Hi all
Looking for any insight. Diagnosed nearly three years ago. Prostate removed and positive in nearby lymph node with negative margins. Post OP PSA was 3 started ADT for nearly 2 years. PSA was immediately undetectable throughout. Stopped ADT for 10 months and just got results it's back at .02.
A bit bummed and would appreciate your thoughts.
Thanks john
No salvage RT? Why not? Especially with positive lymph nodes and persistent PSA. PSA of 0.02 is very low- has your testosterone recovered?
Hi
Thanks for writing
After surgery oncologist at UCSF said radiation not necessary. I am now with Seattle cancer care and they would have done it. It's the past so I need to get over that. On ADT PSA was undetectable.
My testosterone quick came back after ADT Went to 360 a few months ago
Why do you think it's too late for SRT now?
My MO thought too late. Will talk with them again
Talk to an RO, not an MO.
Yes.. I consulted with a urological oncologist on my own, and he told me that MO’s want to resolve everything with hormones. My MO never discussed salvation radiation. I have since consulted with a radiologist who is ready to go right away.( 3 years post op RP, psa @ 0.43, 22 months doubling time...they told be to radiate before it hits 0.5)
That's as good as zero, I wouldn't read too much into it. It could just be a small fluctuation (noise).
If it were me, I'd stay the course for now. When is your next PSA check?
Hey man.
Thanks. I had my GP check it last week for shits and giggles or paranoia and meet with MO on 12.10
Just curious, how has the vacation been? Getting ready to try same.
10 months. It's been great.
How difficult was it to get off the Prednisone. I may start Zytiga but not a big fan of the ling term use of the Prednisone.
Thanks
Hi Parscore
I am currently just on lupron but my Mo says that because my PSA is now .84 that I need to go on zytiga with prednisone. Did you have a bad reaction to prednisone?
Thanks Tom
Thanks for the response. I have not yet agreed to the combo.
The prednisone is at a low dose and is designed to replace the corticosteroids that are not being made in your body because of the action of the Zytiga.
Thanks so much for your input
That's still a low PSA. A rise as small as that could be due to inflammation or an infection. So don't panic. You need to watch the next 2 PSA tests. If you get 3 rises in row, then you may want to take some action.
Thanks. Appreciate the feedback
Ling story short, my husband’s PSA also rose after stopping Zytiga. Restarted and its coming down again. Progression in mets is slowing down.
Hi there,
I am surprised that you did not do salvage radiotherapy.
I had a five week post op PSA of 2.07 and I started Firmagon shortly afterwards and then followed that on with 66Gy of radiation to the prostate bed.
Maybe you could still try a short course of ADT with radiation as well, if the cancer is restricted to the prostate bed it may kill or at least check it.
See how your next PSA goes, one swallow does not make a summer and one odd PSA result can be just a fluke.
I have just stopped my ADT after nineteen months and I am now 55 days from my last injection.
My blood pressure has already fallen back into the normal range and my skin feels normal again. I just have to wait to see if my testosterone returns and things might be bonzer.
Thanks.
Similar case, after surgery in Mar 14 (T2CNoMX, GS 8, ECE, SV and margins negative, 10% prostate involved) and SRT failed a C11 Choline in Jan 17 at Mayo scan showed four pelvic lymph nodes involved, fortunately no bones or organs. I did 18 months of ADT, six cycles of taxoter and 25 more radiation treatments. Last Lupron was in May 18. By Oct T was 135, PSA <.1. By Feb 19 T was at 482 but PSA came in at .36. We repeated the test two weeks later and is was .24. We've tested every two months through August 19 and the readings were .05, then .12 then .06. Next labs are in Jan 20.
Given the sine curve nature of the PSA results, my urologist and I are doing nothing. We will continue to actively monitor. When there is a continuous upward trend and we can determine PSADT and PSAV, image using either the C11 Choline at Mayo or Aximun here in Kansas City we will decide on treatment, what that is I don't know, obviously there will be lots of choices, some type of combination therapy I suspect.
Meanwhile, the SEs are gone, I feel great, friends tell me I look great!
If that is a single reading you may want to increase the frequency of your labs to determine what it is doing over time before deciding on the next step.
Kevin
That’s pretty low, but keep a eye on it . I lost my father in law because they didn’t follow up and check his. Fight that monster 🙏🙏🙏
PSA still at a good response . Would recommend SRT unless contraindicated for some unknown reason - don’t know why it would be too late ??? I am considering an ADT holiday myself with MO monitoring for quality of life issues after 7 years - haven’t decided yet - GS 9 - extensive Mets
General question for y’all: I’m seeing folks posting about these super-low PSA numbers (very happy for ya, btw!), but I was told that PSA cannot be accurately or reliably determined below 0.06. Am I missing something?
