ZYTIGA: Our Collective Experiences

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Dr WHO
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Date Joined May 2016
Total Posts : 280
   Posted 6/25/2017 8:38 AM (GMT -7)   
I just started Zytiga a week ago. I have been on Lupron for a year. My medical oncologist came back from a conference where they covered the results from the U.K. Stampede trial which showed very promising results using a mixture of Lupron and Zytiga for those with advanced cancer. So far the only issue is keeping when you take the pills straight. Zytiga on an empty stomach and the steroid that you have to take with it on a full stomach. My PSA is still <0.1. However, I have a rare form of cancer (Ductal) that can not always be monitored by PSA.
58 when diagnosed
4/18/2016 DaVinci surgery
Gleason 8 (4+4) T3aN1Mx ductal Stage 4 D1 prostate 74 g, 1/14 lymth nodes "100%" cancer.
PSA= 3.3 2014, 4.7 2015, after surgery 0.1 5/2016, < 0.1 Sept, <0.1 Jun 2017
6/2/2016 started Lupron, 6/14/2017 started Abiraterone
External radiation: 38 treatments ended 10/7/2016
Leakage June >750 g, July < 10 g

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2088
   Posted 6/25/2017 9:48 PM (GMT -7)   
Zytiga was the drug that finally dropped Gary's PSA to single digits and continued to be effective for a fairly long time. It worked better than xtandi, but it was the first drug of the two used, so it might have been the order he was given it, not the effectiveness of zytiga over xtandi The prednisone was rough on his stomach, and it was hard for him to find a block of time to keep his stomach empty to take it. It seemed important to the MO not to fudge on that, so it must be important to its effectiveness. There were quite a few tx that required added prednisone. Chemos did also. The doc finally gave Gary dexamethasone, and he tolerated it better. He's still taking it because it increases his appetite.
Beth
DH 52@dx 2010
PSA:1983 G 4+5=9 multiple mets bones and nodes
Xgeva lupron Docetaxel, Zytiga 2012 Smarium, Xtandi 2013 xofigo 2014 Cabazitaxel, Zytiga
RT sacrum X 10
PSA 1/15 100
2/15 liver mets
DRibbles trial 3/15 PSA:259
6/15:Psa 900
docetaxil PSA 7/15:1054 9/15:921;12/15:1008
xtandi 1/16:665 3/16:1316 ascites
Mitoxantrone 8/16:792 Oct:590 Dec:532 1/17:412 jaw necrosis 5/17 psa 900+ end tx

Post Edited (celebrate life) : 6/25/2017 11:03:02 PM (GMT-6)


Annie88
Regular Member


Date Joined Oct 2016
Total Posts : 176
   Posted 6/26/2017 8:12 AM (GMT -7)   
Debbie, my guess is that it is approved for use before chemo. Here's a recent article (April 2017 that reports on the sequencing (order) of taking abiraterone and enzalutamide. (zytiga and xtandi)

Exploring the optimal sequence of abiraterone and enzalutamide in patients with chemotherapy-naïve castration-resistant prostate cancer: The Kyoto-Baltimore collaboration

https://www.ncbi.nlm.nih.gov/pubmed/28455853

alephnull
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Date Joined Dec 2013
Total Posts : 741
   Posted 6/26/2017 8:37 AM (GMT -7)   
DebbieMH,
I was just on the NCI site concerning zytiga and docetaxel (chemo)for prostate cancer.

