Moving on to Xtandi: I saw my Onc... - Advanced Prostate...

Advanced Prostate Cancer

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Moving on to Xtandi

Nicnatno profile image
62 Replies

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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Kaliber profile image
Kaliber

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.

Hope this helps brother. 😀😀✌️✌️

Nicnatno profile image
Nicnatno in reply to Kaliber

Thank you Kaliber. I'm also on lupron from the get go

2dee profile image
2dee in reply to Kaliber

Wow, that is music to my ears and just maybe a little hope for a little more extended QOL.

I'm Lupron for about 2yrs, gaining about 1 point per week now, (9.2 last) and starting Xtandi very soon.

I've been really concerned the rapid change meaning time may be short.

Thanks

2Dee

Kaliber profile image
Kaliber in reply to 2dee

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 !!!

Just say’in ✌️✌️✌️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

"Even my oncologist thinks I’m a freak"....

I rest my case.........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/24/2020 9:52 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

We all gotta be something ... It’s good to find your place in life .. yayahahahaya

😂😂😂

j-o-h-n profile image
j-o-h-n in reply to Kaliber

You're freaking A right........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 3:24 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

Rotflol😱😱😱

ctarleton profile image
ctarleton

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

Nicnatno profile image
Nicnatno in reply to ctarleton

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.

Nick

2dee profile image
2dee in reply to ctarleton

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.

Nicnatno profile image
Nicnatno in reply to

Thanks Gregg. I will pray for your well being.

Nick

Tall_Allen profile image
Tall_Allen

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.

Nicnatno profile image
Nicnatno in reply to Tall_Allen

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.

Nick

Tall_Allen profile image
Tall_Allen in reply to Nicnatno

As part of the clinical trial? You're aware of the risk of combining them?

Nicanor profile image
Nicanor in reply to Tall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply to Nicanor

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.

urotoday.com/conference-hig...

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."

thelancet.com/journals/lano...

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.

urotoday.com/conference-hig...

Do Zytiga and Xtandi behave differently when combined with Xofigo? Maybe, maybe not. But there is a real risk there that you should be aware of.

The combination of Provenge and Xofigo appears to be beneficial and safe based on a small Phase 2 trial:

ascopubs.org/doi/abs/10.120...

Magnus1964 profile image
Magnus1964

Everyone responds differently to Xtandi. I was on it for 3 1/2 years. Have you been tested for BRAC mutations?

Nicnatno profile image
Nicnatno

Not yet Magnus. My Onc is very confident about xtandi.

monte1111 profile image
monte1111

Extensive bone mets. Mets stable. 0.1 psa. Xtandi for 32 months, after 8 cycles chemo. Lupron 3 years 1 month. Hope it works well for you.

Nicnatno profile image
Nicnatno

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.

Advocatedaughter profile image
Advocatedaughter

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.

Nicnatno profile image
Nicnatno

Your Dad exemplifies the word "warrior"

Wflaggs profile image
Wflaggs

Been on Xtandi for over 6 years now and PSA still non-detectable. Side effects are some fatigue and occasional memory fog. Drug has been great for me.

Nicnatno profile image
Nicnatno in reply to Wflaggs

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.

Nick

Shooter1 profile image
Shooter1 in reply to Nicnatno

I'm at 2 1/2 years on Xtandi and last PSA was lowest in 5 years.

Nicnatno profile image
Nicnatno in reply to Shooter1

awesome Shooter

pilot52 profile image
pilot52

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)

Nicnatno profile image
Nicnatno

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.

Cmdrdata profile image
Cmdrdata

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.

Nicnatno profile image
Nicnatno in reply to Cmdrdata

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.

Nick

mcom profile image
mcom

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!

Cactus-Jack profile image
Cactus-Jack

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.

Good Luck in Your Journey

Nicnatno profile image
Nicnatno in reply to Cactus-Jack

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.

Nick

j-o-h-n profile image
j-o-h-n

Okay, l'll bite, who are the owls? And next time stand up for your photo....

