Xtandi

[racoonwar]

Anyone taking Xtandi? Affect on PSA? Adverse side effects?

[Shooter1]

I've been on it for almost 4 1/2 yrs. It is now failing... The full dose (160 mg) made me a complete invalid but 80 mg pushed my PSA to undetectable after about a year... Best of luck to you

[Echotango51 in reply to Shooter1]

Shooter1, how long before it started to fail.

[Shooter1 in reply to Echotango51]

Xtandi lasted about 3 1/2 years then started to have PSA rising.......Still worked on original mets when new ones were zapped... but now even with Ra-223 after radiation, I am getting new mets.... Latest-3 more ribs and left iliac. I am still on xtandi but won't be for long... since Ra-223 is failing also, I will get new mix of zytiga and a parp inhibitor starting in about 3 weeks... Wishing us all luck with all our treatments... Life Is Good--I start fly fishing lessons on July 8th with Reel Recovery- Be well! Fish on!

[Echotango51 in reply to Shooter1]

Thanks, good luck to you, go get those fish.!!

[CAMPSOUPS in reply to Shooter1]

Hey Shooter I hope fishing was good.I just saw this. Are you having BAT coming up or the Zytiga/Parp you mentioned.

ULTRA LIGHT FISHING

[Shooter1 in reply to CAMPSOUPS]

Hoping to get the BAT first.. PSA and Alk/phos way up today. Zytiga/PARP if this one doesn't stabilize me.

[lcfcpolo in reply to Shooter1]

Good luck. Rooting for you Shooter

[Echotango51]

I just started June 13th, full dose 160mg , no side effects so far. I will find out my psa number July 13th. Good luck!!!

[RyderLake2]

Hello, I have been taking Xtandi (enzalutamide) since early September 2017. That's two months short of five years. My PSA dropped from 3.4 to 0.044 in a month. It has remained very low for the first 56 months. Only in the last two months has it risen to 1.6. Obviously I am a big fan of Xtandi but there are also strong adherents on this forum to Zytiga. As mentioned many times before, they are the Pepsi and Coke of second tier treatment. Both have their advocates and detractors. I chose Xtandi because you don't have to monitor kidney function quite as frequently and it doesn't require prednisone.

Side effects for me have been minimal. Loss of libido is a big one. I have also lost most of my body hair but not the hair on my head. The other side effect is fatigue. I try and mitigate that by taking the four pills at night and sometimes taking a nap during the day. Good luck!

[dhccpa in reply to RyderLake2]

Do you have any info on a cheapo generic enzalitamide coming down the pike? Or still far off?

[RyderLake2 in reply to dhccpa]

Hello, I can’t answer that question. I live in Canada and my Xtandi (enzalutamide) is paid for by the provincial cancer agency. They are not generic. Each bottle contains 120 40 mg capsules (enough for a month). The Xtandi comes from Astellas Pharma Canada. The pharmacist once told me that the retail cost is $40 a pill. You need to take four pills a day. So do the math x 365 days x five years. Not cheap, so we are very grateful.

[dhccpa in reply to RyderLake2]

Ok thanks

[monte1111 in reply to RyderLake2]

I have been on Xtandi since August of 2017. That is roughly $600,000. Kaiser has generously picked up the entire bill. (They make have been reimbursed by Uncle Sam) I was 0.1 psa for a long time, but it has clicked up to 0.2 for each of the last two tests. (every 3 mo.) Will find out in about 2 weeks if it is finally failing. Extensive bone mets were stable as of imaging July, last year. Covid, 6 mo. ago, really slowed me down. I can now walk across the street and back without too much trouble. Breathlessness, weak legs. Not enough oxygen. Someone here said cancer was something a person endures. I think that sums it up nicely.

[RyderLake2 in reply to monte1111]

Wow! You are indeed fortunate. Your cost $600,000 (USD) is double, almost triple what the same drug costs in Canada. For a similar time period (I started in early September 2017), the cost so far has been approximately $292,000 (CDN). I consider myself to be very fortunate that the provincial cancer agency has picked up the entire cost. My oncologist watches me like a hawk with monthly PSA tests. I don't have the breathlessness and weak legs that you are experiencing, except when a pretty girl goes by! 😊😊

[Bjry in reply to RyderLake2]

I'm into my 5th week on Xtandi. I had a blood test after 3 weeks and my PSA had dropped from 39 (doubling every 3 months) to 1.1. Needless to say I'm very happy with the initial response, so far my only side effects are a marginal increase in fatigue and a mild allergic reaction - red spots from my feet to torso. The red spots are fading so I'm happy to pay my $5.80 a month for Xtandi - the rest is paid by the Australian government tax funded medicare and PBS schemes.