It says they are only approved for hormone refractory (castrate resistant PCa)

Zytiga
/www.cancer.gov/about-cancer/treatment/drugs/fda-abirateroneacetate

Docetaxel, taxotere
/www.cancer.gov/about-cancer/treatment/drugs/fda-docetaxel#Anchor-Prostat-16229
PSA at age 49, 4.0 NO ref by PCP
PSA at diagnosis 20.6, age 54 in 2013, 12 out of 12 cores positive
My PSA Curve
, DRE negative but firm, prostate volume 51.56
Degarelix shot 10/13, Robotic 11/13, Degarelix shot 12/13,
EBRT June 2015, local GS 9 - 4+5 , Stage pT3b N1
Lupron vacation started, T-level 13.02 - June 2016
Sept-16 T-12.9 <0.1, April 2017 0.18 sigh

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 639
   Posted 6/26/2017 1:31 PM (GMT -7)   
I am wondering if red wine is ok with Zytiga?  I take the Zytiga first thing in the morning and may have a glass (usually 9 0z.) late afternoon.  I checked the "University of Google" and really got conflicting answers.  Same goes with caffeine.  That morning and midmornig coffee/tea is great. 
 
Has anyone received some definative advice on either of these two "vices?"
 
Our daughter gave me a bottle of Gnarly Head and Coppola for birthday/father's day and I don't want to regift.
Thanks,
Mr. Bill
 
 

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2088
   Posted 6/27/2017 12:03 AM (GMT -7)   
Mr Bill,
I know that coffee is okay if you wait the two hours before and after taking zytiga. Others have said black is okay with it, but our MO was pretty adament about the stomach being completely empty. The wine is a definite nono, so go ahead and send it on to me. (Just kidding, Gary doesn't drink, so we didn't ask about alcohol)
Beth

Dr WHO
Regular Member


Date Joined May 2016
Total Posts : 280
   Posted 6/27/2017 5:05 AM (GMT -7)   
Dear DebbieMH

Yes, you can start Zytiga before chemo. That was the case for me. I have been on Lupron. My MO added Zytiga to the mix based on the results of the U.K. Stampede trial that was published this month.
58 when diagnosed
4/18/2016 DaVinci surgery
Gleason 8 (4+4) T3aN1Mx ductal Stage 4 D1 prostate 74 g, 1/14 lymth nodes "100%" cancer.
PSA= 3.3 2014, 4.7 2015, after surgery 0.1 5/2016, < 0.1 Sept, <0.1 Jun 2017
6/2/2016 started Lupron, 6/14/2017 started Abiraterone
External radiation: 38 treatments ended 10/7/2016
Leakage June >750 g, July < 10 g

DebbieMH
Regular Member


Date Joined Jun 2012
Total Posts : 65
   Posted 6/27/2017 5:57 AM (GMT -7)   
Thank y'all for posting. After my husband has his next scans - we will talk to the doc about adding Zytiga instead of doing the chemo. Seems like less side effects, however a longer treatment time. Again, thank y'all for your insights and experiences, it really does help!
Husband:
Diagnosed 4/12; PSA 177; G9 (5+4); some bone mets
Eligard + Casodex 4/12
Radiation 8/9/12 - 10/5/12
HT stopped 3/12/14
HT restarted 2/3/15; stopped 8/15
HT restarted 4/16; stopped 11/16
HT restarted 5/17
BRCA2 Gene

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 639
   Posted 6/27/2017 7:09 AM (GMT -7)   
Beth,
Thank you for the reply. Once again, I admire your steadfast courage.

Mr. Bill

Annie88
Regular Member


Date Joined Oct 2016
Total Posts : 176
   Posted 6/27/2017 7:26 AM (GMT -7)   
After a tumour board discussion, my husband has been approved for a prescription for Zytiga. The only problem is that both our insurance and the government don't cover a cent of the cost unless the man is CR.

However, a recent abstract presented at ASCO suggests that if Zytiga is taken with a low fat breakfast (rather than before/after fasting), 1/4 of the dose has the same effect as the full dose. Also, it seems that this medication (likely a generic brand?) can be purchased from India. Does that seem to good to be true?

