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ZYTIGA: Our Collective Experiences

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Posted 9/18/2018 5:40 PM (GMT -6)
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.
Dx 5/18/17
11 of 12 cores positive 2 4+4
RALP 7/27/17; 3 positive nodes
No RT b/c scan shows multiple bone mets
Cleveland Clinic upgrades path to G9
Local & Cle Clinic MO agree ADT + Zytiga +Pred
psa post op 8/31 0.15
10/25 0.24
11/9 0.28;
start lupron 11/17
psa 12/8/17 0.13;
start zytiga 12/15
psa 12/28 0.03
4/4=<0.01
7/3=<0.01
stop Zytiga 7/16 due to bad liver #'s
9/11/18 restart Zytiga
Posted 9/18/2018 7:08 PM (GMT -6)
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
DX T4M1 GS: 8. 12/16. Age 65. PSA 240. Bone mets in femur, ribs, scapula, spine. Start ADT 2/17: Montly PSA declines: 28, 17, 9.5 . . .12/17 = 1.07; 3/18 = 0.7 [NADIR] Docetaxel May-Aug 2017; PROSTVAC (NCT02649855, 9/17 – 1/18). Provenge 3/18. RALP 5/18. Start Abiraterone 8/16/18. Result after 1 month: PSA 0.19
Next stop: radiation to bone mets
Posted 9/19/2018 8:27 AM (GMT -6)
Gobucks,

You nailed it!

Mr. Bill
Posted 9/20/2018 5:43 PM (GMT -6)
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!
Age 59 when DX
DX Nov 2016
PSA 350
Bone & Lung Mets
Lupron every 3 months
Jan Biopsy 12 samples all positive
Gleason 9 ( 5 + 4 )
Jan 4 PSA 10.3
Feb 4 PSA 0.60 Feb Testosterone 0.2
Jan Docetaxel with Predisone 6 times 3 weeks apart, Apr 21 done
March start Zometa
April 4 Turp
PSA June .018 Sept .016 Dec .058
March 2018 PSA .320 Casodex added
June PSA .81
August PSA 2.6
Posted 9/20/2018 9:15 PM (GMT -6)
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.
Posted 9/21/2018 7:54 AM (GMT -6)
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..
Age now 75 . Diagnosed G-9 6/2010. RALP, Radiation failed
Lupron, Zytiga, PSA <0.1 10/16 no change <0.1 5/17 PSA 1.6 Chemo or Provenge next..Sept '17, PSA now 9.2. ADT including Zytiga has failed. Will investigate treatment options. 11/17 PET/CT clear, but 4 new bone mets..Going to try Xtandi and see how I respond to that..3/2018 PSA now 54, chemo next. 5?10/18, PSA 200, Dosetaxel started..
Posted 9/21/2018 8:29 AM (GMT -6)
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.
Posted 9/26/2018 2:13 PM (GMT -6)
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.
Age 62, SoCal
Diag PC May ‘17 PSA 18; high 58
Diag PC IV after C-11 scan; Lymph/bone mets
Casodex started 9/28/17 when PSA = 58
Lupron started 11/28/17 when PSA = 23
PSA 1/30/18 = 2. 82
Taxotere #1 2/7/18 at Keck/USC Newport Beach, CA
PSA 3/8/18= 3.00; 4/3/18= 2.00; 5/4/18= 2.30
Taxotere #6 (final) 5/23
PSA 6/4/18= 1.10; 7/2/18= 0.70; 7/25/18= 0.60
Diet 98% Vegan - no alc
Posted 10/8/2018 3:56 PM (GMT -6)
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!
Age 59 when DX
DX Nov 2016
PSA 350
Bone & Lung Mets
Lupron @ 90 days
Gleason 9 ( 5 + 4 )
Jan Chemo
2017 June .018 Sept .016 Dec .058
2018 March .320 June .81 Aug 2.6
Zytiga Started Sept

Post Edited (Everton) : 10/17/2018 5:51:26 AM (GMT-6)

Posted 10/8/2018 9:31 PM (GMT -6)
Everton, I like Miralax or at Costco Laxaclear.
Dx 5/18/17
11 of 12 cores positive 2 4+4
RALP 7/27/17; 3 pos nodes
No RT b/c scan shows multiple bone mets
Cleve Clinic upgrades to G9
Local & Cle Clinic MO agree ADT + Zytiga +Pred
psa post op 8/31 0.15 to 0.28 11/9
start lupron 11/17
psa 12/8/17 0.13;
start zytiga 12/15
psa 12/28 0.03
4/4=<0.01
7/3=<0.01
stop Zytiga 7/16 due to bad liver #'s
9/11/18 restart Zytiga
9/17 1/2 dose
10/5=<0.01!
Posted 10/11/2018 4:50 PM (GMT -6)
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
Dx 07/13 PSA 7.1 at age 68
08/13 LRP Gl 4+3 ter5 mgn+, SV, LN -, pT3a N0 Mx
11/13 PSA .07
12/13 12 month ADT
01/14 37 EBRT
11/14 Retentive. SPC installed
12/14 ADT Break. 05/14 - 09/15 PSA <.01
12/15 .01 O6/16 .09 09/16 .53!! 12/16 .71
03/17 2.6. ADT restart
07/17 .08
12/17 .09
02/18 .18
Start Bicalutamide
03/18 .17
07/18 .42
Start Abiraterone
07/18 .86
08/18 .81
10/18 .76

