Castrate resistant : Have any of you... - Advanced Prostate...

Advanced Prostate Cancer

22,373 members28,135 posts

Castrate resistant

Fight11 profile image
21 Replies

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

Written by
Fight11 profile image
Fight11
To view profiles and participate in discussions please or .
Read more about...
21 Replies
Trivista profile image
Trivista

Good Morning Fight 11I started Nubeqa about 2 months ago.

I am castrate resistant and non metastisized, PSA was rising even though I was on another (3rd or 4th) round of Lupron.

I have a Gleason 9 so I didnt want to watch and wait as PSA climbed deom<.1 to .2 to .05 then .7, 1 and 1.07 and then 1.77. So I was lucky enough to get with Dr Taplin at Dana Farber and she prescribed Nubeqa. In 2 months I am down to .6Next appointment at DFCI is 3/29 so I should know more then.

The VA is paying the tab. I am 100% service connected out of Viet Nam.

Magnus1964 profile image
Magnus1964

If either works, your not castrate resistant.

Fight11 profile image
Fight11 in reply toMagnus1964

So in other words if your castrate resistant it won’t work ? Wonder why the MO said let’s try one or the other!

CAMPSOUPS profile image
CAMPSOUPS in reply toFight11

In my humble opinion its not relevant to look at this as whether castrate resistant or not. He has progressed under multiple treatments no matter what one wants to label the castrate situation.By now the cancer is complicated. It has mutated. It has found work arounds to various treatments.

He has not had Xtandi yet and it might do some good. The recent chemo he had might even cause the Xtandi to work better.

Wont know of course until it is tried.

Hang in there. I hope you guys get a break, some time with no progression.

If the scans show significant bone metastasis and especially if he has pain from them you might consider a new posting : Is there benefit to adding RA223 therapy to Xtandi?

However if I remember correctly his blood markers have been low due to poor bone marrow so RA 223 might be difficult.

Magnus1964 profile image
Magnus1964 in reply toFight11

Neither has been tried so no one knows. I was on zytiga for 3 1/2 years until it failed. Then went on xtandi and it worked for 4 years.

Trivista profile image
Trivista in reply toMagnus1964

Darolutamide, sold under the brand name Nubeqa, is an antiandrogen medication which is used in the treatment of non-metastatic castration-resistant prostate cancer in men. It is specifically approved to treat non-metastatic castration-resistant prostate cancer in conjunction with surgical or medical castration. Wikipedia

Magnus1964 profile image
Magnus1964 in reply toTrivista

Castrate resistant in this case is difficult to determine. Since a "failure" of treatment did not "follow" some success during the treatment, if I am reading your post correctly.

KocoPr profile image
KocoPr in reply toTrivista

I am on nubeqa and i am metatastic hormone sensitive pc, so I know it can be done

Tall_Allen profile image
Tall_Allen

Xtandi is given for metastatic castration-resistant PCa. Nubeqa is only approved for non-metastatic castration-resistant PCa.

Trivista profile image
Trivista in reply toTall_Allen

That is ny diagnosis and Daralutomide (Nubeqa) seems to be working. PSA has dropped.

bluephi profile image
bluephi in reply toTrivista

I have been on Nubeqa as well for 2 months. I am also getting Lupron shots every six months. At the start of taking Nubeqa PSA was 1.93. PSA is now .21. with no SIDE effects.

KocoPr profile image
KocoPr in reply toTall_Allen

I got nubeqa for metatastic hormone sensitive. So I know it can be done.

StePeteMN profile image
StePeteMN

Xtandi is working for a close relative of mine, elderly. The side effects are pretty tough--but it's working.

Nicnatno profile image
Nicnatno

When I was dx 5 years ago, I was immediately put on Lupron every 12 weeks and 6 rounds of chemo. My PSA reached 0.1. Fast forward 3 years later. my PSA jumped to 6.4 which is when my Onc put me on Xtandi. 2 years of Xtandi and my PSA is still undetectable. there are others here who have been on it longer. Hope that helpsNick

spw1 profile image
spw1

Our MO used to say the resistance is not a sharp line but a gradient. Even when declared resistant, some cells will get the benefit of hormone based medications. My husband's ADT alone stopped working to hold PSA back, they added Enzalutamide and when the PSA rises on that, they are trying radiation of the bone mets as of today.

SuppWife profile image
SuppWife

My husband's psa was rising rapidly, doubling about every month while on Eligard only. PSA had reached 5.9 in December. He had a pylarify scan in January with Dr. Sartor at Tulane and approximately 8 retroperitoneal lymph nodes showed positive. No other metastases were identified (no bone or liver) and Dr. Sartor put him on Nubeqa. Two months after starting Nubeqa his PSA was at 0.64. I believe my husband would be characterized as metastatic because of the retroperitoneal lymph nodes. Dr. Sartor is very pleased with the results he's getting with Nubeqa. Medicare approved the drug for him. That being said our Part D co-pay for the medication is $2400 a month. Medicare pays about $6000 and about $4000 is disallowed. Ouch.

cancerfox profile image
cancerfox in reply toSuppWife

Doesn't your insurance plan have a maximum out-of-pocket costs limit, which when exceeded the plan pays most of your prescription costs the rest of the year? Mine does, and it's $6,550.00. Mine is aptly called Catastrophic Coverage.

SuppWife profile image
SuppWife in reply tocancerfox

I hope so! This year we changed his plan from WellCare to AARP UHC Walgreens. Im pretty knowledgeable about insurance but Medicare Part D baffles me.

Trivista profile image
Trivista

It works for me. Gleason 9 post RP, post radiation, post 3 times om Lupron.PSA began to rise. Non metastatic. Began Nubeqa 1/18/22. PSA down from 1.77 to .63. It had been rising very fast after a Lupron holiday. When I started back on Lupron PSA kept steadily rising. Just back from Boston yesterday. Very pleased with the results this far.

Fight11 profile image
Fight11

We tried to get Nubeqa!! We were told that it’s not FDA approved for CRPC so insurance companies don’t approve it often so we ended up with Xtandi. Hope it works and not a lot of side effects. Heard Nubeqa is more tolerable.

ishitasen profile image
ishitasen

There is always a clonality of cells..some will be hormone sensitive...So you can still continue to have some response to Xtandi for some time

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

I want to share my husband story with you. He was diagnosed with a Gleason score of nine and a psa...
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.