Next stop Xtandi

Dear Jaxum,

We're here to support you --- sounds like we have some common threads in our story --- so I'll share the common threads that might help give you a bit of insight ---

I've been on the ADT shots, continuously, since I was diagnosed in 2013. My case was advanced upon diagnosis, so surgery wasn't presented as an option. I did pursue six rounds of chemotherapy (Taxotere) in the fall of 2014, and watched my PSA go down even lower than it had on just the ADT shots alone.

In 2015, my PSA started to rise again --- so some months after the chemo treatments, I went on ZYTIGA, and this is where our two stories begin to merge, as far as treatment paths. I've been taking ZYTIGA for over six months now, and watched my PSA creep down to its lowest level EVER ! Even lower than I had experienced while on chemo + ADT shots ! So --- I have witnessed ADT shots, and then chemo, and then ZYTIGA --- all working some small miracles, in my particular case. I'm grateful for it every single day, believe me --- and I pray daily for all my other "Battle Brothers" here on this website and all of their treatments.

Here is the part of my story that will "affirm" what you are posting about today --- after New Year's, I sat down with my primary oncologist and asked him to "map out" my future course of treatments --- ZYTIGA is working right now in my particular case, but I'm very proactive and want to keep looking ahead and down the road ---

What we discussed is EXACTLY what your doctor is now recommending to you, Jaxum --- as it stands now, I will stay on ZYTIGA for as long as possible --- we have many other members here who are on ZYTIGA. From there, my oncologist stated that we would NEXT try XTANDI --- which is right where you are in your decision-making process with your doctor --- realizing that there can be cross-resistance between ZYTIGA and XTANDI ---

From there, my oncologist stated we would then try another round of chemo treatments --- probably 10 rounds the next time --- a longer series of chemo treatments than my first round of chemo treatments in the fall of 2014. What is encouraging is that some patients are beginning to find that they can RE-TRY medications like ZYTIGA or XTANDI after chemo, and have them work yet AGAIN, in some specific cases --- there are cases reported where a round of chemo can "clean the slate", in a sense, and give previous medications another chance to have an effect, once again. Hope for all of us, right there !

Just to put your mind at ease, doctors HAVE worked diligently over time to minimize the side effects of chemotherapy treatments --- many of us here have undergone chemo treatments very recently, and some of our brothers here have just started chemo treatments --- and many of us will attest to the fact that we kept pursuing full-time careers --- and kept up with our families, friends, hobbies, interests, and social lives while going through chemo. Many here will attest to that --- just to put your mind at ease, should you undergo the chemo treatments that you were concerned about, down the road.

So --- perhaps this is affirmation to you --- some PEACE OF MIND that you are on the right track for your particular case --- your plan beginning to map my future treatment plan that was "mapped out" for me, in consultation with my oncologist. It sounds like my "next steps" and recommendations from my doctor are matching the recommendations from YOUR doctor. My best advice here ... maintain a CLOSE and TRUSTED connection with your medical team --- work on building that trusted BOND with your doctors --- share with them your thoughts and feelings --- ask those questions when you are in that consultation room with them --- they become LIFELINES of support in all of this, as medical decisions are considered.

Let us know how your "next step" goes for you, Jaxum --- I hope that XTANDI will give you some positive results --- I'll be waiting to hear how it works for you, as I will no doubt follow in your footsteps. We have many members here who are taking XTANDI --- down the road, if you undergo chemo treatments, then we have many members here who are in the "Chemo Club" and support will be found here for anyone undergoing chemo treatments, that's for sure ! Power and support of this brotherhood in action !

Keep in touch, Jaxum --- we are both fortunate to be living in a period of medical science where newer breakthrough medications are becoming readily available to us ! Five or ten years ago, these breakthrough medications like XTANDI, ZYTIGA, and XOFIGO were not available ... I give thanks for every person who has been helped by these breakthrough medications !

Sent with my best to you, Jaxum !
"Cyclone Fan" From Iowa State University

Here is a portion of a letter I received concerning Xtandi...

"My name is Zack Struver and I work for Knowledge Ecology International (http://keionline.org), a non-governmental organization in Washington, DC that works on public health issues, especially access to affordable medicines. We are working with the Union for Affordable Cancer Treatment (UACT - http://cancerunion.org), a patient advocacy group, on submitting a request to the National Institutes of Health and the Department of Defense to authorize the generic production of Xtandi, which was developed on Federal grant money from both agencies. Under the Bayh-Dole Act, both the NIH and the DoD have "march-in" rights on the drug patents because of the public funding that went into key research that supported the patents, which means that they have a royalty-free, non-exclusive license to authorize generic companies to produce the drug.

The government instead allows Astellas, a Japanese pharmaceutical company, to produce Xtandi. We will be sending a letter shortly to the government outlining the high price of the drug, especially compared to other high-income countries (it costs around $24 per pill in Australia, compared to $75 in the US), Astellas' high profits (they're projecting over $1 billion in 2016 in the US alone on just Xtandi), and the rationale for circumventing the patents on the drug."

Jaxum,
Have you looked into Provenge. It is suppose to help subsequent treatment work better. I had Provenge 4 years ago and have been on Zytiga for the past 30 months. We have similar stats regarding Gleason only I was diagnosed at stage 4.