July 2011: PSA 11 before RP prostatectomy: PSA 0.2 afterward
Fall 2011: PSA began rising
February 2012: 27 rounds radiation, PSA 0
July 2014: PSA .2
November 2014: PSA .4
Wait and watch, 3, and 6 month interval PSA checks
Sept 2018: CT scan, no mets
Nov 2018: PSA 9.03
December 2018: began Lupron (6 mo)
March 2019: PSA 1.05
Dr said wait until PSA gets up to 4 for next shot (intermittent)
September 2019: PSA 1.97
March 2020: PSA 10.43 Got next Lupron shot
June 2020: PSA 4.27
Sept 2020: PSA 12.14 Dr says take another 6 month ADT shot (Lupron shortage- maybe Eligard), then check PSA in March 2021
My Dr. is apparently satisfied with the rise, then knock down of the PSA with ADT. However, it is unsettling to me to see the trend continue upward, and then ADT not get the PSA down to 2 or even lower. At what point do I switch to additional therapy (Casodex, Zytiga, Xtandi, etc.)? And which would be the most appropriate next step of the options?
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CharlieBC
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You are castration-resistant - your PSA rose from 4.3 to 12.1 while your 6-month Lupron shot was still active.. If a bone scan/CT still shows you are non-metastatic, you can qualify for Nubeqa, Erleada, or Xtandi. If it detects metastases, you will qualify for Taxotere, Zytiga or Xtandi.
TA, Thank you for your response. I knew I was asking something that has been covered, and I appreciate you taking time to address my situation. I've been silently following along quite a while, and appreciate all of the contributors. Hopefully, I'll be able to help answer someone down the road.
What direction are you headed for additional meds???
Well I think today is a game changer for me. My PSA has now jumped from 1.6 to 2.4 to 4 in 60 days. I have an appointment with my Mayo Phx MO on Monday. Currently just on Lupron, for 20 months. Feel great. Lots of exercise. What was the next step for you guys in my situation. Obviously we are very worried.
Still on Lupron (actually Eligard due to shortage). I'll check PSA in 6 months. If it goes up, we may add casodex to the Lupron. Since the ADT didn't knock the PSA down much, I thought my urologist would add it this last time- but I just got the Eligard shot. Biking and red wine is the only non-med input on my part.
In the US, the FDA determines which "indications" each drug is approved for. Most insurance will not pay for a drug that is not prescribed for an FDA-approved indication. Even with FDA approval, drug plans may not cover all of them. Doctors may prescribe any FDA-approved drug, even if it is not for that indication. This is called "off-label" prescribing. The problem with off-label prescribing is that those drugs are very expensive, and most of us don't have the funds to cover the cost out of pocket.
The FDA can only approve drugs for which there is specific evidence of efficacy and safety. If research has only been done on CR men, that drug can only be approved for CR men. (there are only a couple of exceptions)
Sometimes oncologists can convince insurance to cover non-approved indications. For example, my friend who was metastatic and CRPC also had a stroke and seizures. His oncologist convinced his drug plan to cover Nubeqa (which does not cross the blood-brain barrier) for him even though it is only approved for non-metastatic CRPC.
Very interesting. My MO says there are (a few) men who, in the case of a BCR, go directly to docetaxel if they have had horrible experiences with ADT. Have you seen this?
No, I haven't known anyone who has done that. If they are metastatic, docetaxel is used with ADT. I've never seen it as a substitute for ADT. My experience has been that more men are afraid of chemo than are afraid of ADT.
Yes, I'm sure it's rare. I would think it only happens where someone: a) had an experience with ADT so bad that they would never do it again under any circumstances, and b) realize that refusing all treatment was not an option either.
And now, with the advent of BAT and tE2, not to mention Axumin scans and the like, people like me (who really wanted to die a few months in) have real hope. I used to live in terror of a BCR, and now I really don't.
Thanks for all this. You're a huge help to so many of us.
