Zytiga not working?: So my father had... - Advanced Prostate...

Advanced Prostate Cancer

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Zytiga not working?

chocolatelover_123 profile image

So my father had another PSA check yesterday and it’s at 0.05, when last month it was 0.04 and the month before that it was 0.03. The doctor indicated that everything is “fine” and they will have PSA check ups every 2 months now instead of every month. I’m concerned that this is a bad idea considering my dad’s PSA is gradually increasing and that zytiga will fail very soon in the near future. Any insight on what we should do? Are these small increases? Should we seek other options? My dad thinks it’s completely fine because he trusts the doctor but I’m getting a weird feeling.

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chocolatelover_123
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57 Replies
Tall_Allen profile image
Tall_Allen

Those are still very low numbers. What is causing you needless anxiety is the type of PSA test they are giving him. A conventional PSA test has the 0.1 as the lowest level. There is nothing you would do differently until the PSA gets much higher - around 2.0.

chocolatelover_123 profile image
chocolatelover_123 in reply toTall_Allen

I understand that but whats making me worried is the doubling time. What happens if in two months it rises to 0.06 or 0.07? Wouldn’t that indicate something is wrong regardless of the numbers?

Tall_Allen profile image
Tall_Allen in reply tochocolatelover_123

There is no such thing as a doubling time for PSAs below 0.1 - it is invalid. As I said, there is nothing you would do differently until the PSA reaches about 2.0 and there is evidence of new/bigger metastases on scans. Ask for a less sensitive PSA test next time.

chocolatelover_123 profile image
chocolatelover_123 in reply toTall_Allen

So in that case do we just have to wait until the PSA reaches 1 or 2 to then consider new treatment? It just doesn’t make sense to me how doubling time is not considered when PSA is under 0.1 even though it is increasing. Why not take a course of action earlier if we see it increasing?

Tall_Allen profile image
Tall_Allen in reply tochocolatelover_123

Because the statistic is worthless when the numbers are that low - they don't mean anything. You don't want to give up on a therapy while it is still working.

Relax, everything is fine. Your fathers Zytiga may be effective for years.

chocolatelover_123 profile image
chocolatelover_123 in reply to

Haha thank you, it’s the doubling time that is worrying me.

in reply tochocolatelover_123

If you double 0, it's still 0.

That's what you are looking at. It's not significant until it gets above 1 or 2, then you can start looking at doubling.

TheTopBanana profile image
TheTopBanana in reply to

Follow up-question: is it the same with the cancers that produces low PSA?

in reply tochocolatelover_123

Again, relax, have a chocolate bar or 2. Right now your father is in prostate cancer heaven. I would jump for joy if my psa increased by 0.01 in a month. If you must stress out, worry about your internet service going out for a couple of days. I go to the cancer center at the University of Michigan hospital. It is one of two centers in Michigan designated as a center of excellence cancer treatment location. The lowest they record psa wise is <0.1. In other words my psa could be 0.08 and I wouldn't know nor do they care.

chocolatelover_123 profile image
chocolatelover_123 in reply to

Yeah I completely understand that but it’s just I’ve seen from previous posts that if PSA rises consecutively it should indicate a problem. But again, all of you are way more knowledgeable than I am.

in reply tochocolatelover_123

Half knowledge is worse than total ignorance. There is no valueless information. There are incapable readers. Give you an example: Police authorities keep records of the electrical network mains frequency for forensic purposes. Mains frequency swings around it's nominal value (50 Hz in EU, 60 Hz in NA) all the time thus creating a time stamp signature. Using this database that goes at least 2 decades back they can check the authenticity of audio and video recordings look for time discontinuities or edit points and such. The information is there waiting to be exploited by the competent reader.

monte1111 profile image
monte1111 in reply to

I did not know that. I may be in real trouble.

in reply tomonte1111

Why, are you involved in any way in obscure businesses?

In case you are, next time use battery powered electronic equipment and only shoot under natural light because they can extract the signature from the in-vision flicker caused by electrical lighting and the mains hum underlying audio. They can also check the consistency of audio vs vision tracks by the same methodology.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Not to worry monte.... it's not applicable for sex offenders....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 5:02 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

Whew. What a relief. Actually, I think they give sex offenders the drugs we're taking. I'm almost sure of it.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

LOL only for the worse of the worse............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 5:51 PM DST

in reply tochocolatelover_123

In previous posts you might have seen some from people who have had prostatectomies (surgery to remove the prostate) and are looking at very low PSA levels. This is the one case where very low PSA values are significant when considering additional treatment with radiation. Decisions are typically made between PSA levels of .2 and .3, still well above the .05 levels you are talking about. But your father is NOT in this situation so his very low PSA values are not significant.

