No. I'm going through Care Oncology (sort of). When I told my SOC oncologist about my SPT program she just told me to "do what I'm doing" because it's working - Mayo SOC predictions were that after surgery in 12/2018 I had at the most 3 months before PSA increase, cancer return, etc. Been almost 2 years and nothing. And I haven't done any ADT, chemo, or radiation. Mayo oncologist and urologist wanted me to start on all 3 within weeks to months of surgery.
But I'm just curious what people think about Huggins' original research.
It was ground breaking. Changed prostate cancer into a disease one can live with for a long time. Led to many innovative medicines. They were right to get the Nobel prize for their work.
Worth noting that "(b) hormone interference in the cancer cell" can take (at least) TWO forms, either high-dose T or high-does estrogen (which ends up being a combination of T deprivation and whatever direct effects E2 might have on the cancer cell).
I think antiandrogen monotherapy might fall into that category, too, because you are messing with the receptor rather than depriving "the creature" (= me) of hormones. Which is why I'm giving it a try.
That's a great response! I was hoping my PSA would drop a little further, faster, but still hoping for continued decline and low nadir. I was aware going into this that Casodex alone could be less effective than ADT, but looking at the overall survival curves I'm not seeing a huge reason to worry. Disease progression is likely for me under either therapy. In the meantime, I have high serum levels of both T and estrogen.
No real SEs at all ( don't know about bone loss yet, but should be ok). Only four months in. As for depression, already have a mild form of bipolar rapid cycling (gets worse in fall/winter) so will be interesting to see how that goes. Summer is my "good" season as far as that goes, and if anything I had fewer mood episodes this summer than normal.
The potential mood issues were one of my main concerns with standard ADT.
A few months after RP I did 5 months of estrogen therapy. With Zytiga. T was zero.
Then a month of caso/duta
Then 12 months and counting of high T with an AI.
Probably a lot of hormonal interference!
I think it's amazing considering that he discovered it in the 1940s when there were very few treatments available for any cancer. It was initailly thought that he had found a cure for prostate cancer. That was of course until it was discovered that patients become castrate resistant.
Androgen Deprivation Therapy is still the foundation of prostate cancer treatment for advanced metastatic PCa. It's initially somewhere around 90% or better in effectivity. No one likes the side effects, but I was in living hell with pain when I was first diagnosed and 3 weeks later off all pain meds. That's why I don't complain about it.
Unfortunately Huggins is misrepresented in text books to this day in the "T is fuel for cancer" myth that still underlies SOC. Huggins was well aware that supra T was bad for cancer cells just as ADT was bad for them and did very limited trials with high T which became the justification of the "T is fuel" rubbish. Nalakrats in a past post went to the Huggins library to check the original notes and papers and found they did nothing of the sort. Miniscule samples and huge selection bias. Morgentaler in his papers of about 2005 also drew attention to this and the fact that there was precisely NO EVIDENCE up to the present day for the "T is fuel" idiocy. All the evidence points to LOW physiological levels of T being the environment our nasty friend likes. Supra T is toxic to PCa cells as is castrate T (for a time in each case). Interleaving the 2 modes (hi T and no T) is an obvious strategy not in the SOC playbook.
Well said! I think it was Denmeade who gave a great rationale for the BAT approach, saying that the PC cells learn to thrive in the preexisting hormonal milieu (as it has slowly changed within the patient, over several decades) and sooner or later adapt to any NEW and radically different hormonal milieu. But they can then be "shocked" (and killed) when that newer hormonal milieu is suddenly reversed to its polar opposite.
The newer mathematical modeling, by Gattenby and others, uses the principles of population ecology to try and fine tune what the best "on" and "off" periods might be for men with certain PSA profiles, mutations, etc. The optimal timing for both BAT and iADT has never been known, and has mostly been a matter of educated guessing. Hopefully the future will bring more refinement to these therapy modes.
You saw Dr. Kwons video after he kills all the spots he leaves them off ADT and they recover T and thier PSA is zero ... thats a huge difference to a PSA of zero on ADT... thats not really a zero... If I ever (out of necessity) have to get on ADT (and became CRPC -- while on second gen and holding it down) -- before it starts running away on me -- I would see Dr. Kwon -- and start whittling it back ... most Dr.s don't even try --In many cases he literally buys people with CRPC 4 and 5 years (and counting -- with no evidence of disease) from mere months left.
Actually I will be whittling it down long before that --as soon as it shows on PSMA or c-11 scans.. the sooner the better and combining super high T it is therapeutic and protective..
