ZYTIGA: Our Collective Experiences

ISU,
Excellent thread as most are with assisting others.
I have been on zytiga since February this year. It has not work so well for me. Sept 2016 my psa was 7 then January 14 and now 20. I have blood draw next wednesday then results the week after to see where the psa is. I get my lupron injection then also. Iam very happy it knocked your psa down.

Thank you ISU Cyclone for starting this thread. I will be a willing "bumper" to keep it in view of posters.

I was diagnosed 11/2012, PSA 71.5, Stage 4 with 4 met spots on pelvis, femur and ribs.
Lupron was effective for a seven months, driving my PSA down to 0.10.

After the eventual sharp rise in PSA in August 2014,I asked my Onc about Provenge. He informed me he would prefer me to start right away on Zytiga, and that my Insurance would not approve Provenge and Zytiga in the same year..So we added Zytiga ,4- 250 mg pills plus Prednisone 5mg twice per day, also still on Lupron at the time. Apparently, My Docs also did not realize that studies show that the Chemo drug Taxotere could have been given as an added benefit in the long run, prior to me start of Zytiga. In any case, my PSA dropped dramatically to undetectable within three months. The Docs refrain from the word "remission" but there is where I see myself. For this I have an ongoing love affair with this powerful, effective new friend of mine.

I have tolerated it well and remain undetectable for the past 31 months. Like my friend ISU Cyclone, I have kept every empty bottle in my cupboard, as a benchmark, and reminder of how fortunate I am. Only occasional, additional fatigue and hot flashes noted. No pains at all from the bone mets. I also get injections every 3 months of Xgeva, Currently I am on a "Lupron Vacation"

Fortunate indeed that this staggering price of $102,000 per year drug , Zytiga, is covered by my Insurance for the most part, aside from my out of pocket $4,000 and monthly $200 payment for the policy. Fortunate that I am working , and my employer pays the other part of my cost. My heart goes out to those that are unemployed and/or do not have Insurance.

I know the pain of not having any Insurance when I was unemployed, and that is how my predicament began, But aside from this and that, I have also seen the drug not be effective for my dear friend whose PSA did not drop, and he could not tolerate the side effects. I am waiting patiently for the clinicians to find added combinations that work for more patients and work more effectively.

In the meantime, I enjoy every PSA result, and have gotten to the point were I am confident each time to tell the Doc, before he gives me the result, "I already know the result , and it is good". I told Todd I might catchup to his monthly total of being undetectable, his is currently at 46 months. However, he correctly pointed out that he hopes I never catch up to his monthly total. I will never catch him as long his remains undetectable also, 15 months from now he will be at 61 months undetectable!. So, I stand corrected. We are both looking for that durable long lasting remission. Positive outlook is also a strong medicine. That and keeping the faith!

Wings of Eagles, aka Dan Kasper, in very warm 90 degree Hemet, So Cal

Thank you ISU-CycloneFan for starting this thread. I am posting a comment so that I get updates.

My husband is just shy of one year since diagnosis. He's had Docetaxel and is currently on Lupron + Casodex. His PSA was over 400 at DX, now down to 1.08 but I know our MO would like to see it lower. Last visit he mentioned Zytiga, so I expect we'll talk about it at our next meeting. Very encouraging news from the latest studies!

I look forward to hearing from others.

--Adrienne

I do not know the answer to your question Mr Bill. Since I use creamer I just wait the two hours before taking the medication. It seems like I have been on Zytiga for twenty-eight months. I take the prednisone and lupron as well as Zometa infusion every two months.

I have noticed over those twenty eights months that I have withdrawn a great deal from social activities. The fatigue has played a part in that, but I also have to take meds for nocturia. So sleep is sometimes hard to come by. However, most mornings I take my three dogs on a sixty to seventy minute run. My wife use to alternate days with me and she would walk them so that I could do weight training. She is noe busy with other things, so it is up to me to exercise the dogs. At 68yo I am lucky to still be able to run.

It is amazing to me that some of you are still able to work. I was a Family Therapist and there is no way that I could still be able to do that with my lupron clouded thinking. And with prednisone I have to be very careful when I become fatigued, with what comes out of my mouth. Glad to be alive, just wish that I didn't have to take all of these meds.
Michael

If we must wait two hours after food to take Zytiga then we must wait another hour before food?

Did I get that right?

That was my take on it also.

I can't thank you enough for starting this thread. We just found that Paul's cancer is on the move and he is officially castrate resistant with his 4th rise in PSA. Soon as he stopped the taxotere it started to creep up again. Although it is still only 0.33 it may as well be 3300 in his mind. The innumerable mets returned to his lungs with some at .7 cm and those are all new. More lymph nodes, too...

So I had a talk with Med Onc on Friday- she said think about Zytiga or Xtandi next and will meet with her NP next week probably as the onc is going on vacation.

Todd- I am interested in your Provenge before Zytiga.... How did you get that approved? My understanding is that it was for afterwards... I remember reading your plight and fight- was it for that? We may be dealing with the same insurance and issues.

Best to you all!