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Testosterone Replacement after Successful Seeds, EBRT or Radical Prostectomy

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Posted 3/8/2011 12:41 AM (GMT -8)
Hi Everyone
Has anyone gone on TRT after successful treatment for PC and can you share you experiences.

I am 63 with a much younger partner GL 7 3+4 on three months of ADT to have seeds this month in Seattle. My T went below 20 and PSA .09. I got nutty with Lupron so my doc Stephen Strum dropped it. My total testosterone will be coming back a little for about 40 days prior to getting seeds as the Lupron wears off, but I will stay on Casodex and Avodart which will block the effects of testosterone on the cancer until after the seeds are implanted and maybe a little after. In the long run if seeds give me a low stable PSA after two years I am planning to supplement my testosterone to youthful levels with testosterone gel and possibly Human Chorionic Gonadotropin.

I did this before I was diagnosed with cancer and though it probably made my existing cancer worse it made me feel emotionally, physically and sexually wonderful--it also made my PSA jump which alerted me and got me to get a biopsy which has allowed early intervention. Paradoxically testosterone supplementation can stimulate existing PC but normal to high levels without the presence of tumors appear to help prevent PC, safeguards bones and protects from heart disease. There are studies now showing testosterone supplementation safe and helpful to men who have had successful radical prost and radiation therapy with stable PSA's. It restores a sense of wellbeing etc , but the data is new and controversial. I asked Snuffy Myers MD about it at the LAX Prostate Conference and he was adamant that guys with PC should never take testosterone. He may be right but there is overwhelming evidence that a guy with low testosterone to begin with is much more subject to PC and heart disease than a guy with normal testosterone. There are now using very high levels of testosterone supplementation to treat some guys with advanced prostate cancer. I dont think we know the whole story on testosterone yet. Its certainly not simple but I assue you it makes me feel like a new man: alert, strong, ambitious, good erections and desire, skin irritations go away, muscle comes back without aggressivenss or irritabiity. Of course this is just me.

Have any of you tried testosterone supplementation after treatment and can you share the details of your situation and how it went?
Best wishes
Richard
Posted 3/8/2011 5:01 AM (GMT -8)

Hi Richard........interesting post. I am a little over two years post surgery for PCa.  My "T" levels, while not abysmal, have been running in the mid 300's since surgery. I've had all the typical symptoms that you read about. My uro, who was reticient to supplement, agreed to do it once I posted an undetectable pSA at 2 years. I just passed day 45 on bio-identical testosterone cream applied daily at 50mg/ml strength (entry-level strength, but just getting my uro to consent was part of the bargain). Working in conjunction with a compounding pharmacy and am also taking 25 mg of DHEA 5 days per week. So far, minimal improvement, if any. I got lab work done 3 days ago, and the prelim results should be here in a couple of day. 3 month PSA check in another 5 weeks---I have read all the studies that you refer to, pro and con, and encourage you to read books by Morgentaler and Shippen, if you haven't done so already. How was testoterone administered to you? Gel, cream, shots, pellets?

There is another guy on the Forum here who has/is being treated by Eugene Shippen. Perhaps he will chime in....also, there are guys here who are much farther down the road with "T" supplementation than I am, and could provide more long-term feedback. Keep us posted, and we'll continue the dialogue.

