After working on a doable treatment plan with my Oncologist, we decided to try Xtandi as my next level of treatment..But NO, we both get a letter from my Medicare Advantage United Healthcare insurance that I must first try Zytiga-prednisone before they will pay for Xtandi....So it seems insurance companies can just make up "guidelines" as they see fit instead of just telling you that you must try the cheaper medication first...So we are back to the Golden Rule: "He who has the Gold makes the rules"....If the Zytiga is effective and the side-effects are tolerable, it makes little difference to me which drug we start off with....

Zytiga worked great for me, but it shut down my liver, so they pulled me off it after 4 months. Be sure and get liver function tests each month.

Supposedly I start Xtandi next. It is over $1k more per month than Zytiga. Will meet with the Onco on Dec. 3rd.

Fairwind, that sucks. Especially because some day, the norm will probably be the two drug combo or similar...If it will make you feel a bit better, my dad lives in a country that has approved Zytiga, but no insurance covers it, and Xtandi is not even approved yet, not to mention Xofigo or other newer ones...Not available or not covered. Pharma companies do a roll-release, first negotiate with countries where the return on profit is the highest.

Dear Fairwind,

That's a rough road, feeling like your insurance plans and policies are setting the ground rules for your treatment plan ...

Meanwhile, I thought it might be helpful to know that I started taking ZYTIGA this year and it has really been helping me a great deal. I didn't know what to expect when I first started taking this fairly new medication. That's why sharing with each other on this forum is so helpful to all of us.

My oncologist wanted me to get started on ZYTIGA this past summer, while my ADT hormone shots continue. I've also undergone a full series of Taxotere chemotherapy treatments in the past few months.

When I first got started on ZYTIGA, my oncologist had me come back for lab work within 20 days. I didn't know what to expect with my lab numbers after just 20 days of starting ZYTIGA. Already by that time, my PSA was starting to work its way down. That really encouraged me a lot. I know that for others, it takes a bit longer for positive effects to show up.

In my case, ZYTIGA has been continuing to help bring my PSA down ever since, bit-by-bit. My oncologist has me return for lab work and a consultation every four weeks, without fail. He watches my lab numbers very carefully, to stay on top of any side effects or adverse reactions to ZYTIGA, which others have mentioned above in this thread. My oncologist is very proactive and caring.

I'm very mindful of the fact that ZYTIGA doesn't always work for everyone. I hope every day that other treatments or alternative medications like XTANDI can help them, if ZYTIGA doesn't work for them. We all have different reactions to various medications and treatments. That's why it's important to hear from a wide range of people on topics like this.

Meanwhile, I felt it would be very helpful for you to hear from someone who is currently being helped by ZYTIGA. I really wanted to send you a note of encouragement when I saw your posting. In the past few weeks, a couple of informative threads have been posted about ZYTIGA, and those might be helpful to you.

At least in my case, taking ZYTIGA led to my oncologist saying these words to me recently, "Your PSA has lowered itself yet again because of ZYTIGA." I never thought I would hear those words again in my life, so I have a lot of gratitude for my doctors and also for the invention of ZYTIGA. There are several of us here on this forum that have already been helped by ZYTIGA, and I truly hope it will help you, as well.

Please keep us posted, Fairwind. I hope you see some positive results from ZYTIGA.

Sent with my best,
Iowa State "Cyclone"

Fair, I have been on Zytiga since November 2013 with PSA undetectable since then. I am also 73 with Gleason 9 diagnosed in July 2009 - I hope Zytiga works very well for you. The old sailor.

So sorry that you got that denial. We know how it feels to have the insurance company play God with your treatment and to override what your doctors feel is best. Kind of an "add insult to injury" situation.

We truly hope that the Zytiga works for you without any complications.

Amazing...I have had almost the exact same experience as my doctors prescription was being processed...The huge co-pay that suddenly disappeared.. Mine was absorbed by these people:

/www.panfoundation.org/

Somehow, it was just too easy...But I'm not complaining....God bless them whoever they are....

Post Edited (Fairwind) : 11/25/2015 10:47:37 PM (GMT-7)

No one told me about support programs for Zytiga. I paid the first month $5k out of pocket. But it just hastened the end of my deductible.

But be forewarned - the Zytiga $15 copay program MUST be applied for BEFORE the first fill. If you are sure it is coming, APPLY FIRST.

Fairwind,

Are you also going to be doing Xofigo at this time?

An F-18 floride scan revealed a single bone met to T-10 vertebra. A MRI of my torso, with and without contrast dye confirmed the single met so I zapped it with a little (34Gy) SBRT..There are 3 fairly large cancer centers in the Denver area. Rocky Mountain Cancer Centers, The Urology Center of Colorado and The University of Colorado Cancer Research Center at Anshutz..My Oncologist checked for trials that were open and available here but alas nothing fit me....So my script for Zytiga arrived yesterday and we will try that for a while..

No Xofigo for me at the moment..We will wait and see how effective the spot radiation was, + the Zytiga, and go from there....

Post Edited (Fairwind) : 11/28/2015 4:14:04 PM (GMT-7)

I must admit, I had reasons for getting some type of treatment started that would allow me to travel...My wife and I had a long-standing trip planned while I still have no physical symptoms and can function normally...The "pill" treatments allow that...Docetaxel and Provenge, treatments also on the table, plus any worthwhile trials means you stay home for the duration. I value quality of life equally with survival time..Appealing the Xtandi denial would take more time than I was willing to give that process so we went with the Zytiga which my Onco feels will be equally effective and not disrupt our travel plans...If the Zytiga is effective, great, no worries. If it's not, then we can move on to other therapies. I will get a complete blood workup done on the road the first week in January and FAX it to the docs...Any problems, I can high-tail it back to Denver or whatever....

I have taken two doses so far and no noticeable reaction...Just another day...I will be traveling over the Holidays so I'll get a complete blood workup at a walk-in clinic and FAX if back to my docs in Denver..If everything looks good I might extend my trip a little longer....

Fairwind,

How many times did you have to get zapped for the 34Gy SBRT? Is that a one time deal?

Thanks,
Jerry