In November 2013 I had severe lower back and left abdominal pain. After tests in hospital for 3 days I was confirmed via tests, a CT-directed biopsy of a lymph node, CT/MRI scans and a NM Bone Scan as having advanced prostate cancer, metastatic to numerous bones and lymph nodes, and a ridiculously high PSA of 5,006. I went on immediate ADT using Lupron (after a short course of Casodex to prevent a testosterone "flare"), along with monthly Zometa. My pain subsided rapidly, and my PSA dropped to below 2.0 within about 4 months. Getting the sudden news that I had an ultimately incurable disease was a big shock for both me and my wife. We spent several months just wrapping our heads and hearts around it. We started going to local support groups, and have found them highly helpful ever since. We took some practical steps to get our estate planning & health related documents in order. I have had the usual bodily side effects of ADT, but nothing I can't live with. The intense focus on my changed life and mortality has, in many ways, improved some things, and my wife and I are closer now than ever before.

Over the next two years, my PSA low point was 1.0, started creeping back up around 16 months out, dropped slightly for a short time when re-challenged with Casodex, and eventually reached around 5.0.

During the third year I consulted with other research-level doctors at a couple of West Coast U.S.A. places, and eventually had some familial DNA testing of about 50 genetic markers (all negative), had a PSMA PET scan when my PSA was passing through 60 (about 10 areas active), had 2 of 3 Provenge treatments, and, finally, with a PSA of 94.8, added Xtandi.

In the past 6 months I am still on Lupron "for life", on reduced Zometa (every 90 days), and, since adding Xtandi, my PSA has dropped from 94.8 to 3.4.

Yes, I can't do some things that I could do 3-1/2 years ago, and I have had the usual changes to my body that come with ADT, but, overall, I am very Grateful for as high a quality of life as I have had so far. I'm still working on some other areas, like Compassion, Acceptance, Forgiveness, Mindfulness, Patience, etc. I also have some times when I am anxious, fearful, or discouraged, but I find that those feelings have a way of passing in due time as "live with" them for a while. And, I attend several local area Prostate Cancer Support Groups, and try to listen and share and learn new things every month.

After 7 months on Xtandi my PSA is still declining, from approximately 95 to 1.9. I have light fatigue, comparable to the trend of already being on ADT with Lupron for over 3-1/2 years. Light exercise helps. Hot flashes are about the same. My skin is dryer. I have developed a very slight amount of Gynecomastia since starting Xtandi, but it is not a major concern for me.

I have been on Xtandi for about 13 months now. My PSA dropped from around 95 to a nadir of 1.2. As of December 2017 my PSA is 1.5. I have a constant background low level of fatigue after 49 months on Lupron and 13 months on Xtandi, but it is something I can live with at age 69. Some light exercise helps. In recent months I've had some Afib episodes with my heart, which may possibly be unrelated to my prostate cancer & treatment drugs, or not. I've been seeing specialists lately for that aspect of things. Otherwise, life is good. I have been getting positive things from participating in local face-to-face Prostate Cancer Support Groups in the region where I live.

Update as of February 2019. I added Xtandi circa December 2016 with a PSA around 95.0. PSA went back down to a new nadir of 1.2 and held below 2.0 for about a year more. After 26 months on Xtandi my PSA has started rising slowly to 3.1. Mild fatigue is my main side effect, besides the usual on-going side effects of being on Lupron for a little over 5 years. I attend several prostate cancer support groups near where I live, and also follow some on-line groups. I've seen several other men who were diagnosed later, burned through all available treatments, and have died of their disease. Considering where I started, I am humbled and grateful for the lucky biology and to be here so long with no major symptoms or pain.

Dx Nov 2013 Metastatic Prostate Cancer at Age 65
Numerous Bone Mets and Lymph Nodes, PSA 5,006
ADT Lupron + Zometa, PSA Nadir 1.0
Resistance after two years.
Short rechallenge Casodex.
Oct 2016 Provenge
Dec 2016 Start Xtandi, PSA 95
Sep 2017 Xtandi PSA Nadir 1.2
Oct 2019 Diagnosed w/Recurrent Metastatic Spindle Cell Type Melanoma
Dec 2019 PSA 5.2
Dec 2019 Surgery to remove melanoma node from neck.
Feb 2020 PSA 7.6

I had very metastatic prostate cancer for 8 years. Began with PSA 5,006. Treated with Lupron, Zometa, Provenge, and a good run on Xtandi. Latest PSA had risen to over 700.

I've had a rare type metastic melanoma for nearly 3 years. Treated with 2 neck surgeries, 14 rounds of Keytruda, and 4 rounds of double chemo Carboplatin + Taxol. Numerous side effects. Still having radiographic progression. Can barely walk.

My Specialist have no further treatment options to safely offer, taking into account my physical condition and comorbid advanced cancers. Accordingly, I recently signed-up for in-home Hospice care on 10/1/2021.

Charles's e-mail address is: cetarleton AT yahoo.com (replace "AT" with "@")