Arnie in DE

Posted 3/8/2011 8:52 AM (GMT -8)
Richard,
You might want to check with Dr Libowitz in LA. His partner has been doing a lot of work on T replacement for PC patients with some pretty good results. ( Compasionateoncology.com)
JT
Posted 3/9/2011 12:02 AM (GMT -8)
Thanks Arnie and John
I used Testosterone gel from the LEF.org compounding pharmacy prescribed by a local doc. Also injected HCG (Human Chorionic Gonadotropen) in small 100 unit doses twice a week to keep the testes producing T after the gel tended to shut down the testes and took .25 mg of Anastrazole sx week to control estrodiol. After a few months we really got it down and I felt magnificient but there were a lot of lab tests, tweaking and experimenting but when we hit the sweet spot it was like being 30 years old again for energy and sexuality. The injection of HGH I did my self and it was essentially painless. Overall we were following the John Crisler, DO protocol for T supplementation. He's the most knowledgable about that but I dont think he knows anything about PC.
Posted 3/9/2011 12:04 AM (GMT -8)
Arnie
Do you know if Libowicz reputation is good? He's near me but he sounds a bit evangelical about his treatment.
Posted 3/9/2011 4:04 AM (GMT -8)
Well - John T's repuation is great here... Have a feeling that if he mentions Libowicz then that would be a good thing idea
Posted 3/9/2011 4:21 AM (GMT -8)
Richard.....I don't know much about Liebowitz other than what I've read here, and the info from his website. Interesting stuff about supplementing castration-resistant men with PCa on high-dose TRT......his charted results kinda turn conventional wisdom on it's head.--------I'm familiar with Chorionic Gonadotrophin supplementation, as Eugene Shippen espouses it in his book as a first-line treatment before actual "T" supplementation to re-ignite the pituitary gland to produce more LH and stimulate the Leydig cells into producing endogenous testosterone. But my local uro wasn't that deep in the weeds on this stuff (and techincally, it's an endo issue) and I was eager to try something/anything. By HGH, are you actually saying you self-adminstered Human Growth Hormone, or was that a typo meaning the Chorionic Gonadotrophin? What strength was the gel you took? I'm familiar with the aromotase inhibitor protocol, but we haven't gotten that far yet. Still awaiting my first round of tests to see where supplementation has taken me. Symptom -wise, it hasn't done much if anything. I suspect there may be conversion to estradiol happening. .....I'll have to check on Crisler protocol. Eugene Shippen is in Reading, PA and is about a 1 1/2 hour drive from me. Pending lab results, I may be making a phone call shortly......let's keep talking.

 

Arnie in DE

Posted 3/9/2011 8:34 AM (GMT -8)
Hey Richard,

I was on TRT for many years before cancer. My level stayed in the 500s and I had a good quality of life.

After the prostatectomy, my uro would not let me take T shots anymore. At that time I had been taking 400 mg injections every two weeks. Stopping cold turkey like that put me into a deep depression. My T level was 48. I changed uros to one that would prescribe TRT again. At that time I had been about six months or so out of surgery. Within days I was back on top of the world again.

Now I am on 200 mg every two weeks and my T level is in the 300s. I am comfortable with that.

Now, if I was normal and had not had shots before surgery, my T level would probably in the 300 - 500s. By supplementing it after surgery I am in the 300s.
So a normal guy's level is about the same as mine with TRT. How come his T causes less recurrence than mine? My first uro just looked at me with a blank stare and changed the subject when I asked that question. By the next day I had an appointment with another doc.

Jim
Posted 3/9/2011 6:51 PM (GMT -8)
Hi JT
Sorry I addressed the question about Liebowitz to Arnie. I realize you made the suggestion. I called them today in LA and they wanted $525 cash to do an initial evaluation and would not accept Medicare for it so I am pausing to think about it a bit before jumping in to see him now before my seeds at the end of this month. Also I was steered to his partner Turner I think his name was which is cool I guess, but I am wondering what you think about his approach, since you are a major veteran of this site and have had seeds and IMRT? You are now 1 1/2 years post treatment with stable PSA. Have you considered TRT for yourself??
Best
Richard
Posted 3/9/2011 6:58 PM (GMT -8)
Hi Jim
Did you have any change in PSA from your after surgery TRT? Can you explain more your question "How come his T causes less recurrence than mine?" Not sure what you mean by recurrence. Im glad you found a doc that wants to work with you on TRT.
Richard
Posted 3/10/2011 12:39 PM (GMT -8)
Yeah Richard,

My PSAs have all been zero since surgery.

