Looking for hope and Inspiration from your stories.

[Jordanh97]

Good afternoon everyone. I hope you’re all doing ok

The past couple of weeks havnt been so great.

Dad (60) was sent to have scans after a blood test resulted in an astronomical PSA level. (Over 1500)

The scans show a hot spot on his pelvis and two smaller ones on each shoulder blade.

He had two hormone injections 2 weeks ago (degarelix) . I plan on getting more information on treatments after his biopsy results come through. Which he had on the same day as he started his HT. I led to believe he will have this HT alongside Chemo.

I’m just hoping there are some warriors out there who can help share their story if they have been on a similar path.

Do we have any 10+ year survivors in here after stage 4 diagnosis with bone mets? It’d be great to hear some stories of inspiration which will add extra fuel to our fight.

Many thanks

Keep going everyone x

[Magnus1964]

I was diagnosed with stage 4 Pca. Mets in the lymph nodes along side the prostate. That was 29 years ago.

[Jordanh97 in reply to Magnus1964]

I doff my cap to you sir. Unbelievable. Keep on going

[RyderLake2]

Hello, I will add my two bits. I was diagnosed in 2013 with a PSA just under 1700 and extensive bone metastases from my neck to my knees. That was eight and three months ago. I am still here. Zoladex (Goserelin) brought my PSA down in a hurry. I was on Firmagon (degarelix) as well for a year. When my PSA started to climb four years ago, my oncologist recommended Xtandi (enzalutamide) be added to the Zoladex and that brought my PSA down to where it is now. It is currently 0.031. I also take Prolia (denosumab) for bone strength and to prevent a skeletal related event (SRE). Hope that helps! Find a good oncologist who you trust and keep battling. You have a long road ahead of you, so stay positive and try to learn as much as you can about this disease that we all have.

[nonm in reply to RyderLake2]

Inspiring journey + keep it rolling ! never even had any docetaxel ? nor surgery and radiation treatment to the primary tumor? Thanks in advance.

[RyderLake2]

Whoops! I meant to say eight years and three months ago. Typing too fast!

[Jordanh97 in reply to RyderLake2]

Thank you for sharing. I’m currently off work isolating due to covid so noting down every different treatment I find, looking into study’s and getting info on other people’s journeys. Yours gives me great hope and I wish you nothing but continued progress with your battle. Keep on going and thanks again.

[Wings-of-Eagles]

Diagnosed in November 2012 with stage 4, with 6 bone mets, PSA 71. Currently on 7 years of Zytiga and PSA is 0.014. My friend Todd is on his 15th year after being Diagnosed in 2006 Stage 4, bone mets, with a PSA of 3150, now his PSA is undetectable. He had Provenge and now Zytiga for almost 8 years. Looking forward to many many more years, and your Dad should too. You already has a great advocate in you!Wings aka Dan in So Cal

[Jordanh97 in reply to Wings-of-Eagles]

Wow love to hear it. Thank you for sharing those stories. Modern medicine is incredible! It just frustrates me that Zytiga won’t be an option for my father after NICE have pulled the plug to use it as a first line treatment here in the UK. It seems to work wonders. Many thanks Dan, best wishes.

[Wings-of-Eagles in reply to Jordanh97]

Jordan,That's unfortunate he cant use it as a first line therapy. The science and studies indicate early use is beneficial, and even Zytiga plus Xtanti treatments together even better for newly diagnosed patients. Maybe you could fly to another country and get some treatment , is f it's within your means.

Wings

[Hidden in reply to Wings-of-Eagles]

I am so happy for you. That is what I was hoping for, but my husband only got 14 months out of Zytiga. I hope you get another 10 years!

[nonm in reply to Wings-of-Eagles]

What a story ! it is indeed ! any treatment to the primary tumor? Big THX!

[Stoneartist]

I had a PSA of 1000 in january 2020. Some bone mets (rib, pelvis,spine) and in lymph nodes. Went immediately on ADT (Zoladex) and a course of 6 chemo sessions (Docetexel). The usual side effects - but nothing to disturb my life. After chemo the scan showed bone was regenerating itself, the lymph nodes were back to normal. PSA is now down to 1.15 and still slowly falling. I feel great and am fully prepared for many years in the future alongside a dormant (hopefully) PCa.

So my experience says - dont be afraid - tackle the beast head on - and go for ADT plus chemo if that is what your doctor advises. Also read all the stuff that folks on this site post - a veritable mine of PCa knowledge and experience.

[Yank66]

Not 10 years yet, but planning on it! 8 + years here with positive lymph nodes at diagnosis. Bone Mets in vertebrae were discovered two years ago. Just starting Lynparza in addition to Lupron after Provenge and then Xtandi. We take inspiration from others on this forum. New treatments are being researched and developed all the time. Gives us hope-hope you can feel it, too.

[larry_dammit]

As my oncologist said no one wants cancer but there has never been a better time to have it with all the advanced meds out there. Stage 4 here with Mets in ribs,back and hip. Diagnosed August of 16, so next month will make 5 years. Doctor has another patient that is on 11 years. So never know, keep up the faith and never give up 🙏🙏🙏🙏

[Woodstock82]

I was diagnosed two years ago at age 55, with a ridiculously high PSA (11,201.69 ng/ml), stage IVb with mets in a lot of lymph nodes, two-thirds of my vertebrae, my sternum, one rib, and one on the top of my skull. I was advised "treatable but not curable" and "surgery not an option" and "radiation not an option." Went straight to ADT (Lupron) and chemo (docetaxel), and have seen good results. PSA nadir was 1.54 ng/ml. After seven months it had doubled, whereupon I was classified as castrate resistant and started oral ADT (abiraterone) and chemo (cabazitaxel). Latest scans say the mets in the lymph nodes are much reduced and the bone mets are stable. "Stable mets" and "no new mets" are the best I can hope for, for as long as possible. PSA has been holding at 0.05 ng/ml since March. I hope it stays down there for a good long while. I am hoping that 177Lu-PSMA will be available to me by the time my PSA starts to rise again. Hang in there. It's a marathon, not a sprint.

[Jordanh97 in reply to Woodstock82]

Thank you for sharing. Some really helpful info there Best of luck for the future.