Poll: Who here is metastatic castrate... - Advanced Prostate...

Advanced Prostate Cancer

22,378 members28,143 posts

Poll: Who here is metastatic castrate resistant and who here is non-metastatic castrate resistant?

93 Replies

I would like to compare these two in an informal poll. Let us all know.

93 Replies
Rob1053 profile image
Rob1053

I am still non metastatic. 14 years since surgery,12 since it came back. Intermittent therapy, on Lupron

in reply toRob1053

Are you castrate resistant? I really don't know how you would be able to tell if you have no mets, I guess if your PSA goes up it's biological progression.

Rob1053 profile image
Rob1053 in reply to

No, I am not resistant yet!

RonL profile image
RonL in reply to

If you’re on ADT and your PSA continues to rise you’re castrate resistant.

Tall_Allen profile image
Tall_Allen

Non-metastatic CRPC is a rare situation. In the US, only about 3.7% of the 2-3M men living with diagnosed prostate cancer, or about 106,000 men have that diagnosis. My guess is that it would fall to close to zero if they used one of the new PET scans to diagnose it rather than a bone scan.

in reply toTall_Allen

I fail to see the logic in running a trial for such a small percentage of prostate cancer patients when so many need Apalutamide.

Tall_Allen profile image
Tall_Allen in reply to

It takes less time to prove efficacy for this group. They only had to demonstrate an improvement in metastasis-free survival, which only took 4 years (it started recruiting in 2013). They began Phase 2 trials for higher-incidence indications as early as 2010, but had to wait several years to show safety and efficacy at rPFS or OS. Their Phase 3 study for abiraterone+apalutamide in chemo-naive mCRPC began in 2014 and won't have top-line results on rPFS until the end of this year. Their study for mHSPC began in 2015 and won't have top-line results (rPFS and OS) until 2020. There are a host of other trials for other indications and for combinations with other therapies (like docetaxel).

in reply toTall_Allen

Seems to me that proving extended rPFS (radiographic progression free survival) or Overall Survival in metastatic castrate resistant PCa would take significantly less time than 4 years. I just read that the median rPFS was 16.5 months with Abiraterone (Zytiga) after CRPC compared to 8.2 months.

Are there any trials that you know of for MCRPC for either Apolutamide or Darolutamide?

Tall_Allen profile image
Tall_Allen in reply to

It takes a few years just to recruit enough people. Hopefully, by talking about the trials on sites like this, more guys will sign up for them. I mentioned the big trial of apalutamide+abiraterone for mCRPC - that creates an androgen blockade in two different ways, so I am very hopeful about it. The ARASENS trial combines darolutamide with docetaxel for mHSPC:

clinicaltrials.gov/ct2/show...

The trial for nmHSPC is supposed to have results next month.

There's a trial for it for mCRPC in Europe.

in reply toTall_Allen

ARASENS is a big disappointment, you are excluded if you've had ANY treatment at all. We all to need to write letters to these drug manufacturers and complain.

Tall_Allen profile image
Tall_Allen in reply to

ARASENS is looking at the same patient population in whom early use of docetaxel and abiraterone have shown benefit (newly diagnosed mHSPC). It's not a big patient population among heavily PSA-screened patients.

There are several other hormonals in ongoing clinical trials for mCRPC: ASN-001, AZD-3514, TAS-3681, ODM-204, TRC-253, and VT-464. Several hormonal agents were tested and found to be ineffective, and other trials have been terminated for various reasons.

in reply toTall_Allen

Thanks for all the information.

Ssullivan19706 profile image
Ssullivan19706

I am metastatic castrate resistant

JeffLikesBikes profile image
JeffLikesBikes

I am metastatic CRPC.

kjscobel profile image
kjscobel

I am metastatic castrate resistant.

Daddysdaughter profile image
Daddysdaughter

My father metastatic and castrate resist.

middlejoel profile image
middlejoel

mets, still respond to ADT

Chiquis profile image
Chiquis

My husband had Prostatectomy and Radiation, however the psa continued to rise. The Axium pet scan confirm metastasis to 2 lymph nodes in pelvic area. He is on Lupron, Zytiga, Prednisone, plus Chemotherapy PSA 0.1 for 6 months. Sorry for my ignorance but this is one topic that I get confused on. Does this mean that he is metastatic but not castrate resistant yet since he is responding to ADT? Or because he failed Prostatectomy and Radiation he's already castrate resistant? Thanks!

