Question... I had my last scheduled Eligard shot in early September. Originally was to be on it for 2 years as part of a clinical trial. As I’ve stated in another post, I had RP in June ‘19. 4+3 Gleason in about 2/3 of the cores in one side only. PSA 15.4 at diagnosis. ECE, seminal vesicle invasion, one of 12 lymph nodes positive. Got into an aggressive trial (radiation, Taxotere, Zytiga, IMRT) post op as was recommended. PSA undetectable since surgery.
Now, after letting me off Lupron/Eligard a year early, a urologist in the same center (Johns Hopkins) who is helping me with nocturnal frequency suggests HCG to assist with T recovery. He says my time to that can be substantially reduced.
Already I was excited to have my ADT cut in half and now this! But I am wary.
I gather that it’s not the same as replacement therapy but instead assists in resuming the body’s manufacture of its own T.
I should add that he is very much in favor of me checking with my MO who’s running the trial first.
So the question is, has anyone used HCG for this purpose, and if so what were your results? Or just general opinions too-might as well ask for those too, since I’ll probably get some anyway😀
I assume there must be plenty of MO’s who would advise against it, but I also understand the relationship of T and Pca continues to be an area of study and advancements.
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I've used hCG (two injections, a week apart) and 3 weeks of clomid to jump start my natural T production after taking T for a sports injury. It worked well.
Thank you Nalakrats. Well there’s the rub-supposedly it’s slightly better than even odds that I’m cured according to the team. I asked the urologist if faster rising T would also awaken dormant Pca cells faster. He didn’t think so, although it was unclear why.
I was similarly confused why I was let off the Eligard a year early-not intended as a vacation, but if I have to get back on I suppose it will have been just that.
It’s hard to get a straight answer out of anybody. I feel like a lab rat!
Will do sir. Your Gleason 9 and high PSA post op may be figuring into your MO’s thinking.
The Zytiga seems to have done what the Casodex did not, hardly a surprise. Did you have positive margins? PSA 31 post op does indeed suck. Your diet and workout habits definitely do not, well done.
My MO and practically every medical professional I’ve met with remarks on my apparent health and fitness. That’s nice, but if I hadn’t ‘complained’ (more like remarked) about the ADT side effects at 12 month follow up I think I’d still be on it
I think I said something like not wanting to do 2 years just because I was tolerating so well. That I was working out harder than I have in years to little effect. Also that penile rehab was about as interesting as cleaning the bathroom bc ZERO libido, which surprised me a little bc libido was very strong before, great sex life previously etc.
Did you tell your MO you feel ‘overall the same as when you started’? Maybe a factor. When they let me off, I felt like a squeaky wheel getting greased; actually was just telling the truth.
Again, I’ve had no real problems with it, but once I was candid about the sides their stance seemed to change completely.
Thanks. Forgot about the T surge, I started the Zytiga concurrently with the Eligard. Interesting about the B-12. I have some mild fatigue from time to time maybe I’ll try some.
Your markers look good, most importantly you showed your daughter that 17 doesn’t automatically confer superior fitness haha.
It’s a strange world this relationship between PSA and Pca, between testosterone and Pca as well. As that world becomes better understood (along with targeted therapy/PSMA pet etc) men like us will have more and better options in case of recurrence.
Also: yes I take Cialis 5mg/day. Nothing. Although I do get the occasional nocturnal erection. I take it out for a drive around the block occasionally, but as I said it’s purely perfunctory. I have confidence it will be fine if I can get some T back.
PCa has a biphasic response to testosterone levels. When it is very low (castrate = <20 ng/dL) hormone sensitive PCa is powerfully suppressed. But conversely high-normal to supraphysiologic T levels (>250-300) also suppresses PCa growth. It is the low to sub normal (but not castrate levels) which most stimulate growth and progression of prostate cancer. This is the basis for BAT therapies alternating castrate with high levels of testosterone that are currently undergoing trials. So it makes sense to me to use hCG to restore normal to high normal levels during ADT "vacations" as quickly as possible. I don't know about the Clomid but that may help the process too.
I like your thinking - I do not know your history but I have made the decision in advance that should I be in a similar situation I would opt for supra physiological levels of testosterone. My thinking is that I would rather live like a man for 5 to 10 years than like a non-man for 20 years.
I find your terminology of "like a man" and "non-man" offensive. Those of us who are on ADT are NOT non-men. I would have thought someone who has taken the journey of PC would be a bit more tuned-in than that.
Well, huh! You must live a very sheltered life. I opted to use non-man instead of woman - which I assume would have offended you, too. What term would you prefer I use for man boobs, loss of muscle mass, loss of bone density, fat gain, lack of energy, lack of libido, zero or near zero erections, hot flushes etc, etc, etc.?
How about eunuch? But seriously folks, when I see emails coming in I’m excited to hear HCG experiences and I get this crap instead. No grumpy old farts please. Non- man, castrated, let it go. Lives are extended by the stuff, at a price we all know that.
"But conversely high-normal to supraphysiologic T levels (>250-300)"
Not sure where you got those numbers from, but I would call those numbers deficient to low normal.
