Hello,
I'm doing a survey of estrogen users. I'd like to find out:
1. How many patches or gel pumps do you use a day, or a week? And what dose of E2 patches do you use?
2. What's your PSA?
3. What's your estradiol?
4. What's your testosterone?
5. What's your DHT (if you measure it)?
6. How long have you been using estrogen?
And, anything else you'd like to share.
I will analyze all of the data and present a report.
Thanks very much!
Bob
Been using 2mg E 3 times a day sublingual, with 50mg bicalutamide and 5 m g finasteride about 1 year. PSA .1 T 160, E 185, DHT very low,
Excellent numbers! Thanks for sharing.
How are your side effects? Any cardiovascular problems? Lipid changes?
What's the name of the E pill you take?
nope , just had a 3d image of my heart, all is well. no bone density issues. lipid normal. I do also take 50mg Sildenafil daily. Estradiol. I was diagnosed with PC cancer September 2020 and did Tulsa Pro Ultrasound December 2020. I also had BPH ( 106cc prostate size). Tulsa fixed both. But I still have a prostate and it continues to grow and PSA goes up and down. I talked my urologist into delaying ADT (Eligard) and radiation and he relented to me taking Bica and Finasteride. I am taking estrogen on my own. They are all very surprised that my PSA is now .1. Cured? probably not but if I can kick the radiation ball down the fiend for a few years, I am in. Cheers!!
thanks! Interesting journey.
I plan on taking E2 on my own, if the MO doesn't approve it. I may have to take Relugolix to satisfy her, in addition to TDE. The combo should reduce T well below 10 ng/dL, which would be great.
Bob,
I'd very much like to be kept abreast of this (and may even become patient X) But could I add what may be a (stupid) question: How did you fare on oral medications to control testosterone (are you ineligible if you've failed, say, Xtandi?)
I haven't started my treatment plan yet. Hope to start RT (SBRT) and ADT in a few months. I want to use Estrogen gel instead of Lupron ADT. need to convince my MO it's safe and effective.
Sorry I couldn''t answer your question.
Most likely you will not be able to convince him or her of its efficacy. I did bicalutamide before Tulsa for 6 weeks and 2 weeks after. I was told by both my medical oncologist and even the forward thinking Tulsa doctor that it would have no effect. In reality it shrank my prostate and the tumor enough to save both set of nerves. If I had known that I would have had even better results if I had chosen to add finasteride and E I would have done it back then. I did a, "Let's try it for 90 days and see what happens". At the end of 90 days my PSA dropped from 5 to .6 and the end of 6 months to .1 postponing anything else for the time being. I had to sign a waiver that it was against medical advise but when I told him my concern about bone loss and radiation cystitis plus radiation related bladder issues and he had no guarantees of a better outcome if I did what he wanted today vs what I wanted to do. My personal choice. So far the only issue is some breast growth. Erections are good and sometimes great just as before I started this regimen. Take care.
1. How many patches or gel pumps do you use a day, or a week? And what dose of E2 patches do you use?
Two 0.025 MG/24HR twice weekly patch
2. What's your PSA?
<0.02
3. What's your estradiol?
28
4. What's your testosterone?
<13
5. What's your DHT (if you measure it)?
N/A
6. How long have you been using estrogen?
almost one year
NOTE: I'm also on Orgovyx
Thank You! You're my first responder to the survey.😀
It sounds like you are using E-patches as an "Add-On" to ADT, to help reduce side effects, like hot flashes.
How are your side effects now?
I would have thought your T would be lower, since you are doing Combined ADT (Orgovyx + Estrogen).
Your estradiol is right in the middle of the normal range. It could be higher to get additional reduction in T. More patches would reduce the T-nadir.
The attached plot shows significentaly improved overall survival probabilities for men who get their T < 10 ng/dL, as compared to 10-20 ng/dL. I have one man tell me he reached T=3 ng/dL on estrogen patches.
Had follow up with my oncologist yesterday.
(Recap - diagnosed with PC 4+3, PSA 17 Jan 2023, RP in April 2023, PSA 0.00 in Nov 23)
After 1 month on .25 estradiol gel:
PSA in Feb was 0.03 in March 0.031. Two different labs were used, the former only went to hundredths, the latter was in thousands. Previously it had gone in Nov to Feb from 0.02 to 0.03. Slight rise in the 3 months. The 1/1000 difference is well within error margin and does not show any noticeable difference. One would suspect if the cancer was active, the doubling factor would should a much higher increase. T level was at 450, it had come down a little but not much.
