Brief summary of my situation: Age 65. aPCa diagnosed 11-30-21. Gleason 9 - 10. PSA was relatively low -- 4.68. Currently on Eligard only, but plan to add Zytiga VERY soon and possibly/probably Docytosel.
My question: What, if anything, should I make of the fact that my PSA reading appears to have bottomed out at .53? Also, although my next PSA reading after the .53 reading (albeit only two weeks later), showed a slight rise to .54?
NOTE: I was very happy to see my PSA drop so quickly to .53, but two weeks later, when I somewhat obsessively had my PSA checked again, it showed as .54. So, I wondering if the bottoming-out at .53 has any significance (versus going lower) and am a little taken back by the .01 increase.
My PSA readings have been as follows:
November 2021: 4.68, upon diagnosis of aPCa
December 2021: 3.08, after short time on Casodex only
Below is my detailed timeline, in case anyone wants more detail:
NOVEMBER 2021
------------------------
11/3/21: CT scan (ID'd possible Lymphoma or metastatic cancer in lymph nodes)
11/15/21: Met with Oncologist
11/18/21: Prostate biopsy done
11/23/21: PET scan done (same findings as CT scan)
11/30/21: PROSTATE CANCER DIAGNOSED from biopsy
Gleason 9 -10's, cancer in all 12 samples
Started Casodex
Met with Oncologist again
The plan was to wait to see if suspected metastatic tumors shrink with ADT. I decided to have a biopsy done, instead of just waiting. As shown below, biopsy showed metastatic spread.
DECEMBER 2021
-----------------------
PSA test result (Quest lab)3.08
12/10/21: First Eligard shot - 6 mth. dose
12/23/21: MD Anderson JAX consultation - recommended tumor board review
12/30/21: Stopped Casodex
JANUARY 2022
--------------------
1/10/22: MD Anderson Tumor Board recommended biopsy of lymph node
1/10/22: Color genetics test sent away for analysis
1/11/22: PSA test result (Quest lab)0.53
1/18/22: Lymph node biopsy of supraclavicular done - MD Anderson Jacksonville
1/22/22: Biopsy results: Confirmation of metastatic spread
1/25/22PSA test result (Quest lab)0.54
1/28/22: Treatment plan recommendation received from MD Anderson
Medications: I am taking Eligard (6 month dosage) and plan to add Zytiga and possibly Docytosel. I am pre-diabetic am taking Metformin. I also take Flomax.
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Skipper238
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You were only on casodex for one month, why quit so soon. That's not enough time to judge if it's working or not. Your burning through a lot of ADT drugs very quickly.
A change of .01 in PSA is nothing to worry about. Those small fluctuations could be due to inflation in the prostate bed.
Give things a chance to work. I would not think about abiratorone for now. See where things are going after a few PSA readings. Have one done every month, and relax.
Hi Magnus. I agree on the fluctuations but any increase sure does freak a person out, so I fully understand Skippers questions. Casodex for one month then ADT plus Zytiga is SOC (Standard of Care). Only someone who is very well read up can ask to remain on Casodex only and only then if the Medical Oncologist thinks that this is appropriate. Good luck Skipper my friend.
SOC or not, you are patient, and you need to take control. Doctors are not gods. Many tend to blindly follow the course. You have a right to ask questions and deserve answers. If a doctor is not forthcoming with answers, and does not treat you with respect, fire him.
I understand there are different points of view on Casodex. The MO at MD Anderson said it would be better to only use it for 30 days for the purpose of preventing the Eligard flare. In terms of adding Zytiga, I'm just planning to follow the suggestions from the Peace-1 study.
Glad you will be able to take advantage of the good results from the Peace-1 trial results.My chemo started about 2 months after my first Eligard/Lupron injection.
My oncologist was fine with the delay (It was in November and in January of the next year I was to have much better health insurance).
I was doing chemo before the Peace-1 trial was in its final stages. My first MO brought up starting Zytiga about 2 months after I finished chemo. I moved so haven't seen her since and have wondered if she wanted to but found insurance wouldnt cover since the Peace-1 trial wasnt "out officially" yet. Anyway I speculate blindley lol.
I started Zytiga about 11 months after my last chemo infusion when PSA had risen and scans showed new and old metastasis activity.
