Castrate resistant : For all those who... - Advanced Prostate...

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Castrate resistant

Fight11 profile image
68 Replies

For all those who are castrate resistant that are one Zytiga and prednisone how long did it work for? I know each person is different. Just wondering!! Also when you initially started it did your psa come way down or did it slowly trend down? My husband is coming down a couple points every six weeks? Is this normal ?

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Fight11 profile image
Fight11
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68 Replies
Magnus1964 profile image
Magnus1964

I was on zytiga for 3 1/2 years. My PSA came down in fairly good leaps.

Fight11 profile image
Fight11 in reply toMagnus1964

Were you castrate resistant? When you say fairly good leaps how fast. His is coming down two points every six weeks

Magnus1964 profile image
Magnus1964 in reply toFight11

Castrate resistant means you have failed all ADT drugs. Zytiga was only the second ADT drug I was on. My PSA came down in quantities of 11 maybe 9 points at a time.

Fight11 profile image
Fight11 in reply toMagnus1964

My husbands is coming down so slowly hope that’s ok. It was 15.4 it came down to 13 in 6 weeks

6357axbz profile image
6357axbz in reply toFight11

In general the longer it takes to get to nadir and the lower the nadir the better the prognosis

Stevecavill profile image
Stevecavill in reply toMagnus1964

To clarify, castrate resistant means your psa continues to rise despite suppressed testosterone (such as with Lupron). So zytiga (abiraterone) being a 2nd line ADT drug, is typically for castrate resistant cancer.

Magnus1964 profile image
Magnus1964 in reply toStevecavill

Definition. Castrate-resistant prostate cancer (CRPC) is defined by disease progression despite androgen depletion therapy (ADT) and may present as either a continuous rise in serum prostate-specific antigen (PSA) levels, the progression of pre-existing disease, and/or the appearance of new metastases.

elvismlv123 profile image
elvismlv123 in reply toMagnus1964

Surgical castration removes testosterone as a hormonal agent to grow PCa. Medical castration is similar. But its reversible if done short term. Its not enough because DHT and DHEA must be suppressed as well(maybe others we dont know about)

.Castrate resistance is synonymous with the failure of ADT but in my opinion is erroneous.We are trying to prevent metastasis because its difficult to control it. So all efforts must be pursued to prevent it. Androgen Deprivation Therapy is a good way to prevent it for a very long time and maybe forever.Prednisone is a tough drug only good for short periods. Antihormones are much safer.

Fight11 profile image
Fight11 in reply toelvismlv123

What can someone use in replacement of prednisone? Lupron is not working

This question has been asked and answered many times on the forum. So that we don't have to repeat ourselves, Here are two posts. There are probably more if you search.

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healthunlocked.com/advanced...

Fight11 profile image
Fight11 in reply to

Thank you Greg I just meant at the time he took the Zytiga!! Not trying to be a pain. This is all new to me and just nervous for my husband. Sorry

Kaliber profile image
Kaliber in reply toFight11

You aren’t a pain, socializing is as vital an element of this group as any of the other stuff. Sometimes we just need to reach out and talk - communicate ...getting a little info in the process being a plus. Your husband is lucky to have such a “ involved “ wife , it’s easy to see you are deeply tied to everything happening yourself. In the scheme of things , wives are just as important as the ole man. Where would we be without our dear life mates / caregivers? Those hugs and kisses are the best medicine any time. If you need to “ talk “ or just need a little reassurance or support , hop right on and have at it . Plenty of both wives and us ( sometimes grouchy ) ole croakers will be happy to share your concerns or just plain talk if that’s what you want. 🍗🦃🦃🍗🥮💪💪💪❤️❤️❤️

Holiday hugs out to both you and the hubby

Fight11 profile image
Fight11 in reply toKaliber

Thank you so very much. Same to you 🙏🏻🙏🏻🙏🏻

Kaliber profile image
Kaliber in reply toFight11

❤️❤️❤️

Gec659 profile image
Gec659 in reply toKaliber

Nice to hear some appreciation for us partners !My man doesn’t want to talk about his condition all the time. Very hard to feel Like a nag when we’re all trying to help him thru this journey :(

Kaliber profile image
Kaliber in reply toGec659

Yayahahaha yayahahaha the wife is the hero in all this , I think you are right that they often don’t get the appreciation and recognition that they so strongly deserve. Us croakers get our butts kicked by the APCa and get to check out, our suffering relieved ... our wives struggle to care for us, they bear the heavy load of grief watching us slowly croak right in front of them and then they are left to clean up the total life upheaval , endure the sadness indefinitely and are forced to move on shouldering the responsibilities themselves. Man that’s a chit load ... wives deserve a shining bright new life and a medal for being the hero that they are.

