Well Brothers, after 5 years of undetectable PSA after a grim 209 PSA dx in 2014 my treatment of Degalerix and Casodex is probably starting to fail...My PSA today came in at 0.03...Oncologist is not worried because he says that technically I am still undetectable and my PSA is insanely low, but I have am no dummy in this battle and know what awaits me..
I asked him if I should stop the Casodex and he said no to wait until I get another PSA reading in 8 weeks time. He also told that because my PSA is still so low, I am really not yet a candidate for Provenge. Obviously if my nest PSA reading is higher, I am sure that my next step will be bone scans, gnome sequencing etc. I would love to jump to Darolutamide vs. Xtanti or Zytiga because of the lower neurological side effects but it is not yet approved for metastatic PC which I find absurd.
In conclusion, I had a heck of a good run for over 5 years and was an outlier, so I feel blessed. Also, got all kinds of things off my bucket list like travel etc..during those 5 + years. I guess the hard stuff will start very soon, so I have to think positively and hope that I respond to second line HT as well as I did on first.
I will keep you all updated and please stay well
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Yes I agree. If they were not using the ultra sensitive PSA test I would still be celebrating an undetectable PSA status. I initially started Degalerix and Casodex upon DX in 2014 but the Oncolost took me off Casodex 3 months later because of my constantly dropping PSA readings. Unfortunately the PSA started to creep up as a result and he put me back on Casodex around May 2015. The PSA dropped to undetectable 0.02 where it remained until now. I wonder if the Casodex is now staring to feed the cancer. What are your thoughts?
I suppose that I can switch to Lupron now so I don't have to endure the monthly Degalerix injection. He is still reluctant to put me on Lupron because he believes that Degalerix is superior to Lupron and I have had such a great response to it for a long time.
I suppose my next step is to stop the Casodex to see if the PSA drops again and take it from there
That IS a pretty good run. Not having read all your prior posts, I'm just curious: did you and your doc ever discuss ADT vaca at two or three or four years in, or did you both think, why mess with a good thing?
You’ve had a great run like you said, chin up and 😊 Now, keep the faith, stay the course, and you’ll do just fine.
Don’t fret about side effects, I am just grateful that there are meds to keep me ol’ engine going, so I can goof around with my grandchildren and wife and Family.
Take good care, keep cheer and remember stay the course and guide this ship well.
Hang in there, Poofers! I think you’ve got a lot ahead. And I empathize in that I’ve been ND for almost three years. I will feel similarly when/if I ever creep above < 0.01. My doc has already prepped me in that he’s always emphasized the rate of growth (doubling time) rather than the values le itself, particularly when it’s so low. So, I’m in the camp of just calmly watching the rate (if there is one) and take care of yourself as you clearly have been! Peace. ✌️ Doug
The lab associated with my oncologist reports anything less than 0. 1 ng/mL as <0.1 ng/mL. And my PSA has been <0.1 ng/mL for over a year. I think this approach improves my QOL (e.g., I sleep soundly) without compromising my LOL. Sorry your 0.03 ng/mL is causing you concern.
I am two years into this journey. My PSA started at 103. I reached a nadir of 0.17 over a year ago. Last fall it started to creep up. I worried that I was becoming resistant but my oncologist said not at all. My PSA has held steady around 0.4 for about 6 months now. I think your change is minor and you shouldn't worry too much.
My observation is that you're STILL on a great run. Try to be positive, no reason the believe "the hard stuff will start very soon". Continue to count, and add to, your blessings.
Do you still have your prostate? Remember that only post prostatectomy do they say you are reoccurrence if you rise above 0.2. And you still have some ways to go!
Other wise with your prostate in tact they say it’s nadir plus 2.0 before they say you are castrate resistant.
I’m in a similar boat as you. I’m 3 years post stage 4 dx and 10 rounds of chemo. I enjoyed 3 years of undetectable PSA. But my last two readings were 0.2 and 0.3. Again, still have my prostate, so this jump doesn’t mean all that much YET. Doc assured me that “bounces” are normal. But meanwhile I’m struggling to not feel like the shoe is about to drop!
I didn’t know there was a different measurement for castrates resistance, depending upon whether one had there prostate removed or not. Can you point me towards a reference for that. I am 8 hrs dx and Prostate removed and PSA has just started to become measurable. I thought my doc said there would be no changes in treatment until I reached PSA 2.0. But, since my prostate was removed, you indicate treatment should change when I reach .20. Is that correct?
I just read the article sent to me by Bluecat dog regarding the different PSA measurements to be used in deciding whether a treatment change is warranted. The .20 measurement for those who had their prostates removed ( versus the 2.0 used in other cases) appears to apply in cases where the cancer was NOT ALREADY metastatic. HOWEVER, some of us, including me, had our prostates removed even though we were metastatic. Accordingly, my MO is still using the 2.0 standard in determining whether I require a change in treatment.
This is very important to me as my PSA has been bouncing around a bit from .08 to . 12 and then back down again these last few months, after having been unmeasurable for close to 8 years
You ‘aint done yet. Your journey is still a long one. What do you want to do now with your one wild and wonderful life? That should be where your thoughts go every new day.
Degarelix is superior to Lupron. And it probably keeps your T thoroughly castrate <20 for 2 or even 3 months if the monthly shots are too onerous. Just check T levels with your PSA at two months after a previous dose and see. For me one dose of 120 mg lasted three months with T =11.
You , like me, are very fortunate to have a slow growing form of this disease responsive to ADT.
Hi Poofers, PSA and blood work in general is only one of three ways to track cancer activity. The other two are scans and patient reported symptoms. If you ignore your blood work, how are you feeling?
Also, the "hard stuff" is highly individual. For me it was originally a cancer-antagonized nerve that made it excruciatingly painful to sit. Earlier this year is was hydronephrosis caused by a neuroendocrine tumor growing out of the prostate into my bladder. I'm in the final cycle of chemotherapy now, and with the exception of one particular bad night of side effects it's much easier than dealing with uncontrolled cancer.
As others have said, you still have many quality years ahead even if future PSA tests do cause a change in your treatment plan.
Perfect example of uPSA causing panic and needless concern. Enjoy life. No worries while undetectable. Defined as <0.1. Do yourself a favor and get standard reporting PSA testing.
One of my 3 MD's (the urologist) always want's ultra-sensitive PSA tests. The other 2 say that's silly (rad-onc and med-onc.)
Happily the lab I go to (Quest) doesn't do ultra-sensitive, so.. I've never seen one. I just get to see "undetectable <0.1" for every test. That helps me sleep nights. If I did get the ultra-sensitive, I could easily see myself here like poofers coming here for reassurance the sky isn't falling. I'm actually a bit surprised with the treatment I had that I am turning up undetectable (IG/IMRT/ARC+Boost, and 18 months of ADT) - I probably still have prostate tissue in my body - and there is a chance some of it might put out a bit of PSA.
Poofers - Tylenol PM works great to make for a good nights rest. I recommend it.
Whatever it takes?I haven’t slept 8 hrs straight in five years . You’re doing better than I on the sleep front.?😎✌️
Hey poofers! No way that your luck has run out. 5 years is a hec of a run . I still think that you’re doing really well . I’m at 4 yrs myself . You might have to change gears at some point. Love and Live life 🙏
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PSA increase .08 to .15
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Favorable Casodex withdrawal 
Muscle atrophy
My Journey
