I'm wondering how long it takes for the drug to build up in the system, and what are people's experiences over the longer term? When did the various side effects start showing up for you?
I started Xtandi about 10 days ago. So far so good. I am not noticing any significant side effects as of yet... maybe a little more tired in the afternoons, maybe a slightly different pattern to my hot flashes (still on Lupron.) The doc seemed thopeful I would do well on this because I am "young and healthy" in my early 50s. I'm taking 4 pills/160mg each morning.
I have already felt a reduction of pain that I believe was from bone metastasis. I've been experiencing pain in my pelvis/ischium gradually increasing over the past weeks/months - most noticeable when I would sit for more than 20 minutes. The pain was familiar from way back before I started Lupron/docetaxel in 2014. (I became hormone refractory in 2018 with my first detectable PSA, and radiographic progression in Dec. 2019 with tumor growth showing up on CT). It feels like this pain has slowly subsided over the past week so that I am no longer noticing it when I sit in my office chair.
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You should have experienced a adverse side affects by now. The one side effect I experienced was gas. You may have to stock up on Gas-X. It does appear that you are tolerating xtandi and doing well.
Thanks for your reply. That is so funny about having gas! I just thought it was something I ate. I don't know how long it would have taken me to make the connection. I was already known to be farty, but now that you mention it I realize that volume and frequency have definitely increased. I don't remember reading that in the list of side effects
I have been on Xtandi along with either talazoparib or placebo in clinical study for 7 months. Only noticedsble side effect has been added fatigue and occasional fogginess. I've switched from taking it un mornings to evenings which seems to have helped. Plus upped my game on exercising. Since I didn't have any real pain before i couldnt say if I gained relief. Last 3 scans have shown stability, although PSA has been slowly rising. Hopefully this helps. Oh? And I've adopted a more plant based diet. That seems to keep any weight gain in check.
I have been am on the same trial for the past 10 weeks. Had scans last week and I also have shown stability and my PSA has dropped from 18 to 7.8. I have similar side effects mainly fatigue.
"Following oral administration (XTANDI 160 mg daily) in patients with metastatic CRPC, the median time to reach maximum plasma enzalutamide concentrations (Cmax) is 1 hour (range 0.5 to 3 hours). At steady-state, the plasma mean Cmax values for enzalutamide and N-desmethyl enzalutamide are 16.6 μg/mL (23% CV) and 12.7 μg/mL (30% CV), respectively, and the plasma mean predose trough values are 11.4 μg/mL (26% CV) and 13.0 μg/mL (30% CV), respectively. "
"With the daily dosing regimen, enzalutamide steady-state is achieved by Day 28, and enzalutamide accumulates approximately 8.3-fold relative to a single dose. Daily fluctuations in enzalutamide plasma concentrations are low (mean peak-to-trough ratio of 1.25). At steady-state, enzalutamide showed approximately dose proportional pharmacokinetics over the daily dose range of 30 to 360 mg. "
I went on added Xtandi about 3 years 4 months ago after my PSA had a secondary rise back up to around 95.0. It took my PSA back down to the 1.2 range within a few months. My side effects were mostly a continuum of what I had with on-going Lupron. Same general trends. Background fatigue and less peak/extended energy were the most notable for me as I aged from 68 to 71. I happen to take my Xtandi before bedtime, but I'm not so sure it makes much of a difference in my case. Everybody is different. I'm still a lucky guy to be around since original diagnosis at age 65 with lots of mets and a PSA in the thousands.
Thanks for sharing information that the pharmacist was unable to find. This was very helpful. Good luck to you. I hope I get some good mileage out of it.
I am 72, and have had a long list of treatments and drugs since 2009 Dx with Gleason 9, inoperable, Psa 6, and age 62.
I began Xtandi after 3 x Lu177 shots last year in April. I suspect Xtandi worked until last November when I reached Psa nadir of 0.32, after beginning Lu177 with Psa 25.