Just say’in 💪💪💪❤️❤️❤️❤️

Fight11 profile image
Fight11 in reply toKaliber

I feel as though I’m being a pain and repetitive. I feel bad feel like I drive some of you crazy and for that I’m sorry. We are new to all this and so much to learn. When I was told my husband was Castrate resisting and that was a game changer my whole life changed. This is why I asked so many questions about it I don’t understand all of it

Kaliber profile image
Kaliber in reply toFight11

No one is a “ pain “ here ... pain here is a totally different animal yayahahahaya yayahahahaya. There are a few grumpy old croakers here for sure but it’s appropriate for them to be here and be grumpy too. Its OK for all of us unconditionally. Probably anyone on the frog train ( all 🐸 croakers ) can and will be a bit grumpy from time to time .... I know I sure am sometimes .... donworryaboutit , its no biggie. Just shine it on, it’s not personal.

Yea we all eventually face those kinda predictable , kinda inevitable , progressions in our disease .... like castrate resistance for example. Still that’s just a milestone in what can still be a very very long road .... even when we get to the “ out of options “ milestone where treatments of any kind are out of the question and we are basically in what really is a home or inpatient hospice circumstance .... still we often live on for several years before we succumb to the inevitable. There are many examples of that here on the group. Humans can be surprisingly resilient , we can go on for much longer than you’d think .... this group is the shining prime example of people beating ( those old outdated ) the odds all the time. I’m a perfect example myself ... I’m 24 months past my inpatient hospice expiration date milestone ( my first medical team diagnosis and recommendation was inpatient hospice, I was very screwed up ) and I’m still going strong ( considering ) ... I think it’s possible for me to have another 12 months , maybe even 24 or more .. skies the limit.

Don’t angst too much over those “ milestones “ , they may mean medication and or lifestyle changes but you’ve got lots of time left ahead , just make sure to try to make the most of the life extending gift those meds bring. Count your good fortune to get those extra days, months ... years with hubby . Both of you can appreciate and celebrate them together.

Just say’in 💪💪💪👍👍👍❤️❤️❤️

Kaliber profile image
Kaliber in reply toGec659

Well, sometimes it’s better not saying too much or revealing too much to wifey. It’s bad enough that she has to endure the sadness of watching us suffer so much and slowly slip away right in front of her ...... plus worry about how she is going to manage moving forward..... but sometimes they develop symptomatic mutual sickness along side of you and start suffering themselves. It’s kinda totally shocking to see your wifey -caregiver become nearly as sick as you are , sick with the same symptoms... when you know she is / or should be fine. We never want to see that happen, cripes it’s bad enough to be that sick ourselves but dragging down our caring wife is flabbergasting. Saying less and trying to pull up the big boy pants and “ acting “ less affected can be an important wise choice for the alert and caring croaker.

Just say’in ❤️❤️❤️❤️

dublin1717 profile image
dublin1717 in reply toKaliber

Thanks Kaliber. Nice to hear.How are u doing yourself?

Kaliber profile image
Kaliber in reply todublin1717

Hey I’m doing OK .... I’m one of that smallish group that gets their butts kicked by adt ... nearly crippled with all those special unpleasantries that accompany “ all that “ yayahahahaya. On the other hand it’s going on 25 months past my inpatient hospice recommendation ( that was my first treatment option recommended by my team of docs ) and I’m still here hanging in there pretty good, considering. Lots of nice unexpected time with the wifey and probably a bit more too ... it’s all good. Thanks for asking , hope things are upbeat on your end as well friend.

Best wishes 💪💪💪❤️❤️❤️

in reply toFight11

You don't have to apologize to anyone in this group. Further you have nothing to be sorry about.😊.

Kaliber profile image
Kaliber in reply to

Yea ..... what you said ...🦃🍗🦃🦃🍗👏👏👏

SPEEDYX profile image
SPEEDYX

Not resistant but Zytiga went up for 6 months from 22 to 39 now after 17 months has come down slowly to 9 averaging 2 to 4 points every every 3 months

Tall_Allen profile image
Tall_Allen

Down is good! Slowly down is especially good.

treedown profile image
treedown in reply toTall_Allen

TA is this always the case. My PSA dropped like a heavy stone and relatively fast. I calculated 99.95% in 3 months on Lupron and Zytiga.