Olivia007 profile image
Olivia007 in reply tochocolatelover_123

Has he had any scans or imaging tests to show if the cancer has spread? If u haven’t maybe ask to have them done so it can calm u down. And if u had and everything is still the same and good then relax! Most likely if the doctor thinks something is going south he would already request testing. Since it seems like he hasn’t. I know how u feel I’m a daughter too and my dad is everything to me so I worry too much. Sometimes as women we worry more than men. Good luck he will be fine take care of urself too.

Repulsion caused by excesive info exposure is a characteristic of ostriches. For the human race the more data the better. I would continued monthly tests. It is in the nature of the thinking spices.

monte1111 profile image
monte1111 in reply to

It's thyme to get tested.

in reply tomonte1111

I only know thyme as being a herb that is good for an anti-cancer diet, plus my wife uses it when cooking irrespectively. If your phrase is some idiomatic expression, I acknowledge ignorance but also very keen in learning.

"I know that I know nothing" Socrates

monte1111 profile image
monte1111 in reply to

It is in the nature of the thinking spices. Love the thyme. Secret ingredient of all soups. Except Greek soups.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Greeks don't eat soup..... No soup bowls remaining.......,...... OPA!

youtube.com/watch?v=ZAh-RA6...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 5:07 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

No bowls, no plates. I guess it's a lot of finger food. (I'm laughing at myself right now.)

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Only way to eat a Gyro with Tzatziki Sauce

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:08 PM DST

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

spices or species?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 5:10 PM DST

in reply toj-o-h-n

Thanks John for shedding light on monte's αλογοπαίγνιο*.

I have a better idea regarding a video clip here:

youtube.com/watch?v=4Ccgk8P...

(*) Just checking your fluency in Greek. Google translate won't be of much help here.

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

Here is a little horseplaying around for you:

CLICK ON THE TITLE ON TOP OF THE VIDEO TO PLAY THE VIDEO:

youtube.com/watch?v=-Jj4s9I...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:03 PM DST

in reply toj-o-h-n

You are cheating!

No Google translate I wrote, didn't I?

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

Emea Hellenas....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:11 PM DST

in reply toj-o-h-n

Αλογοπαίγνιο or λογοπαίγνιο then? (pun intended)

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

play on words ....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:16 PM DST

j-o-h-n profile image
j-o-h-n in reply toj-o-h-n

Or logo

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:20 PM DST

in reply toj-o-h-n

By George you got it! Excellent!

We have de-railed more than enough this thread. Shall we call it a day.

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

Nea..... Malista.... Opa.... btw is George Greek?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:23 PM DST

in reply toj-o-h-n

Definitely YES. Haven't you heard?

ln Chania, Chalkida and Chalkidiki hurricanes hardly ever happen.

youtube.com/watch?v=gUQpoyf...

Have a nice evening. Over and out.

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

You too.... I think I'll dance all night..... BTW being in Army communications..... it is never Over and OUT. It's either over or out. Over and Out means, okay your turn to talk, I'm hanging up on you.... Sorry little trivia.....

P.S. one of my favorite films (musical)....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 6:59 PM DST

Fwest4 profile image
Fwest4 in reply to

In many cases, we tend to be on a search for pathology. Wait to see the results of your Dad’s bone scan and CT body scan. As my MO says, “Don’t worry until there is data that gives us a clear need to worry ( if you must).

Haniff profile image
Haniff

Hey chocalate_123

Take it easy. This is the time you should breathe easy like all the other brothers have advised here. And I sincerely hope you only stress us with your concerns of your Dad's PSA rising, don't stress him if he is feeling fine 😉 Give him his space and let him enjoy his good performance.

If I am not mistaken, you're from Sweden, and Sweden is a beautiful place. I've been there a few times for conferences in the past. In fact, I have cousins living in Norrkopping, Stockholm and Gothenburg. Take him to the ABBA museum and dance the day away. My wife and I certainly did...haha. It was really fun reliving our young days with ABBA.

Take good care and sing this out loud:

You can dance

You can jive

Having the time of your life

Ooh, see that girl

Watch that scene

Digging the dancing queen

🕺

Haniff

chocolatelover_123 profile image
chocolatelover_123 in reply toHaniff

Thank you for your lovely comment Haniff! We are actually from Vancouver BC, Canada. My family and I would love to go to Sweden though! One of the places on our bucket list!

Haniff profile image
Haniff in reply tochocolatelover_123

Oops

My sincere apologies, haha must have mixed you up with someone else.

My sis lives in Toronto, Mississauga. Lovely country, huge expanse of land.