[RyderLake2 in reply to Bjry]

Good on you mate! You have to like Medicare.

[tango65]

This info is from FDA, has side effects and some of the results of the clinical trials:

accessdata.fda.gov/drugsatf...

[Hidden]

The full dose caused full body arthralgia. Every joint ached. He couldn’t hold a coffee cup or turn the door knob. They cut it to a half dose and he tolerates it. He stayed on it while going through a full course of Jevtana. The combination worked but we’ve been only out of it for a couple months at this point and his PSA has gone up a tiny bit. So we are waiting to see. But he felt much better on Zytiga.

[Rogersw]

Been on it six weeks (160 mg) seems to be working psa dropping 90 to 65 whereas Zytiga for three months seemed to have little effect as psa kept rising.Side affects fatigue and leg are stiff but being 75 probably doesn’t help but nothing else.

[Ian99 in reply to Rogersw]

You’re doing well on bonus time! Am on Zytiga with similar results to you, so now considering Xtandi. Was a rising PSA the only reason for the change? Were your mets stable ? Good luck with the medication.

[lcfcpolo]

I've been on 4 tablets of Xtandi for 23 months. Really good effect on PSA from 1,311.00 down to 0.04. Also on ADT. It is difficult to know if some of the fatigue and muscle loss is caused by ADT or Xtandi. Exercise really does help. Good luck.

[CYR7]

I’ve been on Xtandi full dose for three months. In the second month the effects hit me like a freight train, totally exhausted and muddled all day, and that brought about depression and emotional turmoil. Reduced to 3 pills, helped a little bit but still suffering immensely. Finally got my life back at 2 pills. By the way my PSA went down to negligible, and is sustaining at 3 pills (0.019). Will find out at my next PSA test if it holds. If you are having serious side effect, call your oncologist and cut it asap.

[larry_dammit]

Xtandi and I have been together now for 5 1/2 years, working so far, does not play well with other drugs. Costs a lot and the side effects are as posted in the warnings.

[jcarey79]

I started Xtandi in October, 2021, along with Eligard, as the initial treatment after being diagnosed with Advanced Prostate Cancer. (Cyberknife radiation was performed in 2017 and my PSA remained very low until 2021 when it began rising quickly again.)

I came off Xtandi and Eligard in April, 2022 after two heart related issues that were attributed to the Xtandi/Eligard combination. I had a mild heart attack at the end of January and then severe chest pains in Mid March that had me back in the hospital for a week. I also had other side effects: hot flashes, fatigue, body hair loss, muscle loss, etc.

The switch from Xtandi/Eligard to Orgovyx was made because of lower heart/stroke risks with Orgovyx. Other side effects have remained, particularly the hot flashes. These are actually more frequent and more intense.

The cost of both treatment options is expensive but the results are what we were hoping for: PSA is not measurable and testosterone is 20.

[EdBar]

I’ve been using it for 7 years along with Lupron and dutasteride, my PSA was undetectable for 6 years, I saw a slight increase this past year and underwent Provenge treatment and it fell back to undetectable, we’ll see if it stays there. Fatigue is main side effect for me, along with headaches and cognitive issues. My onco has prescribed meds to help counter these SE’s.

Ed

[Magnus1964]

I was on xtandi for 4 years with little side effects.

[rogerandme]

On xtandi and lupron 1 year side effects hot flashes loss of body hair and libido… take four pills at night psa dropped from 79 to .01 … staying active and exercise helps a lot…

[ChuckBandChar]

Chuck’s been on it now for a little over 7 years. Side affects are tough. He tries to walk daily to help offset it.

[Foldem]

Xtandi/Lupron kept my PSA steady for 6 years before it failed. I had hot flashes for about 7 months and brain fog throughout. Now I’m doing Radium 223 and have a drug pill holiday. My brain fog cleared in two weeks, leaving just my old age as a lost memory excuse. 😜Good luck.

[j-o-h-n]

Greeting RW,

How about fighting your keyboard...

Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you should post your response in the bio section on your home page for your use and for other members’ reference.

Note: Answers are for your benefit, not mine.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/02/2022 12:57 PM DST

[dockam]

Hey, in my case, Abiraterone lasted for only 8 months in 202 and failed, then Xtandi lasted only two months. Obviously I'm Castrate Resistant and now awaiting a Kaiser scan approval to see if anything is actionable after my 3rd of chemos.My best to you on your PCa journey

Randy