Those that followed me - metastatic at 57, chemotherapy and hormone therapy clinical trial, stopping Lupron/Eligard in February 2010, and starting dose testosterone replacement on Androgel in 2011. Four weeks ago I stopped the gel and replaced it with 0.4 ml of Testosterone Cypionate inter muscular twice a week. The reason - the gel contributes to visceral abdominal fat as does low estradiol.
Labs are in. PSA, <0.04; T, 1477. Losing fat inches....... we will see what’s down the road.
Ron, the answer is complex and starts back in 2003 and 2004. You would really have to read my previous postings. Some say, antidotal, I say different recognizing that this disease so varied in terms of detection and early treatment. All the new silver bullets developed since then were in my arsenal of weapons, just not needed for me. I shot for a cure rather than palliative longevity. I also recognize that there were risks. I admire the research done by Nal and his team. It is completely different than my direction. However, it is working.....
If anyone had said that I would see 75 back in 2004, I would not have believed them.... the numbers then said 2 to 4 years; maybe 5. My guy said that he could buy me ten years, I jumped on it. Face years late, he said another ten years... Five years later, he said you are cured.
Anomalous, essentially there are no generic standards that apply. Simply my treatment path and continual life as a guinea pig for research. I was able to benefit from academic research. I never took a “vacation”, just took heart in that I was killing all the little bastards. I wish you the best.
Hi excuse my ignorance I'm on firmagon stage 4 and various supplements for over four years some of the cancer has vanished still in spine iliacs not in lmphnodes now prostate appears normal however my understanding was t drivrs it how are you on tvinjections thanks
Johnscats, are circumstances are vastly different. I was most fortunate to be accepted into an ultra standard of care clinical trial early on which, in my case worked, and able to stop Lupron/Eligard six years later at the behest of my research medical oncologist and professor of genitourologic cancer.
My good friend Cmrdata was on the same trial. I believe our differences relate to how long metastasis was in place. In my case, a matter of weeks, not years. My treating doctors were all in academia and research from primary treatment to metastatic treatment. Therefore my history was followed frequently with blood work and scans. Again I was most fortunate.
I wish you the best in killing the little bastards.
No. Not at all. I do not start any method of testosterone replacement until a year after I stopped Lupron and only because testosterone did not come back on its own; nor has testosterone ever come back on its own since February 2010.
I draw no inference that testosterone killed any cancer cells. My situation is vastly different than most. In 2010, my guy talked me into stopping Lupron and a year later in adding low dose testosterone replacement therapy. Simply, “I can’t find any cancer in your body. I know that you are a realist, but what do you have to lose? If PSA rises, then we simply re-start Lupron therapy.” This coming from a man who spent a career in research and a professor of genitourologic cancers at two different major schools of medicine. Baylor College of Medicine and McGovern School of Medicine at the University of Texas. I willing and whole heartedly embraced academia and research in 2004 as my alternative palliative care was very bleak. Becoming a guinea pig for research was simply my best route.
I understand that I have been most fortunate and my experience most likely can not be replicated in today’s treatment for metastatic prostate cancer. I am so happy to be in the group of nine that experienced a complete response.
Understand that I had been on Lupron/Eligard for over 6 1/2 years; during and after the six month clinical trial. No vacations; not even the thought of a vacation.
Thanks....did you receive chemo prior to stopping lupron? I understood tHAT cheom was part of the trial? Have they followed up on all men on the trial and published results? Available online?
Good news with your “remission/cure”. I am still on Zytiga (generic) for 46 months now. PSA <0.1 and T still at castrate level without using Lupron or other T suppressor.
George, in the clinical trial I alternated Taxotere with Adrimyicin. The treatment plan is posted under my name. Within that said two points. 1st an on call medical oncologist stopped by after my knee replacement because my blood count numbers were out of whack. After I explained that I had chemotherapy, he agreed that my numbers weee “normal”. He asked what kind of chemo. When I got to the Red Devil, he cut me off and said that it would never work for PCa. I brought him a copy of the trial the next day. 2. The standard treatment for metastatic breast cancer at College of Medicine is exactly what I had in the trial. Note Dr A researched and taught at Baylor College of Medicine. Dr A told me that breast cancer and prostate cancer are closely related; more so than most think.
Medically and Scientifically I am not qualified to say. But, if I had to do all over again, I would not change a thing and use the protocol that Dr A developed.
Did the protocol work? It did for nine and gave longevity to a host of others. The main difference is that I started the trial within 6 weeks of being diagnosed and confirmed with Stage 4. And I was closed followed each month for the previous 8 months. In other words, I was very early.
Recognize that academia and research has a greater latitude in treatment than community oncologists. Also that specific research takes dollars to fund. Almost all dollars in prostate cancer research goes to palliative treatment and not cure.
CmdrData - nice numbers! I’m wondering what doctor prescribed abiraterone without Lupron (or some other form of ADT) for you? Most places make you take ADT in combination with the abiraterone.
