ZYTIGA: Our Collective Experiences

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AKFNomad
New Member


Date Joined Feb 2014
Total Posts : 13
   Posted 7/22/2017 12:46 PM (GMT -7)   
My husband is about to start a clinical trial for a BET inhibitor. He has not had zytiga, but had 4+months of xtandi with significant reduction of psa at the beginning and then a slow increase. I am posting in this thread because when we discussed the BET inhibitor trial with the dr, she said that there is some hope that a BET inhibitor will make the cancer responsive to zytiga or xtandi again after it has failed. When I try to read about these drugs the language is so tough for a non-medical person, but I thought this might be of interest to those who have had a good result from zytiga or xtandi. I am sure there are lots of research papers out there that are discussing this, but for me, hearing it from a research doctor is one of the best ways to learn about future treatments.

Angie
Husband dx Nov 2013 Gleason 9 w/mets to bone. Age 52 at diagnosis, PSA 176
Lupron Nov 2013
DaVinci prostatectomy Nov 2014.
Ipilimumab trial spring 2015
Xofigo May-Sept 2015, 6 doses. 10 doses radiation to hip Nov 2015,
Cabazitaxel and Carboplatin chemo Jan-May 2016 - completed 6 cycles
Cytoxan (cyclophosphamide) chemo Sept-Nov 2017
Xtandi (Enzalutamide) Dec 2016- Mar 2017
VAC chemo Apr-Jun 2017

DebbieMH
Regular Member


Date Joined Jun 2012
Total Posts : 65
   Posted 8/22/2017 5:37 AM (GMT -7)   
Seems my husband's doc, Dr. Sartor, wants to add Zytiga to my husbands daily routine. My husband's scans came back very good ... but, his PSA is not dropping as fast as he has in the past. Dr. Sartor wants to start him on Zytiga before he really becomes castrate resistant, "if it is affordable". Husband is on medicare and also supplimental insurance through AARP, United Health care. Talked to United yesterday and the cost of this med is approx $10,000 per month! Husband is in the donut hole right now, so it will cost us $4,059.42 for one month.... after that, he goes into the castrastraphic coverage and will be around $500 until January, where it starts all over again. I'm hoping Dr. Sartor has some other "possibilities" out there to pay for it ... but if not, so be it. So .... bumping this thread and "subscribing" to it.
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

akai
Regular Member


Date Joined May 2012
Total Posts : 248
   Posted 8/22/2017 8:10 AM (GMT -7)   
Call the manufacturer, I think they have a program that subsidize the cost for those that can't pay for it.
Other options would be to obtain Zytiga from abroad.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3562
   Posted 8/22/2017 7:08 PM (GMT -7)   
Big Pharma, in the past has set up "foundations" that will pay all your co-pays as long as you have some type of insurance paying the bulk of the ridiculous posted list price which virtually nobody pays...They WANT you to use the super-profitable drug even if they must pay your co-pays to make this happen..The PAN Foundation was / is one such organization...They may have stopped doing it when the government threatened to investigate the practice..Your doctor or his "Special Pharmacist" will know all the angles available to help with the costs...Much depends on your income and assets...Generic versions of both Zytiga and Xtandi are available from overseas pharmacies at a fraction of the cost but at increased risk..
Age now 74 . Diagnosed G-9 6/2010
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA <0.1 10/'11, <0.1 2/12, <0.1, 4/12 <0.1, 9/12, 0.8 3/13, 0.5 6/13, 1.1, back on HT. 5/16 stay the course, Lupron, Zytiga, PSA <0.1 10/16 no change <0.1 5/17 PSA 1.6 Chemo or Provenge next..

kmclark1
Regular Member


Date Joined Mar 2014
Total Posts : 75
   Posted 8/23/2017 12:10 PM (GMT -7)   
THis organization can help with large co-pays.

https://zytiga.janssencarepathsavings.com/Coupon/Zytiga/enrollment
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

Kathy77
Regular Member


Date Joined Mar 2015
Total Posts : 63
   Posted 12/30/2017 1:59 AM (GMT -7)   
A really helpful post. Thank you. We live in the UK and thankfully Zytiga is available on the NHS, oncologist sorted out the paperwork etc for approval. We are very thankful that it is now readily available here to people living with Pca, I believe this wasn't always the case.

Keeping you all in my prayers X

mtnwife
Regular Member


Date Joined Jan 2015
Total Posts : 36
   Posted 1/2/2018 5:15 PM (GMT -7)   
After reading this thread I was amazed that Zytiga worked for everyone who commented. Unfortunately that is not always the case, because only about 65% (+/-, I didn't look it up) of men actually have a PSA response to Zytiga. Annie88 commented about the 1 pill a day with food protocol so I thought I'd update on what my husband has experienced. We also have lousy insurance and don't qualify for subsidies, so one pill a day sounded good to us. Month one--my husband took the pill with a lowfat breakfast per the U of Chicago study. His PSA went up 40% after a month, so he switched to the full 4 pill dosage on an empty stomach. His PSA stayed the same the second month. So, his doctor said take the 4 pills with a high fat breakfast which he did for the third month. PSA went down to the level where it was when he first started Zytiga which absolutely thrilled my husband. We will see what happens to his PSA this month. Side effects are: frequent shortness of breath, blood sugar levels high, major fatigue, brain fog.

chuck dutton
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/14/2018 5:15 PM (GMT -7)   
Nothing posted here since 6/17,,, did it go some where else ? Anyway i have a tip on the 3 hour widow for taking zytiga... as i am 80 years old i get up during the night to pee,, haven't had anything to eat and I'm going back to bed so it's a great time to take the 4 chalky pills...
chuck dutton (retired) 80
Metastatic stage 4 prostate cancer (diag- jan 2017)
1 round docetaxel with lupron and xgeva
Zytiga with lupron and xgeva (dec 2017)
JAN 2018 --- FEELING GOOD BABY
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