not to complain too much. I make him eat lots of ice cream to prevent the weight loss.
Have you asked his doctor if the dose could be lowered? Jim can't do that because he's on a clinical trial but i have seen guys on another forum who have reduced the dose to 3 tablets or take them at night when fatigue is not such a problem.
Have you gone to the Medivation website and seen the LONG list of side effects for Xtandi? Probably not a good idea to let the guys see it lest they feel worse!
One of Jim's unique problems is that the xtandi worsens his restless leg syndrome. Gabapentin and hot baths seem to help.
Here's a link to a recent thread that may also be helpful..
www.healingwell.com/community/default.aspx?f=35&m=3330708
Let us know how he's doing. Is the PSA going down? If he's just started the Xtandi it may take awhile for his system to adjust to the full dose. The USToo forum has alot of guys on Xtandi so maybe you can check it out
http://www.inspire.com/groups/us-too-prostate-cancer/discussions/
Take care.
Marie and Jim

Thanks. My dad has had good effect of hormone therapy earlier. His orchiectomi kept the cancer in check for 6 years, and Zytiga for 16 months. Would it be an option to start Zytiga again instead? He had no side effects of Zytiga last time (in 2012-2014).
wampuscats: It seems from your signature that you've been on Xtandi twice (with a pause between), is that correct?

Yes, Smurfine, that's correct. The original trial called for 3 months of Xtandi along with the immunotherapy injections. His PSA stayed low for about 6 months . It was difficult watching the PSA rise to over 7. They amEnded the trial with 3 more months of Xtandi . We know he'll be back on lupron by summers end. It's been a good ride. We keep waiting for the next big thing to come along.
Marie

Hello...thought I'd chime in on this thread,,,,,
Husband was on Xtandi for 10 months with little side effects. Fatigue is usually always a side effect if you are on hormone therapy and any other cancer treatment medication (plus the cancer itself has this effect as well). I will post signature so you can view our journey.

For appetite, contact doctor for megestrol acetate, husband has been on this for several months and it seems to help with his appetite. I also provider Gatorade and Ensure Plus.

We are getting close to our end of the journey, and it has been worthwhile taking any and all possible medications or treatments to extend husband's life without losing his "quality of life". However, this part of our journey will not be with medications, and possibly he will regain some energy, although his blood counts are extremely low due to his latest treatment (Xofigo/Radium223) and his aggressive cancer penetrating other areas of his body.

Good Luck, and investigate the internet for web sites giving information about this disease and the outcomes, along with new treatments and clinical studies. This forum as been very instrumental in providing support and information, and I thank everyone who has ever posted a comment on any and all threads regarding our journey.

sal

Is it possible that the side effects decreases with time? I read an article about tolerance to medicine, and that the body can get used to the medicine with time and that the side effects also decreases.

Onthgodiy,
There are some journal papers that describe using reduced dose Xtandi. They certainly aren't rigorous scientific studies but they provide evidence that men can have marked improvement in side-effects while still getting good protection at a reduced dose. I would hope that your doctor is open to experimenting with the dose. I know of a number of guys who tolerated 120mg or 80mg much better than the full dose.

It's a worthwhile discussion to have with your doctor.

Hello, Onthgodiy ~

Good to hear from you here, my compadre.

I feel your next appointment will be important, in so many ways.

I'm mindful of you & sorry to hear of the fatigue you are experiencing.

Just looking out for you ~ and after reflecting on your message, here are some thoughts to share:

You're not too entrenched, yet, in taking XTANDI.

With that being said ...

I feel it is truly worth discussing the possibility of switching to ZYTIGA ~ which is prescribed for the same situation as XTANDI.

As you know, I have been on ZYTIGA for almost seven years now. One must also take two very tiny 5 mg tablets of PREDNISONE, which helps maintain energy.

Each case is different, but I have a steady flow of energy all day. I rise early in the morning and stay up until late.

Looking out for you, in all ways ~ when I originally started ZYTIGA, my oncologist said XTANDI was the other choice.

If I was having the extreme levels of daily fatigue that you describe, I know my oncologist would immediately recommend a change in medication ~ since there is an alternative.

I think it's WELL worth asking whether you can try ZYTIGA (Abiraterone Acetate) instead. The generic version (Abiraterone Acetate) become available in recent years, after Johnson & Johnson lost a patent battle.

Much to be potentially gained, in terms of mitigating this extreme fatigue you are experiencing ~ by perhaps switching to a readily available alternative medication ~ if your medical team endorses this possibility.

Keep us posted here. If this fatigue is part of your experience, day after day, you may have to become your own advocate and state that you wish to try ZYTIGA (Abiraterone Acetate) instead.

Stay strong in the battle, as you have been doing.

Wanting all the very best for you ~

CYCLONE ~ # Iowa State University

I quit taking Xtandi June 1, 2021 when it crippled me. I went from running/hiking/walking 45 miles a week down to 3 with a cane. Fortunately, I have recovered sufficiently to be back to as much as 30 miles in a week now.

Initially, all I got from Xtandi by way of side effect was fatigue and some weight gain. After a couple of months I my Shingles had come back despite my having had both vaccines, I got pruritis (nasty, itchy weeping sores that leave scars when/if they fade) on my arms (still have some occasional 'pops'), eczema on my elbows and knees, frequent gum infections, nightmares, sleep disruptions and constipation. My Eligard dry cough turned into an Xtandi wet cough. At 15 months the crippling side effect hit me. Following advice from the manufacturer I immediately quit taking it.

My team informs me that Xtandi effects the immune system (among other things) and side effects will continue 'for quite some time', perhaps indefinitely. They are not sure when it will finally clear my system. Xtandi needs to be used with great caution in my experience. It is a very powerful drug.

Hello, Onthgodiy ~

I'm thankful, very thankful, to see that PSA reading in the low decimals.

We both know that is a blessing, based on where our PSA levels stood, at diagnosis.

I'm sure your medical team provides excellent guidance, in terms of navigating through Type II diabetes, while pursuing oncology treatments.

A couple more things I thought of ~ to add to my original responses:

* My doctor emphasizes that staying active helps boost my energy levels. I just got back from a morning trail walk. I walk throughout the week and weekends. I really look forward to my walks.

* My oncologist reminds me often to maintain healthy hydration ~ which helps mitigate fatigue, too.

Some years ago, I remember feeling more fatigued, and he stated he could tell I was somewhat dehydrated, which leads to greater fatigue.

Easy breezy tip: If one's urine is dark yellow, in the toilet bowl, that's a quiet "red flag" that more water consumption is needed. WATER ~ the magic elixir!

We have a detailed, collective thread regarding XTANDI.

So ~ I just now booted it up to the top of the feed, a few minutes ago, on this website.

You'll see it there at the top today & you might wish to add a post, when time allows, to document your experiences with XTANDI, Onthgodiy!

No one here fights alone!

We're a band of brothers & support sisters!

Handshake, fellowship, brotherhood ~

CYCLONE ~ # Iowa State University