Advanced prostate cancer-gleason 9 wi... - Advanced Prostate...

Advanced Prostate Cancer

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Advanced prostate cancer-gleason 9 with lupron

mcom profile image

My father was diagnosed with advanced prostate cancer-gleason 9. He had a bone scan last week that revealed 3 bone mets in his pelvis and his psa is currently at a .998. Doctors were shocked about the mets because his psa is so low. They started him on Lupron and Bicutamude under the brand name Casodex. They also recommended that he get genetic testing done on the prostate tissue from when he has a radical prostatectomy last year (in March 2017). They said if it is genetic then there may be a pill he can take to fix the malfunctioning gene.

Has anyone had any experience with any of this?

21 Replies

Yes, many here have. Wishing you and your dad a warm Welcome. This is a great site to ask questions and seek information. There is a lot of support here. My father was very similar situation. Low PSA with lots of metastasis. I am not sure about what pill or treatment you are talking about. My father however did try Xtandi and failed to stop the metastasis. He then did chemo, and failed. This is only my fathers response, everyone is different. I recommend you start with a medical oncologist that specializes in urologic cancers. That can lead to to the next best treatment or test. Also browse through many of the posts on this site. You will find a wealth of information. I was so afraid when i first posted here, and now i feel so cared about and comfortable asking questions and sometimes even just venting! Sending big hugs to you and you father! Remember to make each day count!! 🙏🏻

mcom profile image
mcom in reply to Daddysdaughter

Thank you!

Very aggressive PCA can often express very little PSA...

mcom profile image
mcom in reply to spinosa

I had no idea. There is so much about it that I don't know.

AlexPaulsen profile image
AlexPaulsen in reply to spinosa

I read where the most aggressive cancers have the least PSA activity.

There is not any magic pill for a specific Gene Mutational Defect---we have drugs which do have some positive effects against only some mutations.


Yes, i did and i almost had the exact same numbers and also had three mets found recently in pelvis and rib (five years after my surgery). My doctor is a prostate oncologist and well respected as he does nothing but prostate cancer. You can look him up ( Dr Mark Scholz- written 2 books on the subject) . He recommended hitting it hard now as it is much easier to beat with your relatively low PSA and only 3 mets than if it spreads and grows further. He had me do 4 sessions of chemo and put me on Lupron and Zytega. Recent studies have shown that Lupron together with chemo was 20% more effective that either alone. Also a recent study showed that Lupron and Zytega together were 40% more effective that either alone. So if A plus B is better than A or B alone and B plus C is better than B or C alone, then A plus B plus C together should be even better, although no true study yet on all three together. Anyway I am done with the chemo and it was not that bad. I heard horrible things about the Lupron but on my doctors advise i lift weights three days a week, very hard and diligently and I feel little or no side affects other than needing Viagra for you know what. In addition I had radiation on the three mets after the chemo. No side affects from that . Only three times needed. My PSA is down to .05 which is almost undetectable. Dr.Sholz has seen long term remissions and even what he hopes is a cure in many patients using this regimen if it is started early enough. the idea is that all three together may be able to kill the cancer if it has not spread to far. We shall see. Dr. Scholz is in Marina Del Rey. For anyone out of area who wants to talk to him he does second opinions via a phone call. He is really on top of all the latest.

mcom profile image
mcom in reply to Schwah

I'm so glad that is working for you! I really appreciate the information as well!

bluephi profile image
bluephi in reply to Schwah

Can I get his number please?

Schwah profile image
Schwah in reply to bluephi

I’m so sorry. I just saw this. ‭(310) 827-7707‬ Is sholz office. But all three oncologists there are awesome if Scholz is not available


bluephi profile image
bluephi in reply to Schwah


AlexPaulsen profile image
AlexPaulsen in reply to Schwah

Great info. I might look into that. I found that heavy workouts as often as time allows is very helpful mitigating the worst of the Lupron.

Hello and welcome to this awesome group of fighters. In my fight my Doctor has put me on Zytiga,Prednisone,and ELIGARD. My Gleason score at 8&9 across the board with bone mets and lymph node. My PSA was 14 when I started the meds Feb 27th and last week my blood tests showed my PSA was 0.1 almost undetectable. I have some bone pain in the pelvis and take Xgeva shots once a month for that,other than that I feel better then I have in years. I hope this information is helpful and know that you have joined a great support group with a wealth of information. I wish you the best. Brother in arms Leo.

6 rounds of taxotere\docetaxel is suggested by oncologists, my father had bone mets at time of diagnosis with gleason score 9 , he was started with ADT and chemotherapy together. he showed very good response , it is more than 1 and half year past chemo and radiation. he had a recurrence now with psa .01 only since 1 year(no rise on recurrence), had to undergo a surgery and ADT has been changed to add Xtandi instead of bicalutamide, 6 monthly eligard still continues. There are various options , talk to a medical oncologist

caretkr profile image
caretkr in reply to caretkr

wish you all the best and good luck.

caretkr profile image
caretkr in reply to caretkr

to add my father is also getting 3 monthly doses of zoledronic acid for bone mets

Greeting. How old is your Dad and where are you located?

Great advice here....

Good Luck and Good Health.

j-o-h-n Wednesday 04/18/2018 1:30 PM EDT

mcom profile image
mcom in reply to j-o-h-n

He is 62 and we are in Pittsburgh, PA

Gleason 9 DX July 2017 PSA 4.45 Too many mets to count is what my MO says. I have had all treatments you mention. I am leaving to Europe on Saturday for three weeks. Live life, fight on, enjoy it.

Thank you for the info I will definitely pass this pass on to my dad!

Thank you,

Good Luck and Good Health.

j-o-h-n Wednesday 04/18/2018 6:43 PM EDT

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