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[apc64]

Hello, I'am new to this group.

[JoelT]

apc64,

Tell us why you have joined our group.

Joel

[apc64]

To see how other people handle their sitation.

[maack1 in reply to apc64]

We need to know your situation in order to understand your status wherein we may have reasonable comment.

[apc64 in reply to maack1]

Stage 4 Advanced Prostate Cancer w/ malignant neoplasm, mets to the bones, tail bone, spine, hips, and a rib, liver and left lug, nodes in both arm pits. On Lupron 4 mos shot and a experimental oral drug. Diagnosed 7yrs ago Gleason 8, PSA116. Radical removal, MRSA problems. PSA dropped from 4 to .4, but the bone cancer is still spreading.

[maack1 in reply to apc64]

Hello apc64,

You mention only Lupron.  How about Xgeva/denosumab or Zometa/zoledronic acid for the several bone issues?  I would be interested in the name of the experimental oral drug.  Apparently this drug is not Zytiga/abiraterone acetate or Xtandi/enzaluatmis, since both are beyond the experimental stage.  I would think that something should be prescribed to either provide total shut down of testosterone production that would include adrenal glands and that which cancer cells can produce themselves (Zytiga), or totally block the multitude of androgen receptors on every cancer cell from testosterone access (Xtandi).  Has your testosterone level been determined recently, since it should be clinically castrate and preferably at or below 20ng/dl?  if you are experiencing bone pain from the metastasis, has targeted radiation been discussed?  Or has Xofigo/alpharadin/Radium 223 been discussed to alleviate that pain?  Just throwing these things out since I have no idea what else has been prescribed for you.  Also, if you don't mind, where and by whom are you being treated?  If you would prefer to respond to that last question privately, my email address is [e-mail]

[maack1 in reply to maack1]

Oops, miss-spelled enzalutamide

[WillyJ]

Hi apc64, I'm a lucky one. Diagnosed 9 yrs ago, had open radical. Great job by a great surgeon. No chemo, no rad., PSA holding at 0.02. Glad I didn't do robotic.

[apc64 in reply to WillyJ]

Diagnosed 7 yrs ago, Gleason 8, PSA 116, had the open radical. MRSA issues also.