I think this is the beginning of the ... - Advanced Prostate...

Advanced Prostate Cancer

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I think this is the beginning of the end.

BarronS profile image
44 Replies

A little over 9 months into my father being on zytiga and prednisone and his PSA came back today at 0.06. It has been 0.02 up until then.

I feel like this means that he may not be castrate resistant yet, but he is starting to. I messaged his doctor and requested an Aximum scan and then possibly radiate any of the spots that are present on it.

Is PSA doubling time even relevant at this point? I just know that this is not good news. Only 9 months in and having a rising PSA would put him on the short end of the stick.

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BarronS profile image
BarronS
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44 Replies
Tall_Allen profile image
Tall_Allen

Hold your horses. He should not be getting an ultrasensitive PSA. A PET scan now would be useless.

Olivia007 profile image
Olivia007 in reply toTall_Allen

U r right my dad was given axmium and it showed nothing what else or what other test should they use

Tall_Allen profile image
Tall_Allen in reply toOlivia007

He should just be getting a conventional PSA test where the lowest reading is <0.1.

Olivia007 profile image
Olivia007 in reply toTall_Allen

He is getting PSA testing but it’s slowing rising the urologist said we need to see an oncologist and stop the zytiga I just wonder other the tests. Will the oncologist give him?

Tall_Allen profile image
Tall_Allen in reply toOlivia007

I'm suggesting a different kind of PSA test - one that won't drive you crazy.

Olivia007 profile image
Olivia007 in reply toTall_Allen

There is a different kind of PSA test?

Tall_Allen profile image
Tall_Allen in reply toOlivia007

I just answered that. What did you find confusing about my answer?

BarronS profile image
BarronS in reply toOlivia007

It's a PSA test but it doesn't go below .1 or sometimes below .2 PSA. So it wouldn't detect PSAs that would be considered "undetectable".

Olivia007 profile image
Olivia007 in reply toBarronS

Thank u for explaining I didn’t know it existed Doctor never mentioned it,

Magnus1964 profile image
Magnus1964

Not necessarily, There are other ADT drugs. Having one drug fail is not the end. He can move to other ADT drugs, i.e. casodex, xtandi etc. Depending on he age and general health, he might be a candidate for radiation or chemo.

tom67inMA profile image
tom67inMA

For what it's worth, at my last visit I asked my MO about PSA values, because I knew when my latest value became available online later that day I'd freak out if it wasn't undetectable, and he had previously warned me that PSA can bounce around a bit. He said something like 4.0 would be considered a biochemical recurrence.

If he didn't have an ultra-sensitive test there would be an ongoing series of <0.1 results and you'd be happy.

shueswim profile image
shueswim in reply totom67inMA

Tom - I think your doctor meant 0.4, not 4.0.

tom67inMA profile image
tom67inMA in reply toshueswim

I'm pretty sure he said 4.0. Does the fact that I still have my prostate matter? Perhaps he knew I'd panic well below whatever number he said and multiplied it by 10? :-)

Lettuce231 profile image
Lettuce231 in reply totom67inMA

Hi Tom,

Yes 4.0 is the factor, it's written on the results received, that's the normal guide, anything above that is when they sound the alarm bells.

Regards.

Phil

BarronS profile image
BarronS in reply totom67inMA

Maybe I could ask his doc to move to a test that only detects >50 and we could all be happy for a few more months. lol

Glad you are doing well, Tom. Thanks for the kind words.

Doesn't sound like anything to worry about at this point.

tango65 profile image
tango65

Wait until a PSA trend is established.

If PSA continues going up, discuss doing imaging when PSA is around 1 (Ga 68 PSMA PET/CT has the best detection rate). If there were few metastases it could be possible to do direct treatment of the metastases and see what happens. If this is not possible, he could do chemo. Chemo could re sensitize to abi or enza. After chemo he could try enza. If there is not response there are the clinical trial with the modified niclosamide which could re sensitize the cancer to abi or enza:

clinicaltrials.gov/ct2/resu...

He could try Provenge and xofigo if there were many bone metastases without visceral metastases.

There are also the trials with Lu 177 PSMA:

clinicaltrials.gov/ct2/resu...

Perhaps a biopsy of one metastasis could be possible and they could study the genetic make up of the cancer and determine if there are mutations which could be treated with specific drugs such as keytruda, olaparib etc.

Many options for the journey.

Best of luck.

tom67inMA profile image
tom67inMA in reply totango65

Wow, that's a really good summary of the major options after Abiraterone. It doesn't even include "far out" options such as high dose testosterone that can be tried when things get really desperate.

BarronS profile image
BarronS in reply totango65

Thank you for the wealth of information.

tango65 profile image
tango65 in reply toBarronS

Best of luck on this journey, a fellow traveler.

