Many of you are still questioning my use of tE2 gel? The gel and the E2 Patch are basically an old therapy which was taken off the market in 1985 due to an increase in cardiovascular issues and replaced with the extremely profitable and 'QOL reducing' jabs called Lupron or Zolodex. Prior to that time most men who experienced Biochemical Recurrence (BCR) of prostate cancer after primary treatments were given an inexpensive, synthetic, and very effective estrogen pill called Diethylstilbestrol (DES). This pill did a great job of keeping PCa sleeping for many men with advanced PCa; however, because it was an oral hormone it was absorbed in the liver and 'could' cause CV problems. The pharmaceutical companies blamed the pill even if the men were predisposed to CV problems from other causes; consequently, banning its use and came up with jabs costing an average of $2,000/month.
Since the gel is absorbed directly into the blood through the skin it bypasses the 'first pass hepatic metabolism' thus avoiding the coagulants created in the liver.
As I mentioned numerous times before, grandpa, my father, and his two brothers all were treated with DES and never had any side effects or CV issues until 1985 when they were switched to Lupron...they didn't have CV problems; however, the side effects were significant.
I had read that one of our brainy gurus, pjoshea13 found a source for DES.
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Good Post Ron, I need to find out from Dr. Wassersug, do you taper off from Lupron as your numbers go down, or is it one or the other. I remember with my mom, as I gave her a combination of red yeast rice and coq10 her blood pressure continued to go down, as it went down, her doctor continued to lower the dose, until he finally said Mrs-------- we are going to discontinue this, you are doing fine. The pain in her legs finally stopped and she lived until 92. She dutifully took her supplements and worked out in her beloved garden until she died.
I am sorry I meant to say her cholesterol and her blood pressure as well. Teuf, it amazed me as well. Maybe the Coq 10 and Orosine combo. Unfortunately now, big pharma put regulations on the red yeast rice. Too dangerous a dose for over the counter🤷♀️
I don't usually post here, but when a specific question is directed at me, I try to answer it. I need though a clarification. What do you mean when , "I need to find out from Dr. Wassersug, do you taper off from Lupron as your numbers go down, or is it one or the other." Can you restate that? What is your precise question?
Also, just so folks don't get mislead, the "Dr." in front of my name is in reference to my PhD. I am NOT a physician, but a PCa patients and research scientist.
When trying to get a low dose prescription for E2, your name came up with my MO. He was aware of you. I got the prescription, now fighting with the Insurance company.
Ramp, what is the cost of the cream, I didn’t think the insurance would pay for this, as it does not fall into the expensive Lupron Category and the standard medical treatment.
To be clear, two different things are being discussed here: it is HIGH-dose E2 that would be "taking the place of lupron" as it is effectively just another form of ADT, that serves to drop T to castrate levels (but with fewer side effects).
The LOW-dose E2 serves to reduce side effects (by mitigating bone loss, hot flashes, etc.) but is not in itself a form of ADT. Only higher doses can bring T down. So the low-dose is usually ADDED to an ADT agent like Lupron, not used to replace it.
Noa thank you. As I am understanding, Ron has the high dose gel and has taken this instead of lupron. Jim would start the cream and not get his 3month Lupron shot next time around and see how it goes. Is this correct ?
Right, Ron is doing a higher dose, and it sounds like Ramp7 is looking to try the lower dose.
As far as insurance goes, I do not believe there is SOC approval for either application. So E2 for men with PC is an off-label use, whether high-dose (as ADT to treat the PC) or low-dose (to treat symptoms associated with Lupron, etc.). To be covered for either, sometimes a doc will need to clear it with the insurer first, but they still might deny it.
My doc prescribed high-dose for me as ADT, and the insurance paid. It was patches, not cream or gel, because patches are the only protocol proven safe via clinical trial (see PATCH trial results, Lancet 2021). My doc never would have approved this method for me if those results had not been published.
Be aware that a small percentage of men (like myself) do not have success when trying certain brands/dose of patches. While other men here used the same brand at even lower doses than I did, and got their T to go <20, for some reason my T stayed over 100 for two months (and even at a very high dose never got below 60). So T must be monitored closely and the plan aborted if one cannot become castrate within a month or two, because lower T that is still well above castrate levels may PROMOTE progression of PC rather than slow it.
Also take heed of Richard's warning about the potential for E2 to be harmful for some men with BRCA mutations or a history of breast cancer in the family.
the BRCA mutations and history of breast cancer in the family will be part of his decision. Noa, nothing is easy any more, as I see what the lupron has done to him, terrible situation.
Another question to consider is, are the side effects from the low T in general or are they specifically from Lupron? Some men do have what seems to be an allergy to Lupron itself, and if that's the case then QoL should improve.
But if its the low T itself that is making things hard, then low T from E2 might not be that different from Lupron. Of course, the E2 does have the benefits of better bone health, no hot flashes, etc. So probably worth a try, if you can get a doc to approve it... that can be a challenge, so make sure you show the doc the Lancet 2021 editorial where the two Dana Farber MOs say it is a safe alternative form of ADT.
Noah, I believe we need to give this a try. The decisions in my life regarding medical advise tells me to trust this decision in favor of the cream. I will make a copy of the Lancet 2022 editorial. Noah Thank you for your good advise and thoughts, as I am lost at times and seek this good and positive way of thinking. I welcome all advise, believe me, for, against and down the middle!
