From personal experience and looking at the posts here, it seems Xtandi is very effective. The most problematic SE is fatigue.
Xtandi seems very effective - Advanced Prostate...
Xtandi seems very effective
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anony2020
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I just want you to say hi to you and giving you emotional support. I don't have any experience with Xtandi as I am only getting simple ADT since June 2018 and my last PSA was 0.51 and I don't have any visible Mets on any scan. Originally I had around 15 bone Mets mainly in my spine. I wonder how long could I live? I am not depressed. I am actually happy. I didn't want to do Xtandi, but I am gambling with treating PSA. When my PSA get to 1.5 I irradiated my prostate in order to stay on Simple ADT and avoiding Xtandi until I can.
Could you enlighten me about your health situation? And could you copy and paste it to your profile?
István
Thanks for the support. So after my PSA went <0.1 I was off Xtandi for 2 months because the fatigue is affecting the QoL and work. Now resuming for the rest of 2 years. Meantime PSA kept on falling. Seems Xtandi had done a good enough job. Dont know what else to add really?
Ok I went private with the help of my work insurance. The public health was taking too long over organising treatment, or even getting MRI done. So I had MRI, bone scan, and PSMA Pet. They put me on triplet. That was not approved by the NHS at the time. On top of that, they only allowed Ztiger at the time.
So I got PSA down to <0.1 in four months, which seems to be standard, as far as I know.
I exercise everyday. Diet include veg, salad, seafood, and steak or roast beef with a little wine.
I have numerous bone mets - some painful (see my profile for details).
As you will no doubt have seen on here, there is a very wide range of responses and side effects that different guys have had to Xtandi. I've been on it for just over 3 months and have had very little extra SEs from what I already had with ADT. The only incident I had that could be down to Xtandi was a bout of vertigo/dizziness last month but other than that nothing bad.
My PSA has stayed low so far - last reading in December was 0.3 so I'm hoping it will keep going lower but time will tell. My December CT scan showed little change from the one in August.
Good luck with your PCa journey.
How is the affordability of Ztandi?
Since I'm treated on the NHS, I get it for free but I'm told the cost to the NHS is about £3,500 per month.
Can I just pop in on your comment sa as others are not misled.When you say you get it free.
It's not free, you've paid into a system that will provide you with a level of health care.
You paid and are paying into that system.
Others also in UK also do the same but due to waiting and other issues they pay extra and go private.
That end of the scale sees treatments and extra services(wrongly or rightly)
I've not had anything free.
I pay into a system and continue to.
Yes of course, I meant free at the point of use. It'll be a long time before I've used up the amount of tax and NI I've paid in over my career!
Agreed that NHS care is not always cutting edge and current wait times are unacceptable but do remember that your NI and tax has covered many benefits over the years - not just health cover. Uk has much better levels of statutory sick pay, unemployment benefit, statutory parental leave benefits etc than the US. You might not have needed these over your lifetime but it was there if you did. Another plus of the system is that there are fewer 'unneccesary' but profitable treatments promoted. Plus we do have some NHS world-leading cancer centres for PCa.
here in the USA , it’s listed as about $12,000 a month retail to medical facilities. That’s what Kaiser claims , although I’ve peeked at their records and they seem to pay a little less than $9000 a monthly box …but that’s probably a bulk buying price.
I have good quality insurance coverage and my co-pay is $100 a month.
Do you mind sharing what your insurance is? We just paid almost $3000 this January for xtandi. Monthly last year was almost $300.
I’m a retired government employee … my insurance is provided thru Office of Personnel Management and Kaiser. I’m on an old max coverage plan that hasn’t been offered for quite a long time.
Drugs dot com says the list price for a month , 120 pills , of Xtandi , in the U.S.A. is $14,383. The web says in India xanax would cost $1770 usd. Seems like the price of Xtandi varies widely.
I also pay $0 thanks to the co-pay card that smurtaw references. The "catch" there is that the Program is not valid for patients whose prescription claims are reimbursed, in whole or in part, by any state or federal government program, including, but not limited to, Medicaid, Medicare, Medigap, Department of Defense (DoD), Veterans Affairs (VA), TRICARE, Puerto Rico Government Insurance, or any state patient or pharmaceutical assistance program.