Tall_Allen profile image
Tall_Allen in reply totreedown

Getting lower even if faster is better than a slow decline to a higher nadir. It's just a prognosis, not a rule.

Fight11 profile image
Fight11 in reply toTall_Allen

So him going at a slow trend is not good? It goes down about 2 points every 6 weeks

Tall_Allen profile image
Tall_Allen in reply toFight11

I said the opposite.

Fight11 profile image
Fight11 in reply toTall_Allen

What is nadir

onajourney profile image
onajourney in reply toFight11

The lowest point.merriam-webster.com/diction...

mklc profile image
mklc in reply toTall_Allen

Why is slowly down better than fast down?

Thank you for enlightening me.

Tall_Allen profile image
Tall_Allen in reply tomklc

My guess is that it's for the same reason that a slower decline after radiation has a better prognosis than a rapid decline, but a lower nadir is what is really good; PSA drops most sharply and consistently in more aggressive cancers because radiation kills the most rapidly dividing cells first. ADT may also kill the most rapidly dividing cells first. The higher nadir is has a worse prognoses because there are more ADT-resistant cells.

V10fanatic profile image
V10fanatic in reply toTall_Allen

I guess that I'm a glass half full PCa patient then. On both my trips down radiation/ADT lane my PSA dropped like a stone, but at least it was to a very low nadir. Ugh.

Tall_Allen profile image
Tall_Allen in reply toV10fanatic

Low is excellent!

dockam profile image
dockam

Hello, I was at a PSA of 11.7 in 01/2020 (Dx in 2015 with #stageivpca, PSA@ 840.2, GL7) and started Abiraterone in 01/2020. Monthly PSAs.

12.9

6.6

4.2

4.1

4.9

5.5

9.2

Started Xtandi last month and will have a PSA done on 11/23, fingers crossed at a PSA drop

My best to you both on your journey. Feel free to scroll thru my posts on HU

Fight on

Randy

GoBucks profile image
GoBucks

Next month will be 3 years on Zytiga. Still <0.01.

TNCanuck profile image
TNCanuck in reply toGoBucks

That's great! What treatment(s) did you receive before Zytiga?

GoBucks profile image
GoBucks in reply toTNCanuck

TNC I had RALP in summer of '17. PSA rise post-op led to discovery of bone mets. Zytiga and Lupron for 3 years now has worked. 🙏

lincolnj8 profile image
lincolnj8 in reply toGoBucks

Same results here

Fight11 profile image
Fight11 in reply toGoBucks

Are you castrate resistant. I keep asking that question because I was told that makes a big difference

GoBucks profile image
GoBucks in reply toFight11

Mano, I am not yet resistant. Initial treatment still working-next month will be 3 years.

Irun profile image
Irun

I started zytiga in January 2016 so coming up for 5 years.My initial PSA was 342, docetaxl, radiotherapy , zoladex and biclutamide got it down to 0.5 in 9 months. Then it started to rise, the doubling time was about 3 weeks ie from 0.5 to 4 in 9 weeks.

It never was allowed to get higher due to fast doubling time.

I now still have zoladex plus zytiga ( and prednisone) , my PSA was 0.12 all last year and last month dropped to 0.1.

For me, clearly, zytiga has been a wonder drug, no idea how long it wil carry on working for but I can’t complain if it stopped tomorrow .

I am 55 and the fittest I have been since my 30s, I run every day and my onco and I are convinced that this activity continues to keep the cancer surpressed.

Fight11 profile image
Fight11 in reply toIrun

Are you castrate resistant

Irun profile image
Irun in reply toFight11

No idea, never asked?

Fight11 profile image
Fight11 in reply toIrun

My husband is as I mentioned. His psa was still rising despite being on the Lupron. This is why they put him on the Zytiga

Fightinghard profile image
Fightinghard in reply toIrun

Whatever you are doing seems to be working. Keep it up! The exercise is the best thing we can do for ourselves. Helps in many ways both physical and mental.

keepinon profile image
keepinon in reply toIrun

You are not castrate resistant if your PSA does not go up while on any of the ADT drugs.

