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ZYTIGA: Our Collective Experiences

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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 984
Posted 9/18/2018 3:40 PM (GMT -7)
MY MOOD IS JUST FINE! I DON'T NEED ANGER MANAGEMENT-I NEED PEOPLE TO STOP BEING STUPID AND ANNOYING ME!! Lol that's all a joke. My wife has noticed me being a jerk (but how could she tell the difference from before?) But I am consciously trying to be grateful to be alive and enjoying the day.
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ANB
Regular Member
Joined : Jul 2017
Posts : 80
Posted 9/18/2018 5:08 PM (GMT -7)
Same. I don't think my changes have been dramatic, though they are there and it's really bothering my wife. She was saying I should consider changing to enzalutamide. Spoke to one ONC today and will speak to one Thursday. Switching is not happening.

My wife seems a bit more accepting when I started research and it sounds like Enzalutamide is worse with mood changes. In additional to anecdoatal evidence, see this:

http://www.urologytimes.com/modern-medicine-feature-articles/cognitive-mood-effects-characterized-pca-therapies
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mr bill
Veteran Member
Joined : Sep 2010
Posts : 833
Posted 9/19/2018 6:27 AM (GMT -7)
Gobucks,

You nailed it!

Mr. Bill
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Everton
Regular Member
Joined : Jun 2017
Posts : 199
Posted 9/20/2018 3:43 PM (GMT -7)
Starting Zytiga tomorrow. Been told to monitor my blood pressure and will need to get lab work done every two weeks for first 90 days. Here is looking at lowering my PSA and keeping it there!
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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 984
Posted 9/20/2018 7:15 PM (GMT -7)
Good luck Everton. Hope you get the zero results with Zytiga and long lasting bottle collection. Your labs will mainly look for liver function numbers. Zytiga causes liver issue in about 15% of users.
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 9/21/2018 5:54 AM (GMT -7)
Prednisone..Lets talk about Prednisone for a minute..Once you have been taking this drug for a while, you can't just stop taking it cold turkey...You must taper off it slowly. Pred shuts down your adrenal gland and it takes a while to get it up and running again. If you stop taking prednisone suddenly, you can get into all sorts of trouble..
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Everton
Regular Member
Joined : Jun 2017
Posts : 199
Posted 9/21/2018 6:29 AM (GMT -7)

Fairwind said...
Prednisone..Lets talk about Prednisone for a minute..Once you have been taking this drug for a while, you can't just stop taking it cold turkey...You must taper off it slowly. Pred shuts down your adrenal gland and it takes a while to get it up and running again. If you stop taking prednisone suddenly, you can get into all sorts of trouble..

When i did chemo i took prednisone for about 2 months after it, slowly decreasing over that time period.
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steve55777
Regular Member
Joined : Jan 2018
Posts : 121
Posted 9/26/2018 12:13 PM (GMT -7)
Go Bucks: I've been on Zytiga for a month now and I haven't noticed any mood changes. Wife hasn't either (unless she's making me feel better by denying). I'm still on monthly Lupron and quarterly xGeva for bone mets, dropped Casodex last month for Zytiga, and take 5 mg prednisone.

Take prednisone in the AM, Zytiga before bed (after 2 hours of eating). So far, so good. My PSA has been eerily stuck on 0.60 the past three tests over 2 1/2 months.

Fairwind: Have you started Docetaxel? If so, how's it going? My six treatments ended in late May. Feeling MUCH better now.
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Everton
Regular Member
Joined : Jun 2017
Posts : 199
Posted 10/8/2018 1:56 PM (GMT -7)
Two full weeks on Zytiga now. My lab work looks good blood pressure staying down, but the constipation is a problem. Drinking water and adding some fibre pills trying to find a happy medium without going from one extreme to another.

Almost a month in my PSA continues to rise, will try another month on it as per M.O. and see if it starts to fall by then. Disappointed, by still optimistic!
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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 984
Posted 10/8/2018 7:31 PM (GMT -7)
Everton, I like Miralax or at Costco Laxaclear.
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Chask
Veteran Member
Joined : Jun 2014
Posts : 545
Posted 10/11/2018 2:50 PM (GMT -7)
Latest PSA after 3 months on Zytiga showing very small improvement.