Good Luck,Good Health and Good Humor.

j-o-h-n Friday 04/24/2020 9:58 PM DST

Nicnatno profile image
Nicnatno in reply to j-o-h-n

Hello John, the Owls is the mascot of my alma mater Temple Univ here in Philly. Keep up the humor. Salamat po

Nick

j-o-h-n profile image
j-o-h-n in reply to Nicnatno

Walang anuman.... Just call me Mr. Badooie.....and I'm not Pinoy

Good Luck,Good Health and Good Humor.

j-o-h-n Friday 04/24/2020 11:48 PM DST

Nicnatno profile image
Nicnatno in reply to j-o-h-n

Ha!!!! You must be married to one. I've cut down on the pork adobo and lumpia but not my pancit. Keep those humor coming John. We need them.

Nick

j-o-h-n profile image
j-o-h-n in reply to Nicnatno

Nick, O O

What do you call a married female who controls all the money in a marriage? You guessed it, A PINAY...

Make sure you never cut down on Pinoy oxygen, it's called "bigas/kanin".....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 3:33 PM DST

Nicanor profile image
Nicanor in reply to j-o-h-n

So true. I am LMAO 😂😂😂

Nicnatno profile image
Nicnatno in reply to j-o-h-n

Nothing can be further from the truth

monte1111 profile image
monte1111 in reply to j-o-h-n

I'm trying to tagalong. Is Badooie short for Bad dookie?

j-o-h-n profile image
j-o-h-n in reply to monte1111

You can Tag along... Badooie = a Hick......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 3:36 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

I do know what Biggus Dickus means.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Now you're speaking Greek....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 4:43 PM DST

j-o-h-n profile image
j-o-h-n in reply to monte1111

Sorry just looked it up, it's Latin not Greek.....

means:

Sextus' Huge Catus

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 5:05 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

bing.com/videos/search?view...

Nicanor profile image
Nicanor in reply to monte1111

Wow. Too funny Monte

j-o-h-n profile image
j-o-h-n in reply to monte1111

Your relatives "Monty1111" Python..... and their cast of thousands..... Thanks...

Did you notice the Emperor "Playless Penis IV".... in that scene?....She's the one with the helmet and wearing a spear............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 6:57 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

So sad. I can no longer do the full Monte. Now it is the half Mon ......

j-o-h-n profile image
j-o-h-n in reply to monte1111

or the quarter Mo....and eventually No Mo

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 9:03 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

“ fowl owl on the prowl “ ...... by the “ Little Willies “

If you pass his tree ,flee ...

If you catch his eye, fly .....

You dig ? 🦉

monte1111 profile image
monte1111 in reply to Kaliber

What a great name for a rock group. Wait a minute ... we don't have any rocks.

Kaliber profile image
Kaliber in reply to monte1111

No “ willies “ either ...

That “ still “ has to be one of the weirdest rock songs of all time.

j-o-h-n profile image
j-o-h-n in reply to Kaliber

Yep...

And if it screeches boo

Stick a feather up its wazoo...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 4:53 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

Maybe you never lived on the farm when you were pubescent ... ( edited for prime time family viewing Yayahahahaya)

Not say’in anything special ... just say’in Wink wink - nudge nudge .... yayahahahaya yayahahahaya.

j-o-h-n profile image
j-o-h-n in reply to Kaliber

But I was a shepherd in my teens.... Learned about taking care of the "flock"....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 5:09 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

My first reaction was “ ewwwwwwwwwww” , but then again I saw the cute wool on that young ewe down the road in that field ... so “ ewwwwwwe” then.

🐑

j-o-h-n profile image
j-o-h-n in reply to Kaliber

was she the one wearing the dark lipstick?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 5:18 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Jimminy Crickets. I'm not going anywhere near ewe.

j-o-h-n profile image
j-o-h-n in reply to monte1111

I would never pull the wool over your eyes.......or over your knees...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/25/2020 5:29 PM DST

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