I read the post about Eric's passing and my heart sank. It gave me a view of my future if cancer has its way. His dream, to build a community that helps its fellow members, it is exactly what I have been looking for. I can't help financially, but I am willing to do my part for the cause. I'm not going down without a serious fight!
Since 2010, when I battled throat cancer, I have been a volunteer for Immerman's Angels. They are a cancer support organization that relies on pairing the newly diagnosed, through treatment, with someone who has gone through the same cancer. Wonderful organization. That training and my experience could be helpful to some in this group, including the women I see on here.
I am willing to be a sounding board to anyone. My days are pretty open and I enjoy helping others; it gives me peace. Please reach out if you want to chat. I am in California. Here are some details:
51 yo diagnosed in Nov 2014, age 48; PSA 7.5, 12/12 cores, Gleason 5+4. Invasion of seminal vesicles. Opted for radiation and HDR along with Lupron, casodex and bicalutimide. 6 mo after radiation, PSA started to rise, 5 mo doubling. Switched off Lupron to Firmagon + Xgeva; PSA fell to post-therapy 20. Now castrate resistant. Pet scan, MRI showed mets to femur (x-ray shows it was there when I was first diagnosed!), pelvis, ribs, shoulder, spine, tailbone, legs. Now mCRPCa or how Eric preferred, APC. 2 rounds of Docetaxel and Carboplatin; ended up in ICU, coma for 9 days shortly after (ARDS, sepsis, pneumonia). Stopped chemo. Levels all good. Cancer seems to be on hold. Xgeva failed (side effects), switched to Zytiga. Currently taking it, plus prednisone; Firmagon and Xgeva, 7/16. As of today cancer remains metabolically inactive.
Treatment at Stanford University, Dr. Srinivas. Also being seen at Mayo for C-11 scan every 6 mo. Next one in June 2017.
I am attending the upcoming PCRA conference in Marina del Rey, CA on March 25, 2017. Anyone else attending?
Hit me back if you want to chat. Really.