My guy is on the Stampede protocol for Stage 4, Gleason 9, brca2, mCRPC. Using lupron, abiraterone and prednisone, been holding his own on this for about 2-3 years. Recent labs were unremarkable and had no indications of cancer spread.
HOWEVER, my guy progressively is noticing indications that his body is producing testosterone, even though hiss blood serum measures none. A nocturnal erection, a morning erection, light hair growth on his chest - he also has noticed, as have I, that his will to do various tasks just isn't there like it used to be. The fact I am writing this post instead of him leading the charge on this is a key example.
Could the cancer be starting to produce its own testosterone in a way not measurable under SOC, and are these symptoms possibly indicative of this?
Is there a best oncologist to see in this scenario, mainstream doc or outside SOC, someone who will have his thumb on the pulse of this course of symptoms and how to proactively and aggressively get on top of a possibly deadly situation to buy us some more time?
All thoughts and recommendations welcome
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lss65
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The production of testosterone in his testis is blocked by the ADT. Zytiga blocks the production of testosterone in the whole body including the cancer.
so, I'm learning on the fly here. If testosterone production is blocked so effectively, how does the cancer eventually start to grow again in many men?
Prostate cancer mutates to live in low T environment. Castrate level of T should be under 20In my case Abiraterone and Xtandi failed, so had a rechallenge with another round of Taxotere chemos, six years after I had 15
The resistance to abiraterone is a complex process, mainly caused by mutations of the androgen receptor. Perhaps this article could be of interest to you:
The cancer eventually becomes hormone resistant, because it learns, or mutates and produces its own testosterone. PSA and Testosterone numbers will then climb, typically for most patients that become CRPC, and then transition to mCRPC as it begins to spread.
Yes i understand. I think to the average patient the expectation of a new treatment followed by failure within a relatively short period is the major issue.
If blood test is showing zero or very low (less than 20) testosterone, it means his testicles and adrenal glands are not producing enough testosterone. Means he is castrated.As for Prostate Cancer cells producing their own testosterone...it only happens in very very advanced stage of prostate cancer. And. .even then ..this testosterone will find its way in blood and will show in serum testosterone test.
If he has more testosterone, he should be having more energy, more motivation and better physical activity. Not the other way around.
As for morning erections, nocturnal erections etc. ...mind has memories of sex in past and these memories can come back to surface and cause these mentioned acts. People have sexual dreams and in that state. .can have erections ..even with zero testosterone.
Low T still can maintain some desire BUT takes away capacity to perform the act.
Hi lss65.
Seeing as you mentioned "outside SOC" perhaps he might consider trying some supplements that are relatively inexpensive and non toxic which I've been using myself for 4 years.
If you click on my avatar picture you’ll be able to read my bio.
You might also be interested in this PUB MED case report. It's about a terminal pancreatic cancer patient who had to stop his chemo due to treatment intolerance and started taking two supplements instead.
Unresectable Pancreatic Adenocarcinoma: Eight Years Later:
I know that article is about pancreatic cancer and not prostate cancer, but if there's anything that "might" be able to help with that truly dreadful disease then it just might be worth trying for advanced prostate cancer too.
One of the supplements that patient took was Essiac which is an old herbal remedy that's been around for almost a hundred years.
I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac is effective, but I've been taking Essiac together with CBD oil for 4 years and am very happy with my results so far.
When I stopped all conventional treatment in early 2017 due to severe side effects my oncologist predicted my PSA would keep continually rising and my mets would continue to spread.
However, 4 years later my PSA is almost the same as when I was diagnosed December 2016 and my 2020 PSMA PET CT scan was better than my 2016 PSMA PET CT scan.
Here's a link to the post I started on this forum about my own cancer journey.
Greetings Iss65, Would you be kind enough to give us more info about the boss?
Please tell us his bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
All info is voluntary, but it helps us help him and helps us too. When you respond, copy and paste it in his/your home page for his/your use and for other members’ reference.
I will get all the information from him and report back. It's only been recently that I started paying much closer attention to his situation as I realized he was becoming more passive about it, so don't have all the stats off the top of my head. The lupron injections every 3 months really seem to take more and more out of him, with a somewhat predictable cycle of various side effects hitting him harder each go round.
The info is not critical.... but helpful...... so don't fret. Alot of members complain about Lupron especially loss of memory. Take care of him and hopefully he will win this battle.Regards to him and to you.....
I was passive like your husband between 2012 and 2014 and then my wife scolded me severely because I was not fighting the disease, I seem to be capitulating to it. I had extensive research in my background and possess some skills and she felt I needed to apply the skills to natural supplements. After some false starts I found “IP6 and Inositol “, a book by Dr. AKM Shamsuddin of the U of Maryland Med School. Read it or better yet have your husband read it. The men on this site are not passive but warriors. The challenge you face is getting some of this warrior spirit infused into your husband. Good luck!
Thank you. He was very active in pursuing aggressive treatment for his cancer for a number of years; I feel like, and he's confirmed, that lately his will is just taking a hit. I am hoping that once we get through a series of scans including a PSMA done at UCLA that he will rebound into feeling more active with the new information we will have. In the meantime, I am reading up on options in case it turns out he has had progression, or in case he has progression in the near future. Hopefully, with more information under his belt about what various aches and pains he's been having mean, he'll get more focused again on his own care. I feel like the last 2 lupron 3mo./4 mo. injections took a lot out of him, and he even mentioned starting to think about an orchiectomy so he would get rid of the increasing lupron side effects of cycling moods and fatigue. I myself am a 7 year veteran of the lyme/tickborne illness wars, so the warrior mindset in this forum is familiar to me, and is the attitude I took to heal both my son and myself from complicated tickborne infections and related issues. I appreciate your wife taking you in hand and scolding you at one point, and I may find that will become necessary in my case as well.
After my robotic prostatectomy (11/18), and Abiraterone/Prednisone was no longer controlling my PSA (in just 6 months), my BRCA2+ discovered mutation resulted in me going on Olaparib PARP. It kept my PSA undetectable for 19 months before it started rising to 1.98 in the last 4 months. Testosterone is still very low while I continue on Eligard. Also stage 4 metastasis to pelvic bone, Gleason 10.
Now searching for next viable systemic treatment options, with 2 small spots found on recent (12/20) Axumin and PSMA scans. Possible clinical trial in my future.
Has your husband tried or been offered Olaparib, especially since it is now FDA approved?
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