Mathes72 profile image
Mathes72

Slow down,you have plenty of options in the future,my psa. has been all over the map in the last 8 years

larry_dammit profile image
larry_dammit

Correct me if I’m wrong, but that reading is very good , mine is usually 0.05 , once in a while it will jump up a couple of numbers, Doctor says it’s just a glitch in the test. My dad was at 340 now at 2.9 we’re very happy about that one.

BarronS profile image
BarronS in reply tolarry_dammit

I believe I read some of your posts and think that you have been stable at 0.05 for quite awhile now? Many of your bone mets have completely resolved and scans came back clean?

Father got a scan a few weeks ago and it showed mets to 3 different locations. Going to see if he can get those radiated. They all seem to have been persistent.

larry_dammit profile image
larry_dammit in reply toBarronS

Yes my PSA has been stable for some time,but the Mets have not decreased in size, they have not gotten any bigger so I guess it’s a waiting game now. 🙏🙏🙏

I was on Zytiga/Prednisone for 6 mos before my PSA started to rise from 0.12 to 0.55. Also had RP during this time. Switched to Olaparib as result of genetic testing, which identified I am BRCA2+. After 2 mos my PSA is undetectable.

I think it is definitely not the beginning of the end for your father. There are options. Keep researching and asking questions. Knowledge is power.

BarronS profile image
BarronS in reply toHopingForTheBest1

Thank you. I'm going to ask him to get genetic testing done.

HopingForTheBest1 profile image
HopingForTheBest1 in reply toBarronS

The genetic test is available directly from color.com . Reasonable cost and easy process. Simple saliva test.

Lettuce231 profile image
Lettuce231

Please don't thnk that way, my P.S.A. is at the lowest it has ever been since receiving treatment 5 years ago. It's 0.217, much higher than your Dad's and I feel fine, if it stayed that way forever I would be jumping for joy. There are plenty of different treatments left in the bag for your Dad, it could be something and nothing.

All the best.

Phil

BarronS profile image
BarronS in reply toLettuce231

Thank you for the kind words. He started this journey M1 though.

pakb profile image
pakb

My husband's has gone from just under 8 to 12, back to 8, then just over 9 to 7.5... all down from >677. Our oncologist says it just means to watch... he isn't concerned because it is moving. And sometimes down. It has been two years this month and hasn't gone below 7.5. But mets shrank and ge feels good so we are happy to live with it.

I think you need to wait for more PSA counts to really see a big picture. 💙

BarronS profile image
BarronS in reply topakb

Thank you for the information. I just fear that my father is not going to have as many options when it comes to chemo because the has system mastocytosis, which is invasion of his bone marrow with mast cells. This causes immature red and white blood cells and he has anemia.

pakb profile image
pakb in reply toBarronS

I'll be hoping for the best❤

Vitaminlover profile image
Vitaminlover

The oncologist at MSK said that after when ADT ends after 18 mths it is normal to have PSA rise and they don’t get alarmed until it is between 1 and 2.

BarronS profile image
BarronS in reply toVitaminlover

Thank you for the response but he was diagnosed M1 with 5 places of bone mets. He has only been on ADT for 9 months. PSA nadir was <0.02. First rend upwards of 0.06.

Shooter1 profile image
Shooter1 in reply toBarronS

I would cheer at 0.06. Been steady between 0.140 and 0.120 for over a year.

Pierreb profile image
Pierreb

Hi BaronS, I agree with everyone else! It's beautiful that you're looking out for you Dad. Go out there and enjoy a bit of the weekend. Hopefully the weather is as nice as it is in Chicago today.

Your title header, “I think that is the beginning of the end” says it all.

You are experiencing the number one reason for patients not to have an ultra-sensitive PSA test. Panic for what is usually normal fluctuation. The point is he is undetectable with a standard <0.1.

The purpose of a PSA test once one is diagnosed with PCa is to judge the effectiveness of a treatment and to check for recurring cancer. The clinical value of ultra-sensitive PSA tests outside research laboratories is open to some question; and frequently debated as to usefulness in clinical practice. For example, a rise could simply be a calibration issue!

It boils down to any further treatment would not be considered in any event until that PSA rose above 0.1ng/ml, and even then not until that rise continued in elevation. This is the reason that my research medical oncologist does not use uPSA. And, it reduced anxiety in the patient. Besides the doubling time formula used by many were designed for tPSA (Total PSA) and not uPSA (Ultra-sensitive PSA). Isn’t commercialization of “new advances” in measurement of PSA great............ especially, in a clinical setting where many do not understand established thresh holds.