/healthunlocked.com/advanced-prostate-cancer/posts/134954671/zytiga-combined-with-breakfast-lowers-cost-of-treatment-to-one-fourth

Post Edited (Annie88) : 6/27/2017 11:40:47 AM (GMT-6)


57Partnership
Regular Member


Date Joined Dec 2016
Total Posts : 45
   Posted 6/30/2017 3:09 PM (GMT -7)   
Thanks so much for starting this thread, CycloneFan. Very timely for us.
Husband 56 @ Dx January 2017
PSA Nov 2016: 13.2
PSA Dec 2016: 17.1
Bx: 1/12 pos, 5% in one core
G7=4+3 (Vanderbilt); G8=4+4 (Johns Hopkins)

Bone Scan showed lesion on L1 vertebrae; confirmed via biopsy
Retroperitoneal lymph node involvement confirmed with CT

Casodex started 3/17/17
Lupron started 3/24/2017

PSA 4/20/2017 1.32 (YES!)

1st Taxotere infusion 4/27/17

PSA 6/29/2017 .48

57Partnership
Regular Member


Date Joined Dec 2016
Total Posts : 45
   Posted 6/30/2017 3:12 PM (GMT -7)   
Alephnull, I didn't read the linked articles, but I will share that our insurance has covered Taxotere only one month after starting Lupron.
Husband 56 @ Dx January 2017
PSA Nov 2016: 13.2
PSA Dec 2016: 17.1
Bx: 1/12 pos, 5% in one core
G7=4+3 (Vanderbilt); G8=4+4 (Johns Hopkins)

Bone Scan showed lesion on L1 vertebrae; confirmed via biopsy
Retroperitoneal lymph node involvement confirmed with CT

Casodex started 3/17/17
Lupron started 3/24/2017

PSA 4/20/2017 1.32 (YES!)

1st Taxotere infusion 4/27/17

PSA 6/29/2017 .48

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 639
   Posted 7/1/2017 4:40 PM (GMT -7)   
I was admitted to Clinic a few days ago (just one night), for another issue. The Pharmacists sometimes make rounds with Physicians. I asked if a glass of red wine was OK now and then. Pharmacist checked her repository of information and came back with a no. Has something to do with liver function. Bummed me out.

Lord, give me coffee to change the things I can change, and wine to accept the things that I can't. ~Internet joke, c.2013

Wings of Eagles
Veteran Member


Date Joined May 2013
Total Posts : 647
   Posted 7/1/2017 8:51 PM (GMT -7)   
Mr Bill,
Just my opinion, -All respect to Pharmacist, but they are not Doctors, and all respects to Doctors, but you will get conflicting answer there too, and they might not be nutrition or alcohol/effects experts. I just checked my repository of non-conflicting information, and my advice is-a 9 oz glass of wine will not hurt you any more than many other things, and may actually be a benefit, i e relaxation and stress relief!

Less stress is definitely good for fighting your PC, I could not find any info from Jensen Drug Co. about the subject either, So my advice, be bold, go for it, it is your life after all, you can decide for yourself. Cheers!

I think I'm safe in posting this as there are only two other PC posters online right now, I think some of our friends are enjoying their red wine right about now!
Wings(and I dont even drink alcohol)
DX PCa -11/04/12,age 57=Biop-GS 3+4=7 and 4+3=7 w/mets PSA=71.2 start Lupron ,

1/13=2.7 2/13=0.67 3/13=0.16 6 /13=0.10
9/ 13=0.7 11/13=1.43 12/13=2.7 4/14=2.7
6/14=3.77, 8/14=5.25 Zytiga:
9/14=1.46 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06
9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06
3/17=<0.06

Post Edited (Wings of Eagles) : 7/1/2017 10:06:35 PM (GMT-6)


mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 639
   Posted 7/2/2017 6:52 AM (GMT -7)   
Mr. Wings,

I agree with your theory. I only have a 6 oz. glass every few days, maybe twice a week.
It is relaxing and allows me to put things in proper perspective. The five year rule does apply here. That is in five years you don't want to ask, "why didn't I?"

Used to enjoy a glass of Bailey's or Sambuca, but with dairy in Bailey's and who knows what in other "adult drinks," I now avoid them.

