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Posted 5/30/2018 1:10 PM (GMT -5)
Here is what I think I know so far, any recommendations on what I'm missing are welcome. The amount of information and data available is overwhelming (including the NCCN guidelines)

Uro and I agreed on the 6 month Lupron on 5/4/2018, MO recommends Xgeva for bone mets. Neither one recommended radiation or even wanted to refer me to the local RO. Currently we wait 3 months and check my PSA.

No side effects yet. I'm thinking with 4 bone mets I'm not a good candidate for radiation. MY current plan is to find a radiation oncologist who has experience in the treatment of prostate cancer and see what they say?
Posted 5/30/2018 1:29 PM (GMT -5)
sounds to me like you're getting the standard of care. Radiation to the prostate isn't going to help with the mets. There is a theory about "de-bulking" the index tumor, but that's beyond me.

The bone mets can get RT, but generally that is for pain reduction.

The advanced guys will be along soon with more info.

Andrew
Posted 5/30/2018 5:19 PM (GMT -5)
The following article spells out your options - basically starting docetaxel now or starting Zytiga now - they are about equally effective and have the same degree of side effects.

/pcnrv.blogspot.com/2017/06/newly-diagnosed-metastatic-m1-but-still.html

The Xgeva is not for bone mets, it prevents loss of bone density from the hormone therapy. However, if combined with Celebrex, it may extend survival.

Those therapies should shrink your bone mets and eliminate any pain they may be causing you. If they don't, spot radiation can relieve the pain. No need to see an RO yet.
Posted 5/30/2018 7:24 PM (GMT -5)
Sorry to hear the news. I want to reach out as my situation was similar in that radiation didn’t make sense after a C-11 acetate scan showed more Mets and lymph too. Just finished 6 docetaxel (aka Taxotere) treatments and will do a follow up scan in July. PSA was as high as 60 before casodex and lupron started last fall. PSA was 2.3 last month. Will check again next week.
I have several posts along with schoolpsych who has also just completed docetaxel here in SoCal, where we describe the SE s after each of our sessions. You CAN do it if you have to, and we’re here to help.
Posted 5/30/2018 7:34 PM (GMT -5)
If indeed you only have 4 bone mets, one of the newer radiation techniques (SBRT) can focus on the nets and destroy them..Will it cure your cancer? Probably not but it will sure set it back for a while..You will need to focus on the pain thing to get insurance approval for this treatment..smile smile At least talk to a RO who has experience with PC and see what he has to say..It is not unusual for RO's, Mo's and URO's not to see eye to eye with each other...But the URO is the first guy you can cross off your list...His job is done...
Posted 5/30/2018 8:47 PM (GMT -5)
Other than the fact I had my prostate removed, we are in a similar boat. Just had my 2nd shot this week and will start Xxgeva next week. On my 6th bottle of Zytiga. Whatever you end up taking I hope you join me in the zero club. Luckily I have had no pain from my bone mets. I'm doing a lot of exercise and modified my diet. I'm in the best shape of my life. Life is weird. I also stopped in my backyard tonight and smelled our roses. And lilacs too. Y'all should do that ya know?

Jim
Posted 5/30/2018 9:08 PM (GMT -5)
I don’t think anybody on a forum should guide someone else not to see an RO or any other specialists. If you want to hear on RO’s opinion insist on a referral or check with your insurance to see if you actually need one. What could be the the downside to having a consultation ? I would not want my Uro handling my treatment options when surgery is out of the picture.
Posted 6/11/2018 4:48 PM (GMT -5)

Hello HappyRick,

Just a few lines to let you know that I am thinking of you, as a fellow brother here on Healing Well.

I'm hoping that your new LUPRON shot is already at work, bringing your P.S.A. down.

Beyond that, there are other ways to attack the cancer.

Over time, I have added some other treatment approaches to the A.D.T. shots, and each treatment approach has continued to help me. My treatment history is shown below at the bottom of this post.

Just wanted to extend my very best to you ~ continue to consult closely with your medical team ~ and we're here to encourage you, as your treatments continue.

Keep posting, HappyRick! Let us know how you are faring!

With all my very best,
CYCLONE ~ Iowa State University
Posted 6/11/2018 7:07 PM (GMT -5)
Someone posted that the side-effects from either chemo or Zytiga were pretty much the same....That has not been my experience..The side-effects I experienced from Zytiga were virtually nothing compared to the major hit dished out by the chemo...Zytiga is a form of hormone therapy while chemo targets all the cancer cells, not just the hormone dependent ones..Because of its heavy side-effects, chemo was only used as a last resort for PC treatment. But today, research has shown that if it's used at the front end instead of the back end, there is an overall survival benefit....But again, quality of life issues must be considered here. Is the potential gain worth the rigors of chemo ?
Posted 6/12/2018 10:51 AM (GMT -5)
When chemo or Zytiga is used early, the side effects are similar in degree, but different in kind. Unfortunately, many patients wait until their bodies are already debilitated by the cancer before starting chemo - then the side effects are worse.
Posted 6/12/2018 12:08 PM (GMT -5)
Thanks for all the replies. My thoughts now are to go to the KU Medical Center for a second opinion and see if they are more "prostate cancer" aware and can offer the docetaxel or Zytiga options. I'm sure I could get it from the local folks but the fact that they did not bring it up at all concerns me.
Posted 6/12/2018 12:39 PM (GMT -5)
The switch from Casodex to Zytiga is almost unnoticeable. Lets face it, ADT by itself carries a heavy side-effect load....When you add chemo, either at the front end or the back end, you can expect additional side-effects like hair loss, nausea, skin breakdown, all sorts of fun things...Fortunately, most guys get through it without too much trouble..

Rick, you will learn that at this stage of your treatment, your doctors will consider any treatment ideas you come up with on your own..Many of us here have traveled to a "Center of Excellence", one of the big name cancer treatment centers and at least get a treatment plan worked out to be followed by your local Oncologist. If nothing else, this will give you some peace of mind that you are doing the best thing..
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