You are well informed -- Dr. Morgantaler did the follow up research of the Higgins study -- he said it envolved only 3 men .. and it lasted onlt 14 days ... super high testosterone is very likely the future in slowing PCa growth ..you can never get CRPC on high T and if you slow the doubling time to a crawl you out live it. I posted his video too not long ago.
I have been posting on super high testosterone as a treatment for 3 years here.. you can look at my posts and look down the list and view them as well as the community responses both pro and con... I have posted Dr. Bob Leibowitz videos -- Dr. Morgantaler videos and Dr. Denmeade videos ... --- I lean toward continuous super high Testosterone -- especially in your case (and mine) I have a PSA of 1.37 -- much like you I was told to get on ADT immediately ---after surgery 4 and one half years ago ... If I had I might very likely be CRPC... by now. I had in 4 lymph nodes Gleason 8 - 4+4 -- post surgery PSA 0.03 You should watch their videos they are very informative ..
I am scheduled to see this doctor first week in October... His video link is below ... he gives super high testosterone to cancer patients -- one cohort with cancer was given testosterone replacement and the other cohort was not given replacement testosterone --- @ 5 years -- 15% of the group receiving T had biochemical recurrence -- 53% of the group not receiving T had biochemical recurrence ... the group that got T and had recurrence it was delayed by a year and a half.
Dr.Morgantaler gives T continuously and peoples PSA stabalize and the cancer seems to go dormant -- You can't get CRPC that way .... the cancer may progress (or not) but ofter it just crawls along... at an indolent pace -- taking dacades.. Here is Dr. Bob Leibowitz video .. he treats with adt and chemo and immediately stops ADT and starts high dose T for life -- not bipolar. he has patients with PSA of 9 or 12 that remain there for decades.
I inject 400mg a week of cyp. My T is between >3000 and 2100.
A friend of mine is on 400mg of cyp. His T is about 1000. Lower than my T was before I started the hormonal manipulation. Mine was 1000-1250. My friend is 7 years younger than I am so you'd think his T would be higher.
That is more than I was started on (200 mg weekly) on the other hand it appears it is needed to get to the super t levels needed.. I will not know for 6 weeks --- I'm wondering if I should just up it to 400 mg weekly and then go down if needed. Your thoughts?
How long have you been on high t and what is your PSA etc if you don't mind saying.
I did high estrogen and zytiga for 5 months, dutasteride and casodex for a month, high t last 12 months and counting. PSA is 0.028. It's hovered between <0.01 and 0.06 over the last two years (since RP).
Like you, I'm not a doctor, but when I did estrogen to get my T to zero I started high and then adjusted down when I had my T at my target.
As of earlier this month, my estradiol is 4, T is 2500, DHT is 32, prolactin is 1.1.
I read Edward Friedman's book and did some research and talked to some doctors and then I came up with the estradiol plan and then the T plan.
I did 50 miles last night. Temps started at 72 ended at 52 after 3.5 hrs, I have to remember to choose the right kit her on out. Looking and hoping for the return of T 10/21 under my SOC, I am not the guy that would go IADT on my first line treatment. So I will wait, hope, and see.
Men of all ages are on testosterone replacement -- it makes you feel great --like old times --virtually no side effects -- can grow man boobs -- I take arimidex one half pill twice a week.Super high T has been shown in clinical trials to cause double strand breaks in PCa cells causing cancer cell death and has not adverse effect on normal cells.
Possibly due to my orchiectomy I have ABSOLUTELY NO NOTICABLE EFFECTS even when pushing 1,600ng/dL. Body, joints still have nagging pain, no new muscle developed and very little old muscle has returned in the 5.5+ years since beginning shots, endurance with speed is still shot to hell. I used to take my turn up front pulling at 20mph to 25+mph and now can't even ride more than 5 miles drafting in the back. SUCKS but at least I am able to get out and ride instead of experiencing the crap so many do on the ADT train. I feel guilty feeling as good as I do AND MAYBE if things continue on being positive a different approach might come out of my Gleason 10 experiment.
He was interested in following my progress ... I am still taking T injections to keep it on "normal range" (being watched by my urologist) -- I got T to over 3000 at one point -- PSA rose to 2.4 -- currently T is around 450 and PSA 1.7 -- I'm only taking supplements and Avadart (one pill daily to stop production of DHT)
In your case -- bipolar T may be a viable option to slow the time to CRPCa -- although i'm aware of any tests that have proven bipolar slows progression -- . It would improve quality of life and lower the chance of cardiac / bone loss / and dementia.
Also many doctors are now doing vacations from all ADT treatment (until PSA rises to pre treatment levels and then back on the ADT for 6 months or so -- and back and forth. M D Anderson has suggested that for me when the time comes (my PSA gets to 5 or 10 -- whatever my comfort zone. They also said if PSMA scan shows treatable spots I could radiate them and wait to see what happens.
