I went to see my MO again yesterday. Since my PSA became detectable at my last visit, he changed my appointments to every 6 weeks instead of every three months (concurrent with the Eligard shots). In six weeks my PSA has gone from 0.1 to 0.2. yes, that is still low, and I was told not to worry about it, but how could I not worry about it? ADT by itself started to fail around 21 months, which I am told is about average. So we wait another 6 weeks. My MO said when my PSA gets to 1.5, we will do scans again and determine the next step. last visit I was told we wouldn't worry about things until the PSA reached 2.
I'm sure there are a lot of guys on the forum that have been at this point already, and some that haven't gotten here yet. This is where i am today, not quite ready to start shopping for tombstones, but feeling like the good part of my life has definitely been passed.
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Tonwantonga
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A lot of us here certainly know how you feel. Many of us are even further down the road and would love to be back where you are now.
Your doctor's right about waiting and seeing what your PSA does. We know it will eventually go up, but you can wait and see, That may still take a while to get over 2.
Fortunately, there are some excellent second line advanced AR drugs such as Xtandi and Zytiga, either of which could give you years more of low or even undetectable PSA. I got 4 years out of Zytiga, most of it with an undetectable PSA.
So as always, you just have to step back a bit, take a deep breath and focus on the present tense and what's happening right now. I've found, that's the only way to keep my quality of life and that's why we doing all this.
I started on Zytiga in May 2019 I started Eligard at the same time. Why do some only start Eligard and wait to start Zytiga or Xtandi? This whole thing is confusing
Starting Zytiga with ADT at diagnosis is a relatively new thing. Today, the recommended treatment at stage 4 diagnosis is ADT plus Zytiga plus Docetaxel chemotherapy.
Guys that started treatment before these "early" treatments were approved, were just taking ADT until they became castrate resistant. Then they would add the other drugs in a sequential fashion. When I started, only Docetaxel chemo could be added at diagnosis. Now you can have Docetaxel plus Zytiga or Darolutamide.
Of course not everyone takes all three of these for various reasons so you still have guys doing them sequentially.
The new PSMA PET/CT scans have a detection rate of around 60% when the PSA is between 0.5 and 1.
Discuss having one of these studies when the PSA is between those values. If there were a radiological progression of the cancer they could change therapy.
The new anti androgens have similar resistant mechanisms. If ADT plus abiraterone is failing it seems that it is better to do chemo (Card study) or Lu 177 PSMA, which may be equally effective to chemo (TheraP study).
i had chemo early, and radiation to the prostate after that as part of a clinical trial. No abiraterone. Provenge is on the table, mentioned yesterday. My MO and i havent talked about the PSMA PET scan for awhile, but I will bring it up again next time i talk to him.
I would imagine zytiga will put you back in the game. I’m at 21months and my PSA went from .6 to 1.2. I’ve done lupron for 18mo and zytiga for 21; I’m now trying estrogen gel. We’ll see.
Hang in there brother it’s a bumpy ride but no need to spend your money on a headstone just yet.
i agree with you. Better to wait until the PSA is at least 1.5 to 2.0 . You still have a prostate therefore wait longer so you can get a better picture what's going on.
What if it is only inflammation or infection. I am in a similar situation as my last PSA was 0.95.
I have come to the conclusion that it is not ADT that fails - but that there is a new variant of your cancer which has started to develop - and this new variant is Castrate resistant. I have heard that the SOC is to wait - but I cant see the point. I went to Xtandi as soon as a new development showed itself - and the results could be clearly seen on the PSA curve. The findings re triple therapy (ADT+chemo+ xtandi) seem to indicate that there is some benefit of making an early start to prevent new variants. Now I am thinking of the next phase which should be more docetaxel - maybe a low dose infrequently has some benefit - but I havnt found any data on that yet.
i was thinking the same way as you. I don't know if my oncologist would want to start me on only one, two, maybe three up to 4 cycles of Docetaxel chemotherapy (or maybe Jevtana?)
After four cycle of docytaxel chemotherapy I could continue maybe with Xtandi.
I only had Degarelix and early chemotherapy 6 cycles untill now and my PSA started slowly to rise after 3 years from 0.2 to 0.95 in the last one year.
My husband has been on Xtandi for about 18 months along with Lupron, PSA undetectable. 3 mos. ago it increased for first time from -.01 to .01, doctor said nothing. Next visit it went up again to .02 with following visit changed to 6 wks. where it is now .04. He's been taken completely off Xtandi due to worsening side effects including difficulty with walking and lifting his arms as well as increased shortness of breath. He's also scheduled to see his cardiologist in 2 wks. after having had his annual echo moved up. In Oct. we're to discuss options for further treatment which is complicated by cardiac issues.
Can I ask if you had both RALP prostate removal followed by external beam radiation? Also, what is your current T level and has that increased at all? Hang in there; you are very early and the PSA could abate itself before the dreaded progression.
No prostate removal; i was scheduled for prostatectomy but bone scan showed 'numerous and extensive' mets so they let me keep the little troublemaker. T was down to 9, was 14 in July, 12 on Tuesday. so, a slight increase but not much.
I’m in the same situation as you after several years of being undetectable, PSA has become detectable again although at very low levels (I use an ultra sensitive test). Regardless I want to be proactive in my treatment, something that’s worked well for me so far, so I opted for Provenge last summer. Provenge is most effective when your PSA is low, less than 5.
My game plan is to get a PSMA scan once my PSA is somewhere between 0.1 and 0.2. My PCa specialist, Dr. Sartor feels in my situation that it would be best to get one at these low levels since I’ve been on ADT for over 8 years. He said long term ADT can sometimes suppress PSA although cancer could still be visible on a scan. From there we’ll decide a course forward which may include SBRT, BAT or Lutetium. I’m trying to hold off on Lutetium as long as possible, your starting to run out of bullets at that point.
Don’t stress, be proactive and come up with a game plan. If you decide to get Provenge and you want some pointers on getting the treatment feel free to message me.
as much as i would like to have my Testosterone back, i know that, for my own good, it is gone for good. i understand that i will be getting Eligard every 3 months until I croak or go to hospice, and we will start trying to stack other treatments up against the beast. my MO said we will get scans when the PSA goes to 1.5 or at the next regular scan interval, which isn't until April. i might get lucky and keep the PSA below 1.5 for that long (i think i'm overdue for some good luck)
I find myself in the same boat recently, ie, emerging PSA in a low T environment! So... The drug is still working, my T is (<10), but my PSA is on the move. 0.12 ~ 0.21ng in one month. So, we are looking to see if resistance has begun or if there's a met somewhere.
I went from Lupron, to Orgovyx, now Degarelix for thr last month, only 18 months total until now, one year post Docetaxel.
Have an MRI from last Sept, and a PSMA-PET and MRI scheduled next month.
So curious about what path, (drug wise) might or could be next? MO and I have discussed going the genetic route as I'm Lynparza eligible... Or is that too soon? Also CHK2 eligible for that Inhibitor... Is both an option at the same time? Of course I'm sure the anti-androgen drugs stay as well. My curiosity is with the "line" or progression of theraputic drugs...
Cooolone, i don't have a problem with you jumping in here, the more questions we all ask, the more we will find out I hope. I'm also curious about the progression of treatments - what comes before what, and why. Which treatment works best with another. is there something that absolutely should be avoided, and why.
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Is my cancer castrate resistant?
What is considered Castrate resistant?
Possible castrate resistance already?
Xtandi for castrate resistant PC
Just evaluated as castration resistant