In the initial script for estradiol, Dr did under prescribe to gauge my tolerance to the estradiol. I've had no noticeable side effects. Dr has now bumped up the script to be more inline with PATCH which administered 4X Fem7 patches delivering 100 μg over 7 days = 400 mg / 7= 57 μg per day.
Have follow up in April. Will be looking for the following, T should come down significantly in the next 30 days, PSA should not have an increase. Will see how that turns out.
Should have results back from Signatera test soon, which should give a better understanding of the cancer.
Adjutant radiation has been put on hold for now. I'm not against adjutant radiation but if the cancer can be controlled without it GREAT!
BTW - estradiol cost, Trigen 0.25 estradiol gel in Feb $55 (Costco out of pocket price), not covered under my insurance. Estradiol is an 'off label' use in my case. March the same script is $125, Costco could not find a reason other than manufacturer increased the price. My new script for 0.50 estradiol gel is $51 same manufacturer, go figure. Trigen was the least expensive manufacturer, the others were almost double the cost. The cost for the estradiol gel is negligible compared to LHRH (Lupron) which is several thousand $$$.
Will be interesting when PATCH does publish results, which show tE2 does work, Big Pharma could lose a lot of money. Question would be if FDA will allow estradiol use for ADT as either an off-label or as an actual Standard of Care? Hard to tell what will happen since FDA and Big Pharma are so tied into each other.
So here is a way to get it all covered. Find a Doctor that works with trans and Non-binary patients and tell them you are non-binary and with to start with 2mg E twice a day, plus 50mg Bicalutamide, and 5mg Finasteride daily. Bica might cost you something but it will be covered as most insurances cover it today including my Humana Medicare. I use Queermed.com out of GA but they only cover a few states. or if you want the patch do that but tell them what you want. You might want to explain that you want to enjoy being a bit more feminine and that you have support of your partner ( or wife, husband etc.) Do not tell them you have PC. Good luck!!
That could be one way. The cost is minimal when considering Quality of Life, maybe I am lucky that I am in a position where the cost is well worth it. If push comes to shove, may need to go one less day to the range. Easily drop a couple of hundred in a session even with reloads.
That's a great idea ! Thanks.
The E-gel is not expensive, I think ($55/month).
I already have some moderate gynecomastia because my estradiol naturally runs high. So, it's not a problem for me or my wife. That said, I may get a single dose of Radiation before starting high-dose estrogen, prophylactally, to prevent further growth. (Sometimes I look enviously at men in the gym who have perfectly flat chests...).😉
Thanks for the data points. Sounds like you have a good plan.
I would be interested in your Estradiol and DHT levels, if you measure them.
How many pumps of 0.5 gel do you do a day now?
I was told the PATCH study will be published this Fall. It will take time for the FDA to approve it.
How are your side effects now?
Are you currently doing ADT (Lupron, etc)?
Do you know if you are castrate-sensitive or castrate-resistant at this point in time?
Also try Goodrx card. I also use INDIAmart app and have shipped from india - E, T-gel, Bica, Progesterone, E-gel( about $15 per tube including shipping), expensive eyedrops, etc. Estrogen used to be used for PC before surgery existed, then came bicalutamide and finasteride, then radiation and ADT ( around 2014 when the Casodex( bicalutamide) patent expired I am guessing). All research seems to have stopped looking into alternatives because they make too much money on Lupron, etc. Good luck but don't expect much support from your MO, or urologist.
Thanks.
I order my Cialis from India through a pharmacy in Canada, Blue Sky.
That's what's great about TDE...it's cheap. I think that's why the UK is doing the PATCH study...they're looking for ways to treat PCa more cheaply because of national health care.
I also have a good friend who is a MD that I see as one of my two PCPs. He is an alternative doc with great interests in hormones. He will prescribe the TDE if I ask him, guaranteed.
I'm using E2 for side effects, but more importantly for me, for dealing with osteoporosis. My bone density has been negatively impacted by 11 years of warfarin for my aortic valve replacement plus using ADT the last few years. Orgovyx has been very tolerable so far. My levels have mostly been 28 although I had a 45 and a 37. 44 is supposed to be top of the range so I've been trying to stay in range. I was briefly on 0.05 before going on my current dose but wanted to stay in range.