PSA is likely to increase when you do high T. The androgen-sensitive guys love it. I think that they are the more populous species for most of us.
My ABAT is on month 7. My PSA goes up to 0.2 when I do the high T week or weeks and then drops to zero when I do the low T (ADT) for a month or two. It's done that every time. Gotten so that I get my PSA tested and I tell my wife what the number will be. How long will it last? Initially, I thought 6 months with a slow rise in average PSA. Now my guess is a year. If I get to the year mark without any PSA increase then?
Also, I'm going to experiment with Finasteride (similar to Advodart but not as powerful and has a short half-life). On the low stage my PSA drops from 0.2 to 0 in about a month. Best I can do at this time is to see if taking finasteride helps speed that up. Some evidence for DHT blockers is good. Some is not so good. RCTs for BAT don't use DHT blockers.
On the 23 of this month my 6 month Lupron shot "expires". Now, this is ultra interesting. Just wondering, will my old friend, Dick Wood, come out of his coma?
A lot of these men in here are taken off ADT a some point (Dr.s know recognize there is a time to CRPC -- on ADT -- around 2 years) It seems to me if /when you stop ADT -- that it the time to immediately slam any remaining cancer cells with super high T ...
Very informative... you, RSH2, Kaptank and of course the leaders in the high T field Denmrade, Lirbwitz, Morgantaler and Schweitzer ( across the US border in Seattle from where I live in Vancouver, Canada).
So guess what George. I am 32 months in on Zytiga, my PSA has been up and down in the range <0.008 to 0.06 The last year. But with non-detectable PSA my spine Mets are growing. The usual scenario is PSA starts going up as Zytiga stops working and heads me into the mCRPC phase and growing Mets that are causing some pain in mid spine.
Under SOC , chemo is the option.
Outside of SOC, I’m thinking there is radionuclide egLu 177 and high T ( BAT or continuous).
And by people like Liebwitz there is a personalized treatment plan from what I read.
So for me, entering the world of Zytiga not working, chemo naive, and mCRPC onset, is SPT or BAT an option.
TA has stayed no MO would give high T to symptomatic men.
I'd write to Denmeade, Morgentaler, and Schweitzer. Ask them for opinions.
I agree that no strict SOC oncologist will give you T. They won't give me T either. I don't know if they prescribe SPT to anyone. They still go by the part of Huggins' research that shows androgen deprivation slows PCa. SOC hasn't yet taken to the other half of his research that shows high adrogens kill PCa. Granted that I do NOT know if everyone is successful. Likely depends on the specifics of your cancer. ADT seems better for some guys than others. BAT and SPT are good for some but not for others.
There are many doctors on the edge of SOC/new therapies that might potentially use T in your case.
T-cyp is cheap if that is a concern. I never even thought about using insurance. Through GoodRx it's about $40 a month. The AI is a few bucks a month. DHT blockers (finasteride and dutasteride) are about $15 a month total.
For the script I went to a men's health clinic that does TRT. They were pretty up on the research so no convincing was needed. That said, I provided them lots of research regarding specifics and the particular program that I had in mind.
But I'm NED and I figured that the worst that would happen would be an increase in my PSA and then I would go into a more standard ADT-like phase or perhaps nothing at all for a while (I used estrogen for ADT but it still made me miserable - I'm a guy and being a guy for a year means more to me than being a woman for 30). But it's been over a year and my PSA is 0.028. I have it tested once a month (I was doing every week but after a few months slowed down to once a month).
Liebowitz is good. I was a patient for a while but didn't really fit into their therapies.
In my case they would do 13 months of ADT with a few months of low dose chemo added in. Then T if needed or desired. And they'd constantly use metformin and a statin. I'd already done 5-6 months of ADT and was done with that. I was already taking metformin and a statin. I would have entertained low dose chemo but they were adamant that it would be worthless unless I did ADT at the same time.
You mentioned Lu-177. I'm interested in possibly using this in the future. I'm going to watch clinical trials and research.
Thanks for info. Love the idea of getting opinions from Denmeade, Morgantaler and Scheeizer ... and Liebwitz.
So tried to get in contact with Schweitzer. Results so far:
Got a phone call from FInance department asking for $1600 for a in person consult. But border is closed for my 2 hour drive to Seattle so can’t drive. Can fly.
Then someone there suggested I look at Clinical Trial as a way of opening a discussion/ asking questions. In fact there is a T and Oliparib trial by Schweitzer so maybe that’s a way in.