Holy chit Horse....you really wanted to die in a few months? Sounds like me when I lived with my ex-wife... Well Horse we are all glad that you chose the alternative and are with us. Stay around for a long time and help yourself and help us. Keep on trotting....
You are always so helpful. I am trying to make the same decision in addition to my Lupron. Had RP in 2002, Radiation 2003, undetectable for 10 years, only Cassodex for 3 years and Lupron for 18 months. I have about 8 mets for the last 3 years. Very little growth. My last PSA 's were:
3/12/20 - 0.8
4/ 9 /20 - 0.83
5/12/20 - 1.2
6/10/20 - 1.8
6/10/20 Testosterone - 7.0
7/ 6/20 - 1.8
7/30/20 - 1.6
9/ 1.20 - 2.5
I feel great, walk, lift weights, golf and watch diet but do not know which of the Taxotere, Zytiga or Xtandi. My Mo appointment is 9/28 at Mayo Phoenix. How do you know which to take first?
I think there are a few reasons to do Taxotere first. There is a logistical reason to do Taxotere first: It is usually finished after 6 infusions, 3 weeks apart. So after 15 weeks, you are ready to move onto the next therapy. Whereas, if you do Zytiga first, it may be years before you can do the next therapy. I think the more therapies you do earlier, the better off you will be. Another reason is that the side effects of Taxotere are milder if done earlier. I think too many men put off chemo until it is too late to do much good, and the side effects are worse in a cancer-debilitated body.
I started on Lupron, and almost immediately had 6 rds Taxotere. Rounds get a little more debilitating each time, but 1-4 were a breeze. Followed up w Zytiga about 1-1/2 months after Taxotere. PSA 0.04 3 mths after chemo, still decreasing 0.02 in August. Big decrease in ALP, followup MRI. Don't hesitate to take chemo.
Well I think today is a game changer for me. My PSA has now jumped from 1.6 to 2.4 to 4 in 60 days. I have an appointment with my Mayo Phx MO on Monday. Currently just on Lupron, for 20 months. Feel great. Lots of exercise. What was the next step for you guys in my situation. Obviously we are very worried.
Had my video appointment with my Mayo MO today. My PSA on 9/25 was 4.0. He recommended we do scans on Wednesday and then look at options. His recommendation was Lupron + zytiga or enter into the CDK 46 trial + zytiga + Lupron. Have you heard of that trial? Always appreciate your insight.
Why did they rule out Taxotere? UCSF is doing a trial of a CDK 46 inhibitor combined with docetaxel. I like the idea of combining it with docetaxel because it may kill cancer cells that only incur sublethal damage from the chemo. You might ask your doctor to call Rahul Aggarwal at UCSF to see how his trial is going:
Do you mean bipolar androgen therapy (BAT)? No, that's not for you - they only experimentally treating men with asymptomatic metastases and in an earlier post you said you were experiencing some pain.
In a post 9 months ago, you wrote "It actually now is beginning to hurt a little bit. " If you had the painful metastases zapped so they are no longer painful, you are not aymptomatic. Are you talking about the crazy Liebowitz protocol or are you talking about BAT? Either way, it is dangerous for you.
I met with my Mo tonight,. My current Mets were bigger but I had no new ones. I think what I'm going to do is start zytiga, when that fails go to taxitore, then when that fails go to Xtandi.
I don’t want to confuse as TA has laid out standard protocol very well. However, there is an exception. Clinical Trials. Look for a clinical trial at a major medical school and research facility that is continuing chemotherapy with hormone therapy studies. I don’t know if there are any. Perhaps a continuation of the work done the late Robert J. Amato, DO. Or someone who uses his protocol in normal treatment.
Investigators have a wider drug use with different combinations than standard FDA approved protocols as TA wrote about. The six month trial I was in used all FDA approved drugs, but in different ways with different dosages.
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Symptoms when ADT no longer works?
Does ADT work for Gleason 9?
ADT and Docetaxel worked for treating the Prostrate and Pelvic Mets, but 2 out of 3 ain't bad 
Ending my break from ADT
Why continue LUPRON when ADT not working?