Castrate resistance refers to progression of the cancer while castrated or on ADT which does the same thing. It wouldn't matter if he had prostetectomy and/or radiation first. If he started Zytiga because of cancer progression (usually including a rise in PSA) while on Lupron, then he is castrate resistant. Recently, some started taking Zytiga early with ADT. In those cases, you'd only know that you are castrate resistant if you started progressing on Zytiga and ADT.

Chiquis profile image
Chiquis in reply to

Thank you so much for explaining.🖒

Chiquis profile image
Chiquis in reply to

gregg57,

I hope you are doing well.

TenscTexan profile image
TenscTexan

I am metastatic castrate resistant, I've been taking abiraterone one month.

RangerTug profile image
RangerTug

Castrate resistant and metastatic

Reptale profile image
Reptale

Metastatic castrate resistant here.

paulofaus profile image
paulofaus

I am metastatic (was at diagnosis) and now castration resistant.

JLS1 profile image
JLS1

Husband is mCRPC.

cromone profile image
cromone

I am metastatic castrate resistant, I've been taking enzalutamide for seven months.

Hazard profile image
Hazard

Primary castrate resistant (no slow down in PSA increase with either zolodex and/or casodex) and mets to liver within 6 months of starting ADT.

Chask profile image
Chask

I am currently NON Metastatic, but Castrate Resistant. Having a Ga 68 PSMA scan in a couple of days, so that may change. PSMA scan 15 months ago showed no mets BUT did show an “indeterminate” spot on my scapula, hence this latest scan - to see if that has developed. PSA recently rose from .09 to 1.7 in a month while on ADT, so Bicalutamide added and 3 weeks later PSA holding at 1.6. But MO is suspicious that things may be moving.

Metungboy profile image
Metungboy

I am neither.

I am metastatic hormone sensitive. In reality I must have a clone that is "castrate resistant"

because my PSA has never been below 5.7. despite Zoladex and docetaxel.

Max PSA was 519 at diagnosis. About to start PSMA Lutetium then probably abiraterone and pred.

auroracham profile image
auroracham

I am metastatic crpc.

Medone profile image
Medone

My P.C. is non metastatic at this stage recently I had PSMA scan .is local T4 I am planing for radical surgery ( Gleason 3+3 ) . PSA gradually increased in last 6 months from 4.5 to 6 .

Any comment ?

dress2544 profile image
dress2544

I was diagnosed in 2015 , done IGRT radiation and continuously on lupron till now. Eight months back psa started rising very rapidly (castration resistance). Gallium 68 psma pet scan revealed metastases in para aortic lymph nodes. Again IGRT radiation for the affected nodes. Now on aberaterone since last five months. I can say I have castration resistant pca with lymph node metastases.

YostConner profile image
YostConner

I’m mCRPC.

sedgley profile image
sedgley

MCRP

sedgley

westerville profile image
westerville

While on Xtandi for over a year it's starting to fail . My aggressive Gleason 4/5 doesn't show itself with PSA . My PSA at it's highest was 1.4 at surgery in 2007 . Trying to figure out what to do now with PSA rising the last 5 months . It's now 0.28 but for me that is concerning . Dattoli in Sarasota said it's to low to send me to Dr. Bravo in Sand Lake imaging in Orlando . So do I just wait for it to continue to rise until it gets to the number that the doctor thinks is right? I asked my VA oncologist about Zytiga and he said you don't want to use up all your options just yet . Wish I had Dr. Myers to ask now at this time .

in reply towesterville

I have similar concerns. My Gleason 8 produced a PSA of only 2.7 at diagnosis. After treatment it is considered non-detectable with a coarse PSA lab test that comes back undetectable for any reading below 0.1. I asked my urologist at what PSA reading would be of concern. He said 0.5. My original urologist had said 2.0, which didn't seem prudent to me. I was treated only a year and a half ago and am off ADT now. We'll see what happens. Getting PSA tested every three months.

Litlerny profile image
Litlerny

Gregg,

I’m the other option. Metastatic, hormone sensitive, still responding to ADT.

whatsinaname profile image
whatsinaname

Hi Gregg57,

I have been diagnosed about a month back as having metastatic prostate cancer. How do I determine whether I am metastatic castrate resistant or not ?? I have just started on Casodex 10 (14 days, once a day) and followed it up with Eligard 22.5 mg. injection. Next dose is Eligard 22.5 mg after 3 months.