Take good care and dance like you’ve never dance before...😉

❤️

Haniff

Cateydid profile image
Cateydid in reply toHaniff

Haniff: you make me smile! Thank you for your light

Haniff profile image
Haniff in reply toCateydid

😊❤️

hadleycash profile image
hadleycash

So Chocolate... perhaps my situation will provide a reference on climbing psa and treatment. Lupron has kept my psa undetectable < .01 for several years. When not on Lupron, and after it failed about six months ago, it doubled monthly. Went like this, at 4 week intervals, except 3 weeks for the 1.56; .02, .04, .09, .13, .31, .52, .96, 1.56.Not until the .96 number would the onc start me on an AR blocker, along with the Lupron. We knew I had become castrate resistant long before, but standard of care calls for around 2.0 before changing or adding a new therapy. I talked him into starting me after the .96 reading, but when the drug was approved and the order went in it was 1.56. We checked psa again in three weeks and it was down to .66. He said that response was excellent and that it normally takes 3 to six months to hit nadir. The drug is Nubeqa, one of the newer AR blockers out. I would love to have a .01 psa rise each month! Don't worry... just calmly make plans with you oncologist for what to do when. There is nothing wrong with planning now, you may feel better ing going so, then you're ready to go when the time is right. As a final note, if he hasn't gotten genetic testing, I recommend doing so. It can open up other treatment options, especially for clinical trials.

chocolatelover_123 profile image
chocolatelover_123 in reply tohadleycash

Thank you very much for the info!

wat380bjw profile image
wat380bjw in reply tohadleycash

Hadleycash, I am now Nubeqa. Just curious how long you have been on it and how you are doing with your numbers and se. Thanks

He is undetectable at <0.1. Quit worrying and listen to his medical oncologist. To stop the worrying, he might use standard PSA testing. I once asked my medical oncologist on why he only uses standard PSA. He response was needless worrying........

GD

Olivia007 profile image
Olivia007

Those numbers are great!!!! It’s still low. My dad was on zytiga for about a year and his number went up to 13 And doctors wanted to start him on chemotherapy the IV kind but my father didn’t want that so I heard and read about xtandi and begged the doctor to try that but they were skeptical they said since the zytiga failed xtandi wouldn’t work I insisted we try it and Praise God it’s working keeping his PSA low. Yes I know for a limited time possibly but every treatment only works for so long. He gets his shots as well his Lupron every 3 months and xgeva for his bone Mets.

Good luck I know as a daughter and helping my dad how scary it can be he’s lucky he has u looking and searching for help.

monte1111 profile image
monte1111 in reply toOlivia007

Chemo is not all that bad for most of us. I credit it with a big part of me still being here 3 years later. Sometimes the doctors know what they're talking about. Enjoy.

Olivia007 profile image
Olivia007 in reply tomonte1111

Hi Monte1111 that’s wonderful news for u and that it worked out great. My father is 82 and I take care of him. So every body’s body reacts differently he couldn’t handle 5 days of Radiation he was sick and hospitalized From it so I’m happy for u but like I said people can tolerate what they can tolerate. We r not all the same especially if u are older.

Thank u

monte1111 profile image
monte1111 in reply toOlivia007

U are so right. I was 66/67.

SeosamhM profile image
SeosamhM

Hey, CL123! Unfortunately, worry will not go ever go away with APCa. Since the trick is to be watchful without over-reacting or under-reacting, worry will always tell us that we are under-reacting to everything.

However, if you simply look at the numbers, your father is fine for now if he feels fine. In fact, I am in the midst of the very same situation - on Zytiga with numbers drifting (seemingly) upwards...but I'm in the 0.40 range. Even so, I have no apparent signs or symptoms of disease progression, and my scan is coming up in the next couple of months. It is this scan that is the real determiner - will it reveal "no radiographic progression"? I hope so!

I will be honest and say that I anticipate the ultimate failure of Zytiga, and then it's back to chemo for a reset and on to Xtandi, likely. But today, I'm good. And you should never feel weird about that.

Good luck to you and your father! - Joe M.

monte1111 profile image
monte1111 in reply toSeosamhM

Sounds like good planning to me.

SeosamhM profile image
SeosamhM in reply tomonte1111

youtube.com/watch?v=c1xGCWH...

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

With or without nuts?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/15/2020 5:12 PM DST

wagscure259 profile image
wagscure259

On my present regime of Lupron and Casodex my PSA recorded as less than .05 for three years now for past 4 months .05, .06, and .07 for past two months and my oncologist at Memorial Sloan Kettering in NYC and myself are not worried in the least and no change of therapy is anticipated until PSA reaches 2.0 or scans demonstrate progression. It’s not easy to avoid PSA testing anxiety but I wouldn’t worry with such low numbers. Is it possible that tests can be performed at the same time Of the day with the same levels of hydration just to keep circumstances constant? Best wishes and allow the Zytiga to control the disease

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