My question (that my first uro ignored) is if a guy not on TRT has a normal T level after surgery say 400 or so then why am I more at risk with TRT that puts me into the normal range.
Posted 3/10/2011 10:52 PM (GMT -8)
Hi Guys

I am down and bummed out tonight despite finding some interesting articles on our topic. Im really missing my sexuailty and afraid it aint coming back for a long time.

http://www.medscape.com/viewarticle/521214_3

A good current article on the safety of using TRT when a guy is considered cured. The issue is when is a patient considered cured-- at 0 psa and negative post surgery biopsy for ?? many months and non progression of psa nadir after ??? number of months for BT. My BT guy Peter Grimm suggests waiting two years post BT to use TRT. The problem is I have been on ADT for three months and that can produce hypogonadism for up to a year (4-12 months) or maybe permanently without TRT. So it sounds like I could be headed for a year or two years without sex. Does it really take two years to know you are without the PC and what terrible thing will happen if you supplement with TRT other than PSA will jump up and you will know you have not gotten it all. It seems that could be used as a stress test for PC but what do I know.

I catch myself and remind me that it might be only 4 months until T comes back. Staying in the moment and not the future is everything in this disease and trying to keep a positive attitude. Im just so tempted to start TRT on my own when and if I get PSA nadir a few months after BT.

Anway a second good article on Hypoganadiasm after ADT is:
http://www.medscape.com/viewarticle/521214_4

Best wishes
Richard
Posted Yesterday 6:42 AM (GMT -8)
Hi Richard, Arnie, John et al ....

I have been following this thread. Still finding navigating the site difficult. Got a question here for you.

Below, someone used an estrogen preventer, but how much is the $64k
question .. ." .25 mg of Anastrazole sx week " ??

Not sure what that means - daily .25 mg ?? If so, not enough. If you are on active androgen supplementation, intending to raise T, using patches, HCG even, then you need 1mg anastrozole/day.

I also believe estrogen(s) should be measured regularly to track & keep at low end of normal male range.

Sam
Posted Yesterday 8:05 AM (GMT -8)

Hi Sam and welcome!---------I received my 6-week lab results after TRT of bio-identical testosterone coupled with DHEA (5 days on/2 off).----Results?-----my serum testosterone and free testosterone not only didn't rise, they dropped! Especially the free T which dropped out of range. DHEA, which was low, dropped lower as well. DHT, (which T converts to along with estrogen if aromatase enzyme is uninhibited) rose. Unfortunately, and to my dismay, we didn't measure the estradiol level. I'm sure it rose based on the other markers. So-----I believe I need anastrozole/arimidex as an aromatase inhibitor, and possibly a different delivery system from the bio-identical cream. How much is a good question as you point out. I had read that .5mg 3 days a week should do the trick, but as everyone is fond of saying around here--"individual mileage may vary"----I'm going to try and make an appt with Eugene Shippen, MD in Reading ASAP-somebody who's in the weeds on this stuff. My urologist, who's very good in his own silo, is out of his comfort zone on this. Where are you located, and are you being treated by a specialist? Endo, perhaps? 

Arnie in DE

Posted Yesterday 10:39 AM (GMT -8)
Hi Arnie,

As you see I am new to the group. I'll try to make a meaningful reply, but sometimes the different way things work messes up the message! I was going to reply in-line to some stuff, but don't see how to do that right now. Maybe cut and paste ..

> -my serum testosterone and free testosterone not only didn't rise, they dropped!

That will be due to T(+addedE) having a negative feedback effect on the HPG axis. If you do not manage to control E, it could amount to a trade off between losing inherent T-producing capacity and raising exogenous T to compensate.

> Especially the free T which dropped out of range.

SHBG will increase with increase in E production.

> I had read that .5mg 3 days a week should do the trick, but as everyone is fond of saying around here--"individual mileage may vary"-

True. You need to monitor E. Until you have managed 'titrating' the right amount 1mg/day errs on the side of caution.

> possibly a different delivery system from the bio-identical cream. How much is a good question as you point out.