BTW I am doing great. At least considering where I started from.
I have a meeting with the MO to discuss these things on Friday. All I know, for now is that the labs showed the clavicular lymph node tissue was metastatic spread from the Prostate.
Thanks. It seemed like it should be within a margin of error, but I don't know how sensitive these things are. I've read about some people asking for 3 digits to the right of the decimal on their readings, so maybe it was a rounding thing, too. I'm not too taken back by it, by I was hoping to see .28 and not .54 😀
Acceptable variance for the PSA test is up to 20%, not including specific measurement conditions like diurnal PSA serum concentration i.e. blood draws at different time of the day, hydration state at draw, evaporation between draw time and analyzer processing and in general anything not linked to the analyzer's repeatability distribution which as you already have understood there is no way to be less the 0.01 rounding error (example: your first draw could had very well been 0.5349 and your second 0.5350).
Yes. Thanks, Justfor_. I think I pushed the panic button a little bit. 🙂 It's just that in my mind, my PSA had stopped going down, unexpectedly, and instead actually bumped just a bit. I wasn't expecting that. I'm going with the idea that it's due to the lymph node biopsy that was taken just a few days before my PSA test. Poking a metastatic tumor with a sharp needle must release some cancer cells into the body, so maybe it's that. I'll chill for a bit. Thanks.
I would be looking at the PEACE 1 protocol as the best treatment option going forward based on the clinical trial results. That's ADT plus Abiraterone plus Docetaxel chemotherapy. Sounds like you are heading in that direction anyway.
That's much more important than trying to analyze minute changes in your PSA and trying to figure out what they mean. Tests are only useful if they inform treatment decisions.
Talk to your doctor about the treatment plan based on the PEACE 1 trial.
Thanks, Greg. Yes, that's my plan. I am quite sure that is what will be recommended by MD Anderson, too, based on a comment made by the MO during my last visit.
I'd like to get started ASAP, but everything takes a bit of time due to scheduling with doctors, labs, scans, etc. I believe the Eligard should be a good placeholder until the other two medicines (Aberit. and Doxy) can be added within maybe 30 days. Thanks.
"I believe the Eligard should be a good placeholder until the other two medicines (Aberit. and Doxy) can be added within maybe 30 days."
That sounds like a good plan to me. I started Docetaxel over a month after ADT (Lupron). At the time, only Docetaxel was offered with ADT at diagnosis. Just adding chemo seems to have made a difference for me. I'm coming up on 5 years now. Hitting it early and hitting it hard seems to be the best plan.
"Coming up on five years, now." That is music to my ears. I'm happy for you and hopeful for me. Thank you. I was initially a little skittish about doing the Docetaxel, because I was concerned about side effects interfering with my work and life. I think I'm over that. What has your experience been with side effects? Have you tolerated the chemo treatments OK? Thanks very much.
Side effects were quite tolerable for me as they are for most. It's mainly the first 5 days after infusion that you feel crappy. Would do it again for sure.
I was definitely happy when it ended. However, I did find there was a unexpected psychological benefit with the chemotherapy that I didn't realize until I stopped. It helped me when I was first diagnosed to have something I was doing actively to fight the cancer on a daily basis and the side effects actually helped to remind me of that. Having the short-term goal of getting through each cycle helped too. After I stopped I felt that I had lost something and that I wasn't doing as much actively. It felt like I was now waiting for the cancer to make the next move. Actually, I got a little depressed after stopping chemo, even though I was really tired of it.
In your case, I think the chemotherapy may be the most important early treatment option of the two because of your high Gleason score and the possibility that you may have reached your PSA nadir already. That's speculation at this point and there isn't anything you can do about that.
But picking the best treatment is something you can do and it sounds like you are doing that.
Gregg, Thank you for all of that. I understand 100%. You have helped me get off the fence re: the early start for chemo. I think I will view it similarly to how you described that you viewed it -- as an active effort. I like that thought. Thank you.
High Burden metastatic PC is extremely dangerous ("biopsy showed metastatic spread." to where?)
Your gleason 9-10 biopsy with 12 cancerous sections always trumps and diminishes the relevance of a low PSA...always, always, always, which is why we have what are called pmsa/pet scans.
