Hi all,
I'm just starting Xtandi and I was wondering for those of you who have been on it.
How long were you on it before it started to fail?
My Oncologist says the average is 8-10 months.
Xtandi - average time: Hi all, I'm just... - Advanced Prostate...
Xtandi - average time
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alephnull
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Hey, as the TV ad says "Individual results may vary"In my case after 9 months of Abiraterone failed, the Xtandi only lasted two months🤔
So, MO approved a Taxotere rechallenge of six sessions last year, but that didn't do it.
Now on Cabazitazel #5 and PSA was at 3.1 after #4 - not much of a response.
MO may add Carboplatin
Fight On Brother
Randy
I’m on Xtandi Lupron Zometa …. For this my 40th month now and no sign of anything but going strong. Xtandi took me from the jaws of immediate inpatient hospice and gave me all this extra time. Your oncologist seems like he’s reading old info from a few years ago. From what I’ve seen on the group, my survival time isn’t unusual at all and many here have maybe 6-7 years or more. It varies with the person and their starting condition , seemingly the guys DXed with the worse initial cases having the best outcomes. My original psa was 1400-1600. In addition to my anecdotal experience, Im sure many others here will have plenty to say about this too. The experiences here cover a broad range of outcomes.
In your case , you’ve already had many years with other treatments , so that will probably figure in the mix . My case is a pure initial use of Xtandi first. It’s going to be more complicated with more variables for you. Still if you have a good initial response to Xtandi , IMHO ….. you’d have plenty of room to be optimistic.
❤️❤️❤️
Hi Kaliber. Did you have zometa because of bone pain?
No, just the opposite. ADT , …. lack of T in men causes bones to thin out and become brittle and break. Zometa is given along with the adt treatment to try to compensate and strengthen thinning brittle bones. Additionally I have Mets on literally every single bone joint in my body. … rib cage, skull, back, hands , feet etc. . Zometa reinforces those damaged bones as well. An infusion of Zometa can cause intense bone pain , in me, for up to 8 days after the infusion. I call it the Zometa pain train. In some people …me … the Zometa pain can be intense and overwhelming. We have covered the pain caused by an infusion of Zometa …here on the group ….many times. You can use the search tool to pull up the numerous discussions about it if you want to know more. A treatment of Zometa can cause a wide range of many discomforts and surprising pain in many patients ( but not all ).
You began with Xtandi? No Lupron? Never mind, I see now.
Yes …. Lupron plus Xtandi , concurrently, are a current adt SOC …. The Zometa is an additive drug to help counteract some of the bone issue side effects caused by Lupron Xtandi.
Thanks yes I missed a thing or two when I first zipped through your earlier answer.
Never zip thru Kalibers posts. You might miss something
Now you tell me!
Everyman presents differently and responds differently. There are Men on this site still on ADT after 10 years. There appears to be some momentum that changing up before failure May keep the PCa confused at figuring a way around things. I started on Firmagon then Xtandi but (T)Testosterone went from 0 to 12 then 22, 2nd month. PSA started rising about 2 weeks behind T, so I asked to switch to Zytiga. Boom T back to 0. PSA began descending. I have been slow to get below 1.0. Finally .26 at 14th month. Like I said everyone different. Some say slow to nadir live longer. My opinion….we are just one giant human experiment edging toward CURE. Next Year? 25years? It is coming you know for a fact. Then I switched from monthly Firmagon inject to stomach to 3 month inject to butt w Lupron (much easier) but then MO only wants to do 3 mo PSA Blood panels. You hv to learn to speak up.
Finally, after 7 surgeons said No, and 2 Radiologists said No, the ADT barrage shrunk enough PCa tissue that Sloan Kett in NYC said let’s zap the Prostate gland w 5 days of SBRT/SABR. Not curative but Stampede Trial proved extension of life.
Best to you and yours,
Mike
Ps: you can tap on anyones photo/icon and it will take u to their Bio. You should give a quick Bio history of your journey so others of us will know where you are in this journey. One thing for certain, it evolves for everyone. Mike
Xtandi, 3 1/2 years to first BCR in bones--zapped--new BCR 7 mo. later. Still on xtandi to keep first cancer in check, just doesn't nail new mutations-mets.
Hello, As stated by others, everyone responds differently. In my case, I have been on Xtandi (enzalutamide) for four years and seven months. I began this drug in September, 2017. Only recently has my PSA started to slowly rise. I was diagnosed on May 30th, 2013 with an initial PSA over 1700 and widespread bone metastases. The urologist I saw back then told me to put my affairs in order. It has been nearly nine years. Keep the faith!
Have you experienced pain when first starting to take xtandi. I’m 6 weeks In and have bone pain from 2 lesions in the seat bone that have woken up 😡
Sorry, Fatigue - yes. Loss of body hair-yes. loss of libido-yes. Some neuropathy-yes. No real pain.
Hello Dermotpat,What are the symptoms you are experiencing from the lesions in the seat bone?
Specific pain from the lesions and aground the pelvic bone. Been like this for a few weeks although with a bit of rest the past 2 days it appears things have settled down somewhat.
That’s wonderful news! My husband is hopefully starting Xtandi soon ( once approved for their financial assistance) and I will use your story for inspiration. Best to you for continued health 🙏❤️
Hello, I am so fortunate to have a supportive wife, a supportive family and friends and an excellent oncologist. A positive outlook and a sense of humour help as well.
And don't forget having a "band of brothers".......helps...
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/03/2022 6:26 PM EST
A chance here to give you a quick thank you for taking part in the forum.
