I see many participants expressing concern over PSA management at levels less than 1.0. My journey began with a test result over 3,800 in late 2020 and never dropped below 6.0 with the various treatment regimens (docetaxel, then abiraterone, then cabazitaxel/carboplatin, lupron/zometa throughout, now Pluvicto, with some radiation in between just for spice). I'm told that normal is in the range 0-4. All of my prior treatments failed with increases every 3-4 weeks varying from slight to 10%+/- to 30%+/- increase. I had my first Pluvicto on this past October 14 and 3 weeks later PSA had risen from 220-280. My oncologist says not to worry as dead cancer cells may be releasing PSA. Are the people being treated due to increases from .1 to .3, for example, having PSA results reported on a completely different scale? I had the requisite scan for PMSA which was positive and while my entire skeleton shows mets on a super scan, there are no mets to vital organs or lymph nodes.
I'd welcome any thoughts on what's up here. By the way, this is a terrific service being performed with this site. The vast range of experiences and credible knowledge displayed among members is outstanding. Except for the docetaxel series, my own experience with side effects was minimal and I'd have to say that the side effects to me from my first cycle of Pluvicto was almost nothing at all. There was some annoying increase in neuropathy for a couple of days and slight increase in joint pain, all of which was gone in less than a week. Anyway, thank-you all for your posts.
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21cakes
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Thanks for your comment and link. Xofigo was planned to be the next treatment after the cabazitaxel/carboplatin treatment failure was clear, if Pluvicto remained unavailable. I go to the Carbone Cancer Clinic in Madison, WI. They told me that I was the first patient in the State that they treated with the formulation FDA approved earlier this Spring. Presumably, that will be among the next treatments considered, if Pluvicto also fails.
If you did not have a biopsy of the cancer, discuss doing a liquid biopsy. With your PSA and bone mets most probable they will obtain enough material to do genetic, histological and IHC studies.
It is possible the cancer has mutations which could indicate treatment with olaparib, rucaparib, keytruda or chemo with platinum compounds. It could also help to search for clinical trials.
Discuss having Provenge , a vaccine which has shown in RCT to offer a survival advantage.
I do not know where you are being treated but a this point I would look for second opinions in centers of excellence (Sloan Kettering NY, Dana Farber Boston, MD Anderson Houston, UCSF SFrancisco,, Stanford Palo Alto Ca, UCLA Los Angeles, City of Hope Duarte Ca etc.). I would also start looking for clinical trials and these consultations may help to find appropriate clinical trials for your situation.
Thanks for the comments. I had genomic testing in June of 2021 through Guardant 360 which revealed the following variants: AR W742L, TP53 G245S, AR W742C, TP53 R273H, MAP2K1 P124P, ERBB2 T306T, FGFR2 amp 2.6 and MS-Stable. As I recall, all but 2 of them had FDA approved treatments associated with them.
Thank you for the link to that paper. That pretty well explains the logic behind my oncologist putting me on a BAT treatment with Carboplatin/Cabazitaxel. It did initially reduce PSA, then PSA exhbited slow increase or stayed flat a couple of cycles until the rate of increase steepened to the point of obvious failure.
I, like you have never experienced a PSA level nadir of < 1. Mine is stable around 8-9 for the past year after Docetaxel and continuous Eligard. I still have my prostate. I also have a mild groin swelling over the past 6 weeks. Oncologist says not to worry.
I've had minor groin pains off and on, which have nearly disappeared with medical treatment (and dietary changes?). My "onco doco" says it's not related, but sometimes patients know more about their own bodies than doctors and I'm not so sure he's right. Regardless, the treatment (Eligard and Zytiga) seems to be helping - my PSA dropped from about 31 to 0.1 in roughly three months, and I'm hoping it drops even more.
I might to go with Zytiga if progression. Although the Oncologist says not at this stage. She says although Im 'probably' castrate resistant it is not worth pursuing additional treatment until PSA rises consistently. What do you think of her response?
