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ZYTIGA: Our Collective Experiences

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Posted 7/22/2017 1:46 PM (GMT -6)
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
Posted 8/22/2017 6:37 AM (GMT -6)
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.
Posted 8/22/2017 9:10 AM (GMT -6)
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.
Posted 8/22/2017 8:08 PM (GMT -6)
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..
Posted 8/23/2017 1:10 PM (GMT -6)
THis organization can help with large co-pays.

https://zytiga.janssencarepathsavings.com/Coupon/Zytiga/enrollment
Posted 12/30/2017 2:59 AM (GMT -6)
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
Posted 1/2/2018 6:15 PM (GMT -6)
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.
Posted 1/14/2018 6:15 PM (GMT -6)
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...
Posted 1/17/2018 12:47 PM (GMT -6)
Anyone experiencing higher blood pressure from taking Zytiga?

Visiting my oncologist yesterday, the nurse took my blood pressure at 150, my normal was below 130. My oncologist said that Zytiga can cause high blood pressure and since I am only taking one Prednisone instead of two per day I should keep an eye on my blood pressure. He said I may have to increase my Prednisone to two a day to control my bp or to take other blood pressure medication. He said Prednisone helps keeping blood pressure in check.

Post Edited (akai) : 1/17/2018 3:44:03 PM (GMT-7)

Posted 1/17/2018 1:49 PM (GMT -6)
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.
Posted 2/26/2018 1:24 PM (GMT -6)
In the interest of completeness, I would like to now correct what I had posted earlier. This year, my CIGNA marketplace insurance did not pay all of the cost on the ZYTIGA. I paid about $4000 in January, and another $1500 or so in February until I hit my annual out-of-pocket limit of $5700. Last year, I definitely did not have to pay for the Zytiga, even at the start of the year when my annual limit had still not been reached, so they must have changed it or screwed up. I have better things to do with my life than chase down every nuance of health insurance though.

Also, I am now finished with ZYTIGA. After about 16 months or so, the drug is no longer working for me. My PSA went from 178 to 1, but is now back up to 10. My PSA doubled twice in the last 12 weeks, which is a rate not much different than we saw at the time of my original DX. My bloodwork remains good, so the thinking is we will give XTANDI a shot, assuming that the scans I am going for next week come back decent without any vital organ involvement.

My bottom line is that ZYTIGA was a terrific drug. Worked very well for me for almost a year and a half with no new noticeable side effects. I just wish it would have worked longer, but that is not my case.
Posted 2/26/2018 4:08 PM (GMT -6)
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.
Posted 2/27/2018 5:42 PM (GMT -6)
Started Zytiga today wish me luck.
Posted 2/27/2018 9:46 PM (GMT -6)
Good luck licitti3! Five days in for me. Just tonight noticed a tad more mild heat flashes.
Posted 3/3/2018 2:20 AM (GMT -6)
My dad was diagnosed in Jan 2017 stage iv prostate can we with bone mets pelvis ribs sternum hope and skull pda levels +220. Bicaludamide with Lupton and Xjeva subsided and reduced levels until early Jan 2018 psa levels rose +50. Late Jan 2018
Onco started prednisone and Zytega with Lupton and Xjeva still onboard but cut out bicaludamide. Experoence of hip pain excrutiating thru Feb 2018. Last week late Feb 2018 suffered ischemic stroke and heart attack. Luckily caught signs in time and got to e.r. 1 week post stroke going to rehab for stroke related issues. Doctors cannot find source of clot stroke brought on heart attack they say. Concern after reading Zytiga stroke symptoms - did drug do this? Now in rehab today Drs want to bring back Zytega we are scared. Anyone else have issues with Zytega and ischemic stroke and continued drug? Very concerned daughter and family! Thanks in advance for your input(s)
Posted 3/3/2018 8:34 PM (GMT -6)

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
Posted 3/4/2018 6:46 AM (GMT -6)
Thanks for starting this thread. I’ve been fortunate so far with few mets which I’ve treated with intermittent ADT3 and spot RT . But Psa is now .175 which could mean I’m becoming castrate resistant. Zytiga is most probably my next treatment. I’m not having any serious side effect problems with ADT3 and hope Zytiga is no worse .
Bob
Posted 3/19/2018 8:30 AM (GMT -6)
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.
Posted 3/19/2018 10:16 AM (GMT -6)
this seems to be an old post, but i found it very interesting, it is my understanding that zytiga can be used before chemo... i had my zytiga after chemo and it seems to be working altho one month i had a sharp rise to 112 from 26, but i am now at 24.6... no one has an explanation for the rise.. psa was 550 at dx in early 2017... so now i am taking zytiga,lupron, xgiva, prednisone... just started zoloft, just a few days ago, seems to be making me feel better... my co-pay after medicare and supplement is $2800, for zytiga, which is out of my budget , but i have a foundation helping at the moment "PAN" but that is running out, so i am looking for help on co-pay..
so I've been on zytiga for about 6 months and i assure you it sure beats chemo..
Posted 3/20/2018 11:55 AM (GMT -6)
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.
Posted 4/14/2018 8:58 PM (GMT -6)
I have read that taking one fourth te dose with a meal is just as effective as the full dose without food. I am not taking it at all -- but read a report on it recently.
Posted 4/15/2018 9:40 AM (GMT -6)
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
Posted 6/8/2018 11:47 PM (GMT -6)
I am now about to join you Zytiga guys.

After the last visit to my Onco, and showing a steady rise in PSA with a doubling rate of about 3 months while on ADT2 (Zoladex and Cusodex) and clearly castrate resistant, we decided it was time. Onco wants me to have a month off Casodex, take a baseline PSA and liver function tests, then start Zytiga.

Am interested in the side effects others have experienced. I have been fortunate to have had only minor SE’s while on ADT thus far. Was initially on for 12 months, then had almost 2 year vacation and have now been back on for just over 12 months. Had the usual hot flushes and lost libido, neither of which bothered me too much and was lucky not to have any significant fatigue. First time round I did gain weight and lost strength. So second time on, I took extra care with my diet and haven’t gained weight. Strength has gone down again, but not sure how much of that is ADT versus age, (just had 73rd b’day).

Those are the 2 major issues I am concerned about, weight gain and strength loss. How have you guys been affected on those issues? Also any other “surprises”?

Appreciate comments and advice.

Chas
Posted 6/9/2018 8:20 AM (GMT -6)
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....
Posted 6/9/2018 4:05 PM (GMT -6)
Been on Zytiga for 53 months, PSA still undectable. Miracle drug as far as I'm concerned. Have also been on Lupron for 6 years. My Mayo Oncologist says Zytiga unpredictable - some men do well, others not so much. I am blessed to have such a good reaction to Zytiga.
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