Thanks for any help.

in reply towhatsinaname

In general, if your cancer does not respond or stops responding to primary ADT, you are castrate resistant. The response rate for primary ADT is up around 90%. It's highly unlikely that you are castrate resistant which is great for you. Resistance typically takes around 12-18 months if you have a good response to ADT.

What was your PSA at diagnosis, and have you rechecked since? You should see a dramatic drop the first month. Mine went from 463 to 12 in the first month.

Grumpyswife profile image
Grumpyswife

Husband is MCrpc.

vandy69 profile image
vandy69

Metastatic castrate resistant.

Best wishes. Never Give In.

Mark, Atlanta

ronnie1943 profile image
ronnie1943

HI. My husband is metastatic castrate resistant.

RJ-MN profile image
RJ-MN

surgery 10/2006; biochemical relapse & radiation 3/2009; metastatic 4/2010; metastatic & castrate-resistant 8/2011

DSEE profile image
DSEE

My husband has been MCRPC since last summer.

EdBar profile image
EdBar

Metastatic, hormone sensitive, still responding to triple ADT.

One more cast...

Ed

smroush profile image
smroush

Metastatic, but not castrate resistant.

charmander profile image
charmander

I am metastatic castrate resistant after dx in 2014

Bigpike profile image
Bigpike

Not at this timne

arizonablue profile image
arizonablue

Hey Gregg, I am still hormone sensitive and have been on ADT since 2008, intermittent treatment and return to ADT when psa starts to rise. Now using Zytiga instead of Casodex, I have had 2 carbon acetate scans in the past 6 years and one node was found and treated with radiation. Last Carbon Acetate scan showed no metastasis. First treated by Dr Dorff at USC, now being looked after at the Dana Faber Institute in Boston.

chascri profile image
chascri

I am mestatic and castrate resistant

ontheroad589 profile image
ontheroad589

I am metastatic castrate resistant.

GAdrummer profile image
GAdrummer

husband mCRPC for the past 6 years, nodes only disease, running out of options

Stegosaurus37 profile image
Stegosaurus37

I'm metastatic castrate-resistant and anything else that gums up the works!

KenDuchek profile image
KenDuchek

HI,im metastatic and have been on lupron since sept. 2017. psa is still .01 .lots of bone mets and 2 nodules in one lung.

David20451 profile image
David20451

Metastatic

in reply toDavid20451

Hormone sensitive still?

David20451 profile image
David20451 in reply to

Hormone resistant. Currently on Xtandi.

MC1976 profile image
MC1976

MC1976

I reckon I am metastatic castrate resistant because my PSA continued to increase from 0.03 in June 2015 to 5.7 after 3 additional Lupron 6 month injections, last one October 2016. Testosterone remained <12 ng/nl through July 2017. T of 14 ng/dl showed up in August 2017 and increased monthly 22, 66, 83. PSA increased to 13,8 in November 2017 and 23.5 in December. Had 3 month lupron injection January 4, 2018 after 440 day holiday. After 2 months PSA 20.2, T <3 ng/dl Will have another Lupron injection early April. I am 86 which may explain the drop in T from 83 ng/dl to <3 in 2 months. ADT has some effect but not to the extent it did up the middle of 2015. CT scan indicated one large lymph node but nothing else. Bone scan indicated possible metastases in the sacrum and proximal right femur. I feel well and have no pain currently.

Dad1963 profile image
Dad1963

Metastatic but not resistant.

Mbolduc profile image
Mbolduc

A lot of knowledgeable people here.

I am metastatic CRPC starting out with NO cancer in my prostate and after 4.5 years still no cancer in the prostate.

The cancer was found on the spine and lymph nodes in the groin. I went through radiation, hormone treatment and the chemo cocktail of carboplatin and Docetaxel. Biopsy of the lymph nodes was done and it proved to be prostate cancer. The highest my PSA WAS the first 2 years was a 5.0. After first chemo go around my PSA dropped to 0.04. We watched it for 6 months only to see it creep up to a 1.7. It was all about the CHANGE.

BACK on my cocktail. This time it did not work. Time to rethink treatment.

We found the cancer spread to the lymph nodes in the chest.

The next treatment was Zytiga oral chemo. PSA staying low BUT lymph nodes were growing.

Onto Xtandi oral chemo with the same results. PSA rising and lymph nodes growing one kidney shutdown.

Genetic testing done.

The next venture was with Jevtana. The PSA skyrocted. We did a CT and the cancer had now spread to the liver. That is not the direction I was looking for.