Normal labcorp testosterone range is currently 264-916 ng/dl and in 1995 when I was 43 the range was 348-1197. They lowered the range over time because the world population average levels of testosterone has declined over the decades for unknown reasons.
I get the symptoms of low testosterone when my level is below ~500 ng/dl, typically when I am off TRT my levels are 340-400 and with TRT I keep my levels at 600-1100, it has been as high as 2126 ng/dl.
BTW, I don't feel any difference between how I feel between 600 ng/dl and 2126 ng/dl.
Over the last 11 years at various times I have taken Nebido, clomid, HCG, testosterone undecanoate, testosterone cypionate, testosterone cream. I prefer Nebido / testosterone undecanoate, one is branded one is generic.
Yes the 250-300 level is low normal at best and not optimal replacement. But that is the approximate level that was termed “saturation “ in research on the biphasic response of PCa to T. Above that testosterone started suppressing PC cell lines’ growth. Below it growth was stimulated
Is the undecanoate longer lasting than the cypionate? Can’t get a prescription approved in the US. However I’m in Mexico waiting for the COVID vaccine to be available. So I’m stockpiling OTC testosterone gel for future use. My T is 90 and I have no muscle!
BTW, I have used HCG, and I am "fairly sure" it caused a substantial rise in my PSA, from ~2.5 to 5.6.
I have not been diagnosed with PC, but the rise in my PSA is obviously a concern for me.
The 5.6 PSA was 9/21/2020, I stopped HCG but continued on with testosterone undecanoate, I did a PSA blood test on 11/20/2020, while my testosterone level was 655 ng/dl, my PSA had declined to 4.6.
HCG works my minicing LH hormone put out by the pituitary, LH tells the testes to make more testosterone. Clomid works by blocking estrogen from signally the pituitary. The pituitary then thinks we are low on estrogen, and it puts out more LH to increase testosterone which is converted to estrogen.
The fundamental difference between testosterone injections and HCG is that a testosterone injection increases serum levels directly, while HCG indirectly increases testicular levels, eventually reaching the blood stream. In addition, LH receptors have been found in the uterus, sperm, seminal vesicles, prostate, skin, breast, adrenals, thyroid, neural retina, neuroendocrine cells, and (rat) brain, It is largely unknown what these receptor do. HCG will interact with them also.
EDIT: BTW, having HCG affect PSA isn't common, I have chatted with a few men who use HCG and they haven't had that problem. Though others have had their PSA rise while using HCG, they assumed it was age related, but I am not so sure. I really can't say for sure if HCG causes a problem, but for me is sure seems like it.
I haven't been diagnosed, but my PSA jumped from 2.4 to 5.6. I was on this board because it's the most knowledgeable board I have seen regarding prostate issues and prostate cancer.
My urologist had wanted to do a biopsy when my PSA was 4.1. he doesn't even know about the 5.6, now PSA declined back to 4.6.
I am not in favor of a biopsy since it isn't a very definitive test when it's negative. They will want to do another test, then another etc if they turn out negative but your PSA is rising.
PSA has jumped 30% in 2 months, doubling time less than 8 months. PSA has also declined, but not as fast nor as far.
I doubt I have PC, since my PSA % free is usually between 20-27%, and a selectMDX test indicated a low chance. Just trying to figure out what is going on with my PSA and prostate in general.
But while I doubt I have PC, it sure is possible, and given how my PSA levels have been jumping around, something odd has been happening.
So you’ve been injecting yourself with testosterone for years, your PSA levels are ‘jumping around’, in the 5 range and you’re hanging out in an advanced prostate cancer forum while refusing a suggestion of a biopsy from your urologist. I can’t identify with this, but I sincerely hope it works out for you.
Actually, over a decade on testosterone, at first I was injected by a doctor, but that isn't practical. I did take off nearly 2 years to reestablish fertility as injecting exogenous testosterone shuts down your natural production as well as sperm.
The first 5 years I was on nebido only, my psa stayed rock steady at 2.4, which is my baseline from 1996, the first time I did a PSA blood test when I was 43.
After the 2 year sabbatical I restarted nebido but added in HCG.
That was when my PSA first rose. I kept using testosterone continuously since 2018, but when I added in HCG, PSA 2.4 > 4.2 stopped HCG and PSA fell to 3.4, added back HCG and PSA rose to 5.6, stopped again and PSA fell to 4.6.
So it seems like HCG causes my PSA to rise, while various testosterone products don't have an effect, but that isn't proof. Perhaps more important, it doesn't tell me why?
The DREs I have gotten showed an enlarged prostate but no signs of cancer from the DRE. It was estimated at over 50 cc a year ago.
Given my age of 68 and known enlarged prostate, the PSA didn't seem so unusual to me. BTW, PSA hit 5 recently, then 4.15. then 5.6, then back down to 4.6, and I do these PSA test often, sometimes every 2 months, so I get a lot of data.
I also ordered a hCG,Beta Subunit,Qnt,Serum test, my HCG serum level when using HCG was 3.0 mIU/mL, which is top of the range for a male. I bot an order to retest HCG serum levels which I will do in Jan, it should be at or near 0 (zero).