Fight11 profile image
Fight11 in reply tokeepinon

The urologist said my husbands psa was rising while on Lupron. He said that makes him castrate resistant the Oncologist said the same. I’m so confused

scooby0111 profile image
scooby0111 in reply toIrun

Hi

I am starting Zytiga tomorrow. Actually scared. Your experience gives me hope. 64 years old, in very good shape, TRX, Pilates, long walks in the woods, etc. Did you feel any different? Anything you had to do to cope/adjust?

Fight11 profile image
Fight11 in reply toscooby0111

Scooby my husband has had no side effects at all. They put him on because he is castrate resistant. Praying it helps for a long while. Praying you also get good results!!

Irun profile image
Irun in reply toscooby0111

I am 5 years older than I was when I started so can’t tell you if a bit more tiredness and joint ache is downs to the drug, age or the 10,000 miles I have run in that time.I have never really had any problems I can identify with the drug directly . The hot flushes and moons are more likely down to the zoladex. I hope that Zytiga does not change anything for the worst in your life too .

dhccpa profile image
dhccpa

Good questions.

ForJoel profile image
ForJoel

My husband has been on Zytiga / prednisone since 12/27/2018. His PSA leveled off at 7 then came down every 30 days. It is now .6He has minimal side effects. Every time he has a problem it is due something other than the Zytiga. Good luck!!

Fight11 profile image
Fight11 in reply toForJoel

Is he castrate resistant

mrscruffy profile image
mrscruffy

I have been on Lupron, Zytiga and Prednisone for 18 months. Numbers trended down somewhat slowly. It is working so well Dr. moved me from every 4 months to every six months.

Fight11 profile image
Fight11 in reply tomrscruffy

Are you castrate resisistant

mrscruffy profile image
mrscruffy in reply toFight11

Not sure what my designation is. I do however have the BRCA2 genetic disorder

konichiwa12 profile image
konichiwa12

I started Zytiga in December 2019 when PSA had risen to ~4-5. PSA dropped to around 2 but started to climb slowly. Had another PSMA when it got to 3.18 then 6.13. Found not to be working on bone met so I had SABR. Next PSA was 4.62 4 weeks after SABR to hip. Had another PSA yesterday but waiting for results.........🤞

Fight11 profile image
Fight11 in reply tokonichiwa12

Sending prayers !!! 🙏🏻🙏🏻🙏🏻 Please keep us posted

grahaminator63 profile image
grahaminator63

It was asked earlier in this thread and I didn't see an answer. What is nadir?

onajourney profile image
onajourney in reply tograhaminator63

The lowest point. merriam-webster.com/diction...

Cleodman profile image
Cleodman

Zytiga with prednisone controlled my metastatic disease for only 12 months before my PSA started to rise and 15 months before new mets started to appear on my scans. Not very long but I have always been told that I have aggressive disease. Yes my PSA dropped by over 50% during the control period. Don’t get hung up on the actual PSA number so long as the scans don’t worsen and the PSA is not climbing the treatment is helping. Also there is a lot of confusion on this forum about what castration resistant is. This is when prostate cancer continues to progress with increasing PSA only for those with localized disease in the prostate OR increasing PSA AND evidence of progression of disease on imaging such as new lymph node involvement or new bony mets. Also the person has to have failed ADT with both a GnRH analog (like Lupron/Eligard) and an androgen biosynthesis inhibitor (like Zytiga) OR failed surgical castration AND a biosynthesis inhibitor. You do not have to fail “all ADT drugs” as Magnus1964 states. He said the same thing to a post I made when I first joined this site also but this is incorrect.

cabin profile image
cabin

i was on zytiga for 8 months and it worked great, but then quit working.

Suds4me profile image
Suds4me

Did all of you folks have prostate cancer and treatments? My cancer didn’t spread and a Gleason 10 .I was treated with radiation treatments (45) ,lupron shots every 3 months and had my 4th 3 weeks ago. I am also on dutasteride and tamsulosin and my PSA has been at .01 every 3 months for the last year. Is this common after treatments?

Walter_Gould profile image
Walter_Gould

I have been on Zytiga+Prednisone and Lupron in a clinical trial at M D Anderson for 10 years with PSA undetectable. When I started on Zytiga, myPSA was 35, after a month it was 5.5, after the second month it was .5 and ever since it has been undetectable.

Turt713171 profile image
Turt713171 in reply toWalter_Gould

Great response.

taylor123 profile image
taylor123

My Dad got an extra year out of switching from prednisone to dexamethasone with abiraterone

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