I saw my Onc earlier and said my latest CAT and Bone scans were stable but my PSA has tripled since January, 2.7 to 6.5 now. He suggested xtandi in lieu of zytiga because you would need to take a steroid with it. He also highly suggested Xofigo. I'm not experiencing any bone pain but due to the rising PSA, I will pursue it. I finished my 3 infusions of Provenge 3 months ago. Others here believe that having Provenge and xofigo is beneficial. After 37 months of post chemo, the time has come for secondary ADT treatment. Can anyone tell me how long Xtandi last until it fails? Wishing everyone good health. I get treated at MD Anderson in NJ.
Nick
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Nicnatno
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Lupron Xtandi has worked very well for me. I’ve been using it for 19 months with undetectable psa. Original psa was 1400.
That’s the up side.
On the down side , for some people, Xtandi can have some strong side effects. It varies person to person. Xytiga has fewer side effects for most people, but has the steroid issue .. no steroids with Xtandi but probably stronger side effects.
There is no definitive length of time Xtandi remains effective .. a few months for some, many years for others. Xtandi with Lupron quite literally saved my life.
You can never know how much time is left .. with this disease no one hardly does . I was being strongly encouraged to enter hospice 19 months ago and Lupron Xtandi Zometa rescued me for now. Even my oncologist thinks I’m a freak yayahahahaya.
Adt does hammer me to the point that many of my adt side effects mimic end phase symptoms ... like that irregular heaving breathing etc. ....sometimes.
My psa is undetectable and I plan on hanging around for quite a while .... after 19 months of Lupron Xtandi Zometa, my liver, bp, bg and cardiac rhythm have become Unstable due to the adt drugs ...
but if one of those gets me, my wife will be able to says” he outlived his cancer “ yayahahahaya. Yayahahahaya.
The point being don’t listen to the naysayers and get in there and live what remains of your life fully. Willpower, alone, counts for a whopping lot !!!
As a statistic of one, I started as Very metastatic with a PSA of 5,006 around 6 years 4 months ago. Basic ADT took my PSA down to 1.0, but it started back up after a couple of years. While my PSA was going up again to an eventual secondary high around 95.0, I did Provenge, and right afterwards started Xtandi. The added Xtandi took the PSA back down to 1.2. It remained below 5.0 until just a few months ago. Current PSA is around 9.0. I've gotten around 3 1/2 years out of Xtandi, and will keep riding that horse a while longer. For me, Xtandi was much like a continuation of the Lupron, but with some more general fatigue, etc. I've been grateful for as good a quality of life as I've continued to have, all things considered.
The thing concerning me the most right now is a recurrent Stage IIIC rare spindle cell type melanoma inside my neck. I had an operation for that earlier this year, and another biopsy-confirmed recurrence since then. I am currently on Dose #2 of the every-three-weeks immunotherapy drug Keytruda, which blocks the PD-1 pathway and will hopefully "release the hounds" of my body's own killer T-cells to recognize and attack the "foreign" melanoma cancer cells. I feel lucky to have felt no significant side effects so far. Future imaging and bone scans will help me and my doctors decide on "what's next" for both my advanced cancers and mixed treatments.
There's a good chance you will get a significant response with added Xtandi, too. You will know pretty soon after your first few months on it. Hoping for the Best!!
We all take these things just one day, week, month, year at a time...
Charles, my Onc explained that xtandi shouldn't add more side effects than the ADT meaning the ADT is the main culprit of the major s/e. Wishing you well.
Charles. I sure miss our live monthly advanced group sessions. Please know we think about you often and hope for the best. You are indeed our beacon.
2Dee
Dennis
It's a positive for you that it took 3 years for you to become castrate resistant. That's usually a good sign that secondary ADT drugs like Xtandi will work well and hopefully for a long time. Wishing the best for you.
The prednisone dose given with Zytiga is only a replacement dose to replace what the Zytiga takes away. It should have no relevance to the pandemic.
After chemo, progression-free survival lasted a median of 8 months with Xtandi.
I'm not sure insurance will approve Xofigo if the record submitted says that you are completely asymptomatic. But if you can report any bone pain, they will probably approve it.
TA, when the RO interviewed me last Dec I told him I wasn't experiencing any symptoms. This time, my Onc said to tell the RO that I'm experiencing pain so my insurance will cover it. I'm going to do the xofigo along with xtandi.
