Next steps?

[Bigpike]

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

Current meds:

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

Xgeva

Current supplements:

Calcium citrate 1500 mg day

Centerm Silver vitamin

Vitamin D3 (8,000 IU)

Ginseng root

Fish Oil

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.

[Dan59]

Good Job on getting that psa down, Normally zytiga would not be started till psa rises, not sure on parameters of newer more recent trials on early zytiga. You have many meds you can do other than chemo, and I agree with current bone marrow suppression and low counts chemo would not be suggested. I presented as Gleason 10 with psa 148( just 1 above yours) in 2006, you can read my history by clicking my profile pic . I did not do chemo for the10.5 yrs after dx in 2006. I wish you the best, I am sure others will reply.

Dan

[Tall_Allen]

Zytiga was approved this year for men who are metastatic and still hormone sensitive. Here's a discussion of that and other options with links to the relevant studies:

pcnrv.blogspot.com/2017/06/...

[Schwah]

My doctor who does nothing but prostate oncology highly suggests throwing everything in at the cancer earlier while there's more of a chance to beat it. Very recent studies have shown increased survival rates of 40% when zytega is used together with lupron vs either alone. And 20% better when chemo is used with lupron vs either alone. I had 3 mets and he put me on all 3 right away. So far so good. PSA down to .05 and I feel great. After doing my own research I for one am not a fan of holding something in the bullpen for future use. Discuss with your doctor and get a second opinion from a renowned Facilty.

[YostConner]

I'd push for the Zytiga. If the answer is still no, then I'd ask the doc if he could get the through Radium 223 with my blood counts. Best to you and your wife.

[erjlg3]

Wow Bigpike! Yes a rare spot for Sarcoidosis. I sure hope it stays rare. Good catch on their behalf. I research for my husband. I have Sarcoidosis in my organs and nodes. Good wishes on your upcoming appointment. I'm glad you have such awesome love and care from the Mrs.

Most sincere,

Jackie

[Hidden]

Great job on getting your numbers down. We are now taking the path of if one modality is working stay the course. Zytega did not work for me. I am now trying Xtandi, even though they are very similar for some reason it seems to be working. My PSA has dropped from 67 in February to 47 in March. This is the way my oncologist prefers. Good luck looks like you are on the right track.