Mr. Bill

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 639
   Posted 7/3/2017 2:06 AM (GMT -7)   
Just wanted to bump it up.

kmclark1
Regular Member


Date Joined Mar 2014
Total Posts : 75
   Posted 7/5/2017 10:03 AM (GMT -7)   
Just finished three months on Zytiga and Lupron. Finally got on a good rhythm taking prednisone in morning with breakfast. Usually non fat yogurt with berries, a banana, couple slices of multi grain toast with organic peanut butter and no sugar jam (just a little for some taste). Wait a couple hours and then the Zytiga with water. No stomach problems and the treatment has been pretty effective. PSA from 4.5 to 0.4 in three months.

I live just south of Boston and played pretty hard this weekend. late night working Friday. Boat and fishing Sat with my daughter and her boyfriend. Spent all day on the water, then pool and bbq with friends and family. Sunday was some errands and working to get some thing done for a client. Full day on Sunday. Monday fishing all day of Cape Cod, on the water for 12 hours, and celebrating the 4th. No exhaustion of fatigue after a good four days. Then it hit went to bed around 11 pm Monday and woke up around noon on the 4th feeling pretty good. I am guessing this would of hit me a lot harder on the Casodex regime.

Overall a great weekend. Hope everyone else's was similar.
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
12/13 53, 12/13 7.45, 12/13 6.39, 1/14 2.36, 3/14 0.78 3/14 0.76 6/14 0.23 10/14 0.18 6/15 0.08, 9/15 .11, 12/15 .13 3/16 .14, 6/16 .17 9/16 .29 12/16 .7 4/17 4.5
B S - Healing reduction of Mets 12/15 &12/16
Zygita 4/17

Cyclone-ISU
Veteran Member


Date Joined Oct 2014
Total Posts : 986
   Posted 7/8/2017 4:33 PM (GMT -7)   


Here's a first-hand experience to share with every fellow who is taking ZYTIGA ...

It's important to drink plenty of WATER when taking your daily dose of ZYTIGA ... to help avoid any sense of nausea ...

Here's how I learned my lesson ...

One morning, I was in a rush ... so, I "wolfed down" all four of my ZYTIGA tablets in a hurry ...

Within an hour, I lived to regret that ... and ended up with the DRY HEAVES ... a fairly severe case.

LESSON LEARNED from that moment forward !

Ever since then ... and I highly recommend this strategy:

Before taking your daily dose of ZYTIGA, start by drinking some water first.

From there, I take each of the four daily tablets ONE AT A TIME ... and definitely with WATER in between each of my four daily tablets ... and I drink some more water after taking the last pill, as well.

So --- a word to the wise --- take your time and remember to DRINK THE WATER ... before, during, and after taking each one of your ZYTIGA tablets each day !

I've got a few friends who said they had a bit of nausea shortly after taking their ZYTIGA tablets ... I told them to try drinking a bit more water ... and this helped them quite a bit.

It's a strong medication and it is taken on an empty stomach ... four 250 milligram tablets ... so remember to drink plenty of water ...

I thought this first-hand experience with ZYTIGA might help someone else ... remember, fellows ... DRINK THE WATER !

Iowa State University "Cyclone"
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & now ZYTIGA
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing
My "Survivor's Story": www.yananow.org

Annie88
Regular Member


Date Joined Oct 2016
Total Posts : 176
   Posted 7/8/2017 5:14 PM (GMT -7)   
great tip! Thank you Cylone

Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3181
   Posted 7/9/2017 12:08 AM (GMT -7)   
Been on Zytiga almost 4 years now. Sometimes I eat prior to taking it. Sometimes I eat shortly after. Sometimes I take my Zytiga with a burnt toast chaser. I recently noticed my prednisone bottle says Take with food. Bahahaha!!! Stupid!!!!!! I have grown complacent. My liver enzymes are good. My potassium is borderline low. Bananas don't cut it and I hate Avacado's. I take a potassium supplement. Sometimes I forget to take
My meds ......11 years of Lupron.... I forget lots of $&@? I am so GD tired. Well.... it is midnight. I wonder


