ZYTIGA: Our Collective Experiences

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.

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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

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..

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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..

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

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...

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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

Husband just started his second bottle of Zytiga and the MO and GP don't think monitoring is necessary so we won't know until he goes back for his next Lupron injection in April. At that time, he'll be on his fourth month and will see then if BP or liver tests have changed. Hopefully not but his liver enzymes did rise when he was getting taxotere but taking him off the statins helped his liver to recover. He's not currently on statins either - trying diet and supplements and there seems to be a slow/downward trend on his cholesterol numbers.

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Husband: Initial PSA 74.6 11/2016
12/2016 - MRI guided biopsy, CT lymph biopsy, NM bone. Path: Metasiatic prostatic adenocarcinoma,lymphadenopathy Gleason 4+3=7 (90% 4) 33mm of tumor 100% (3 of 3 cores) Perineural invasion 3 bone mets. Treatments: Lupron. Casodex 12/28/16- 2/2/17. Docetaxel 2/2/17 6 doses. Casodex added 8/17 PSA .12; PSA 10/17 .06. 12/17 bone mets greatly diminished.

Thank you for the posts in this thread. I recently started Zytiga as an addition to my Lupron. I will be on it for the duration of my initial ADT treatment. My two years of ADT is up in August of this year so I'll be taking Zytiga for about six months. I take two 500 pills instead of the four 250 ones. I'm drinking a large Tervis glass of water before taking the pills and another while taking them. My only issue is that my doctor recommended taking them before I go to bed to lessen the fatigue impact. The two large glasses of water just before bed are now causing me to need to get up to urinate during the night. Cyclone's "dry heaves" post makes me think the more water the better but maybe I'll cut it back a bit. I see some guys take their Zytiga in the morning instead. Has anyone tried both ways? I'm wondering if there is really a big difference with fatigue if you take it in the morning vs. night time.

Since some asked to include insurance info with posts, I have insurance through my employer. My Zytiga comes through Accredo with a six dollar copay. I am not castrate resistant and PSA is currently "undetectable" so I definitely feel blessed that I had no problem getting insurance approval with a meager copay. It is rotten to hear that some that very much need it have a very difficult time getting coverage for it.

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Age 50 at DX July 2016 PSA at DX =47
Mixture of G7 and (4+5) G9 cores.
Lupron scheduled for 2 yrs. w/Zytiga last 6 mths
open RP At Cleveland Clinic w/Dr. Eric Klein on 12/19/2016. Post Op Path Report confirms G9 and positive pelvic lymph node
ART w/Dr. Rahul Tendulkar at Cleveland Clinic 5/17 -6/17.
Adjuvant Docetaxel (4 infusions) starting March, 2018
PSA undetectable since surgery 12/2016

Post Edited (schoolpsych) : 2/26/2018 3:22:43 PM (GMT-7)

Good luck licitti3! Five days in for me. Just tonight noticed a tad more mild heat flashes.

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Age 50 at DX July 2016 PSA at DX =47
Mixture of G7 and (4+5) G9 cores.
Lupron scheduled for 2 yrs. w/Zytiga last 6 mths
open RP At Cleveland Clinic w/Dr. Eric Klein on 12/19/2016. Post Op Path Report confirms G9 and positive pelvic lymph node
ART w/Dr. Rahul Tendulkar at Cleveland Clinic 5/17 -6/17.
Adjuvant Docetaxel (4 infusions) starting March, 2018
PSA undetectable since surgery 12/2016

Hello JU4DAD,

This is a time to rely heavily on the expertise of your father's medical team.

I'm sorry your father is experiencing a wide variety of medical conditions --- a heart attack and stroke, while being treated for prostate cancer.

This is a time when your father's doctors will play an essential role in determining what is best for your father's particular situation. Form a close bond with your father's doctors ... stay on top of his medical situation ... and keep asking questions, each time you see your father's doctors.

Meanwhile, you have the care, concern, and support of all the members here on the Healing Well website.

Support from across the miles,
CYCLONE ~ Iowa State University

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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, & currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & ZYTIGA & RADIATION
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing

Bumping this thread and subscribing .... looks like my husband is going on Zytiga in April. Had been holding off due to the cost; but PSA keeps doubling, so it's time.

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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; 7/17 scans - very little change
10/17 - PSA .056 and rising; Zytiga starting 1/18

AKAI

In regards to your BP questions. Mine went through the roof. I had not idea physically but the MO was very concerned. First BP med resulted in coughing, that was changed now everything back to normal.

Be well.

Schoolpsych,

I was taking my four in the a.m. Then reading about Chuck's experience with taking at night during pit stop I switched over. Six of one half dozen of the other. Only advantage I found was being able to drink tea first thing in morning without a pang of doubt.

Mr. Bill

Zytiga works pretty much the same way Bicalutamide does but it's much more effective. It controlled my stage 4 prostate cancer for almost 2 years...You must also take a second drug called Predisone but the combined side-effects of the two drugs are pretty mild....I would ask your oncologist about a treatment called Provenge which might benefit you now....

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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..