Maybe you have contact info for Liebowitz as you saw him? You could send by private message? I watched a Liebowitz video yesterday. Very informative including low dose chemo part of cocktail treatments, with less side effects. Do you know or can you get from Liebowitz his low dose chemo protocol... as you are probably aware docetaxel is the first choice, with potential addition of carboplatin, followed by carbotaxel ( Jetvana).
How old are you if you don’t mind me asking? I’m 58 and despite entering the mCRPC stage I’m still playing golf/ soccer/ bike etc Zytiga AA gave me minimal side effects.
You said you didn’t want ADT with Liebowitz but you say you are taking AA currently?? You meant no Lupron or Zoladex ADT?
And yes I believe everyone and their dog will have Lu177 on their radar when it gets approved in the US.
I'm 57. Gleason 4+ 5, T3b/c, local lymph node pos, bladder wall, seminal vesical. RP 12/2018. I was given 0% chance of NED by 3 months. 40% chance to live to 5 years. 18% to 10.
And that was if I did ADT, radiation, and chemo.
Instead I used estrogen patches to get my T to zero. Then Casodex and dutastreride. Then SPT since 09/2019. No evidence of cancer. Last month I had lymph and bone scans. No sign of cancer. My SOC oncologist has noted my progress and now just tells me to keep doing what I'm doing (SPT). She told me that she doesn't see ADT in my future and she recently talked me out of radiation (I plan on discussing with her tomorrow to find out her reasoning).
Like George said, Dr. Eshaghian is $500 for a consult. He's knowledgeable but if given the opportunity I'd spring the extra $250 to talk to Dr. Bob.
I'm taking AA. I started that shortly after I started estrogen. The only reason I'm still doing it is that both of my primary oncs are of the opinion that I'm beating the odds so I shouldn't change a thing. But I do plan on stopping it for a month or so and watching my PSA. Cycling seems like it might be a better bet.
They will, Dr. Morgantaler will, ( Bob-10 has talked with him about it and he is advanced similar to your description) It is an excellent option in my opinion ... I would call Dr. bob Leibowitz and set up a phone conference -- you send them your current records and they review and set up a phone conference .. Dr Eshagen is $500 for the initial conference around an hour or Dr. Bob is $750 ... it is well worth it. if you ask me. You saw his video above -- it is really impressive.... Also I would call Dr. Kwon at Mayo clinic and see about zapping any mets they can find ---attack it from both directions -- both have been able to stop cancer for years without any ADT -- even after mets were present .. Did you see Dr. Kwon's video?
The contact and phone consult with Bob Liebowitz sounds good... thanks!
I was able to get a response from Dr Schweitzer immediately today after I contacted him about a T and Olaparib trial. Got good opinion from him!
Can you give me a post with Bob-10 in so I can see his story. Me doing a HU search for Bob-10 gives me nothing. This site could use a better search engine!
did Dr. Schweitzer tell you the T + Olaparib trial required a mutation or not?
Tell Faith1111 what you were told about T+Olaparib so she can share it with Bob_10 also
My only thought about it is hopefully they leave you on super T until rise in PSA rather than stopping T ata a predetermined time frame regardless of PSA rise or not.... Dr. Bob has people on continues super T for years.
Can find the trial on clinicaltrials.gov and full eligibility criteria. Half on trial will have BRAC1/2 mutation, half no mutations. I know they have several spots open for those with mutations, not sure for those without.
I can’t find Faith1111 by search so can you give title of a post Faith1111 has responded to.
click on Chat button above --- click on Compose (blue button on right) start typing Faith1111 -- Faith1111 will appear in dropdown options -click on Faith1111 - then compose message and send .. tell me if that works
I have been asking for months, what is the difference between the 1 month and 3 month Luprolide shots, Drs could not tell me. I finally found an answer:
My SOC oncologist wouldn't go for it. I found a naturopath and he writes the scripts. TRT men's health clinics are common. Contact one of them and find out if they'll do it.
Anyway, after a year of SPT my SOC oncologist just kinda closes her eyes and tells me "keep doing what you're doing" because it's working.
Even for the guys already on ADT -- Dr. Bob Liebowitz eventually takes them off ADT entirely and uses super high T -- if PSA starts a slow rise -- he just stops the T for a week or two and their PSA drops back to where it was before -- then he starts back with the continuous super high T ... no need for ADT --- your body stops producing T soon after you start taking T. So if he stops getting T for a week or two it is the same as... A very short cycle of ADT and then back on continuous super T ... On super T our body thinks it has enough ... in fact your body will start making estrogen to regulate it -- some weight lifters who take T -- take DIM or arimidex to protect against possible man boobs but many never need it. You gain muscle and bone strength -- lose fat.