From what these T levels have been, you can see that only a few are actually in the castrate range:
7/13/2017 - 455
6/19/2018 - 349
8/3/2018 - 106
10/30/2018 - 72
1/2019 - 45
8/10/2019 - 10
11/06/2019 - 91
2/11/2020 - 99
5/14/2020 - 25
2/16/2021 - 13
12/11/2021 - 341
4/2022 - 57
7/2022 - 50
11/2022 - 84
Even though my T is only about 20 to 25% of a normal man of my age (79), I still am able to exercise daily without any difficulty. In addition to my gym routine, I still do 2 sets of 20 pull-ups on my balcony every day.
I think the fact that only a few of your readings are actually in the castrate range means you are having better luck than some would. For ADT, better results on average come with T <50, and best results at T <20.
Seems to show how much PC can vary from man to man, because some men with those T levels might not be doing as well as you! It could also be that you are one of the men for who exogenous E2 is directly toxic to PC?
If anyone wants to try the E2 gel, PM me and I can supply you with what Richard Wassersug and I are using at a 'small fraction' of what the pharmacies are charging. The gel that we are using is 'in place' of Lupron, not in additional to.
Just in case any of you are wondering how this E2 is produced, it is derived from the urine of pregnant mares.
Thank you Dr Wassersug for your reply, I am so touched by this! I was talking about his PSA. My husbands blood work falls all within normal range and his PSA remains between 5 and 8. The numbers were regarding his PSA . How do we monitor his cancer as we use the cream, is the indicator his PSA numbers. I am guessing we let the lupron slowly get out of his system. I am not asking you to tell me what to do, just give me guidance. Before his cancer, we only led a healthy life style with very little medical interference. I believe this is for my husband and so does he… we are in, Dr Wassersug! btw, your credentials are more then perfect ! I can’t tell you how much this means to me, I feel I am going to loose him if not to the cancer but the drugs.
I don't mean to interrupt your messaging with Dr. Wassersug; however, I think he may agree with my opinion here. Most of what I know I learned from him.
PSA levels are probably the easiest and most valid indicators of a man's PCa progression or lack of? Regarding Jim's current PSA levels of between 5 and 8, it is still a bit high. Either continue the Lupron jabs, and/or use the tE2 gel along with the Lupron until his PSA drops down to undetectable levels. Opinions vary on what is considered 'Undetectable' after treatment, but I think most doctors would agree that anything less than 0.1 would be in the undetectable range. I normally get PSA blood tests every 2 or 3 months.
Since my PSAs have been in the undetectable range for almost four years, I have recently reduced the amount of gel that I use. I will continue reducing my usage providing my PSA remains in the undetectable range. Some days I actually forget to apply it.
If you can find the gel that I am using, Jim can try it for a few months without getting additional jabs. I can have some sent to you...I think you already sent me a PM regarding this. I'm not in the E2 gel business; however, I have sent some to my friend in CA so that he can accommodate fellow warriors that would like to try it.
Ok, I think the question is how does one know how to safely get off of a LHRH drug, like Lupron, and over to using high dose transdermal estradiol (E2) for ADT. As far as I know, there is no literature or specific formula for how one should do that.
Personally when I did it, I didn't know how long it would take for the Lupron to clear out of my body and for the E2 to take over. So, when I was getting near the end of three months and due for a new Lupron depot injection, I instead slowly started ramping up the E2 over three weeks. This was all under the guidance of my medical oncologist. To make sure I was getting adequate T suppression without E2 rising too high (increasing the risk of blood clots), I got weekly blood tests and tracked my PSA, my T and my E.
I'd recommend that to anyone thinking of make the switch. HOWEVER...
1. The is all off label use of E2. As such, I don't recommend anyone doing that without MD supervision.
2. I would not do it without first making sure you don't have an estrogen sensitive genetic profile, with a family history of estrogen sensitive breast ( or prostate) cancer.
3 I would not presume that E2 is more effective or safer than the LHRH drugs for T suppression. We need the final PATCH research data from the UK to know that.
Along those lines, RONRONHU correctly pointed out that a PSA in the 4-8 range suggests that an LHRH drug isn't controlling the PSA; i. e., not driving it down into the undetectable range. There is no reason to assume that E2 can do better than Lupron in that regard. If LHRH agonists and antagonists can't control the cancer, there no reason to assume that E2 can do the job. In fact, if the cancer is truly castrate resistant, staying on E2 may be a bad idea. I suspect that final PATCH study data will give us some insight into that.
I hope I didn't mislead anyone into thinking that the tE2 gel would do more than the LHRH injections? The major advantages of the E2 gel are the lack of side effects, cost, and no doctor visits.
I’d be one of the first to give that a try , ordinarily …. But it’s “ late “ and everything inside my body is screwed blued and tattooed yayahahahaya you look great, and evidently have few issues ( just the urinating thing ) like you said, it was widely used at one time. You are the poster boy for what a lot of us would want to be, for sure.
This is definitely the direction I'm taking if/when the time comes. The QoL issues with Eligard were horrendous. Even if there is a slight increased risk of a CVS event, I'm fine with that. I was praying for a heart attack for 18 months.
I promise, I will let you know as Ron has. I can’t tell you what the ADT has done to my husband. He is quiet and so alone. I see it in his beautiful eyes!
OH my Buddha! That is the exact same thing that I buy for $15. I just can't imagine how any seller can rip people off like that? My pharmacy probably pays half of what she sells it for.
Hello, Ron Ron or E2-Guy. I can not find any information on Estradiol gel application, as in how often & how much. We can not buy the patch here but I found a supply of the gel & will go off ADT.
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