When I retire later this year and move to medicare (with a plan G supplement and part D Drug plan), my 1st month's co-pay will be about $3,000 and then $600 per month until we get to 1/1/24. At that point one of the new cost provisions from the recent "anti-inflation" bill takes effect which eliminate the 5% phase 4 catastrophic coverage portion of the co-pay. That means in my case that in January 2024 I'll pay $3,000, then $0 per month the rest of 2024. In 2025 the $2,000 maximum out of pocket provision comes into play. So, if I'm still on Xtandi at that point I'd pay $2,000 in January 2025, then $0/month the rest of the year...and the same pattern follows for each subsequent year.
Anecdotally speaking from personal experience and observation on the group, Xtandi is quite variable in its SEs. It goes from mild to extreme ( me ) and mostly mild to moderate in most guys.
I started Xtandi at a time I was being encouraged to enter hospice by my medical team. I’m 52 months out from that time and going strong. I just got my latest PSA results back and I’m still >0.1 . In my case Xtandi has been very effective and life extending.
Seems we are similar, though I am younger, had fewer mets, and no other health issue. Bottom line is it works. Not sure what would have happened if I did not have the resources to go private. Even with the insurance, it is still not so easy.
it’s awkward when you have to think of it from the perspective of needing $12,000 a month to stay alive, isn’t it. !!! There are probably a lot of guys in 3rd world circumstances , and others , that don’t have the resources . That’s cringeworthy. Thank goodness for insurance.
❤️❤️❤️
I hear that !! Thanks brother . ❤️❤️❤️
yea Xtandi can have some intense SEs for some guys. It’s put me in a wheelchair and a chit load of other stuff .I don’t experience depression after 32 years of Zen priest training, but grueling is grueling yayahahahaya.
There’s anecdotal thought that says guys with the most intense SEs ( like me ) have them because they are most sensitive to it. Being so sensitive to it , it’s most effective in guys like me , suppressing my cancer longer. I hope that’s true.
Take a break seems to work here too.
Hi - anony2020and ALL ! - what was your PSA prior to treatment and when were you diagnosed - I am on Xtandi and Gosalin - abdomen injections and PSA dropped from 50 s to .03 - A question for all on xtandi please - whats the longest anybody has gone on xtandi before a significant increase in PSA >2 I have been told it works for about 3 years max ? thank you kindest Raoul and hello - anony2020
youtube.com/watch?v=pC7SKfr...
May be this will help answer your questions. It is possible your doctor is referring to the population where the PSA does not decline to below 0.1 or even 0.2? May be you can also request a second opinion? Depends on where your NHS is located. It seems some hospitals in London offer better or even world class service. However, I do not have any personal experience or seen any professional valuation or study.
Worked for my husband my 15 months only. He just finished 10 sessions of Chemo
oct. 2017 and still using. over 5 years. psa 0.2 extensive and innumerable bone mets
I had a similar "credit" card with Xgeva. Only downside was doctor office stff either unfamiliar with the process, or too lazy to learn it
been on Xtandi now for almost 6 1/2 years. Doing a good job for me
Lupron was ineffective for me as I had Mets in two consecutive years with it. Since also put on XTandi, PSA dropped to less than 0.1 for last sixteen months. SE’s have thankfully moderated in recent months such as extreme fatigue, headaches and brain fog.
My MO says its typical effectiveness is from one to four years, with two being avg. Only a very small number of his patients have found it effective for six years. Cost is marked at $12K/month but I am fortunate that other grants have been available. They keep running out but the pharmacists seek alternative resources musical chair style so it’s a scramble every several months. At present, the latest grant expires in June…
My case for relay runner style grant continuance may be helped when the pharmacy rings each month to verify how regular I am with it and the status of my SE’s, I thank them for granting me another month of life and keeping me a vertical man. At first they seemed taken aback by that gracious appreciation and didn’t know how to respond, as if it’s not the typical patient response. In reality, I am profusely thankful and with each succeeding monthly conversation they now appear to look forward to expressions of gratitude as if it bouys their spirits amongst all the monthly calls they have to make to patients.