I think it is important to proceed cautiously. In my view we do not yet have good data on continuous supra T and PCa. (but a lot on continuous supra T in the body building communities) We have better data on BAT type therapies, a number of phase 2 trials and a reasonable safety record. A recent review of the field said the time has come for a proper phase 3 trial. (It won't happen - no interest by big pharma) However, its obvious that we don't yet know much about sequencing. I chose a traditional Denmeade type BAT but I am refining it and Patrick (PJOShea13) has also developed his form. So we all are learning as we go.
However there is one thing I am wary of and that is T supplement that simply takes you to physiological T levels. (TRT, gels and patches) The evidence on this is mixed. The only reliable way to get supra T is by injection.
George71, what is the specific dosing that "they" (advocates of Supraphysiologic Testosterone Replacement) using for their regimens currenly for HSmPC? I am in this category with low but not castrate T levels after a six month round of ADT accompanying PLN RT. Seems a bad place to be, and perhaps continuous STRT would be a good idea (vs BAT which seems more applicable to CRPC.) The videos do not seem to include specific dosing for sustained TRT (ie injections every 2 weeks vs. topical T gel, etc.) and if tamoxifen or aromatase inhibitor added to prevent gynecomastia? Thank you for any leads. -Paul
Most men getting testosterone replacement therapy for hypo gonadal -- are generally started a 100 mg per week.... It raises their T level to somewhere around 500 to 700. In order to reach and stay at super T levels it will likely take 200 mg.. weekly the doctor will test you @ 6 to 8 weeks and adjust up or down... I just started @ 200 mg per week. the aromatase inhibitor I was prescribed is Anastrozole 1 mg twice weekly. I'm taking half that (to ease into it) half a pill twice weekly -- I will be tested in 6 weeks to see where levels of T and E are. they want E between 20 to 30 -- shooting for T above 1500 on low end. We (my son and I) know a guy that takes 200 mg weekly for body building -he is an animal- of course he is younger 45 -- and he has no cancer. He takes an aromatase inhibitor to keep E down. It is important to keep E in line at normal levels to get the benefit of the super T .. other wise the body converts T to E. They have run trials giving men 600 mg weekly for 10 weeks -- with no side effects they had significant muscle gain and fat loss.. the group that took 300 mg weekly also had large gains but not as high -- the group given 125 mg had minimal gains -- the group given 75 mg had muscle loss. T is natural to the body... they will check hematocrit levels to keep below or at 51 or 52 range -- if it rises you just give a pint of blood once or twice a year.
as you noted these are what the doctors are telling me -- you should ask them -- I'm just reporting what little I know about it ... I'm no doctor -- but I can tell you this many of them are finally seeing the light. Super T in many cases is nearly as effective in slowing cancer progression as is ADT but most importantly it is being done without the damaging co-morbidity effects and doesn't cause CRPC which in my opinion is to be avoided if at all possible.. Even with CRPC -- in some cases super T and bipolar T has turned CRPC around.
I will scroll back up and message addicted2cycling and ask him what dose he takes to get to 1600 -- watch for his reply and we can both learn from the mistro.
if you get a minute --would you please look at my posts regarding super high T therapy above and below andtell us if is in keeping with what you have been told ... and are you taking something to avoid man boobs, etc.
Every other {RIGHT NOW} so not really a constant high push. Might change if status dictates and I need to drop or try higher. Screwed up once and 2 extra weeks out was at 26ng/dL day before I got shot.
Well that explains why you aren't still leading the pack... dropping to almost castrate even for a few days would do it. Sounds like you could be taking a lot more.
Shot every other week so not a high push 'cause it follows my one time cocktail of a 3 drug immunotherapy injection and we are just experimenting to see how my system reacts.
PSA is actually not cancer progression. It's a very good sign of progression though and, if you have zero T if it rises it indicates the cancer is progressing. But on SPT your prostate cells produce more PSA. Even if it is just cancer cells, they produce more PSA. And PSA is not 100% prostate specific. I've read NIH studies and one concluded PSA from non-prostate tissue will be around 0.001-0.018. Another concluded a much higher range (up to 0.03). [I'm not positive about the numbers - just going off memory]
Is the high T therapy workable for a stage 4 patient with extensive bone mets? I just went through 5 rounds of Docetaxel and have been on Firmagon and Prednisone since the beginning of treatment in June. I had a bone scan a little over a week ago. There was a slight reduction in the uptake in a few bones, no new growth, but overall pretty much the same. My PSA is at 0.6 and alkaline phosphatase is now normal. My MO seemed to be pleased with the results. I am not sure whether he was blowing smoke or was genuinely pleased.
At your stage I would not do it just yet -- I would consult with Dr. Bob Leibowitz (phone conference at regular office visit rate can be scheduled) and Dr. Kwon @ Mayo Clinic .'
