Starting Xtandi after PSA increase, w... - Advanced Prostate...

Advanced Prostate Cancer

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Starting Xtandi after PSA increase, what to expect?

Cheerr profile image
33 Replies

After 6 cycles of chemo, PSA nadir touched 0.015 in Jan. PSA crept up to 0.288 in Aug and currently reached 0.667.

Das has been advised to start Xtandi (Enzalutamide) 40mg - 4 pills a day. (2 each after breakfast and dinner). MO apparently believes Xtandi is better than Zytiga for a few reasons.

As I recall from several posts I read here, many have faced severe side effects due to Xtandi like numbness in legs and extreme fatigue, and some either halved their doses or discontinued it.

Is there anything to be cautious about or monitor as we start off Xtandi?

Thanks!!

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Cheerr profile image
Cheerr
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33 Replies
Tall_Allen profile image
Tall_Allen

Why does he think Xtandi is better than Zytiga?

Cheerr profile image
Cheerr in reply to Tall_Allen

That ‘Zytiga May cause elevated blood sugar levels’ which in turn may flare up the cancer. And we have to monitor some blood levels carefully like Potassium’. What do you think? Thank you.

Tall_Allen profile image
Tall_Allen in reply to Cheerr

I don't think increased blood sugar has anything to do with prostate cancer progression. It's true that low potassium, high blood pressure, and edema can result if the replacement dose of prednisone is inadequate. But Xtandi comes with its own set of side effects. There is some evidence that the total amount of time in which advanced hormonals are effective may be longer if Zytiga is used first:

thelancet.com/action/showPd...

in reply to Cheerr

Zytiga definitely raised my husband's blood sugar into the "very unhealthy" range. Xtandi didn't have the same effect. Good luck!

RyderLake2 profile image
RyderLake2

Hello,

I have taken Xtandi (enzalutamide) for more than three years. My recommendation is to take all four pills before bed time. Xtandi does cause some "brain fog" and fatigue. In my opinion it is better to take it at night when you do want to sleep. Hope that helps!

Cheerr profile image
Cheerr in reply to RyderLake2

Hi, so if 4 pills taken together after dinner? Will taking with food help lessen any effects. Thanks

RyderLake2 profile image
RyderLake2 in reply to Cheerr

Hello,

Not in my experience. I take Xtandi about three hours after dinner has been completed. Other than waking up a couple of times per night to take a pee, I sleep very soundly. I was given the choice by my medical oncologist morning or evening as to when I wanted to take Xtandi. I said at night, and I still remember him saying at the time "good choice".

tango65 profile image
tango65

This is the FDA information about XTANDI and it details the side effects found in the clinical trials.

accessdata.fda.gov/drugsatf...

" The most common adverse reactions (≥ 10%) that occurred more frequently

(≥ 2% over placebo) in the XTANDI-treated patients are asthenia/fatigue, back pain, hot flush, constipation, arthralgia, decreased appetite, diarrhea, and hypertension. (6.1) "

2dee profile image
2dee

On Lupron since Jun 2018. PSA drop from 1300+ to 1.2 range. After 2yrs PSA started rising and more alarming was the reduction in doubling time. Added Xtandi 5mos ago and quickly dropped from 9.1 down to .5 so for ME Xtandi is very effective. SE so far only seems a little more fatigue and a little more brain "fog" and balance loss.

All in all Xtandi is very powerful at lowering MY PSA with minimum disruption to MY QOL.

Go for it...

2Dee

pilot52 profile image
pilot52

Ok I was on Xtandi for 19 months before it failed. I was able to retain my commercial pilots license, I had no real side effects to mention. I do stay physically active but who knows. I do understand your concern but hit it head on and see what happens. People who do well very seldom post but in reality I could not tell any difference since I have been on Lupron for years. I really think your underlying health may play a difference plus physical training and being positive. Good Luck , Blue Skies

Olivia007 profile image
Olivia007

My dad took it for about 5 months it made him very tired, forgetful, weak and could barely walk. I called the makers of the xtandi and they told me to stop the pills and talk to the doctor but as per usual he hasn’t heard any side effects?????? My father went from being bedridden to now being able to cut his own grass. He is 82 so maybe his age worked against him? Good luck

j-o-h-n profile image
j-o-h-n in reply to Olivia007

Do you think you can convince him to cut mine?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 6:17 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

You have grass?

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Painted concrete.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 6:26 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

That's what I remember

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Concrete Jungle

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

We used to have grass.... but the city of New York sent out a flyer saying "keep off grass"..... Besides it's easier to mow now..........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 6:32 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

That why I left for greener pastures

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Well you may be physically in the burbs but your heart is still in the big apple.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 6:37 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

This is true...I miss a lot about the city and neighborhoods...and the food!!!!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Especially Ethiopian food...........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 6:45 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Pasta beu injera...the best!!!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Good to the last bone.......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 7:00 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

My favorite smooth jazz group...Down To The Bone ...a Brooklyn group!!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

I remember them.... their first hit was "Toomarrow Toomarrow" Lyrics "I'll finish you TooMarrow".....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 7:19 PM DST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

They were an instrumental group....you were thinking dry bones by the delta rhythm boys!!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Right I got bones mixed up....

** click on the title on top of the video to watch the video **

youtube.com/watch?v=pYb8Wm6...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 7:36 PM DST

depotdoug profile image
depotdoug in reply to j-o-h-n

I’ll used a pressure washer on your lawn J-o-h-n.

j-o-h-n profile image
j-o-h-n in reply to depotdoug

Thanks.... now all I need is water.......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 7:01 PM DST

depotdoug profile image
depotdoug in reply to j-o-h-n

The grass grows greener on the other side. Ill mow both yards. J-o-h-n’s and your dads Olivia.

EdBar profile image
EdBar

Fatigue and brain fog/cognitive/memory issues mainly. I’ve also had headaches that I had to address. I take it in the evening around 8:00, I tried taking it during the day and it only made the fatigue worse.

Ed

Magnus1964 profile image
Magnus1964

You have been given some good advice here. Zytiga would be better, you have had casodex which is a "ludimide". So is xtandi. Go to Zytiga and save xtandi for later.

If you stay with xtandi take all 4 pills after dinner, any side effects would be tolerated at night.

Biteson62 profile image
Biteson62

I believe the labeling for Xtandi says take all 4 pills at once any time of day. I have been on it 2.5 months now. Fatigue and skin changes so far as well as increased loss of sexual desire and function. There comes a time each day when the fatigue comes on very strong.

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