I've been on it since sept 2019 --- had mets to liver....... last PSA was sept 2020 at 0.7
Dr seems to be pleased and tells me all is well..... I'm not so sure....
T levels as expected are so very low, and I feel worse over the past few months - A few questions..
My breast were swollen and sore but over the past few months they are not sore --- does or could this mean Xtandi is no longer working?
I asked my MO this month if I could take a holiday from the med - he agreed, saying he could always find another drug to help me...said the holiday could be 6 months!!!!
Can the cancer spread to the back from the liver?
Thanks...
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ken12491
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I agree with xpo1. To begin with your psa isn’t undetectable yet , that’s <0.1 . I’m just offering my personal opinion.... I’m not a doctor and don’t even play one on TV ( or this group ). I think it was TA that said it best .... when you go on adt you stop the easy ones first but the more resistant ones remain. Then you go on vacation and the remaining more resistant ones grow more plentiful. When you return to adt you are fighting the most difficult - more resistant ones up front . Not good odds. When it’s working , don’t mess with a good thing, in other words .....just IMHO. Your opinion may vary.
You bet buddy ... as with everything on this or any group, your medical team is the authority in your care. We can give you info to run by them or perspectives that can be helpful in making choices tho.
I felt worse and worse on xtandi until I was an invalid. Cut dosage a few times and settled at 2 pills a day at 9 PM. Have my life back.Been on it about a year longer than you and OK with new normal.
My last 6---0.12--0.08---0.00--0.12--0.11--0.10--I get lot s of ups and downs but seems to be holding in the 0.12 range for the last 2 1/2 years on 2 pills a day. Always get a little nervous as it's on the upswing but seems to be holding it static...
Hello, I think it all depends on the person. I have been on Xtandi (enzalutamide) since September, 2017. That's three years and four months @ four pills a day. It is still working for me touch wood keeping my PSA and testosterone down and extensive bone metastases in check. No significant side effects so far other than a little fatigue and some brain fog. Hope that helps!
xtandi since Aug 2017, after chemo. In combo with lupron has slowly brought psa to <0.1 Like Ryder extensive bone mets. I do have foot neuropathy which I pretty much blamed on chemo. It may be that xtandi caused it but I would do it again. I have fatigue and etc. but manageable. Considering the meds I'm taking, which causes what side effect I do not know. I will stay with xtandi until it quits working.
Having Pca mets in liver is a very serious problem. I had Xtandi from May 2019 and it maybe worked until November 2019, but used to boost PsMa for LU177 treatment for countless soft tissue mets in lymph nodes and bones, but not yet in any organ.Psa before went from about 1.7 to 0.32 nadir, but by July 2020, Psa was 30, before I had 5th an 6th dose of Lu177. AFAIK, Xtandi kicks the can down the road like Zytiga and Cosadex and plain old ADT.
I now have only bone mets with big variation in PsMa SUV between 1.6 and 10, but that's result of 9th PsMa Ga68 scans last November 2020. I dunno what happens next. Psa is about 8, no aches anywhere, mets are all smaller than before last two doses Lu177. But lots of small mets in bones, and I have no idea if they will spread back into soft tissues so maybe I have Ra223, and maybe that now works better than having more Lu177 because Ra223 is not dependent on PsMa expression at tumors. I see onco next week to maybe decide what's next.
If you had high PsMa expression at liver mets, Lu177 would be good for you. But left untreated, lever mets are killers, and I watched a friend die last year at 60yo from liver mets because he became so sick so fast that he could not get Lu177 in Australia where I live and where its easy to get after your chemo has failed. Pca killed him in less than 3 years.
But I got Pca about 2004, diagnosed Gleason 9 in 2009, inoperable, and probably with much spread, but CT scans showed nothing, but first PsMa Ga68 showed first mets 2mm dia in 2016. The number of all mets increased while on ADT, +Cosadex, +Zytiga, +Xtandi, +chemo, and only Lu177 reduced all soft mets, but not all bone mets.
BTW, "undetectable" in Australia means Psa < 0.01 but many get to that low level, but weeks, months or years later the Psa bounces right back up with a short doubling time.
