Just Diagnosed. Suggestions Please

[Brent13]

I have just been diagnosed with Advanced Prostate cancer, PSA 350.0 and several bone lesions. My question to those of you you that have been fighting this for years is- what would you do in my place knowing what you now know and maybe more importantly, what would you not do? ( I'm leaning toward an "all in strategy"). I have my first Specialist meeting this Wed. 9/19/18 in Omaha with Dr LaGrange. I have had no treatment to date. I would really appreciate any direction any of you wise experienced brotherhood could give me. Thanks, Brent

[RyderLake2]

I am not familiar with Dr. LaGrange but I had the opportunity to listen to a Dr. Luke Nordquist from Omaha . Very impressive young doctor. You definitely need to get on a Lupron type drug right away. Most oncologists want you to take Casodex (bi-calutamide) for three or four weeks to negate the effect of a testosterone surge before prescribing Lupron injections. If your doctor prescribes Firmagon (degarelix) no need for Casodex pills as the effect is immediate. Lupron or Firmagon injections should bring your PSA down in a hurry. Good luck!

[Hidden]

Two proven treatment options are: primary ADT such as Lupron with the addition of either Docetaxel or Abiraterone. You can read about these in the CHAARTED, STAMPEDE and LATITUDE trials. I was in the same situation as you are and went with the Lupron plus Docetaxel chemotherapy. I would do it again that way if I could do it over. Good luck with your treatments.

[Hidden]

Chemo. Get it over with.

[ctarleton]

With bone mets, you might also ask about either Zometa (zoledronic acid) or Xgeva (denosumab) treatments, after first getting a baseline bone density scan. ADT with either early Chemo (docetaxel) or early Zytiga (abiraterone acetate & prednisone) could also be discussed as options, depending upon other things related to your overall health and any prior sensitivies of your liver, kidneys, blood counts, etc. As someone else mentioned, Dr Luke Nordquist in Omaha comes well-recommended, and his practice also has above-average access to some clinical trials, for future consideration. Maybe think about getting a 2nd opinion there, too.

gucancer.com/about/practiti...

On the personal side, it has been my experience that going "all in" on the emotional and psychological support/caregiver side of things is just as important as most of the medical stuff. Your and your loved ones' emotions will naturally be all over the place, particular during this first year after diagnosis. It will take time and communication to experience and share those emotions and your new reality. Local face-to-face support groups can help, too. Your body and capabilities and feelings and some side effects "will" change slowly as you begin and continue ADT. Re-learning how to live your best life despite any of that is a paradoxical opportunity.

Charles

[Brent13 in reply to ctarleton]

Thanks Charles. Good information!

[Roberthale7318]

Good morning .. I was diagnosed with advanced PC in July of this year . Gleason score of 9 and mets. Since then I have been on The Lupron and for the last 27 days, Zytiga . I’ve had remarkable results in just first 20 days! Believe it or not, there’s a gift in all of this ! Everything be renewed for you as far as thoughts and considerations. It’s the perfect time to reevaluate and appreciate that is around you . All the above suggestions from your “brothers“ are welcome and valuable .

[charlesmeyers1964 in reply to Roberthale7318]

like all meds at a point it stops working. i was on zytiga and for about a year it was fine working on going back but its not dropping my psa like it use to. started a new treatment called PROVENGE its cellular treatment which means it makes your white cell fight the cancer cells at birth. its suppose to be great 3 treatments and thats it. for those with 600 and higher psa they say give a person 4 yrs more of life so i don't know with a psa of 28 i am hoping more but only god knows

[PLASTICMAN]

All suggestions, as well as yours, follow some kind of protocol which will vary somewhat according to each individual’s condition. Some procedures work on some people but not on others. I don’t know why this is. But be prepared for multiple side efects from hormone treatment and chemo. They will change your life and drain you of any energy. No testosterone, no energy! Lotsa luck!

[leo2634]

Hi Brent and welcome to the club we are all excepted to but none of us asked to join. I was diagnosed with similar numbers and my MO started me on ADT Hormone therapy from the very start

In my first month of treatments my PSA dropped to undetectable as did the testosterone. I'm not saying it's a wonder cure but it's working for me. There are some draw backs in the form of side effects but for me they were tolerable hot flashes, E D but both manageable. My meds are Zytiga,Prednisone, Eligard injection every six months , and Xgeva for bone Mets. My MO opted for this treatment while keeping chemo in the back seat if needed. I'm going into my 8th month of treatments. Leo

[Hirsch in reply to leo2634]

Great therapeutic plan...Good luck..Zytiga a miracle drug!!

[Brent13]

Thanks guys, I really do appreciate the suggestions and comments. It is both sad but encouraging to know I'm not alone.

[charlesmeyers1964]

ask him about a treatment i'm doing course my psa is only 28 after 10 yearfs look up the treatment PROVENGE if u have been taking zytiga and the lupron shots every 6 month to lower ones testosterone i have no idea.

[Tekton]

I don't know what your personal life is but if I could say only one thing; take someone with you to every appointment. You need an advocate with you, to just listen, ask questions and take notes. To travel with you even if no words are spoken. Someone to be there just for you.

I wish I had.

[leo2634]

Brent just don't give up you can still live a long life. We have all gone through the initial shock but as long as you keep a positive attitude you can give the beast a run for the money. There are new treatments being discovered everyday .

[math33]

Brent13,

I was just where you are back in 2015 after dx I had 2 second oppions.

Once I decided - started out with ADT and Xgeva, got a port placed, then 6 cycles of Taxotere. In 2016 Provenge.

Look for a clinical trial that's where the best newest meds are just pick a phase 2 or 3. Maybe some in this forum have knowledge of a promising current trial.

Once you have started treatment it might eliminate some of your choices.

- important record everything with smartphone, my doctor told me to record our visits.

[j-o-h-n]

to Brent13: Do not panic... Get the best help you can afford... You'll be around for many many years... Enjoy being with your family and your friends... Try to laugh....

Good Luck and Good Health.

j-o-h-n Tuesday 09/18/2018 6:14 PM EDT

[Mkeman]

I can’t agree more strongly on the wisdom of taking someone with you to your appointments. So much information is covered in the early stages that four ears and eyes are better than two. Also ask what Quality of Life services are available to you...counseling, nutrition, exercise and help getting drugs covered. Best wishes to you and your family.

[Bodysculpture]

Throw everything at it first time around Like the Stampede trial here in England

They start you on hormone suppressants right away

Chemo within weeks

Docataxal I found quire tolerable 6 infusions within 4.5 months

Then radical radiotherapy all within a matter of 6 months for me

I am in no pain whatsoever

I am fit and I exercise daily

My PSA when diagnosed November 2019 was 13.5

It is now 0.3 and we expect it will get even lower

I have my blood tested every 3 months and see my oncologist for a chat every 3 months so far so good

Glasson 9

Stage 4