Dr. Kwon would likely try to radiate all visible mets then take you off ADT and see what your PSA is -- that would be the time to slam it with continuous super high T -- Dr. leibowitz would likely put you on a short cycle of low dose chemo cocktail then abruptly stop everything and give you super T -- nothing else --- that way you never get CRPC . He has patients that have come from within ( likely) months of the end to a decade and more... not on anything but continuous super high T.
that is the best of all worlds if you ask me... dr.Kwon will radiate and almost certainly kill all spots found on imaging -- but he has to see it first to radiate or surgically remove it --- I think radiation is more certain of killing it as opposed to chemo...
on the other hand Dr. Bob Leibowitz -- prefers low dose chemo because it is systemic and kills spots you may not know you even have -- and he isn't trying to kill it all -- he just beats it down --kills the likely unknown mets and most of the visible where ever it is and then continuous super high T levels keep it indolent for years with on other treatment -- no chance ot CRPC ... but even if you are CRPC sometimes the super T makes the remaining cancer respond again to ADT or -- simply stopping super T for a week or two then resuming super t.
I am just telling you what the doctors are telling me. i'm not a doctor -- I can't recommend any treatment for anyone I'm just like the rest of the people here -- sharing our experiences...
I was diagnosed about 8 months ago with PSA300 , Stage 4 with 30+ bone mets. Since then on ADT and PSA is 0.2 with zero T.
My plan is to just stay on ADT until PSA starts to rise, then try the Supra T. Is this the right approach, or do you think I should pursue the Supra T sooner?
I know you know we aren't doctors -- we are just like you sharing our thoughts and experiences .
My thoughts .. give you brief bio .. First I would not wait till your PSA rises before looking into other treatments ... by then you are already becoming CRPC and that is to be avoided if at all possible... It may eventually happen to all of us -- but that makes it much harder to treat -- the cancer morphs into a much more aggressive form...
I think You should contact one of the following
Dr. Bob Leibowitz @ Compassionate oncology you can see his video below ... or Dr. Kwon @ Mayo Clinic in Minn. -- you can see his views in the video below also.
They generally try and beat the cancer down and then take you off ADT and immediately start you on super high T (in the case of Dr. Leibowitz .. before it causes you to become CRPC. Dr. Kwon tries to find it and radiate or surgically remove it after treating it with Chemo + Zitega etc to keep you from getting CRPC... He has still had huge successes with CRPC .. but it is a lot more challenging.... CRPC is caused by ADT - - so you should starting fighting back now -- before it gets there .. Super high testosterone can be in your near future -- but first kill off all you can --- (low dose chemo -- radiation where found etc ) then shock the remaining PCa cells with continuous super T ... once on super T for a few months your body stops making T -- (that's not a big deal -- body buliders who take T don't make T either.) Then if your PSA rises you just stop T injection for a week or two and your PSA will drop like a rock and then get back on super T -- hopefully for many years ... this way you don't become CRPC ... Super t causes double strand DNA breaks in PCa cells .. No side effects -- no bone loss muscle wasting possible dementia.. those are just my thoughts.
I love SPT. I feel great again. Just amazing stuff.
But there are sides. My BP has gone up. I'm battling with it now and thanks to suggestions from Nalakrats I think I have it under control. Still something to be aware of. Krats suggested 500mg calcium, 500mg magnesium, 250mg phosphorus, 99mg potassium per day (country life cal/mag/phos/pot tabs).
Also you can get gyno. I take an AI (I think it's important to reduce E when you're going SPT). AI not only keeps my E low it also, of course, wipes out gyno. My AI is actually a little too effective. I was taking 2.5mg/wk of letrozole. I am going down to 1.25mg because my estradiol was less than 4 pg/ml.
Yeah, scary low. About a month ago I noticed a little fat gain. BP went up. I get fatigued during the day. Strength is decreasing. All possibilities from low estrogen.
Seemed to coincide with the addition of some flax seed in my diet. I read that flax seed might possibly decrease estrogen. Seemed a little like a bro-science study though. But who knows, given my super odd hormonal mix.
I was targeting 15-25. I held in there for 11 months.
Trials so far have excluded symptomatic patients - especially bone pain, so we don't really know. Some of Denmeade's patients had what was thought to be arthritic pain which was later confirmed to be pain from bone mets. These did have pain which went away as T declined (10-14 days). Most of these elected to do another round of BAT and did not have pain flare on 2nd and subsequent BATs.
I and a friend each were using T-replacement therapy for years - I don't know what his T levels got to, but mine were consistently 700 -1000+ - we both eventually developed PC. Mine remained encapsulated with no mets (and I stopped the T at my doctors' insistence - this was 10 years ago - everytime I restarted the T my PSA rose almost immediately).