Down to .76 from .81 6 weeks ago. Not sure if this very small decline indicates a likely failure of Zytiga in the short term. Onco won’t commit either way, understandable, but for the first time mentioned that next treatment would likely be Chemo.

In the meantime we carry on and keep hoping for improvements no matter how small. On th plus side, virtually no side effects beyond what I was experiencing on Zoladex, and they were minimal.

Chas
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kmclark1
Regular Member
Joined : Mar 2014
Posts : 222
Posted 10/13/2018 8:05 AM (GMT -7)
Get another opinion. In a similar position and have been told there are several oral treatments available before chemo.

You PSA is still going down on Zytiga, that is good.
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Chask
Veteran Member
Joined : Jun 2014
Posts : 545
Posted 10/13/2018 2:59 PM (GMT -7)

kmclark1 said...
Get another opinion. In a similar position and have been told there are several oral treatments available before chemo.

You PSA is still going down on Zytiga, that is good.

Thanks, and yes I am satisfied that my PSA is going down, just wish it was by a bigger amount. The problem with other treatments is that I am based in Australia and the most likely options - Xtandi, Apalutamide and Provenge - are not approved for use after Zytiga. Could go privately, but costs are prohibitive and probably would only have a small effect.

If you are aware of any other options, I would be very keen to hear of them.

Chas
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kmclark1
Regular Member
Joined : Mar 2014
Posts : 222
Posted 10/14/2018 7:43 AM (GMT -7)
Chase. I am in Boston. Going to have a detailed discussion first of January. Will let you know
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Break60
Veteran Member
Joined : Jun 2013
Posts : 1870
Posted 10/14/2018 10:05 PM (GMT 0)
I’ve read elsewhere that taking a lower dose of Zytiga with food is effective . Any comments?
Bob
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Chask
Veteran Member
Joined : Jun 2014
Posts : 545
Posted 10/14/2018 11:22 PM (GMT -7)

Break60 said...
I’ve read elsewhere that taking a lower dose of Zytiga with food is effective . Any comments?
Bob

Yes, there are several posts on HW making that observation. I believe it is important that the food be low fat.

You might well wonder why it is not prescribed that way, rather than to be taken on an empty stomach. I have heard a couple of theories. Firstly, I don’t think it can be guaranteed to be effective, so you might be risking an “underdose”. I have also heard it suggested that it could alter the side effects in an adverse way. And maybe more cynically it has been suggested that Jansen Biotech (the Pharma Co responsible for Zytiga) would drop revenue if everyone halved their dose, so they won’t propose that it be prescribed that way.

I have no idea of the veracity of any of these theories, but do plan to ask my Onco if he thinks my present dose of Zytiga might be more effective if I take it with a low fat meal.

Chas
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7430
Posted 10/20/2018 10:47 AM (GMT -7)
BUMP.
I want to keep this thread on the first page as I may be on Zytiga/Pred soon

Mel
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Everton
Regular Member
Joined : Jun 2017
Posts : 199
Posted 10/20/2018 4:24 PM (GMT -7)
@ Chask & Break 60 My Oncologist has said if we do not see a drop in the next month, he will have me try it a dinner time, so there must be something about having it with a meal. He has not indicated if I would be taking it to half the amount that I am taking now.
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7430
Posted 10/22/2018 10:20 AM (GMT -7)
I will be chatting with Dr. Lam tomorrow.
So far I have been on HT (Casodex and Lupron) on 3 occassions. Each time, it kicked my PSA to undetectable very quickly and I was able to take an HT vacation each time. This last one lasted about 18 months. So, for sure, with my now quickly rising PSA, I'll be back on HT. I hope -- given my history -- that it will be "just" the same stuff and nothing else. I'm not looking forward to doing the zytiga/pred. combo. I can't do Xtandi (I think) because I once had a seizure.

