Erleada failing?: Hi all! My father has... - Advanced Prostate...

Advanced Prostate Cancer

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Erleada failing?

ncisc001 profile image
26 Replies

Hi all!

My father has been battling PC since April 2016. To make a long story short, his prostatectomy failed. Lupron worked for about 12-15 months until he became castrate resistant in Dec. 2017. He underwent radiation which didn’t appear to work either.. in Sept. 2018 he began Erleada which was lowered his PSA from 2.3 to 0.21 (as of yesterday). His PSA 3 months ago was 0.22. I’m possibly being paranoid but considering this was the exact trend when he failed Lupron, is this the beginning signs of failure?

He receives care at Emory and I have nothing but great things to say about the clinical staff. One of the ARNPs didn’t seem to be concerned and just said see you in 3 months.

What do you all think?

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26 Replies
Magnus1964 profile image
Magnus1964

What is your father's age and general health? That would determine whether he is a candidate for chemotherapy or should start with ADT drugs i.e. casodex, zytiga, xtandi etc.

A PSA of .21 and .22 are basically the same number and a good PSA nadir. I know it's easy to get focused on numerical values, but it's best if we learn that they are just one indication. These numbers are good. It's more important to look at imaging to see if there is progression in the metastases. Has he had any imaging done? Does he have any mets?

ncisc001 profile image
ncisc001 in reply to

He’s only had BS and CTs and none have ever shown any metasteses. He’s considered nmCRPC. Thanks for your response!

in reply to ncisc001

I would relax and try to put cancer out of your mind. The point of these treatments is so we can live a normal life. They give us that opportunity so I feel like I shouldn't pass it up by thinking about what "might" happen some day. Cancer has taught me that the future is hypothetical and we have to live in the present.

Wishing the best for you and your father.

Rocketman1960 profile image
Rocketman1960 in reply to

Excellent observations Greg!

in reply to Rocketman1960

Thanks. Cancer is teaching me new things.

Rocketman1960 profile image
Rocketman1960 in reply to

Life long learners!

Biteson62 profile image
Biteson62 in reply to

100% what Gregg said!

Tall_Allen profile image
Tall_Allen

He'll fail it when he fails it. Anticipating failure just punishes you.

ncisc001 profile image
ncisc001 in reply to Tall_Allen

Thanks for putting it into perspective!

ctarleton profile image
ctarleton

My experience has been that sometimes the internal language we use makes a difference. For example, I prefer to think about a particular treatment as no longer working, for whatever reason, rather than "I failed" the treatment.

I also know first hand how overly worrying and fretting about an unknowable future can chip away at my happiness in the here and now. I've found that, for myself, getting too much down "into the weeds" of minor variation in PSA values can create undue emotional swings, either way. Many men have PSA readings that could just as easily be rounded off to the nearest tenth or whole number (or even the nearest 5 points in some very advanced cases), .... yet might not really add up to needing to either stop or start a particular treatment.

Living with the "big picture" and living with decision-making under conditions of uncertainty are things all of us here have to do. So often it isn't easy. Some days it's relatively easy for me to pull a Doris Day and sing to myself, "Que Sera Sera", and other days it's not. Oops! Sorry, .... must be the Lupron talking! Ha. Ha.

Charles

ncisc001 profile image
ncisc001 in reply to ctarleton

Thanks so much! Changed my outlook!

in reply to ctarleton

I prefer to say that the treatment has become ineffective. I think I heard that from you. :)

Rocketman1960 profile image
Rocketman1960 in reply to ctarleton

Charles, I had one blood draw where 2 different doctors requested PSA. Using the same blood the values were off 6%. Conclusion... The fidelity of the PSA test has at least a 6% fudge factor. Rate of change is far more important.

Lettuce231 profile image
Lettuce231

Hello,

Try not to fret, look at the guys on here that are still fighting after years of treatment changes and that's what we all do, fight it.

My PSA is the lowest it's ever been after 5 years of treatment about the same as your Dad's. I am happy with it and continue to look forward to my next day and every day after that.

As far as I am concerned I don't think about it unless it's necessary, every step you take is a forward movement.

Kind regards.

Phil

WXYZ123 profile image
WXYZ123

Yes to all those who are saying focus on life while you have it. All those with Advanced mPC are living their dying, all these treatments buy time. Focus on what you want to do with that time. Make it meaningful for you. If the treatment causes quality of life to suck, more time isn't worth it.

Life is a sexually transmitted terminal disease. At some point it's the best that we can do to do a good job dying and to figure out what that means to you.Until then, do a good job living.

monte1111 profile image
monte1111 in reply to WXYZ123

Life is a sexually transmitted terminal disease. Wow! Life is terminal, agreed. Life is a disease? That makes me uncomfortable. I could be flattened by a bus. Life is a series of small diseases that is eventually terminal? I protest too much, I think. Congrats. A very nice turn of a phrase. Enjoy.

Hi ncisc001. My story is nearly identical, I’ve been on Erleada since March 2018. My PSA fluctuates up and down in the range of .05 to .1. In my experience, your father is responding similarly, I think he’s doing great!

cfrees1 profile image
cfrees1

I'm on Erleada as well, and my last several PSA tests were 0.21, 0.23, 0.26 and then this past month was 0.22. So I was also wondering if the trend was toward "stopped working" but my MO kept saying that these were all basically the same reading, rounding errors he said. So I was glad to see that this month is went down slightly to confirm what he said.

dadzone43 profile image
dadzone43

I think that catastrophizing everything is not good for you or for your father. The prostatectomy "failed"? No. It removed 98% of the PCa. The Lupron "failed"? No, it worked for a year until another cell line emerged. The Erleada is about to "fail"? No, he has stable PSAs. Look we all know it is HARD to live with PCa (or breast or any other cancer) but obsessing helps no one and hurts you. Hope you can let go of the obsession. Warm hugs.

Ssiddy profile image
Ssiddy in reply to dadzone43

Wow I love this reply. This is me and I must stress my dad out so much. You have made me rethink.

dadzone43 profile image
dadzone43

We all do this. Half full / half empty. Hugs

Sxrxrnr profile image
Sxrxrnr

Research “Darolutimide” a newer Erleada lookalike for future reference. Possible fewer side effects and longer time to ultimate resistance and failure,,,must be non metastatic patient currently. Ask your treating MO about it. As of now, I agree with others posting their thoughts, what your Dad is experiencing is not atypical.

j-o-h-n profile image
j-o-h-n

You never responded to:

Magnus1964 question above: What is your father's age and general health?

Where are you located? What was you father's Gleason score? Doctor's name(s). All this information is voluntary but helps us help your father and helps us too. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/05/2019 8:06 PM DST

ncisc001 profile image
ncisc001 in reply to j-o-h-n

He is 64 and in generally, good health. He had a triple bypass at the same time he was diagnosed but his heart is doing great.

I am in Miami and fly every 3 months to Atlanta for his follow up care. He is about 80 miles NE of Atlanta. His Gleason score was 9 at biopsy and then prostatectomy pathology showed it at 8. He has all his care at Emory with Dr. Bilen because I wasn’t satisfied with any of his local oncologists.

j-o-h-n profile image
j-o-h-n

Thank you for the info, based upon your Dad's "details" he will be around for a very long long time unless the traffic in Atlanta gets him first....Tell to drive carefully so he'll be able to post here until here's 90....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/08/2019 1:58 PM DST

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