But my friend got bone and lymph mets (the primary care doctor who prescribed his T supplement then didn't test his PSA for more than 3 years or refer him to a urologist) - he's now doing ADT after an initial course of chemo. I'm sending him this page of posts and a 2017 Lancet article on a BAT study (though you have to pay to read the whole thing thelancet.com/journals/lano.... Are there more recent articles you can recommend?
Yes, the injection method lets you know exactly what you are getting --- as opposed to rub on -- because rub on is not always absorbed well or the same each time ... but if you rub on a lot -- it will get you there and it is important to keep you there and not fall back to low T or no T --because that is -- in effect -- the same as BAT --- the people on intermittent ADT often have years long off periods ... (off of ADT) M D Anderson suggested that as an option for me. the difference between intermittent is merely when the ADT is stopped for people to start the off ADT period --- they haven't been starting them immediately on super high T -- instead they just let their T crawl back up to what ever it was before ADT ( if it even does that -- some people their T never comes back and they are effectively still on ADT and develop CRPC anyway .. -- doctors are now thinking that may be the reason why the cancer comes back --- as opposed to having slammed it immediately with super high T ... also intermittent ADT just allows you to come back to normal T -- that doesn't get it... super T kills cancer. You have to keep it at super T levels... That is why in some ways rub on is better -- you get it daily... injections need to be high doses weekly...
Huggins work with Prostate Cancer formed an awkward basis for the way UROS today relate to ADT therapy. They feel ADT is not effective or a viable treatment options. Huggins discovered that orchiectomy ameliorated the progress and pain from advanced prostate cancer. He discovered that there was a strong relationship between Testosterone and Prostate cancer. He won a n award for this discovery but his work didnt advance the use of ADT for use as a curative therapy. Many years later Lupron was used to treat Castrate metastasized prostate cancer and it had a good success at doing this. The PSA test was instrumental in using ADT at early states of the disease where success is optimal. His cases were too far advanced for the use of ADT. IMHO.
From my experience, I think its best to never get to resistance if you can possibly arrange it. I did Denmeade style BAT where you keep injecting monthly T until a rising trend in PSA. Then stop the T and rechallenge with your original antiandrogen. I concluded that was a mistake but it's hard to predict when resistance will occur before it happens. We don't know and our best guess with current evidence is that intermittent sequencing at a fairly arbitrary 2-3 month interval will do - pending much, much more information. The problem with continuous therapy is that it's very easy to become resistant. Our little critter is very adaptable and finds ways in the long term to handle supra T just as it also adapts to ADT.
ADT and high T seem to have been hotly discussed recently, with constant critiques from “Dr.” TA. All interesting and some thought provoking, but I will let my own good experience guide me. Dx almost 3 yrs. ago, stage 4, Gleason 8, Mets in pelvis and on one rib. Did Docetaxel, followed by 42 sessions of IMRT. Started on Lupron, added Zytiga when chemo was finished. PSA went undetectable at the end of chemo., and has remained undetectable for 2.5 yrs. my MO stopped all meds 15 months ago. My T has only recovered to 100, enough to stop hot flashes, but not enough for sex.
Last month I had a huge argument with my MO about T supplementation. He’s a top PCa researcher who has read even the obscure stuff I challenge him with. He absolutely refuses to endorse T supplementation for me, and he’s not a conventional SOC guy.; for example, the radiation he set up was deemed experimental by BCBS, and he gave me a script for the cholera vaccine without hesitation.
So I would love to get my T back up, but I am sticking with the advice of my MO, who has me alive and well, although not perfect, three years after my terminal diagnosis. As they say out here in the country, “you got to dance with who brung you.”
If the MO is helping you beat the odds and you're good with the QoL, go with it.
My SPT after a zero-T lead-in is working for me. Every PCa is different. And we all have different views of QoL. Not to mention that what works today might not work tomorrow. PCa is a beast and it is an adaptable one.
It does seem though -- if he has taken you off all ADT and is letting you t come back -- why not get it back quickly -- and use this opportunity to shock the cancer cells like Denmeade does and let you stay at high normal or better yet Super T.. super t is proven therapeutic and causes double strand breaks in any surviving PCa cells.
Would be interested to know of anyone here doing Supra T (no BAT).
in reply to
I do SPT. Been doing it for over a year.
in reply to
Any negative side effects? I've just read your other posts: you wanted to do BAT. Are you on BAT or only SPT?
in reply to
I'm pretty much SPT for now. I did 5 months of estrogen based ADT. Then 1 month dutasteride/casodex, then 12 months and counting 400mg testosterone cypionate weekly.
