Am meeting with oncologist next week seeking opinions, guidance and wisdom from the group. I am relatively new and appreciate the insight and loving care generated by group members. Am 68 years old.
History is complicated, was in pretty good health until 2 1/2 years ago. January 2017 had severe neck and back pain was diagnosed with a tumor on the inside of my spinal cord which was determined to be Sarcoidosis (en.wikipedia.org/wiki/Sarco...), my situation was extremely rare in that it almost always manifests itself in other locations first, all scans including lungs, brain, eyes, heart have been negative. My specialist is quite adamant that this was not prostate cancer although my oncologist is not rule this out 100%, although unlikely. At one point I was unable to walk but treated with high levels of steroids have re-covered many functions and able to ambulate although I do have significant loss of feeling in my hands and feet.
Additionally during the extensive testing that was done earlier discovered I have a case of Myelodysplastic (en.wikipedia.org/wiki/Myelo...) which affects my bone marrow. This was a condition doctors were simply watching believing the concern was fairly long-term however an issue with this disorder is my blood platelet counts and red blood cell counts can be low. Oncologist doesn't want to put me into chemotherapy primarily because of a concern of my blood counts.
Diagnosed September 2017 PSA 147, Gleason 4 + 4 (4 cores) 3+4 (2 cores) 2 cores noncancerous. Bone mats both femurs, left shoulder, five ribs, jaw. Negative on organ and lymph node scans, PSA now 0.1 past 3 months.
Treatments to date:
Firmagon, then switched to Lupron
Radiation to both femurs and left shoulder
Verapamil 120 mg 1X daily (blood pressure control)
Baclofen 10 mg, .05 - 1 x daily, 20 Mg 1 x daily (Sarcoidosis treatment)
Prednisone 10 mg 1x daily (Sarcoidosis treatment)
Bicalutamide 1 50 MG daily
Calcium citrate 1500 mg day
Centerm Silver vitamin
Vitamin D3 (8,000 IU)
Magnesium 400 mg 2x
Looking for advice on questions to present to my oncologist, and suggested treatment options given my medical history. I have discussed the chemo options but the oncologist really doesn't feel he could get me through the treatments very effectively, and would only suggest the chemo when other options have failed. Additionally, have discussed adding Zytiga, one perspective is to hold back given the low PSA counts, but the other perspective is to add now. I've read some pros and cons and am inclined to press for adding Zytiga now but appreciate any and all research links given my overall circumstance.
Appreciate the care, love, and solid research that is been presented on this site. I place my trust in the good Lord Jesus but also feel strongly I need to do my part as I walked down this road. My wife is extremely supportive and is been an outstanding advocate, which is helpful, one of the doctors called her Dr. Mary because of her strong advocacy.