You are one of the guys here who gave me hope that maybe I can get some more time on earth as I had a 1621 psa, mets from skull to shins at dx. Your RyderLake2 still catches my attention.
Many more years to you and all of us!
Response to treatment is really all I ask for and so far so good.
At any juncture (Lupron,chemo, Zytiga) I could have not had a response so again just that alone is a celebration of sorts.
A short 2 years and 4 months on this journey for me.
That'll cost you a nickel a can.........
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/03/2022 6:29 PM EST
Have can will kick. Best can kicking foot in these here woods.
Empty is a breeze...... (btw does it make a sound in the woods?)
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/03/2022 6:45 PM EST
There's a bear line in there but you're dealing with a numbskull here and I can't seem to get one out. Although pun intended ha.
Hello, Thank you so much. I am the poster boy for survival with aggressive metastatic PCa that has spread extensively to my bones. Before I became aware of it, the cancer had metastasized from my neck to my knees. Why I am still here no-one seems to know. To quote Churchill, I suppose I am not ready to meet my Maker and it certainly doesn't look like he is ready to meet me! I belong to a local Prostate Support Group and have been called upon many times to counsel men with this damn disease. All I can offer is get an oncologist who you trust, become knowledgeable about the disease so you know what options are available to you and rely on a supportive wife, family, and friends. Good Luck!
Thanks. Good to hear from you personally.
I'm lucky to have all the above. My wife and a son who is a miracle in terms of helping his old pa out in navigating insurance and all the stuff we deal with. I've never forgotten his kind words "dad I'll take care of figuring out your finances etc. you take care of your cancer".
Only shaky part is the MO I've had since we moved to a new location a year ago. Just seems kind of blasé. Although nice Dr. and I can talk to him freely. I'm working on options in that area.
Anyway thanks again. Yep mine was skull to shins bone mets and lymph nodes pelvic to collarbone. Collarbone lymph nodes are common in lung cancer so first physician before my blood tests were in thought I might have lung cancer. I had lost my appetite and thought I had stomach cancer. Ha.
My first MO was a god send. Lifted my spirits and got me on chemo.
I needed her as looking at the internet after dx for treatment for psa of 1621 was gloomy to say the least. I was beside myself in anxiety, regret, fear. So concerned for my wife and family. The weight of the world is a understatement.
Brief list of the 5 or 6 months before dx.
Thought that old age was exponential as to the pains and struggle to get in and out of the car.
Thought I had some type of gerd that wasn't identified on the internet or stomach ulcer or stomach cancer.
Thought I pulled a ligament in my right shoulder.
Swelling of left leg I didnt have an answer for.
Finally couldn't eat at all and realized I also had depression and other mental issues. I was actually actively dying.
I look back on those 6 months and if I had been a wise old Native American Indian Chief I would have known and had the wisdom to go to the mountain and die.
I still kind of sort of work and still kind of sort of enjoy it.lol.
9 years, awesome. Praying for your continued success❤️🙏
Started Xtandi (Enzalutamide) in July 2020. My initial PSA was 1,311. 19 months later it is 0.05. We just do not know how long it will last, only God does. I do get why you asked and I hope my friend you (and I) plus all the others on this site are one of the 10 year responders. Good luck on your journey.
I was on xtandi for 4 years before it started to fail.
I got 15mos before failure. It really dropped MY PSA from 9.5 to a nadir of .01.Major side effects were fatigue, brain fog, balance.
All in all happy with the limited success to extend MY time.
2Dee
Hi My husband started Xtandi and 5 1/2 months later, his PSA is rising again. Xtandi cleared some bone mets completely from the bone scan on one side, but there are some resistant cells in the other hip hemisphere still which we assume are producing the PSA.
Al. I’ve been on Xtandi now for 62 months. My doctor is amazed but happy. They say that I’m the patient that has been on it the longest of all 🤪🤪🤪
DH was on Xtandi for a year-PSA decreased at first, then started rising after 6 months. The fatigue was overwhelming and drastically affected his quality of life.
Been on Xtandi and monthly Lupron injections a year now; PSA undetectable.
I was diagnosed with stage 4 PC. Started treatment with Zoladex injections which stopped working after 3 1/2 years. Added Xtandi which i am still using for my 4th year.as mentioned by others it works very well for some and not so for others. Hopefully you are in the former group. Good luck.
2 months, round 1, a year plus later 2 months again.
2 short months for Xtandi.
20 months Xtandi. numbers and scans perfect!
4 years, 2 months and counting. Psa 1.4 and pretty steady.Just lowered the dose from 120 to 80 mgrs to see if it will have a positive effect on the fatigue and brainfog. In 6 weeks bloodtests again to see what effect the lowering has on the psa.
Started Xtandi August of 2016 with PSA of 9.4. PSA stayed under 1.0 until about August 2020. PSA slowly rising and took a break for Provenge after it reached 2.0. Started again last August with PSA of 8.0 and it dropped to 5.64 and is slowly rising again. Now at 7.45. No bone pain, much to my doctors' confusion -- I have mets all over my spine, chest and pelvis.
On Xgeva every 3 months for bones (since 2016 -- started monthly, was on Prolia before that) and had them castrate me last year to do away with Lupron (started in 2014) -- I am much more emotionally stable now.
For some it should be renamed EXT-and-me...
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/03/2022 6:34 PM EST
3 1/2 yrs for me along with Lupron.
Every case is different so who knowsBut xtandi worked for 12 months for me. Then started to fail. Still taking it as it still helps for at least some of the cells according my MO
Good luck with it.
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