Post Edited (Chask) : 10/11/2018 5:43:41 PM (GMT-6)

Posted 10/13/2018 10:05 AM (GMT -6)
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.
DX 55 Yrs Old - T4,N1,M0
11/13 - PSA 130, MRI BX -8/8 cores positive -G8 (4+4), BS Mets spine hips ribs, No Symptoms
11/13 - Firmagon, 12/13 Trial S1216,1st Lupron, Casodex

My PSA Chart

Zygita 4/17

Post Edited (kmclark1) : 10/13/2018 9:09:02 AM (GMT-6)

Posted 10/13/2018 4:59 PM (GMT -6)
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
Dx 07/13 PSA 7.1 at age 68
08/13 LRP Gl 4+3 ter5 mgn+, SV, LN -, pT3a N0 Mx
11/13 PSA .07
12/13 12 month ADT
01/14 37 EBRT
11/14 Retentive. SPC installed
12/14 ADT Break. 05/14 - 09/15 PSA <.01
12/15 .01 O6/16 .09 09/16 .53!! 12/16 .71
03/17 2.6. ADT restart
07/17 .08
12/17 .09
02/18 .18
07/18 .42
Start Abiraterone
07/18 .86
08/18 .81
10/18 .76
Posted 10/14/2018 9:43 AM (GMT -6)
Chase. I am in Boston. Going to have a detailed discussion first of January. Will let you know
DX 55 Yrs Old - T4,N1,M0
11/13 - PSA 130, MRI BX -8/8 cores positive -G8 (4+4), BS Mets spine hips ribs, No Symptoms
11/13 - Firmagon, 12/13 Trial S1216,1st Lupron, Casodex

My PSA Chart

Zygita 4/17
Posted 10/14/2018 5:05 PM (GMT -6)
I’ve read elsewhere that taking a lower dose of Zytiga with food is effective . Any comments?
Bob
DOB January 1944
8/’12 PSA 2.7; 5/’13, PSA 6.6 (actually double due to finasteride)
7/’13 Bx GS 4+5=9, 2 of 6 cores, 10%, 40%; stage Pt1c
9/’13 ORRP, pathology GS 4+5=9, EPE and margin+ at base (4mm, GS7), BLSVIs+, 10 lymph nodes resected (clear); stage upgraded to Pt3bN0M0
11/’13 - 5/’14, PSA 0.1 to 0.3
6/’14 SRT by IMRT/IGRT (68.2 grays/38 Fx) to prostate bed, ADT (6 months Lupron)
9/’14 - 8/’15: PSA: <.1, to 1.2
9/’15 MRI, CT-PET finds two iliac lymph nodes suspicious for PCa; started 13 months of ADT3 (Lupron, bicalutamide, dutasteride) plus plus metformin, cabergoline, estradiol patches, prolia , vitamin D3, calcium. IMRT/DART (75 grays/50 Fx) to pelvic lymph nodes. Stopped ADT3 11/’16.
11/’15 - 5/’17: PSA .03 to 2.3.
2/’17: Rx finasteride added
5/’17: F-18 Fluciclovine (axumin) PET/CT scan finds 9 mm femur met. Restart ADT3; start monthly Xgeva, stopped finasteride.
6/’17 SBRT via IMRT (27 grays/3 Fx) to femur met.
Recent PSA trend: 6/’17 - 10/’17: <.1; 1/’18, .175; 3/’18: .162; 5/’18: .312; 8/’18: 0.8
6/’18 stopped bicalutamide, trelstar and xgeva.
8/’18 11 Ga 68 PSMA CT PET scheduled for 10/18 at UCSF
Posted 10/15/2018 1:22 AM (GMT -6)
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
Dx 07/13 PSA 7.1 at age 68
08/13 LRP Gl 4+3 ter5 mgn+, SV, LN -, pT3a N0 Mx
11/13 PSA .07
12/13 12 month ADT
01/14 37 EBRT
11/14 Retentive. SPC installed
12/14 ADT Break. 05/14 - 09/15 PSA <.01
12/15 .01 O6/16 .09 09/16 .53!! 12/16 .71
03/17 2.6. ADT restart
07/17 .08
12/17 .09
02/18 .18
07/18 .42
Start Abiraterone
07/18 .86
08/18 .81
10/18 .76

Post Edited (Chask) : 10/15/2018 12:39:51 AM (GMT-6)

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