Lower limit of ultrasensitive test at most labs is 0.01. (it can vary with the lab)
Hi John. My Dx and Tx history is almost identical to yours. Check my profile. Have not posted before, but have followed this site closely educating myself for several years. I’ve learned to trust and respect the positions presented here by TA, Nalakrats and the other gurus who post regularly FAR more than most medical providers I’ve consulted.
After my failed RRP, Chaarted and Stampede were just coming out to be interpreted, and did not have access to any of the PSMA trials. IMRT to prostate bed with early chemo was recommended, but we decided in a bit of a panic to do only ADT since NM bone and CT scans showed nothing; and insurance denied the chemo anyway. Also didn’t know then if or how I would respond even to just ADT! I couldn’t get on board with radiation or chemo at that point if we didn’t know where the metastasis (micro or otherwise) were located, The docs at JH thought it would most likely be in bone.
Fast forward to this year, with rising PSA after my 2 year ADT vacation. Got a PSMA scan at UCLA “trial” which was hugely informative - showing very mild activity in pelvic LNs only. We know this is likely not definitive, and fully expect BCR again sometime in the future, but it did rule out any measurable organ or bone involvement at this time. Im hopeful that cautiously waiting a short time for Tx and scanning technology to improve was the right thing to do in my case, and I’ve had a whole lot of GREAT QOL all the while.
With direction of my expert Oncology team, started back on 1yr ADT regimen last July (but added Zytiga and prednisone), and just completed 33 fractions whole pelvic and IMRT regimen last Friday. Continued regular exercise and good diet the entire time; oddly, have felt really great and even still doing some bike racing 😁! Even with T at <7 (PSA again < .01)
I know the waiting time between surgery and salvage radiation created risk, but also know my treatment plan was different (and I believe better) with the PSMA scan that was available to me only recently. Would not have included the whole pelvic at first Tx recommendations, which is now the primary focus.
I sailed through the radiation with hardly any side effects so far, and same with the second round of ADT. Weird thing is I have hardly any hot flashes this time, but more instances of brief chills (far preferred) - wonder if the addition of Zytiga is the reason? Have felt 0 side effects from Zytiga except slightly elevated BP, and all blood panels are completely normal. I believe getting a couple good years to fully heal after the surgery has been important and beneficial to overall tolerance of all treatments - at least for me.
As everyone here confirms, this condition is totally heterogenous - each of us will have completely different experiences and outcomes. It could very well be that your timing for radiation is optimal at this point, and you’re correct not to second guess or rehash what’s you’ve done so far. Sounds like you’re on the right track, in my limited experience, and I wish you and all the other warriors on this site the best of health and good fortunate as we continue to navigate and learn.
And if I didn’t make it clear enough, SHOUT OUT and eternal gratitude to TA, Nal, and the others who help us so much with your guidance, knowledge, research, and expertise !
So how do you do it - maintain a low PSA during the 'vacation'?
I've had 3 PSA recurrences, and 3 remissions, since RP in 2006. On first recurrence in 2007, PSA went to 0.12 then 0.20 (0.20 is the definition of "biochemical recurrence"), so I had IMRT of the local area which gave me 7.5 years of remission. Second recurrence in 2016 when PSA went from 0.02 to 0.06 with 6 month doubling time, so I had IMRT of lymphs nodes outside the local area + Taxotere + Lupron, which gave me 2 more years of remission. Third recurrence in 2019, when PSA went to 0.02, but then came back down the next month to <0.01 (undetectable) with no treatment. "Undetectable" has a different definition in each lab because different assays are used in different labs. I highly recommend Dr. Mark Scholz in Marina Del Rey, CA for advanced cases.
to John-carp.... sounds fishy to me.... (I know you've heard that thousands of times, but only once from me)...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 11/25/2019 7:38 PM EST
The radiation thing? It's hard right you get these folks from what are suppose to highly respected groups tell ya something
With prayer and meditation I am Grateful that you have contributed this useful information to the list. I have read a number of your posts. I have difficulty getting the whole picture of what is recommended. I am trying to glean advice across sources.
And there is the problem of where to get herbs, and meds that conservative MO wont consider. Do you post to blog that lists your entire daily weekly regimen?
I stopped ADT (Firmagon) after 40 months in a rage when I realized that I was suffering from all the side effects: decline of intellectual function, brain fog, loss of strength and general malaise. I haven't had a detectabe PSA in two years and I am glad I did it. The treatment may be worse than the disease. I can afford to take this nonchalant attitude, I am 89 years old.
Thinking of taking an ADT vacation 
Lupron ( ADT ) vacation
Rising PSA after being off ADT for 16 months
PSA rising while on ADT mono therapy 