I'm really new to this, having been diagnosed in May and determined to be metastatic in July, but my non-medical opinion is to go with what the oncologist says until it's known for sure that you're castration resistant.
I don't think anyone can have a clear cut answer to that. I stayed at 8 to 9 PSA after chemo and on Lupron only. Lasted about a year then PSA rise and onto Zytiga which lasted about 14 months.
Each of our cancers and our responses to treatment are different even though at times we seem able to compare and try to draw conclusions.
Thanks for your comment. My oncologist had a similar comment, that trajectory was more important than absolute level. However, ranges at 10X, 100X or even 1,000X do cause one to ponder.
I am in a similar situation to you 21cakes, though my journey started much earlier.
I was diagnosed in 2013, had prostatectomy, followed by EBRT and hormone treatment which kept my PSA at undetectable until December 2015.
Then started a gradual rise until it reached .46 in July 2018 when I started Zytiga.
Held it in check for about a year before another gradual rise to 9.5 in October 2021.
PSMA showed 20 mets in neck, spine, multiple ribs and femur.
Stopped Zytiga and started Docetaxel in December 2021, but suffered 2 hospital visits with sepsis after first 2 infusions.
Reduced the strength and added Neulasta for next 3 infusions but it failed with a rise in PSA to 38 in March 2022.
Then began a doubling roughly every 4 weeks til it got to 457 in October 2022.
Next PSMA showed mets too numerous to mention in just about every bone between knee and elbow. Lit up like a Christmas tree.
Decided to start Lutetium and had first infusion on 20 October. On day of infusion, PSA was 836. 2 weeks later it was 556. Next infusion in a couple of weeks.
Like you, all mets are in bones, no organs or soft tissue, and so far no pain!
I wake up every day grateful for the fact that there is no pain, but also wondering when it might start and hoping the Lutetium is warding off that day.
In the meantime I am feeling great and enjoying every day.
Thanks for the comments. And ditto your "I wake up every day grateful for the fact that there is no pain, but also wondering when it might start and hoping the Lutetium is warding off that day." I think about this every day I get to walk my dog under blue skies.
21cakes, your story is amazing and your spirit comes thru strong...keep pushing brother...
I may have been the source of what you are confused about, ultra low PSA (uPSA) ...its a diagnostic feature for men who can start their journey not at the heights you experienced, but far lower after they have RP. For those men the articles I found make a great point that paying attention to the velocity and apex of your uPSA is a pretty good predictive tool for considering aRT (adjuvant radiation)...I have had a RP and am thankful that my PSA has dropped to ultra low levels, but I cant get any doctor to pay attention to this test. In fact in the USA medical centers only release PSA to patients at either 0.10 or now at 0.40 ng/ml...this I think is to help us patients with 'Prostate Specific Anxiety,' or 'PSA' as doctors refer to it...patronizing when you look at some serious studies that say uPSA are great predictors of BCR 18 months before it happens...could give patients a chance to hit the prostate fossa early in an adjuvant strike before the cells escape and start to grow elsewhere...so this article is not for everyone but those under active surveillance may find it interesting, even provocative...TNX
PS I posted 3 articles on this issue if anyone is interested; click on my image (avatar)...TNX2
Thanks for your comments. As I recall, I had a report of .4 PSA back in 2005. My GP was not concerned and I, rather foolishly, never had another test. Since I was in great health and thought I had no need for a doctor until the PC caught up with me in 2020, I hadn't bothered to get a replacement GP after mine retired. Routine PSA tests are standard advice that I offer younger men in my acquaintance. Don't do as I did.
With regard to the ultra low PSA ranging vs. my own experience, thanks to the link you provided, OK, now I get it.
I hear you brother...I made so many mistakes and did not see so many signs...in fact I wrote them down for anyone to pass along...like you I will pass every day I have left talking to any man who is starting this journey and I have but one goal, to spare them the pitfalls that I found on my path...I think you feel likewise. If we can do that our poor chooses suddenly make sense...TNX
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