Xtandi after Zytiga: This site is very... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi after Zytiga

DSEE profile image
DSEE
21 Replies

This site is very helpful.

Who has taken Xtandi after Zytiga fails?

What was your experience?

Was it successful for a length of time-

What were your side effects?

Hoping to get input on these things-

Mostly how long Xtandi works after Zytiga.

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DSEE profile image
DSEE
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21 Replies
YostConner profile image
YostConner

I got 32 months on Zytiga. Before I started Xtandi, I did the full Xofigo course. I started Xtandi last July. I’m still using it, but the benefit is about over. The major side effect is fatigue—serious fatigue. In fact, we cut my dose in half. Other side effects have included achy joints, achy muscles, runny nose, ear wax build-up.

DSEE profile image
DSEE in reply toYostConner

Thanks for this.

I had 11 months on Zytiga.

3 Xofigo before hemoglobin went to low to continue.

About to start Xtandi-

monte1111 profile image
monte1111 in reply toYostConner

Did not connect my runny nose and earwax problem to Xtandi. Thanks for the illuminating info. Those are symptoms that seem to come and go. Enjoy.

joeguy profile image
joeguy in reply tomonte1111

Yes, apparently sinus problems are common with Xtandi....I have had lots of nasal issues since starting it 3 months ago.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

That's what sleeves and hair pins are for.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/28/2019 6:42 PM EST

Carol2 profile image
Carol2

My husband got 12 months out of Zytiga, then Docetaxel every 2 weeks for 6 months. After this when PSA started climbing again Xtandi was introduced and he got 3years 9 months. Along with these drugs he also had Zomenta infusions every 3 months. Now on Lu-177, just had 2nd infusion. Definitely fatigue.

Magnus1964 profile image
Magnus1964

I got 3 1/2 years out of zytiga. Now on xtandi + a mystery drug from Eli Lilly. I am coming up on 3 years with this trial.

The only side effect is gas. I'm eating GasX tablets like candy.

mcom profile image
mcom

My dad is on xandi with a Lupron injection every 3 months. When he was on Zytiga they found 2 bone Mets and then due to insurance reasons they switched him to xandi about 6 months ago. They told him they were hoping to get at least 1 year out of it. At his scan on Tuesday they couldn’t find the bone Mets anymore so I think that’s a really positive effect of the medication. He has some hot flashes and mild fatigue but goes to the gym a few times a weeks to try to combat that. Also his psa has been undectable for the past year.

EZgoi profile image
EZgoi

My hubby got 3 years from Zytiga; Switched to Xtandi full dose ... made an invalid out of him within a few weeks. 3 week break then resumed with only half dosage. Has been on half dosage for 4 months. Severe fatigue, joint and muscle soreness but some days tolerable, some days extreme. Sleeps a lot during day, but restless at night moving back and forth between bed and recliner in our bedroom. PSA staying around 12 to 13, did not drop on the Xtandi but hopefully won't start climbing for a while. Hoping to get at least a year on it before going on Chemo as MO told him last month that once he goes on Chemo, the life expectancy is 1 1/2 to 2 years...that made him somewhat depressed. We were surprised he shared those statistics with us! Good Luck.

DSEE profile image
DSEE in reply toEZgoi

Can you tell us the initial diagnosis of your husband?

Gleason?

Mets?

Initially diagnosed when?

j-o-h-n profile image
j-o-h-n in reply toEZgoi

I would not put too much stock in your MO's prediction. I think he/she needs to clean his/her crystal ball with windex. I'll make a prediction and I'm good at it because my mother and I were Veil babies. So I would predict your Dear Husband and you will be around to celebrate his 95th birthday.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/28/2019 6:50 PM EST

blet profile image
blet in reply toEZgoi

How was his appetite on Xtandi?

DSEE profile image
DSEE in reply toblet

About to start Xtandi if doc clears me today.

Appetite already suppressed.

Have you lost appetite on Xtandi?

Shooter1 profile image
Shooter1 in reply toDSEE

No appetite loss for me on lowered dose of xtandi. I've gained almost 20# in last 8mo.

EZgoi profile image
EZgoi in reply toblet

So so...less than normal but not by a lot.

JLS1 profile image
JLS1 in reply toEZgoi

We have had far too many experiences with MO's, including top MO's!!, having horrific bedside manners, completely lacking empathy as they spit out their shocking statictics and/or horrifying prognosis! This adds extreme stress, which feeds/ignites the cancer...and it takes away hope, causing even more agony to the poor cancer patient, and the family members and loved ones as well!!

DSEE profile image
DSEE

Thank you for this response.

I did chemo upfront- before Zytiga.

Wondering if they will try it again.

vandy69 profile image
vandy69

I got 1 1/2 years from Zytiga and then 1 year from Xtandi (the first time).

Did a rechallenge with Xtandi after 6 cycles of Docetaxel/Carboplatin chemo and got another 4 months.

I always took full dose of Xtandi in the evening and had no side effects.

Best wishes. Never Give In.

Mark, Atlanta

joeguy profile image
joeguy in reply tovandy69

Did your PSA get to what they consider "undetectable" level with Xtandi (0.0 ish) ? I am there after 3 months on xtandi, and hoping to get a good 2 or 3 year run out of it.....but one never knows how long these drugs will last

vandy69 profile image
vandy69 in reply tojoeguy

I my almost 7 year battle I have never gotten to undetectable level. Have gotten to .3 several times from 29 at diagnosis. Metastatic in lymph nodes and liver.

Mark

My OH had severe fatigue on Xtandi and some pains in his joints . Now stopped taking it as it is no longer working , had Xtandi for 9 months.

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