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[MarcoGlenn]

Hi I am new to this page I am 49 years old and battling Advanced Prostate cancer. I was diagnosed about 2.5 years ago. I had a biopsy on a lymph node in my neck. My original PSA was 1,882, the cancer was in my lymph system and most all my bones. I did chemo and Provenge. I am on casodex. My PSA is now at .07 and my testosterone is at 2. My last PETSCAN showed that the cancer is not growing. I am looking for advice from people on what I can expect and also how is the best way to fight this.

[ctarleton]

Hi Marco,

Glad to hear you are doing so well on your treatments so far.

I started with a PSA of 5,006 at age 65 with lots of bone and lymph node mets, too. I've had Provenge, but not yet Chemo. I've been on Lupron for 4.5 years and Enzalutamide for 1.5 years. PSA roller coaster went from 5,006 to 1.0 to 95 to 1.2, and was recently 1.9.

With bone mets you might ask about either Zometa or Xgeva. You might also ask about some inherited genetics testing to test for things like BRCA 1 or 2 mutations, which might suggest a PARP inhibitor in your treatment future. And, it sounds like either Abiraterone Acetate (Zytiga) or Enzalutamide (Xtandi) might be in your future treatment options discussions, along with other treatments or clinical trials.

I recommend getting to the best advanced specialists that you can find as a general rule.

A good support system for both you and your caregiver(s) is very helpful, too. Some Support Groups are good for this.

The various side effects and quality of life things that come with various treatments are things you will continue to learn to accommodate into your new reality. Everyone has up days and down days. Talking about them helps. Hugs given and received help, too.

I've found that keeping some balance between my "cancer thoughts" and technical/medical thoughts and all the rest of my life that occurs in the Present Moment often helps. Ruminating on the shoulda/woulda/coulda things of the Past only goes so far, and usually does not feel good, anyway. Fearful anxiety about a largely unknowable Future is often only painful, too. The emotions and tears and fears are OK to feel and share in the moment, but, in my experience, they do pass after a while.

I like it when I feel I can seem to choose whether this day I am "living" or "dying" mentally or emotionally. I like it when I realize some of the gratefulness I've felt for the opportunities to change my life in ways that are clearer or better since I was diagnosed with ultimately incurable Stage IV cancer. I may not be Cured of my disease, and all my treatments may be more or less effective for certain periods of time, but it comforts me to think that I (and those around me) can still be Healed in many ways.

Just some thoughts,

Charles

[dadeb in reply to ctarleton]

Some good thoughts.

[MarcoGlenn in reply to ctarleton]

Thank you so much for your kind words - they mean a lot. I am on xgeva. Was getting the shoot once a month now every 3 months. I did have the BRAC test unfortunately I did not have the correct markers. I am sorry you are having to go through this. We will keep fighting and looking for new treatments. I am going to research all you mentioned and discuss with my doctor. Keep on fighting and thanks for the very informative reply.

[MarcoGlenn in reply to ctarleton]

Sorry and I am also taking lupron shoot every 6 months.

[MarcoGlenn in reply to ctarleton]

Thank you so much for your reply n I thought I was the only person with a high PSA - you are an inspiration to me.

[Tall_Allen]

You aren't taking something like Lupron? How about Zytiga? Xofigo?

[MarcoGlenn in reply to Tall_Allen]

Sorry I left out Lupron. I have a shoot every 6 months.

[j-o-h-n]

I know this sounds Pollyannish but live your life....Don't let Pca get the better of you...

Good Luck and Good Health.

j-o-h-n Wednesday 08/01/2018 9:56 PM EDT