Thanks.
Have you done a recent DEXA scan to check your osteoporosis level?
What is your concern about going above the reference range of E2?
People who take high-dose estrogen patches (for example, the PATCH study), have much higher serum estradiol levels (median = 460 pg/ml...10 X greater than your level), with few bad side effects. The effect on Bone Density is huge. See attached plot. Their T is about 11 ng/dL, so High-dose TDE monotherapy does a good job at castrating men.
I had one Dec. 8 but things had actually gotten worse in the 16 months since my previous test. But I hadn't been taking sufficient D and calcium. That's very interesting about better results at higher levels. I have thought about going to Estradiol only without ADT, but the ADT seems to be working well and I don't want to upset the proverbial apple cart at this time.
Something to keep in your back pocket.
Higher doses of E2 seem to give better results, overall. I fully expect the PATCH trial to show that Lupron ADT and high-dose E2 have the exacts same survival curves. Show this plot of BMD vs time to your doc. I can email you a good quality .pdf of the Figure, if you send me your email address.
I take 10,00 IU of Vitamin-D a day, with no bad side effects.
Pre-Orgovyx I was looking at doing a PATCH-level estradiol regimen and still may. The problem is right now, in many cases, the patients are way ahead of the doctors on this. My primary who has been my doc for 20 years was willing to provide the script. But getting the right info and dosing isn't as easy because of the unfamiliarity of it. I certainly haven't ruled out dumping the ADT at some point. And if higher doses are promoting more robust bone repair, etc., then that's something I need to learn more about. I'm currently on a temporary 3-month regimen of 50,000 units of D2 per week. Then I retest and if the D level is over 30, I'll be getting an infusion of Reclast in late May.
You should ask Daryl if you can post this questionnaire a few times so as to get a better connection with more of the members on here. 😉
Would be interested in your Estradiol and DHT levels, if you measure them.
No, not at this time.
How many pumps of 0.5 gel do you do a day now?
Come is an individual dose small packet.
I was told the PATCH study will be published this Fall. It will take time for the FDA to approve it.
To be seen if the FDA will approve, as you can see, not a fan of how FDA and Big Pharma are so intertwined. If the FDA does not approve, hopefully they will not restrict as an 'off label' use. LHRH and Relugolix are huge income (several thousand $$$ for each dose/script) sources for Big Pharma. Dr's office that give the LHRH shot also get a piece of the action, what will their incentive be to prescribe a generic alternative? Does anyone really believe Drs will jump off the LHRH/Relugolix train and go to prescribing estrogen/estradiol? Some will but others have boat payments to make :), OK, maybe I'm too cynical or a fan of 'The Lone Gunmen' (The X-Files), a conspiracy theorist, counterculture patriot.
How are your side effects now? So far no specific SE.
The only difference since I've been using the gel is sleeping. Most night no need to get up to use the bathroom, if I do wake up, will go back to sleep quickly. Many nights have been getting ±7 hours. Is this a cause and effect? Or a coincident? In my discussion yesterday with Dr, could be the estradiol has reduced any inflammation in the pelvic floor, again this is just a guess). Will be tracking SE as moving forward.
Are you currently doing ADT (Lupron, etc)?
NO! Stictly estradiol.
Do you know if you are castrate-sensitive or castrate-resistant at this point in time?
No, now that the dose has been increased, if the prelim reports from PATCH are correct, should have a major drop in T over the next few weeks. Time will tell.
Do you use 1 packet of 0.5 E-gel a day? Or, some other dosing?
(I'm assuming that's 0.5 mg of estrogen in a single packet).
Please let us know how your numbers change over the next weeks/months as you go to a higher E-level. We're very interested.
Congratulations on blazing a new (old) path!
Since some have an issue not answering the questions
1. How many patches or gel pumps do you use a day, or a week? And what dose of E2 patches do you use? Neither
2. What's your PSA? 0.00 to 0.031
3. What's your estradiol? UKN
4. What's your testosterone? ±450
5. What's your DHT (if you measure it)? UKN
6. How long have you been using estrogen? 30 days
And, anything else you'd like to share. Did previously but not in bullet form. 
Let me put this in the bullet point format, can't help myself LOL!
