Posted 6/9/2017 7:37 PM (GMT -7)
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