The PEACE-1 trial protocol will extend your OS compared to SOC, or AAP alone, or other protocols mentioned here and elsewhere ( STAMPEDE) .....but remember results will vary because the cohorts were small.
"Fizazi pointed out that for men with high-burden metastatic prostate cancer, the triplet treatment used in PEACE-1 provided 2.5 additional years without cancer progression and approximately 18 additional months of life. “For the first time these men can expect to live more than five years whereas before 2015 their median survival was less than three years."
"Adding treatments such as docetaxel chemotherapy has been tested and shown to prolong time to relapse (=rPFS) but did not prolong life expectancy."
OS ADT alone = 33-35 months, OS Peace-1 = 61 months. (using the median, not the average, not the mean or mode......sets higher half apart from lower half).
To try and answer your question about "where" is the metastatic spread, here is more detail. On November 23, 2021, I had a PET scan. The results are below. It identified possible metastatic spread to various areas, but the pathologist who read the PET scan and two different MO's said it was possible that I had Lymphoma in addition to Prostate Cancer, so it couldn't be determined definitively that my cancer was metastatic. So, to determine once and for all what was what (and at the recommendation of the MD Anderson, Jacksonville, FL, Tumor Board), I had a biopsy done on my left supraclavicular lymph node. The results of the biopsy showed that the lymph node contained metastatic prostate cancer versus Lymphoma.
Also, can you explain what you mean by this, please? I don't think I understand.
"Your gleason 9-10 biopsy with 12 cancerous sections always trumps and diminishes the relevance of a low PSA...always, always, always, which is why we have what are called pmsa/pet scans."
Ph.d. Biochemistry, University of Chicago, Chicago, Illinois,
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***One question Sharon, what are you doing tonight?***
#1 Metastatic PC is very, very serious business, especially with "high Burden" types such as you (Gleason 9-10). It is a different ballgame than 6-7.
#2 Fixating about your PSA value when you have definable MCRPC is almost irrelevant because it can be "irrelevant" in the context of MCRPC. IOW, you can have very low PSA/ALP/BAP test levels and still be riddled with a terrible metastatic tumor spread.
#3 "The results of the biopsy showed that the lymph node contained metastatic prostate cancer versus some type of Lymphoma." So, it isn't Lymphoma. It is metastatic. Case closed.
Therefore, your PSA is irrelevant in the context of overall metastasis. Discuss the Peace protocol with your docs. Hopefully, they have reviewed the results. What bothers me somewhat about the trial was the use of the "median" value to claim efficacy. I would like to see the actual distribution of results to calculate others stat values. Results might vary.
Somewhere down the line, say this year at the latest, I would considered the need for a PMSA/PET given your PSA. The spread may not be serious at this point, then again it might be. Hopefully your insurance will cover it.
(LYMPHADENOPATHY is the "swelling of the lymph nodes"...due to some type of infection....seldom caused by your PC cancer; lymphoma is a different term that does involve cancer in the lymph cells)
Thanks, Sharon. I was under the impression that by taking Eligard, I would be hopefully "freeze framing" the cancer until I became castrate resistant, and that the lowering of my PSA level was the best indicator of Eligard being effective.
I will discuss with my MO tomorrow, as I learn if he is onboard with the PEACE-1 protocol for my treatment, ADT+Abit+Doce.
IF YOUR DOC IS SUGGESTING eligard (as in leuprorelin ....very similar to lupron) will freeze frame your advanced metastatic PC, ask to see the trials that support such a conclusion. Yes, eligard or lupron will lower your PSA, but so what if your cancer has spread throughout your body?
basically, any effect of eligard-6 is premised on 6-month testosterone suppression (salvage), so if your test is already in single digits don't be surprised if results are minimal. yes, Eligard achieves levels of reduced testosterone as seen with orchiectomy, but so what.
if stats are important,
The study, paid for by the National Cancer Institute, showed that among men who received radiation and hormonal treatment, 76.3 percent were still alive after 12 years, compared to 71.3 percent who had radiation alone.
At 12 years, the men who had both treatments were also much less likely to have died from their prostate cancer — 5.8 percent versus 13.4 percent — or to have the cancer spread around their bodies — 14.5 percent versus 23 percent.
see also the TITAN and ENZAMET trials for other alternatives.
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