Experiencing first psa increase after chemo, from <0.006 to 0.017, feeling low, looking for strength from this forum

[Soumen79]

So the dream run struck reality check. Starting @41y, March 2021 I was diagnosed with psa 189 and extensive bone mets, immediate orchitechtomy, 10 chemo and zytiga since 7th chemo, I landed on dream land of undetectable <0.006 in Nov 21, two tests later, psa increased to 0.017, doc says its negligible but very honestly i am feeling very low. After catastrophic biopsy and pet scan, this tag of undetectable psa made me delirious, but alas i know it was dream only. Here is my profile ----

At 41 started fighting with ca prostrate with bone mets

189 psa, gs 9, spread to pelvis and skeletal. 5th March 2021, I got diagnosed, got castrated March 18th, first chemo with docetaxal on 6th April - psa since then they are in ng/ml

6April21-2.26

27April21-0.465

18May21-0.213

8June21-0.15

29June21-0.074

20July21-0.113 - added abiraterone 1000 mg

10th aug21-0.05

31st aug21-0.026

28th sep21-0.008

19th oct21-0.014

16th nov21- 0.006

25th Jan <0.006

26th April 0.017

[Magnus1964]

Don't worry about those small fluctuations in your PSA. At that level they are meaningless.

[6357axbz in reply to Magnus1964]

Agreed

[Soumen79 in reply to 6357axbz]

Thank you 6357axbz, I do need this.

[Soumen79 in reply to Magnus1964]

Thank you Magnus, I do need these reassurances.

[Tall_Allen]

What is causing your sadness is the wrong PSA test. An ultrasensitive PSA test (which is what you are using) is only appropriate immediately after a prostatectomy. Ask your doctor to switch you to a conventional PSA test (lowest value 0.1 ng/ml).

[Soumen79 in reply to Tall_Allen]

Thank you TA, You advised this before, I told my doc but in my center tata medical kolkata only this ultrasensitive testing is available. Thank you so much for your reply.

[TJGuy in reply to Tall_Allen]

Tall-allen

I know your a fan of the less sensitive PSA tests.

I have read on this site and believe from you in the past you indicated that using 0.123 as an example.

That a increase in the second position to the right of the decimal point where 2 is in the example. So an increase of a total of 3 in that position over three PSA tests 3 months apart indicated reoccurance of PC. The ultrasensitive PSA Test let's you know earlier what going on by using a better tool.

So this isnt for radiation to the prostate which follows different rules. But for those without a prostate.

Now for directly after RP not on ADT if you don't reach the "old definition and still widely used of "undetectable" known as <0.1" you failed RP.

If your not on ADT had RP and if you don't reach 0.03 you are very very likely to have reoccurance and rising PSA. But after RP and not on ADT if you reach 0.03 you have a much better chance of not having reoccurance.

[Tall_Allen in reply to TJGuy]

The only use for an ultrasensitive PSA test is after prostatectomy and before salvage radiation.

prostatecancer.news/2019/09...

There are no other uses for it that have any scientific basis to it. It only causes anxiety and has no implications for treatment.

[Shooter1]

You still look good. My PSA went from 0.00 to 0.12/0.13 and stayed there for a year or so. Just reminding me that it was lurking in the back ground. Then boom. Up it went. First BCR. You should have a long way to go before you have to worry to much.... Life Is Good, worrying not so much....

[Soumen79 in reply to Shooter1]

I hope so Shoooter1, thanks!!

[Hidden]

Do yourself a favor and stop the ultra sensitive tests...... you are considered undetectable, <0.1....... I asked my MO about 12 years ago on why he did not use ultra sensitive PSA test. This Dr was a Professor and Researcher of Genitourologic cancers, he told me: first, it would not change your treatment, second, very minor fluctuations workday cause you to worry, and third, most doctors outside of research do not know how to interpret the readings. Frankly, I have dealt with over 120 PSA tests and never worried.... I have recently had three tests since January 2022..... reason is that I started injecting testosterone cypionate twice a week...... but my situation is vastly different. First DX’d with metastatic prostate cancer in 2004.

GD

[Soumen79 in reply to Hidden]

Thank you GD, these are the real life references that i wished to re-read, when i wrote this post. Thanks, all these helps.

[Hidden in reply to Soumen79]

One final thought after 18 years with initially metastatic lesions. All side effects can be managed. Once a person realizes that they have this terrible disease, side effects become moot. Driven by a hope of cure, I underwent a very rigorous chemotherapy with hormones clinical trial. With the trial came side effects; none of which sent me six feet under which was the initial alternative - two to four years; maybe five years of life. I gladly endured hair thinning, visceral fat, hot flashes, a shrunken member, cessation of a very active sex life, nausea, physically tired, and going from 185 pounds to 295 pounds.

After balancing hormones in January 2022, I have lost 4 inches in the abdomen, 3 inches in the waist, 2 inches in the thighs, and a member that has awakened and started to return to normal. I wish that all could have my results, however, the greater populace does not have that chance. There are several men in this group that are winning with atypical treatment. I applaud each for their efforts. They appear to be opening new paths for something other than standard palliative treatment.

Stay positive and shun negativity. You are a Statistic of One.

GD

[Soumen79]

Is it the case the pca men with intact prostate(no surgery or radiation) with have little 'extra' psa than the pca men with less(surgically removed, radiated) prostate?

[TJGuy in reply to Soumen79]

If you still have a prostate and had radiation to it. You have to account for a PSA bounce of up to 2.0 before you can determine that you failed radiation. So whatever your NADAR was add 2.0 to it and if you exceed that you've considered to have reoccurrence. So the tissue itself will result in a higher PSA rating, but not sure what that would be if no radiation and no bounce.

[Soumen79 in reply to TJGuy]

Hi TJGuy

I have prostate, and it is not radiated, I directly went into hormone therapy. In that case what is the baseline?

With best regards

Soumen

[EdBar]

I use an US test too and after a 6+ year run of being undetectable my PSA has become detectable again. It was a bummer at first, but honestly I knew it would happen sooner or later, metastatic PCa is never “cured”, I’m grateful for the undetectable run I had. My PSA is still extremely low, last reading was .075. The US test allowed me to qualify for Provenge treatment which I underwent this past summer. And while most don’t see a change in PSA from Provenge, my rate of increase slowed afterwards. Dr. Sartor confirmed that this does happen in some men. Knowledge of PSA being detectable again has given me the opportunity to plot future treatments when appropriate. I’m grateful for the knowledge the US test has given me, and I totally disagree with those who say not to use it, it’s like burying your head in the sand. Snuffy Myers was the first to prescribe an US test for me about 7 years ago, I’ve been using it ever since and will continue to do so.

Ed

[Soumen79 in reply to EdBar]

Thank you Edbar for this very informative reply, thanks a lot.

[TJGuy in reply to EdBar]

Do you know what criteria qualifies a patient for Provenge?

If I remember correctly back in 2019 the manufacturer of Provenge decided they wanted to jack up the price on it overnight. It went from around $100k to like $180k. Do you know what it cost now and if it's widely available?

What was the process like in receiving it?

[EdBar in reply to TJGuy]

If I recall correctly you had to be metastatic, have had previous chemo (I did in 2015 per CHAARTED), have been on enzalutamide or zytiga, and had 2 or more increases in PSA. My insurance (Medicare) covered it 100%. It is most effective when PSA is <5.0, those were the guys who experienced 14.7 months additional survival benefit.

Ed

[j-o-h-n]

Note: Reading your tests, tests you.............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/27/2022 8:00 PM DST

[Soumen79 in reply to j-o-h-n]

I am truly tested 😌