You can get shots with different periods of effectiveness from days to months. Of course if you have a long-strong shot you run the risk of not being able to bail-out if you beed to (say an unexpected rise in PSA). But that is a chance to take. I mean if you know your AR characteristic - you can make an educated guess. For example a worse case PSADT of one month will give you .. (you can see where the math takes you I hope).

> are you being treated by a specialist? Endo, perhaps?

-- In the UK. The uro/surgeon who did my RP 15 years ago still writes out the Rx's I manage to convince him are worth a shot. Other than that, it is mostly a 'seat-of-the-pants-job'.

Sam.
Posted Yesterday 10:56 AM (GMT -8)

Thanks, Sam....one of the reasons we went with bio-identical cream rather than other delivery systems was because of PSA monitoring. A long-lasting shot, or pellets that last six months couldn't be reversed if I experienced a rise in PSA. That gets checked in a couple of weeks at the 3-month mark. I forgot to mention that I did also experience an increase in SHBG, so I have a pretty good idea what's happening. You're right about one thing---it does seem to be a self-educated, seat-of-the pants operation at this point. I'm amazed at how little the MD's know about this stuff, or are willing to delve into something that's not run-of-the-mill endo issues like diabetes and thyroid issues. Don't get me wrong; those are serious issues for folks. But if I walked in with lab results that indicated that those markers were off, they'd be all over me like white on rice.

P.S.--------you might want to post your pre & post operative stats in your profile so that we can all see where you've been in this journey and with what statistics. (Unless you already did and I missed it)

Arnie in DE

Posted Yesterday 2:01 PM (GMT -8)
Arnie & All,

My stats go back to 1995 when I had a PSA > 20 and a serious misdiagnosis. By the time I was correctly diagnosed I had gone from "unremarkable" (1st urologist" T0N0M0) to "incurable" (second urologist T3N1M0, PSA > 50). RP (third urologist LN+SV) in '96 followed by RT in 98. IHT / IAS thereafter roughly yearly cycles. My PSA has never been well behaved, and I ended up with a kind of "devil may care attitude" to doing things the "right way". Began adding androgen during off-cycle in 2005 to boost my ever weakening HPG recovery.

Started writing about PC in about 2004. Not the usual autobiographical "Me and My Prostrate" stuff, the opposite really. Having a non-medical but science background I decided I needed to know more about the disease than what the likes of Strum and Scholz and Myers were dishing out. Working on the second edition of my book. If you want to take a look at the first edition you can have a copy for the cost of postage. Just follow the profile links.

BTW -- Where can I see your 'PCa history' ?

Cheers,

Sam
Posted Yesterday 2:20 PM (GMT -8)

Sam..my history/stats are in my first post back to you in my signature found at the bottom of the post.

I'll take a look at your stuff in your profile.

Arnie in DE

Posted Yesterday 4:54 PM (GMT -8)
Right.

Looks like you got it in time. I wonder, how would you have reacted at the time if someone having had your T level tested before any treatment you found it to be sub-optimal - would you have gone for androgen supplementation then ?

I know it is a hypothetical question, but back in 1996, if someone had suggested that to me I would habve run a mile, so steeped in conventional wisdom and junk science superstition was I.

I recall back in about 1997 there was a complementary medicine page in the Sunday Times colour supplement called "What's the Alternative?". Someone wrote in asking ".. is there was a cure for prostate cancer". The answer came back, ".. yes there is an effective treatment - you need to get yourself some 'non-esterified DHT' .. " I was horrified ! Good God, wasn't that THE ANDROGEN BOOGEYMAN incarnate !

If you Google "What's the Alternative" you'll get the Sunday Times page come up and an invitation to subscribe. For £1 you get 24 hr search access so I just may give that a try tomorrow. It will be worth it to see whether or not the great and the good at the site have pruned away the politically incorrect.