I was onnLUPRON DEPOT from Sept 2019 till June 2021. Then stopped per mutual agreement from my MO(maybe he did not totally agre) but i’m stopped for now.Hope that helps
SEs from ADT is well known. No libido, hot flashes, general muscle weakening and on Zytiga/AA elevated blood pressure (systolic). It is your decision if you want to take Lupron or not. I chose not to at this time. Took them several years ago but it really doesn’t stop PC from returning.
Good to hear that. Have been wondering how well abiraterone alone can work to produce castrate T long term without Lupron. Only question regards likely high LH circulating. Seems to be no problem for your case.
Congrats!
What dose of Androgel were you using? What was your free T if you don't mind sharing?
Is the cypionate 200 mg/ml - so 160 mg/week?
Since you are doing this long-term then IMO cypionate is the way to go. Cheaper and a lot simpler. Do you use an aromatase inhibitor?
Thanks
• in reply to
Thanks RSH. See comment to Nal. It’s is different regime which you are using. Our circumstances are vastly different. I have been undetectable for a little over 16 years. All I am trying to accomplish is not to kill cancer cells, but reduce visceral fat; namely abdominal. 0.4 ml twice a week of testosterone cypionate 200.
Damn straight it’s cheaper.... $600 vs $50...... at this point, I have not added an inhibitor. I do take the following supplementals now: DIM SGS, ADK 10, Methyl B12 complex, and Iodine.
I’ll have been answers at my next blood draw in two weeks. However, fat is reducing. Goal is measured in inches lost and not necessarily weight at this point.
I do not want to mislead anyone. However, most have different circumstances than me. As my Gastroenterologist says, T fluctuations by gel is not doing anything to help me, only hurting in the long run..... case in point, eleven years of gel was not getting the job done,
I wish you the best,
GD
Hi Nal, I will attempt to answer in laymen’s terms. I fear that most do not understand. Please feel free to jump in.
First, numbers from January 4th. PSA, 0.041; Free Testosterone, 2.6; Yotal Testosterone, 33; Testosterone, Biodegradable, 3.7; Estradiol, <15. Next number comparison in about two weeks, what this means is that PSA is undetectable. Testosterone varies every three days depending when I administer 5 g of Androgel. Means E2 also unstable. Means that topical testosterone gel is not metabolizing correctly and adding visceral fat, I am, as expected hypogonadol. This means that I will never get rid of my visceral fat.
Injecting Testosterone lasts for about 8 days giving Estradiol a chance to do its thing. I an suppose to wait three days for blood work. In this case, I only waited two days. Next tests will three days post injection.
This therapy is not designed as “high T injections” spaced out over 2 to 3 weeks. For example my brother takes 1 ml or if you prefer 1 cc every three weeks. I am taking 0.4 ml twice a week in an attempt to level and give my metabolic rate a chance to stabilize producing Estradiol a chance to be normal and do its thing.
Nal, this make sense in layman’s terms?
• in reply to
What was your doctor's determination as to exactly what you needed to be at before starting TRT of any type? Undetectable for a certain period of time? Or what?
Mike,Appreciate you keeping us posted. There seems to be a real trend toward mBAT, with you as one more of the success stories.
Guys talk about Huggins papers being misinterpreted all these years with the SOC to keep T at castrate levels. Now it seems more and more likely that Supra Physiological Testosterone (SPT) can keep Advanced PCa in check, while allowing us to feel like Men again!!!
Guys talk about their wives noticing positive differences in attitude and happiness.
TAllen notes it should only be done with strict guidelines under an experienced Oncologist, or in a Human Trial. I agree with him here (and with most of his thoughts). It feels to me that we are in the infancy of something that may one day become the Standard of Care (SOC) for many men w APCa.
I have been unable to connect with an MO that is open to BAT. My goal is to remain hormone sensitive for as long as possible using BAT or any other ideas.
Nal, I may have gotten it backwards. I at one time thought as you do. I’ll have to wait two weeks to find out more. Will keep you posted as I value your input.
So, were results from this trial ever published? with the exception of post-treatment T administration, isn't chemo + ADT now SOC , or nearing SOC, for metastatic men?
Nal, Quick update. I won’t have an explanatory answer until Mar 2nd, but today I was with my Medical Oncologist. She is also a Professor of Genitourologic Oncology and Researcher. Essentially she had no issue with my change to injections and additional supplements. Not surprised at all with the very high T and 0.04 PSA. Understood completely with my screw up doing the two day rather than three post injection for blood work. Spent 30 minutes with her. Very pleased with my historical numbers.
GD
Nal, you got it exactly correct. Too low Estradiol and too high Estradiol builds visceral fat. The trick is a balance with testosterone.
I went to my last visit with T at 1023 (three days post 0.4 ml injection) and 54 E2. I was concerned that Estradiol was too high according to Quest Labs and various Internet sources......... Dr G, chuckled and said the recommended numbers are based on Testosterone at 800. You are fine. Your ratio of E2 to T is excellent.
Now why the Androgel contributed to visceral fat, with the short half life, T never got high enough to balance. For example, the 1st week of January T was 33 and Estradiol was <15 causing an imbalance or visceral fat.
I do take DIM SGS+ and Methyl B12 too help synthesize E2.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Importance of Early Detection-Current Numbers
Persisting adverse body composition changes 2 years after cessation of ADT for localised PCa.
