How long until you were castrate resi... - Advanced Prostate...

Advanced Prostate Cancer

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How long until you were castrate resistant?

BarronS profile image
19 Replies

Just want to know if anyone was diagnosed with metastatic prostate cancer and how long until they began to fail on ADT.

My dad is going to be coming up on 6 months of ADT at the end of April. He started with his prostate being removed and when they followed up with a scan, it showed that he had 2 small mets on ribs and 2 small mets on his back. PSA before surgery was 4.2 and after surgery it rose to 11.6. After 3 months of ADT, his PSA went below 0.02.

I see people on here that came in hot like that and have failed ADT only after 6 months. Really nervous as his has some slight pack pain. He claims that he has had lower back pain for years. He also has degenerative disc disease. After being the 3 percent who was diagnosed after metastasis, I always assume the worst case scenario is going to happen.

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BarronS profile image
BarronS
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19 Replies

My dads back pain from ADT is more like side effects. Not advancement from what we can tell. He has severe back and leg pain 6 hours of the day..... he has been on Lupron and Zytiga a year, no failure yet. .01 after 1 yr and radiation.

joeguy profile image
joeguy

20 months on firmagon and eligard after surgery is when I went castrate resistant. Now on xtandi for 4 months and psa almost undetectable

Shooter1 profile image
Shooter1

21 mo and counting . On Xtandi after taxotere and lupron until orchiectomy May 1 of 2018. PSA at 0.122. Dr says I'm in remission acct all soft tissue mets undetectable and bone mets look like scar tissue or dead bone.....new scans scheduled for June, so I'll have new worry time them. Planning to move into new hours July 1. Time will tell.

Grumpyswife profile image
Grumpyswife

My husband didn’t start ADT until he was metastatic and became CR after about a year. Adding Casodex gave him another year before starting Xtandi. He has had no bone involvement or pain from pCa in 18 years.

Everyone is different.

I was diagnosed at stage 4 with extensive mets. I got about a year out of primary ADT with early chemotherapy.

I read some stats a while back showing people who start with local treatment plus a small amount or no mets to begin with have longer times on average to castrate resistance. That's compared to guys like me that start off with high tumor burdens. Of course we are all different and we never know. I don't think it's uncommon for guys that have had local treatment to the prostate to have several years on primary ADT. This happened with my dad.

Hopefully your dad will go a long time.

BigM62 profile image
BigM62

I was diagnosed with a high tumor load. I did 10 rounds of chemo and now Lupron. It’s been exactly a year since end of chemo. Fingers crossed. I am starting to relax a bit.

BarronS, please don’t assume the worst . The Psa is falling . Now you must work on keeping it down . 3% ,that’s shocking. Finally I’m in the top of the class mom.. love him and care for him . Being positive is contagious as is

Fear and pessimism ... I haven’t predicted being castrate resistant for myself...and so far out of 4 I’m 31/2 yrs undetectable ... I’m riding the tide ... take things as they come.. Some guys have been on adt for 20 yrs or more . Anything is possible .you can tell him that many men in even worse shape than he ,have lived past bad dx and found some good along the way . Surround him with love ... good luck with dad .. it’s not pretty or without suffering. But with effort & good fortune he can push on for some time. Adt fails immediately for some .. others years. so many now to choose from , if one fails there 3 more to try next. Hope things can continue to improve .. Keep the faith ...

Mish80 profile image
Mish80 in reply to

I needed to hear this - thank you.

in reply toMish80

Mish80, check out Magnus1964.. 23 yrs and going with APC ... that’s a miracle man ..

Magnus1964 profile image
Magnus1964

I have been on a few ADT drugs and got years out of each. Each of these drugs approaches the problem in a slightly different way. So when one fails, go to the next.

Break60 profile image
Break60

I had RP in 2013, SRT in 2014, lymph node mets in 2015 and bone mets in 2017 and 2018. Hormone therapy is still working but I dropped trelstar and casodex and use estradiol patches. I’ve used metformin since 2015. Also a statin and celecoxib and xgeva .

ctarleton profile image
ctarleton

Back in November 2013 I was initially diagnosed as Very metastatic, Stage IV, and a PSA of 5,006. Bone scan lighted up like a Christmas Tree. Initial Lupron took my PSA down to a nadir of 1.0. It began to creep up at around 1.5 years. Definite "resistance" started around the two year mark. I finally added second line Xtandi about 3 years in, with a PSA of 95.0, and got a secondary PSA nadir of 1.2. I'm still here after 5 years and 4 months. Last PSA was 2.8.

I'd also say that I, personally, have never "failed" any drug or treatment. I don't find that kind of wording at all helpful for my emotions and spirit. I very much prefer to think of it simply as "Drug/Treatment X stopped being effective".... for perhaps any number of reasons, both known or unknown.

Charles

in reply toctarleton

That’s a great way to look at it. Thank you.

bluepacifica profile image
bluepacifica

My husband, stage IV, Gleason 9 or 10, mets to the tailbone and ribs, radical surgery, 7 weeks radiation, 3 years Casodex, a little over a year with Zometa infusions. He got his first Lupron shot about a month after surgery in December 2004. (Feb. 2005) His psa has been undetectable since. He's now 70. His first urologist died of prostate cancer, and 2 have retired. He's now on his third urologist, a young guy! Oh, he gets a Lupron shot every 6 months, no breaks in therapy.

DenDoc profile image
DenDoc

I made it 9+ years on Lupron before my PSA started to rise and new mets arose. Very grateful for those 9 years. Hot flashes biggest issue initially. See my history in my profile here.

Longterm101 profile image
Longterm101 in reply toDenDoc

Who did your radiation ?

DenDoc profile image
DenDoc in reply toLongterm101

My seed implants were done 23 years ago in Seattle. My radiation was done locally in Denver by Jim Jacobs, MD. Long before radiation became so sophisticated with the new technology.

Longterm101 profile image
Longterm101 in reply toDenDoc

Thx who was your MO

GP24 profile image
GP24

The duration of an ADT therapy seems to depend on the testosterone level achieved. The lower the testosterone level the longer the time to castration resistance (CR).

Klotz did a study and reports:

Testosterone below 20 ng/dL or 0.7 nmol/L: 10 years to CR.

Testosterone between 20 ng/dL and 50 ng/dL or 0.7 nmol/L and 1.7 nmol/L: 7.21 years to CR.

Testosterone above 50 ng/dL or 1.7 nmol/L: 3.62 years to CR.

ncbi.nlm.nih.gov/pubmed/257...

So check the testosterone level as well and select a drug that will allow you to reach 0.7 nmol/L.

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