Side that I think might be due to testosterone are BP increase. I'm not sure though since all of my red blood cell metrics are normal. Might be that I decreased my estrogen to low via an AI. I'm still working on it. Nalakrats recommended cal/mag/phos/pot and it seems to be helping.
BAT is still in the plan but I got addicted to SPT. I'm not going to entertain BAT until SPT is a known failure and I need to do something else.
in reply to
Being still on zytiga, do you have now all the time high T or does the zytiga bring it down? not sure about it. And the SPT are injections?
in reply to
My T varies between 2100 and >3000. SPT all the time.
I'm on zytiga continuously. My doctors don't know how it's adding anything but are of the mindset "ain't broke, don't fix it".
so does addicted2cycling - -- I just started (3 weeks)--- its not that crazy -- read my comment right above -- to Canoehead and scroll up and watch the videos
Being an engineer I love a physical analogy, how about this:
The PCa is like a light bulb that is made to work on 12V. Testosterone is the electricity, and it drives the bulb, sometimes it is 6V or 15V, its all ok for the bulb. ADT shuts down the Voltage to 0.4V, so the bulb is barely on, but it is not dead, it can survive at 0.4V indefinitely.
However Supra T turns the voltage up to 50V, and as we know 50V blows the bulb, its dead. Even if a new bulb is installed to replace the blown one, 50V will keep blowing it immediately.
PCa is like 10 light bulbs. 8 of them are made to work at 12V. 2 of them are made to work at 45V.
Take Voltage to 0.4V and they are all barely on (ADT). But none of them blow up.
Take Voltage to 50V and 8 of them blow up (SPT). 2 turn on and work fine.
Cycle back down to 0.4V and the 2 remaining ones are barely on.
And the manufacturer keeps making lightbulbs. 12V ones and 50V ones. So it's a neverending cycle. Turn 'em off. Blow 'em up. Turn 'em off. Blow 'em up......
RSH, thanks for the refinement. You are correct, I think Dr Bob mentions it too, the factory keeps making , but as long as we keep blowing up the product at a faster or same rate, we are ok.
I think the key is the on-off cycling. We know that also blows bulbs. Let's hope the manufacturer never start making LED lamps... lol
The 23rd is my 6 month mark on Lupron after RT and I meet with my doc on the 26th. Somehow I don't think he will agree to put me on High T. Impossible sell?
The refined light bulb analogy does make sense.
Going from near zero to (?) high dose of T makes sense. It seems any way I go my nuts are shrivel up and turn into raisins. At .039 PSA going into RT I don't think my PSA will explode into the thousands.
If he's SOC it's probably going to be impossible. But if he is flexible and keeps on the latest (and oldest) research he'll likely think about it.
If it is a possibility but he'd like evidence or research, feel free to write to me and I'll help if I can.
High T will definitely fill out the nuts
Why shouldn't we become resistant to SPT and only to ADT? Any research on that?
in reply to
There is some research. But mostly speculation.
SPT might be killing PCa via DNA damage. Different than ADT which, as far as I know, doesn't kill all PCa cells. Only the ones that rely on some T to live. I'm not even sure if it kills those cells. Perhaps it just makes them dormant. So as the T sensitive cells wither then the T insensitive cells dominate. Eventually you stop reacting to ADT.
SPT might actually kill them all. But since the PCa keeps breeding I don't know if you can ever take the foot off the gas. Might need to just keep on going indefinitely.
Again, all bro-science at this point. Some researchers are actively looking into it though. In the meantime the best thing is to monitor what is happening. Probably be the best thing in the near future also. Everyone has a different phenotype/genotype/stage.
Another overview of BAT and SPT from Abraham Morgentaler, M. SPT falls out of BAT if you monitor PSA or progression to flow into an ADT cycle. Depending on how long you're on SPT, your endogenous T might be zero. So the ADT phase might be as simple as stopping injections of T. You can get into a low phase quicker by using proprionate (short half-life).
Whatever your views are on SOC vs. SPT or BAT, he makes a good point. What are we here for? If you live a long time on ADT but your QoL is zero, what's the point? Before I started doing SPT I told my wife that if the only way I could live was by doing ADT I'd prefer to check out. A very personal decision of course. I was a bodybuilder in my 20s and spent hours in the gym most every week of my life. ADT took it away from me. Also took away my libido. To add insult to injury I grew boobs. Some people are perfectly fine on ADT. Great! Unfortunately I wasn't ok.
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.
My PSCA CAR-T Journey 
Intermittent Androgen Deprivation Therapy
Androgen-Deprivation Treatment May Protect Men From COVID-19
cart t therapy or lu177