Consider this study that carries an important caveat for the use of ultrasensitive PSA tests - hopefully men will become aware of this before making any precipitate decisions based on what may not be as accurate a test as they believed:

J Urol. 2011 Oct 17. [Epub ahead of print] Poor Agreement of Prostate Specific Antigen Doubling Times Calculated Using Ultrasensitive Versus Standard Prostate Specific Antigen Values: Important Impact on Risk Assessment. Reese AC, Fradet V, Whitson JM, Davis CB, Carroll PR. SourceDepartment of Urology, UCSF Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, San Francisco, California.

Abstract

PURPOSE: In men with biochemical recurrence after radical prostatectomy, a rapid prostate specific antigen doubling time is associated with adverse outcomes, and is often used to guide the type and timing of salvage therapy. It is unknown whether prostate specific antigen doubling time calculated in the ultrasensitive range (prostate specific antigen less than 0.2 ng/ml) accurately reflects measures performed in the traditional range (prostate specific antigen greater than 0.2 ng/ml).

MATERIALS AND METHODS: We studied 394 men in a national disease registry of men with prostate cancer (CaPSURE™) who underwent radical prostatectomy, experienced biochemical failure, and had prostate specific antigen doubling time assessed using ultrasensitive and traditional prostate specific antigen values. Agreement between these measurements was assessed using Cohen's kappa score.

RESULTS: Median ultrasensitive prostate specific antigen doubling time was 11.9 months (IQR 6-29) and median traditional prostate specific antigen doubling time was 240 months (IQR 18-240). Agreement between ultrasensitive and traditional prostate specific antigen doubling time was poor, with a weighted Cohen's kappa score of 0.04 (95% CI -0.02-0.10). Using a dichotomous prostate specific antigen doubling time cutoff of 9 months, there was a statistically significant difference between ultrasensitive and standard prostate specific antigen doubling time (exact McNemar p <0.01). Ultrasensitive prostate specific antigen doubling time was more or less rapid than traditional prostate specific antigen doubling time by more than 15 months in 244 (62%) and 35 (9%) patients, respectively.

CONCLUSIONS: Agreement between prostate specific antigen doubling time calculated using ultrasensitive vs traditional prostate specific antigen values is poor. Ultrasensitive prostate specific antigen doubling time is often significantly more rapid than traditional prostate specific antigen doubling time, potentially overestimating the risk of clinical recurrence. Until the significance of ultrasensitive prostate specific antigen doubling time is better characterized, the decision to proceed with salvage therapy should not be based on prostate specific antigen doubling time calculated using ultrasensitive prostate specific antigen values. PMID:22014796 .

Me? DX’d with PCa in 2003; metastatic in 2004. I have over 120 PSA tests since 2004. I enjoy my <0.1........

Gourd Dancer

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

Barron you sound so Barren.... You know that the day we are born is "the beginning of the end".... So take a deep breath and relax for a moment because there are many more options/treatments for your Dad. Keep the faith and smile as much as you can.

Bless you both (and anyone else in your family).

BTW where are you located?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/03/2019 12:21 PM DST

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

lol Thanks, John.

We live in Pennsylvania.

monte1111 profile image
monte1111

You sure beat the 0.1 psa I've had for a while now. Starting to think the lab they are using for me doesn't go below 0.1. Last scans seemed to show extensive bone mets dormant for now, like sleeping assassins. Quite frankly, the other age related issues the scans brought up bothered me more than the prostate cancer. Doesn't bother the dr. of course. Sounds to me like everything is going your way. Enjoy.

rscic profile image
rscic

PSMA might be helpful as it is more sensitive than Axumin. The trouble in the USA is this is NOT yet FDA approved and studies often require a rising PSA with values of 1.0 to 2.0. I know Mayo Rochester, MN, UCSF & UCLA are doing PSA studies .... there are others too.

Barron nobody beat that dead horse harder than me. No test available to psa levels like your dads. If I did the test you are doing mine goes from .02 to .06 through the year. That’s why TA is telling you to use the psa test that some use that start at .1. So if you get less than .1 it shows up as 0.0.

I get mine done at md Anderson in Houston and KU Med in Kansas. MD Anderson uses the .1 so I go with them. I think the finer test just isn’t that accurate so give it a try. You are going to find that waiting on a psa test will drive you crazy and if you think these doctors have any idea what is going to happen in the future you are wrong. They tell you what studies have shown but can not relate it to an individual. Good luck

nobaday profile image
nobaday

SWITCH TO 0.5mg per day dexamethasone from prednisone, either now or if PSA continues to rise. This could give you another year on Zytiga although as others have said the PSA is still basically undetectable so trend up is not for sure!

MelaniePaul profile image
MelaniePaul

Hi there, I wouldn't worry about that just yet. Mel.

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