Since last November, Psa is again rising, now 3.5. I got 8 months Psa suppression with Zytiga, and 6 months with Cosadex before that.
I am not aware of any side effects from Xtandi.
But I have been cycling 220km+ each week so I have very good level of fitness. During Zytiga, I had irregular heart rate especially in hot weather during a bike ride. So I cycled in early morning to beat the heat and had no problems.
These add-on drugs to plain ADT with Lupron, Lucrin, Eligard et all do not work forever and its not a matter of them building up in body; the cancer learns to ignore the drugs or block their action and make its own testosterone to keep alive and grow.
It may be time for chemo, and if that fails, and it very often does, you then move to Lu177, if a PsMa scan shows you might get a benefit.
My diet has much vegetables without any junk food or processed food and I don't fart any more than I used to.
Its better to stink and fart a little,
than hold it in, and become a cripple......
But NOT IN BED when your missus is with you.
Let the wind go free, for to bottle it up would be death of me........
Been on Xtandi since Nov 6, 2019. Side effects show up at different times and come and go for me. Fatigue all the time. Shortness of breath about 3 months after taking it. Bone aches and pain about 2 months after but disappeared after about a month. Farting all the time.
Hot flashes have returned within the first month and continuing. Good news is that the Xtandi has dropped PSA down to .88 in a slow and steady trend. Just want that trend to continue.
Taking Xtandi is so much better than taking a "dirt nap."
I have been taking Xtandi for almost 5 years now, SE’s seem to be cumulative, after taking a full dose for 2+ years I had to cut back to a half dose or 80mg daily. SE’s for me are fatigue (even though I take it in the evening) cognitive issues, brain fog etc. SE’s are less pronounced at 80mg but still there.
Recently my BP began to increase, Dr. Sartor at Tulane felt Xtandi was the likely cause. So after 5 years of being undetectable he suggested I stop the Xtandi and monitor PSA closely. I get an ultra sensitive PSA test through Labcorp. After 4 months of not taking Xtandi I had my first detectable reading at .008. Since I am still receiving Lupron this means I am now MCRCP. So I’m back on Xtandi and awaiting my latest PSA results to see if Xtandi has beaten the beast back into submission.
Be sure to monitor your BP while taking Xtandi, better yet, get with a cardiologist to help monitor cardiovascular health if you’re not already doing so. I’ve had to tinker with my BP meds a couple of times while on ADT the past 6 years.
Thanks Ed... 5 years is great! Also, it's good to understand that it continues to take it's toll over time. The farting situation is kind of humorous, I guess there could be worse things to deal with. I feel like I am already experiencing cognitive changes and a bit more struggle to focus and organize and remember what I need to get done... however, life has been a bit of a whirlwind lately with the corona-virus and working from home disrupting so much of my life. And I already feel like I've had some loss of memory and executive function from Lupron for several years. All the folks who have gone 2+ years on Xtandi give me hope that I might have a good run on this.
I'm seriously thinking of investing in a Peloton bike and membership to help me integrate more exercise in my life. I used to be an avid road biker when I lived in CA, but I live in WA now and the winters here have broken the habit for me, and I don't get to the gym as much as I like because I am working full time. I took spin classes before and loved them, but don't live near anywhere that offers them now.
Exercise is definitely a big help, I continue to exercise daily for 30-45 minutes, brisk walks with lots of hills, weights and ab work. I always feel better afterwards. I maintain a normal BMI and eat a Mediterranean diet, gotta stay healthy to fight the good fight.
Been on Xtandi for 15 months. Started with a large grape size lymph node behind collar bone and same size tumor on my chest wall. Both were gone not to be back after two months. I take it at night as it sometimes make me tired. Have been on Lupron for almost four years and I attribute all of the side effects to that since there were no new ones after I began Xtandi, Also on Zometa every month. Some bone aches for a few days after infusion with Zometa. Xtandi seems to be working for me. PSA has settled in at 0.9 for the past few months.
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