We did a MRI. I am headed to Dana Farber to see if I am candidate for a 3 phase clinical trial.

I still see death starring at the door. Not yet my friend ... not yet!

in reply toMbolduc

Good luck to you.

in reply toMbolduc

When you say "back on my cocktail" did you mean you went back to Carboplatin and Docetaxel? If so, how many cycles did you do, etc.? Also curious about what happened with the genetic testing if you got any results yet.

Mbolduc profile image
Mbolduc in reply to

I was on the "cocktail" for 2 sessions. Each session was 18 weeks. Basically every 3 week treatments. Then a break for 5 months. Then back on again.

Mbolduc profile image
Mbolduc

Prostate Ductal Adenocarcinoma

Identifiers

AT

PTEN

RET

MYC

FAS

GNAS

NOTCH2 P6fs*27

TP53 T81fs*43

in reply toMbolduc

Here's an article that covers some of the treatments available for various mutations. Scroll down the article to find the section on targeted treatments. TP53 and PTEN are on the list for sure.

sciencedirect.com/science/a...

BigRich profile image
BigRich in reply to

Thank you for the info.

Rich

Stage IV--Metastatic, castrate resistant, since at least 2014.

DenDoc profile image
DenDoc

Metastatic Castrate Resistant but I might add it took 9 + years on ADT for the resistance to show up.

timfiskwa profile image
timfiskwa

I am metastatic castrate resistant.

ewhite999 profile image
ewhite999

MCRPC

Stelle profile image
Stelle

Stelle is crm

I wouldn't imagine your doctor would want to check it more than every three months, but probably not until your radiation is done. That would be my guess. Let us know what your doctor says.

whatsinaname profile image
whatsinaname in reply to

Thanks, Gregg57. I'll get back to you at the earliest on what my doctor says.

Thanks again and best regards.

whatsinaname profile image
whatsinaname in reply to

Spoke to the doctor today after my radiation session and he told me that the optimum time to take the next PSA test would be 3 months after all the therapy had ended. In my case therapy finishes by the middle of May. So, the optimum time to take the test should be by the middle of August. The doctor was confident though that my PSA level will have dropped hugely from 13.456 levels. Lets hope for the best.

Thanks, Gregg57.

in reply towhatsinaname

I agree with your doctor. Good luck and keep us posted.

whatsinaname profile image
whatsinaname in reply to

Thanks very much, Gregg57. Much obliged to you for taking the time and trouble to write back. Thanks again. Cheers.

TenscTexan profile image
TenscTexan in reply towhatsinaname

Just checking in to see how your doing on the radiation tratments. That with hormone treatments can be a shock to the body, some more than others.

Gary94 profile image
Gary94

Metastatic castrate resistant

sgrama profile image
sgrama

My husband is metastatic castrate resistant .

RonL profile image
RonL

MCRPCa

Chuckujo profile image
Chuckujo

I am metastatic castrate resistant, currently taking abiraterone and prednisone with monthly xgeva injection.

bocuracao profile image
bocuracao

Metastatic CR

Unfortunately! Now 16 years since diagnosis and local treatment .

DSEE profile image
DSEE

Metastatic castrate resistant since summer 2017!

ewhite999 profile image
ewhite999

Mcrp

erjlg3 profile image
erjlg3

What is Elgie?

Metastatic yes. Adt yes. Psa staying undetectable...yes

Thank you.

Jackie

LisaBarness profile image
LisaBarness

My husband is metastatic castrate resistant since July. Dx in January2013 and just started Carboplatin/Doctaxel 3 weeks ago

Tjc1 profile image
Tjc1

Mcrpc since Febuary

Cateydid profile image
Cateydid

My Joe has mCRPC

Cleodman profile image
Cleodman

Metastatic castration resistant

Castration Resistant two years after Diagnosis.

Not what you're looking for?

You may also like...

Castrate resistant

How long with being castrate resistant with Mets has Zytiga or Xtandi kept your cancer at bay? Our...
Fight11 profile image

Castrate resistant?

Does anybody know if you fail Lupron or ADT drug which I think their called. Does this mean you’re...
Fight11 profile image

Castrate resistant

Is being castrate resistant treatable? If so what drugs do they usually use for treatment? Can some...
Fight11 profile image

Castrate resistant

For all those who are castrate resistant that are one Zytiga and prednisone how long did it work...
Fight11 profile image

Castrate resistant

Have any of you been castrate resistant and Xtandi or Nubeqa has worked?
Fight11 profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.