Mel
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Wings of Eagles
Veteran Member
Joined : May 2013
Posts : 1045
Posted 10/22/2018 10:57 AM (GMT -7)
Mel,
I really feel that you need not fear the Zytiga/prednisone combo. For me, there is very little side effects amd hopefully for you too. Also, I claim it will certainly kick the butt of that rising PSA..Undetectable..here you come! And claiming it ahead of time for you, Brother
Wings
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ANB
Regular Member
Joined : Jul 2017
Posts : 80
Posted 10/27/2018 10:25 PM (GMT -7)
This is a good thread we should keep alive.

Recently started Zytiga in September. That month PSA goes from my nadir or 0.7 to 0.2. Liver function high, so MO takes me off for a month. PSA now 0.1. I tell him I can't tolerate Prednisone. He says restart the Zytiga and halve the dose of the Pred to 2.5 mg. Just started that.

I do feel a bit fatigued. There are many possible causes so I can't definitely put it on the Zytiga, but I wonder about others who have experienced fatigue on Zytiga. I've heard it's worse on Enzalutamide,
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7430
Posted 10/28/2018 10:08 AM (GMT -7)
Well, no Z for me at this time, but I'll be starting my 4th go-ahead with HT next week (Casodex and Lupron)

Mel
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Old Sailor
Regular Member
Joined : Aug 2009
Posts : 210
Posted 10/28/2018 7:08 PM (GMT -7)
I am one of fortunate ones that Zytiga + prednisone has worked exceptionally well - 5 years with undetectable PSA.
Diagnosed with gleason 4+5 in 07/09, RRP in 08/09. One met detected in 11/10. Started zytiga 11/13.
The only side effect is fatigue.
The Old Sailor (now 76 years old hoping to make it to 80!)
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rockyfords
Regular Member
Joined : May 2016
Posts : 184
Posted 10/31/2018 7:05 AM (GMT -7)
It's all a journey, right? Zytiga looks to be my last approved systemic therapy and I have been WAITING on it to tell me, one way or another, what to do about potential clinical trials-

They say you gotta give it a good 3 months to see if it eventually works or not; delayed response is not uncommon, maybe around 5% of guys IIRC.

I failed Xtandi real quick last year, so really expected Zytiga fail as well, but 3 months to know? ouch....

2 months in from Zytiga start- my PSA had gone from 8 to 24 in that period- at that point I was taking Tylenol 24/7 and oxycodone every 2-4 days for pain; lots of naps in the day, generally weaker and fatigued, looking down the barrel, sending out inquiries for clinical trials, thinking time is short.

But now, I seem to be taking less naps (lately not at all)- my energy improves greatly- I still take tylenol, but sometimes 2x a day rather than 3, oxycodone maybe every 4-5 days but pain is less widespread than before- my days are better.

I get labs every 2 weeks to monitor for liver effects, and this last time, my PSA went up to only 25 from 24- (PSAdt of 30 weeks vs 7 weeks after the previous lab)- is the Zytiga finally starting to do something? My body wants to say yes, but my brain sez "24 to 25? don't get too excited"- CT scan scheduled in a few days, labs in 9 days- we shall see. It may gum up access to a clinical trial, but I guess that is a good thing for a while.

So, in the context of a Zytiga experience, anyone else have a 3 month delay to effect? Anyone else have a "stable" PSA response and then stay on Zytiga as opposed to the big drops seen by most? Has anyone been treated with dexamethasone rather than prednisone with Zytiga, and how did that go?

still rockin' for now- battle on brothers
rf
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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 984
Posted 10/31/2018 7:56 AM (GMT -7)
Rockyfords sorry the drugs didn't make the psa drop. But if you are feeling better that is the key. Are you also taking lupron? I am experimenting with my zytiga dosage b/c my liver #'s went wild. They have been ok with 1/2 dose( 500mg). I just started 750 mg yesterday to see if my liver can tolerate that dose. My MO prefers I take 750. As long as you are feeling better try some exercise-anything-even just walking. I fight fatigue through strength. Good luck on scans and blood work. My scan is tomorrow. #rockon
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