How
Long will it last. What's next.......too much wine tonight. Gnite
DX 2006 age 42 PSA 3216 stage 4 Gleason (3+4=7 ) Lung, Bone, and Lymph metastasis
A.D.T. 5-1/2 years. Provenge, Zytiga, D.E.S.
Latest Bone scan, C.T. scan, and chest X-ray clear. Current P.S.A. <0.05
53years old
Todd's blog
Twitter @seals_todd

Post Edited (Todd1963) : 7/9/2017 1:12:03 AM (GMT-6)


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3181
   Posted 7/9/2017 12:14 AM (GMT -7)   
Also.... I take
My Zytiga at 5:30 a.m with a cup or two.....sometimes 3 of black coffee
DX 2006 age 42 PSA 3216 stage 4 Gleason (3+4=7 ) Lung, Bone, and Lymph metastasis
A.D.T. 5-1/2 years. Provenge, Zytiga, D.E.S.
Latest Bone scan, C.T. scan, and chest X-ray clear. Current P.S.A. <0.05
53years old
Todd's blog
Twitter @seals_todd

mr bill
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Date Joined Sep 2010
Total Posts : 639
   Posted 7/19/2017 10:46 AM (GMT -7)   
Just thought I would give a little bump so the thread does not get lost in the shuffle.

Cyclone-ISU
Veteran Member


Date Joined Oct 2014
Total Posts : 986
   Posted 7/22/2017 11:52 AM (GMT -7)   


So --- another first-hand experience to share with ZYTIGA ...

A lesson that I learned, the hard way ...

My morning starts out with a large glass of water and four 250 mg ZYTIGA tablets ... large, white, chalky pills.

One morning, I shook four of the ZYTIGA tablets out of the medication bottle and put them on my kitchen counter.

I didn't realize it, but the countertop was wet with water from the sink nearby ...

By the time I went back to take my four ZYTIGA pills, they were dissolving ... all over the countertop ... I hadn't noticed that there was water on the countertop where I placed my ZYTIGA pills!

I did my best to "rescue" the dissolving tablets that morning.

Lesson learned! Keep your medications in a DRY place!

Also --- ZYTIGA is to be stored at room temperature --- a reminder to all when traveling, especially in the wintertime!

Sent with my best,
Iowa State University "Cyclone"
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & now ZYTIGA
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing
My "Survivor's Story": www.yananow.org

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2196
   Posted 7/22/2017 12:24 PM (GMT -7)   
Cyclone,
Due to the price of Zytiga I probably would have licked the counter clean. I take them the old fashioned way. Put four in one hand and throw one at a time into my mouth and throw a handful of water into my mouth with each pill. Just like I did as a kid. Some habits are hard to change.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09
Gleason upgraded to 3+5, volume less than
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4
Started IMRT Jan. 2010 72gys
7mpost SRT PSA.27 12 m.19, 21 m.27,May 2013 PSA 27 Mets,began HT, Ztyiga 3/10/15

Cyclone-ISU
Veteran Member


Date Joined Oct 2014
Total Posts : 986
   Posted 7/22/2017 12:35 PM (GMT -7)   

Hello 60Michael,

That's about what I had to do, literally!

It was like eating dissolved, wet, blackboard chalk!

Yes, with ZYTIGA prices at about $9,000 a month, each day's dosage is worth about $300.00!

A little testimonial, though, and a story of hope to share with others ...

I just ordered my 25th monthly bottle of ZYTIGA ...

As a way to track my progress, I started saving those empty bottles each month ...

So ... visualize 25 little ZYTIGA bottles, all lined up in a row on a shelf ...

I told this story to a good friend, who is also a health buddy of mine ...

He was needing to go to a "new step" in his treatments ... he talked to his doctor and asked if he could try ZYTIGA next ... and it is helping him, as well.

I look at those 25 bottles lined up on my top shelf, every single morning!

Iowa State University "Cyclone"
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & now ZYTIGA
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing
My "Survivor's Story": www.yananow.org
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