Nobody can accurately predict how they will fare if Pca continues to increase after what seemed to be a successful RP or other initial treatment. RP might have succeeded if Psa remains < 0.01 for 5 years without any other treatment such as ADT or EBRT.
Another friend did have good result with RP, and Psa went "undetectable" for 4 years, then slowly but surely Psa increased, so he had 70 grey of EBRT, and h's been OK since then, about 4 years ago. He never even needed to have any form of ADT and the ad-on drugs such as Xtandi. Lucky him, and he's 80, and doing OK.
I am cycling 200km+ a week, as I have been doing since 2007, and am feeling strong and healthy at age 73, but I have bones riddled with Pca.
I should have had a very well done RP done 5 years before diagnosis with Gleason 9 in 2009. In 2004, maybe no Pca was present, which then would have reduced possibility that I ever could have had Pca develop. Many RPs are too little too little, and too late. But most men put off the evil day when they should wave goodbye to being a Hot Rooster at 55, and be happy to never have sex again.
My dad has been on it for about 3 years now. He has 4 pills a day with a Lupron shot every 3 months. His psa went undectable and the Mets disappeared. His only big side affect is lack of energy which he was combatting by going to the gym (until covid). He is hoping to keep riding it out until it doesn’t work anymore.
Not sure how long it works but I have been on it now since 2016. And still working. I got the man boobs shortly after starting lupron and there still here with me. Fighting the monster a day at a time
You are probably feeling some side effects from xtandi. I am not a fan of intermittent (vacations) ADT treatment. If you can't tolerate xtandi move on to another ADT drug. I would recommend casodex. It's an older ADT drug with far less side effects.
Hi Magnus, may I ask whether you see any case that Xtandi is not effective but Casodex is worked? I think Xtandi is 2nd generation so it should be stronger than 1st one. Thank you!
Xtandi (enzalutimde) is a newer "-lutimides". And it is stronger than casodex. But starting with casodex as I did is a good way to go. I was on casodex for 5 years. Then moved to zytiga for 3 and 1/2 years before moving to xtandi. I think this is a good long range plan.
Your PSA going from 0.3 to 0.7 suggests the Xanti may no longer be working for you. Would do one more PSA check and if higher that confirms it. Would be time to plan for next treatment such as systemic chemo with docetaxel next. Your MO may be okay with you taking some months off since it is still fairly low giving you some “wiggle room” in the interim. The next option after that would probably be abiraterone. Good luck. 👍🏼
I am not male, so I don't have personal experience, but just sharing my dad's experience. He was put on Xtandi after bicalutamide stopped working. PSA was 50 - no mets. There was a gap between Bicalutamide and Xtandi - dr. wanted to see how my dad would react or something( I was not for that approach at all) . PSA went from 50 to 250 (during the 3-4 month gap) (My dad had not kept up with what his psa was, moved states, didn't keep in touch with dr., etc... and over a few short years it grew fiercely - then I came on board with care). Xtandi worked well for 5 or 6 months(brought psa into the teens), but my dad had no appetite. When he psa started to go back up, the Dr. put him on Zytiga - which worked well for 18 months or so. But, he was in his 80s and had compromised immunity due to chronic infections. I personally would not want my dad to take a vacation from drugs. I wish you well.
I’ve been on xtandi (160 mg) continuously for almost 5 years now. My PSA over these 5 years ranges from undetectable to .3. Really no side effects. So far it’s been a good run.
Been on Xtandi Lupron 47 months now. Ya it sucks but I was told if I did a vacation I would be dead in 12 months. So its a no brainer, and those are always the best for me lol
Been on Xtandi for 6-1/2 years. Periodically ask the Doctor about a "holiday". Response is always that if it comes back it will be a monster to deal with. So...I stay on it.
Are u taking Xtandi with a major androgen receptor blocker such as Lupron or digaralix? If not Xtandi might not last as long as it could. I take Lupron and Xtandi. I'm 9 years out. I'm stage 4 M1, Gleason 9, psa 31 at diagnosis. My doubling time 5 months. No vacations, full dose. You need to keep PCa's head underwater, IMHO. Kevin
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