I plan to retest PSA again in 2 months, if it stay down, good, it it rises again I will check into can I get a MRI guided biopsy, and I would like to get a more exact size of my prostate. My next scheduled appointment with that urologist is Jan 25th.
The urologist only suggested a biopsy BUT when I inquired about other tests he suggested a SelectMDX test instead, that showed very low risk of cancer.
After the results of that test the urologist wrote me a recommendation I could continue on with testosterone, I need a written opinion from an urologist as I was using a tele-health T clinic and they required a written opinion if your PSA is over 4.0.
Since the subject of this thread is about HCG, I thought to offer my experience with it.
I do appreciate the input, I was not implying you should not be here-although there are those on this site that would.
As you probably know, men with Pca on ADT, particularly the LHRH agonists like Lupron clamor for alternatives, take holidays from it (ill-advised and otherwise) and just generally bemoan their loss of testosterone and all its effects.
Thus anyone who is taking exogenous T, on holiday, BAT therapy etc is of keen interest.
I’m not separating myself from these men exactly, although I can say I did not see retaining testosterone as a non negotiable a quality of life issue, due to the proven benefits of ADT in advanced Pca.
Easier for me to say as the side effects are minimal for me predominantly due to my exercise level and diet, and that sexual function no longer occupies the pole position in my life,...I swear I just made that up-pretty good although I say so myself.
If it had been suggested to me by my MO to complete 2 years of Lupron instead of letting me off a year early I would definitely have done so.
Nevertheless I am excited to see my libido return along with the other positive changes from getting off ADT. What I wrangle with a little is whether priming the pump so to speak with HCG (dang, I did it again!) will wake up any residual cancer sooner.
In the end, best to just find out and get on with it I figure.
With the relationship between testosterone and Pca remaining controversial, it’s hard for me to be persuaded in any one direction at this point.
I rarely post here precisely because I have not being diagnosed with PC, though it's possible I will be.
I do have a fairly good knowledge / experience with TRT, various hormones like progesterone, pregnenolone, DHEA, low T, aromatase inhibitor and how doctor's behave or how they are limited by policies of their medical group / health insurance mandates despite their individual opinions. I also spent 10 years with no health insurance at all, so I got experience getting any treatment I needed a while avoiding unexpected sky high medical bills. I am blessed with overall pretty good health, something that made me more comfortable with no having health insurance.
I can appreciate what the effects of Lupron must feel like since I was dealing with low testosterone since I was 40, now I am 68. Low enough so that when my testosterone initially dropped sometime in 1996 I sought out medical opinions as to why I was so lethargic. My T measured 376 ng/dl, no one told me that was low for a 40 year old, and I have no idea what my baseline was when I was younger.
But I have no idea of how much worse it might be to go below 50 ng/dl which is where Lupron would put you.
BAT therapy requires supraphysiological testosterone levels 5-10 times higher than normal, which means well north of 2000 ng/dl. The only sure way to get that high is with testosterone injections.
A Lupron "holiday" implies a short term break, while things like Clomid / HCG could take longer than 2 months to actually start to raise your T to whatever is normal for you. Those drugs are good if you want to restart your natural T production, though it really depends on what your "normal" level of T was before any treatment, I have taken both Clomid and HCG, my experience would be that my T would go ~400-450 ng/dl. Keeping in mind that naturally men's T decline 1-2% a year, so restoration might be lower than what baseline T was before Lupron treatment.
IMO it is good to know your baseline T when you are younger and healthy, or at least before you embark on something like Lupron, so you know what normal is for you.
I didn't feel any different when my T got as high as 2100 ng/dl, but it was more a spike up for a few days than anything longer time. There are almost no studies of supraphysiological testosterone levels in healthy men. The only study I am aware of is the following.
The Effects of Supraphysiologic Doses of Testosterone on Muscle Size and Strength in Normal Men
Most interesting and controversial, above 2000 ng/dl men get muscle growth even without any exercise. I doubt short term use of supraphysiologic levels of T are going to cause any problem, though longer term use (greater than say 6 months) is likely to cause various problems like an enlarged heart / too high of HCT, water weight gain, etc.
After reading stories on this forum, I pray I never have to request advice on advanced prostate treatment options. I am impressed with the fighting spirit of those dealing with these issues.
Sounds like you’ve done well for yourself over the years! Knowledge is indeed power, but I had no idea the lack of consensus among professionals when it comes to this. There seems to still be a lot of standards of care that are antiquated and some guessing games even with all the advancements.
I was 690 total T before I began treatment at age 64. Lupron etc has rendered it not just under 50 ng/dl but under ten, which is standard for LHRH drugs now.
Even though I had a prolific testosterone-driven life in every sense when I was younger, now It’s almost as if I can’t remember having normal T, which is fine. I’ll be thrilled obviously if I’m cured or able to enjoy a remission of many years. But bottom line is I don’t want to get overly excited about its return as it may well be short lived.
Making the best of what remains, and appreciating it is my main focus each day now. Great luck to you!
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