When to Start Hormonal Therapy?

I have been off the board here for over a year now, thrashing around with a rising PSA, second opinions, and trying to locate a hospital with one of the more sensitive PSA tests.

My PSA history is illustrated in the drawing above.

My PSA continued to rise in small increments after RP and then six weeks of SRT after recurrence. (Actually, not a recurrence because my PSA never went to zero.) My surgeon wanted to put me on monotherapy with Casodex immediately after my PSA went to 0.3 after SRT. I located another good doctor who recommended more aggressive intermittent HT with Lupron and Casodex. Another doctor recommended that I do nothing, unless I developed symptoms (Another disciple of Dr. Patrick Walsh?).

And last, a urologist who looked like she still belonged in high school read me a laundry list of available treatments. This was not very creative and a waste of $300. I have gotten more good advice on this site for free. (Thankfully! Absolutely no sarcasm intended.)

Finally, after almost a year of PSA testing every two months or so, I finally went with my surgeon and the monotherapy with Casodex after my PSA hit 2.0. The effect was immediate and dramatic. I just hope that it keeps working for a while.

I am not sorry that I waited. Rather than go on HT a year ago, I wanted to wait and see just how agressive the bandit was. In the end, I just went with gut instinct and pulled the trigger at 2.0 with my original doctor.

Since the end of March 2016 my PSA has steadily dropped: 2.0, 0.3, 0.1 to < 0.1 (not detectable). I am going to one of the best, most progressive hospitals in the Tokyo area, but for some reason they won't go over to the more sensitive double-digit PSA test.

I should also mention that I am a great fan of Dr. Snuffy Meyers. I have been on his diet for almost two years now, and though I continue to work, my schedule is flexible enough to schedule regular exercise. I am also taking his recommended supplements: Vitamins D, E, Fish Oil, and Calcium.

I gave up my search for a hospital that would give me the more sensitive Choline Pet Scan. My PSA was so low there was only a very small chance they would find anything. And even if they found something, they were going to put me on HT anyway. So, what was the point?

Side effects from the Casodex (one 80 mg tablet daily) started almost immediately. Within 10 days I started to experience mild breast pain and slight enlargement. Luckily, neither effect has been too severe. Another stroke of luck: Not one hot flash. There is some fatigue, though, more like the third day of jet lag after a 13-hour flight across the Pacific that never goes away. Everyone reacts differently, and for now, I consider myself lucky. After 5 months, I do not really expect side effects to get any worse.

Thanks to everyone who contributed to this thread with comments and advice. I just wanted to let you all know how things are working out, and hopefully, this experience will be of some use to someone in a similar situation.

Not finished here yet, not by a long shot.

VascodaGama said:

So, what was the point?

Yank

Thanks for being back to report advancements in your case. I like your "story" and relate it in many ways to traits in my case. Though, I wonder why after waiting for the increase of the PSA, you did not pursue the choice in having a PET image exam. And I ask; so, what was the point?

I do understand that you can at any time in the future try getting such an exam, probably even with better techniques now at the drawing boards, but you had the chance to locate the metastases while at a clean PSA level. I hope that the many reading your story do not take your case as the proper way. I think that one should continue one's treatment but coordinately.
Please note that I am not suggesting that you did wrong. I am stating that I believe that one should look for the ultimate way to deal against the bandit, and that includes all possibilities in eradicating it for good. To such extent one needs to locate it to kill it. In any case, all survivours should follow what they think it best to them.

You did not share details of your HT protocol. Can you tell what does your doctor recommend in regards to the length of the period on drugs? How long is he expecting you to be on 80 mg Casodex? Is he planning to have you treated intermittently (On/Off periods)?
Is there any plan to increase HT blockades with agonists and/or 5-Alfa Reductase Inhibitors?

Treatments involving a solo blockade with antiandrogens (like Casodex) are much linked with earlier refractory cases. The fact is that antiandrogens do not eliminate the testosterone (T) in circulations (cancer feeds on the stuff for survival) and instead it blocks the T feeding by gluing itself stuck to cells androgen receptors (AR) the mouth of the cancer. Without food being absorbed the cancer enters into indolence and stops growing. This is the good scenario. The bad is that cancer is prepared to survive (Darwin's principle of survival) and it mutates its AR to survive on tiny quantities of the stuff or even starts feeding on the antiandrogens (readily available with 80 mg daily intakes) because these drugs are made of the same biostructure as testosterone, proper for absorption by the cancer. In such scenario, when the PSA rises the patients may have began his refractory status and the antiandrogen should be stopped immediately (AAWR). I hope your urologist does know something about this behavior. Medical oncologists like Myers are the ones to follow.

You can read details in these links;
http://pcri.org/-aawr-the-anti-androgen-withdrawal-response/?rq=androgen%20refractory

http://www.hrpca.org/

Hormonal therapies are palliative and do not lead to cure. However, so far you have experienced fantastic results with the Casodex and that indicates that the type of PCa cells in you is hormone dependent. Such provides you with a series of reliable weapons to fight the bandit during many years ahead. You need to be vigilant and strike with a newer drug when needed.

Hormonal treatments affect bone health. Myers' recommended diets try to address that fact. I would recommend you to include a DEXA scan done annually (not typical in Japan). Also have the lipids checked timely together with heart health exams.  Urologists never discuss about these extras. You really will need help to pursue those preventions under the Japanese system (GP physician) or will have to do procure out of the system.

Best wishes for continuing good results.

Vgama

 

Vasco, thank you for your comments.

I gave up pursuit of the more sensitive PET scans in Tokyo because I was not confident that the tests would find anything with such low PSA numbers. 

I had a plan to go to the US this summer, and was planning to schedule a consult with Dr. Meyers in Virgina for a second opinion. However, I have to go back in the hospital soon for another operation to get a hernia repaired. This is my second repair job after Da Vinci surgery two years ago. In the meantime, I have changed my diet, following the recommendations in Dr. Meyers books, and gotten on a regular exercise program.

I am well aware that Casodex will probably stop working. My doctor (a urologist) wanted to at least get me on Casodex right away. The hospital does not have a strict protcol for intermittent therapy. They seem to favor Step Therapy where they step up to the next drug once one wears off. I had a consult with another doctor who runs a more aggressive HT program with combinations of drugs on an intermittent schedule. Actually, this other doctor and my present doctor know one another and are on good terms.  Once I get the operation done, and hopefully after I get a consult with Dr. Meyers, we can work out a sensible program.

My doctor is Japanese, of course, but he did his residence at Baylor University, Texas, and practiced another 5 years in the US. Believe me, I am being vigilant. I realize this sudden drop in my PSA due to the effect of Casodex is not a permanent fix. I am fairly confident that my doc is on top of things.

Thanks for your comments regarding testosterone level testing, DEXA scans, etc. Good information to have for questions during my next consultation in November.

Good luck to you, sir. And Best of health

Thank you again for your help.