Success on prostate after it spreads to bones.

[Edbl]

Can anyone give me some insight and stories on hanging in there after prostate cancer spreads to spine- ribs - neck - etc.

[RyderLake2]

Hang in there brother and keep battling! My PSA was just under 1700 at diagnosis with extensive bone mets. I lit the scan up like a Christmas tree. That was in May, 2013 and I am still here over five years and eight months later. So lucky. For the last eighteen months my PSA has been almost undetectable at less than 0.008! Currently on Zoladex (Goserelin), Xtandi (Enzalutamide), and Prolia (Denosumab) plus Vitamin D and Calcium/Manganese for bone strength. Get a good oncologist who you trust and read as much as you can about this disease. This site is a very good place to start.

[joancarles in reply to RyderLake2]

It would be very interesting to know your success story with this disease.

[RyderLake2 in reply to joancarles]

Not much more to add. Diagnosed on May 30, 2013 (wife’s birthday). PSA 1695, Gleason 8 (4x4), extensive bone mets (neck to knees). My radiation oncologist immediately put me on Zoladex (goserelin) and my PSA elevator went down as fast as it went up. Oncologist added Prolia (denosumab) for bone strength.I have been on the Zoladex train ever since, except for about six months when I tried Firmagon.

In August, 2017 my PSA started creeping up so my medical oncologist suggested Xtandi (enzalutamide) because of a very good reaction to Casodex (bi-calutamide) many months earlier. PSA dropped to less than 0.008 (undetectable). It has, touch wood, stayed there for the last eighteen months. Still on the Zoladex train! I was switched from a radiation oncologist to a medical oncologist when I became castrate resistant. Hope that helps.

[Cheerr in reply to RyderLake2]

Hi RyderLake2,

Wish you success in your on-going treatments.

I just want to confirm you were put on Harmone Therapy via Zoladex for 4 years and then since 2017 to now -> you started taking Xtandi along with Zoladex.

Have you never undergone a Chemotherapy ?

P.S - My dad recently got diagnosed with bit of a similar condition as yours was when you were diagnosed, so just researching for the best approach. Wanted to know if we could avoid chemotherapy (One of my MO tells me to avoid Chemo till the very end).

Thanks,

Cher

[RyderLake2 in reply to Cheerr]

Hi Cher,

That is correct. I have never been on chemotherapy, preferring to keep that in reserve until all other treatments fail. When the Xtandi (enzalutamide) fails which I know it inevitably will, my plan is to try Lutetium (possibly by flying to Germany).

[Tall_Allen]

What therapies have you tried so far?

[Edbl]

Had the radiation seeds in 2012

Lupron last 3 years

Zytiga / predisone just last week

At start Gleason was a 7

PSA was .9 8/18 and went to 13 in 3 months.

Bone scan was clear in 1/1/2017

12/18 scan showed it spread to ribs - spine - shoulders - pelvic.

[Break60 in reply to Edbl]

All I can say (not having high volume bone mets) is that I’m on xgeva , have had SBRT to bone nets, and am on trelstar, metformin, rosuvastatin, celecoxib and estradiol patches. My Psa is down to .4

[larry_dammit]

Diagnosed August of 16 with Mets on spine,ribs and lymph nodes at age 66. Casadex and prednisone for 2 weeks, the started chemo taxotere for 6 rounds with a Neulasta shot the next day, Also did lupron and Xgeva shots monthly. Lost my hair, muscle mass ,had and have brain fog. But getting better, I go in monthly for blood tests and PSA. PSA is running <0.05 since chemo finished. Hope this is what info you are looking for. Good luck with the monster 🙏🙏🙏🙏😡

[larry_dammit]

Forgot to add that since the chemo stopped I have been on Xtandi pills 4 a day

[EdBar]

I was dx in March 2014, G9, mets to spine, pelvis, ribs, sternum, shoulder blade along with several nodes. Im taking Lupron, casodex - switched to Xtandi, Avodart, Metformin. Had prostate and several nodes radiated using IMRT back in 2014, and later had chemo per CHAARTED in 2015. Currently PSA is undetectable at <.006.

Get with a good onco who specializes in PCa, good luck!

Ed

[Jackpine]

Ed last,

You’ll find many stories of hope and long life with this disease. I know last summer my scans showed bone Mets from my skull to my feet and PSA tripling every 3-4 weeks.

After 3 injections of LU177 PSMA as part of a trial my PSA has dropped from 110 to <1. With scans showing no new Mets and resolution of most existing Mets.

Look at all treatment options as some work great for some people and not for others.

Hang in there and stay positive.

[TommyTV]

Still here after 7 years. Abiraterone and Zoladex from diagnosis. PSA 571 and seven major bone Mets at dx. PSA still immeasurable after all these years😀

[RonL]

DX February 2013 PSA 67 and Gleason 9 (4+5). Initial treatment was radiation and two years of ADT (Eligard). After a year off ADT my PSA started to rise and I was back on Eligard. April 2017 PSA began rising again and scans revealed metastasis in two ribs, the base of my skull and one scapular. I started Zytiga and my PSA went to undetectable after a couple of months. I also was put on Xgeva.

[carterdon]

I was diagnosed with Stage 4 Metastatic Prostate cancer in Oct 2013. My Oncologist found cancer in my prostate, lungs, lymph nodes, pelvis, and spine. I was scared. On the other hand, my Oncologist was positive. Within the same week as the diagnosis, I was in Chemo with docetaxel-Taxotere. This lasted for six difficult sessions or six weeks. Concurrently, with the Chemo, I was also on heavy weekly doses of Degarelix (Firmagon) for the first month then monthly Lupron Depot for 2 years and presently quarterly. Again, Concurrently with Chemo and the Hormone drugs, I was on Xgeva monthly for two years and now quarterly. Since the first day of my diagnosis, I take daily Lisinopril, Atvorstatin, and Caltrate.

Today, at 71 years old, my PSA is .06, and the latest Scans show no signs of cancer in the lungs, lymph nodes, pelvis, and spine. My prostate is back at a normal size. My quarterly treatment slows me down for a week or two - otherwise I feel healthy. I found through all of these years that staying really busy and active helps a ton. If I ever laid back, even for half a day, I would feel worse.

What do I believe is the reason I am still here? It must be because of a Positive Doctor, Positive Family, Personal Attitude, the Concurrent Treatment plan and my faith in God. Hope this helps - Stay positive and active!

[strummer in reply to carterdon]

Your story gives me hope for my husband. Continued good health!

[poofers]

I was dx'd in 2014 at 55 years old with a psa of 209 and bone mets to boot. I have been on monthly shot of Firmagon and daily 50 g of Casodex. 4 + years later, I am still on the same meds and still undetectable <0.02 and feel like a million dollars, most of the time.

Hang in there because you aren't going anywhere any time soon