-- Sam
Posted Yesterday 5:25 PM (GMT -8)
Well Richard, as you can see, there ARE guys here who have tried this and survived..You wonder if some of them ever had PC to begin with, but that's not the issue..

There are about 1000 guys on this forum, them and their partners, who would LOVE to get their "T" levels up to 4 or 5 hundred again....Somebody has to go first...We are all gonna die and it might as well be with a nice big woodie and hair on our chests...As always, just my humble opinion...
Posted Yesterday 8:22 PM (GMT -8)
I believe that it was low T that initially sent me to my primary doc, complaining about low energy, when they did a blood test and found the PC. After the prostatectomy, I was 0 PSA for nearly 2 years. During that time, my uro doc treated me with Testosterone gel for my low T to try to get it into the normal range to help my recovery (erections were there but not quite good enough for intercourse). We abandoned the T gel when I had a recurrence. Now I have been through SRT, and the PSA has been steadily dropping (0.06 2 months ago, just had my blood test, no results yet). My doc is willing to start T treatments again, after a year or two of 0 PSA. I am still trying to figure out if I will go there... my T level varies between 110 and 190. Sex drive has dropped to very low, and I have difficulty reaching orgasm when my wife and I do try. The quandary is that my kids are 13 and 16, and I very much want to survive long enough to be a grandfather and watch my grandkids grow up. As it has been explained to me, there are 2 likely outcomes that I can expect: (1) the SRT completely eliminated the PC, and no amount of T supplementation will cause any grief, or (2) there is still some PC left, and it is only a matter of time before it recurs. If the T supplementation results in 5-10 years less life expectancy, then I would not want to undergo it. But all of this recent research about increasing T levels?! It's fascinating. Wish I knew what to do...
Jeff
Posted Today 4:09 AM (GMT -8)
Hi Jeff & All,

You said ..

> If the T supplementation results in 5-10 years less life expectancy, then I would not want to undergo it. But all of this recent research about increasing T levels?! It's fascinating. Wish I knew what to do... Jeff

.. and I am wondering where the data that "T supplementation results in 5-10 years less life expectancy" actually is ? Are you surmising there is some data? [ A fair enough assumption, considering the froth and hype that comes out from some research establishments .].

However, there is no evidence to even hint or suggest (never mind prove) that T supplementation is dangerous. Now, on the other hand, evidence of successful T supplementation goes from the present day back to the 1950's and I have the references to prove it.

I hope you decide to try TRT and find a doctor with the bottle to go along with you. Remember, though to take arimidex 1mg/day and get T, E, SHBG and other bloods on a regular basis. The old "three month rule" for guys on ADT is not good enough for anyone doing IHT, never mind TRT. This is recognised by the European Association of Urologists. Google "EAU guidelines" and search the PDF for IAS (intermittent androgen supplementation).

The EAU has not got as far as recommending TRT for men with active disease, but does recommend it for men with "undetectable PSA". Personally, I have never had "undetectable PSA" and if I had waited for some such magic moment I would have been dead from CRPC a decade ago. Of course what I am saying to you is purely personal experience and my acquired scientific knowledge that goes with it is a little way out of the conventional box.

Cheers,

Sam.
Posted Today 1:55 PM (GMT -8)
Sam, have you ever been diagnosed or treated for Prostate Cancer? Please post a little history so we can see where you are coming from..
Posted Today 3:17 PM (GMT -8)
> Sam, have you ever been diagnosed or treated for Prostate Cancer? Please post a little history so we can see where you are coming from..

I did just look up the thread. Sam
Posted Today 3:55 PM (GMT -8)
Sam, I should have said "If the T supplementation were to cause me to live 5-10 years less, I would not want to do it".

I am not arguing one way or another. I think we would all agree that conventional thinking is that T can progress PC. I am just saying that I don't want to do something that would prevent me from surviving as long as I can. My doc's current thinking is that we may supplement if I am at 0 PSA for 1-2 years. I was expressing my apprehension about that. My mind is open (hopefully)...
Jeff
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