TA, I believe you are referencing Xofigo with Zytiga. I did not see any risks with Xofigo and Xtandi. In fact, there are many positive studies between Xofigo in conjunction with Xtandi.
The only Phase 3 trial I know of is the ongoing EORTC-1333-GUCG/PEACE III trial, which hasn't ended. The protocol was changed when the results of the disastrous Xofigo+Zytiga trial was ended early (see below). It now mandates use of a bone protective agent (Xgeva or Zometa). That has so far reduced (but not eliminated) the incidence of fractures in those treated by the combo, but only 20 patients have been followed for a year or more on that trial.
You should also be aware of the ERA 223 trial combining Zytiga and Xofigo, which was ended early. There is now a black-box warning about combining them. The trial comparing Xofigo+Zytiga to Zytiga alone was stopped early because "more fractures and deaths were noted in the radium-223 group than in the placebo group."
The problem may be partly resolved by using a bone strengthening agent. When they looked at the subgroup who had taken bone strengthening agents, 15% of those taking Xofigo+Zytiga vs 7% of those taking Zytiga-only experienced a fracture. So even though Zometa or Xgeva reduced the fracture rates by about half in both arms, the fracture rate was still twice as high among those taking the combination.
Excellent response Monte. My Onc who specializes in PCa said the average time of xtandi was 1 year to 18 months although he currently has some that far exceeded that.
My 87 year old Dad has been on Xtandi for 11 months. He takes only One horse pill nightly, His Onc wanted to begin him on 3 am and 3 pm. I said no! I am his advocate, and live with him now. I studied all the challenges with this RX and Not many studies done on gents over 85 because they usually do not live this long. Dad's ONC has 6 gents over 85 in treatment therapies. This is at Sutter Roseville California. His PSA remains at 0.05. He receives Lupron injection every three months. He is more tired, cognitive decline, but happy. Not driving anymore. Walking in the house is the most exercise. Before this self isolation, he was riding the recumbant bike at our community gym. His journey began 25 years back, prostate removal. Radiation. He continued to work into his 70's. His PSA level began to rise when he was 75. He has had hormone therapies, beat bone CA in 2013 and had heart attack with one successful stent placed 8 months back. New anti clot drug Brillinta almost killed him, now on Plavix. His CA was caused from Agent Orange, receives full disability from VA. After 3 tours in Nam, flying A4s, he went on to retire as a 4Star Admiral. I share this because you need to know to be brave, courageous and faithful. Keep the faith and never give up. Love and a positive attitude create good vibrations in your healing body. Good Luck.
I would love to mirror your success of 6 years on it. My Onc who specializes in PCa told me that the average time on xtandi was 1yr to 18months. But, he has several patients that far exceeded it. Thank you for sharing your success.
I am on Lupron - Xtandi with no more than mild side effects ,,,I really cannot tell a difference than being on Lupron alone....No fatigue , and as time wore on very little on the hot flash side either.....I do exercise pretty intently.....Primarily on a Peloton.....but stay real active....Physically I feel 40.....Still maintain a Commercial Pilots License. Get up at 6 and go to 10 PM.....67 years old....12 cores Gleason 9...2015.....do not fear what is the unknown just prepare the best you can and enjoy the flight...Blue Skies ....Sky King and Penny (woof)
I asked my Onc about s/e and he said it will not be more of an additional s/e than my current ADT. The main culprit of the major s/e is lupron which is administered every 12 weeks.
Ive been on 1000mg Zytiga and one 5mg prednisone daily for 25 months and still doing fine. Same SEs as Gen1 ADTs. Z also suppressed my T so it has been at castrate level since I started this drug.
Thats good response for 25 months. I'm sure Zytiga will be my next ADT treatment after Xtandi fails. I begin taking xtandi tomorrow and hope to get 3 years of it or more.
My dad has been on Xtandi with a Lupron injection every 3 months for about 2 years and his psa is undetectable. He has a hot flash every now and then but that’s it!
Went castrate resistant and metastatic in 2018 after 5 years of Firmagon/Lupron.
Did Provenge followed by Xtandi since Nov 2018. Side effects a little worse than the Lupron (3 month shots) Fatigue and fog the worst. Physical therapy helped with the fatigue and the foggy days are tolerable.
PSA has been undetectable since Jan. 2019. Still on Lupron as well.
5 years on ADT alone and finally castrate resistant is excellent Jack. I made it to 3. Thank you for sharing. I'll start xtandi once they come in the mail.
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