As for lifestyle changes, I have learned to curtail alcohol to a bare minimum (no full shots of anything and confine consumption to low ABV levels) on an occasional or weekly basis, eat salads daily and take longer walks, weather permitting. Our financial advisor had twenty-three of his clients expire last year—at least a third of them from CV. He says to spend our meager savings and take those special dream trips as “nothing is guaranteed.” I wake up each morning and turn to my wife, announcing, “I get to spend another day with you.”
Wishing everyone as much quality of life as can be had for the balance of years available. Be intentional and gracious to a fault.
Thank you so very much Newnorm your answer is so to the point - Xtandi - 1 to 4 years occasionally 6 ( is that in combination with LHRH ( Gosalin) I am on this as a DUO combination ? - and thank you all that responded too ! - my oncologist said last visit, a week ago 21 March 2023 that " they are currently developing 3rd gen Hormonal treatments & medications that can be added to Xtandi to hopefully stop the resistance being developed and these should be available in the next few years everywhere - also currently in the UK - finally NICE ( our medical authority ) have given the green light to Lutetium on the NHS ( Our health service ! ) Is it me or is cancer becoming more prevelant in OUR generation ? - Hope everyone is doing as well as can be expected - kindest Raoul
youtube.com/watch?v=pC7SKfr...
So that is one doctor's opinion, which seem somewhat different from your surgeon's. However, you seem to be on the right track, if Dr. Scholz is right. Especially as you did not have surgery or radiation?
Everybody is different. You'll find plenty of people here who don't think Xtandi does anything.
Anyone use it as a mono therapy? Close friend has done so successfully with no Lupron.
Been on Xtandi for 180 days, some times full strength most times not. I can feel my posture curving over to a primate slouch. Back and chest hurt like a vise is squeezing them. Gets better when I lay dow. But the Qol sucks, Down to 1/4 dose today, see Dr on Tues for a game plan change, going a different med route (alternatives) are available.
ADT. Lupron 90 day and Xtandi 160mg.
Xtandi is very messy drug, side-effects wise. Especially common severe fatigue. It appears half-dose enzalutamide is as effective as the full dose in this real-world analysis, posted some months back by pjoshea13.
Read about that and somewhere else. Which begs the question. For those whose PSA is already <0.1 do they have to continue with the full dose?
Do you find that constant ups and downs are depressing?
Astrazeneca most likely dislikes doctors cutting the dose in half. But most have success with 80mg.
I stopped taking Xtandi two years ago because of the warning about long Q-T on EKG. My PSA has remained at <.1 with Lupron alone. Makes me wonder about Xtandi.
Don't use it until you really have to. I agree with you.
There seems to be two schools in treatment approach.
How long did you use Xtandi?
I used Xtandi with Lupron for three or four months, while my PSA dropped from 36 to <0.1. After stopping Xtandi, I have used Lupron quarterly and my PSA has been <0.1 for two years.
it totally wiped me out so dizzy I couldn’t stand
For those who have unbearable SEs with X-Tandi, why not switch to Zytiga? I got 4 1/2 years of low PSAs from Lupron and Zytiga and my SEs didn't much push beyond what I had before I added Zytiga.
For some. It failed in my husband's case...everyone is different.
Where are you getting BAT treatment? My MO won't do it.
Agreed. I am also on Xtandi and its SE was intolerable at first. Life went back to normal after I and my oncologist decided to reduce it to half dosage - 2 pills a day - and my PSA remains at 0.006. If you find the SE too much, by all means talk to your oncologist about taking it down to 3 or even 2 pills a day. Xtandi costs around the equivalent of US$3200 a month, but with only half dosage, it is reduced by half. And I’m on a program that guarantees free supply after you buy and take it for 14 months, counting full dosage of course.
where are you and how to contact your mo? I would love to try BAT.
How to contact her and her location, please.
Going on two years with a Xtandi and monthly Lupron treatment. PSA undetectable the whole time. Fatigue is very rough for me. I tried light exercise but then I was wasted for the rest of the day. I don’t think people around me realize how tough the meds are. I look fine. But no muscles and strength is 65% or so. I have good days then am trashed for at least two. I’ve fallen a couple times when I was home by myself, which bothered me.
But: I still ride my motorcycle, ride my mower, play with grandkids… I’m retired and now can’t do much traveling or any hiking. Just how it is. I planned a different retirement but this is the one I have.
Fight like hell then smile,
MC
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