Do you use 1 packet of 0.5 E-gel a day? Or, some other dosing? 1 packet per day.
(I'm assuming that's 0.5 mg of estrogen in a single packet). Correct
Please let us know how your numbers change over the next weeks/months as you go to a higher E-level. We're very interested. Will do just have to be careful on tangents, could be boring to some.
Congratulations on blazing a new (old) path! Thanks, looking forward to the trek.
Bob, you should also ask the members to answer in bullet form; such as your questionnaire. The one thing you will find on this site is that people go off on their own tangents and the original question gets lost completely. What you are doing is wonderful if people would stick to the question asked, such as New Potatoes Caboose who replied perfectly. Good luck and take care.
Bob - you need to question as to the purpose of the transdermal estradiol - (1) estrogen add-back or (2) ADT replacement. I believe No. 2 is your primary focus. This survey could be very helpful and I think we will find that there are estrogen patch users in both categories.
BTW can I see that No. 1 has already shown up in one of your replies above. And the term "ADT add-on" has been used. I don't know if this is a good term or not. I think it is synonymous with add-back. (For new readers this topic has been discussed extensively in other posts.)
Both treatments are useful and relevant. The question is: what is the optimal dose of TDE?
Existing ADT users may want to add-back low-dose E2 to reduce hot flashes, for example.
But new patients who hate the serious side effects of ADT will be interested in substituting high-dose TDE for ADT. The trick will be to find the right TDE dose.
Some people, like myself, may consider doing a combination of ADT and high-dose TDE, in order to minimize testosterone. T-levels less than 10 ng/dL are associated with significantly improved survival outcomes. (see plot).
Nice questionnaire, I wonder couple things, on estrogen, so you hit on DHT. So I imagine people are experiencing hair regrowth on the scalp for male pattern baldness and hair thinning on the rest of the body, as typical with ADT.So as far as strength, stamina, and energy does estrogen help in that effect over Lupron ADT?
Yes, lowering-T due to chemical castration will also lower DHT to very low levels, which is what Dutasteride does. So, hair growth should be better. But, since the T is also very low, this may not promote hair growth. I'm not aware of any data, pro or con.
High-Dose estrogen does not help stop muscle weakness and muscle loss, because estrogen reduces T to very low levels. Fatigue may be reduced because hot flashes are significantly reduced, resulting in improved sleep quality. Not sure about energy and stamina.
I should have asked about that in my survey...
Reduction in Testosterone to very low levels will result in hair thinning and loss on your entire body EXCEPT on your head for male pattern baldness (MPB). Since DHT is responsible for MPB, when testosterone is reduced to castrate levels, the DHT which is converted from Testosterone is reduced as well. You sprout hair again in areas of MPB.
I've been through it, many people on this site have remarked about that as well. It's a know result.
1. How many patches or gel pumps do you use a day, or a week? And what dose of E2 patches do you use?
Two Sandoz Estradiol Derm 100 patches, 8mg and .1mg/24hr. Change one each day
2. What's your PSA?
<.008 ug/L
3. What's your estradiol?
500-1000 pmol/L
4. What's your testosterone?
<.4 nmol/L
5. What's your DHT (if you measure it)?
Reference baseline <5 ng/dL
6. How long have you been using estrogen?
Estrogen patches since Sept 2017 so 5 1/2 years ish.
Thanks !
What are your units of Estradiol? pg/ml? or European (pmol/L)?
If you don't mind me asking, how is your libido?
I've read conflicting reports about the effect of high-dose estrogen on libido.
Bob
Edited my response to include units of measurement for each indicator.
Libido is shot, I'm 72 and the dog doesn't care and cancer is technically in remission.
My Onc requested a bone scan last year and no indications of bone degeneration at all.
I do take 10,000 iu of Vitamin D as well as 500mg Metformin as it was shown that men with PC with Diabetes on Metformin seemed to have longer life expectancy
Thanks !
Your estrodial is 145-290 pg/mL, and your testosterone is < 11.5 ng/dL, in US units. Those are very good numbers.
You must be in the UK, yes?
Thanks for sharing your libido status. I'll take that off my list of pros/cons for E2 therapy.
I also take 10,000 IU of VIT-D. There's a lot of inaccurate information about high levels of Vitamin-D causing D-toxicity.
Canada.
My GP was shocked when I told him how much Vitamin D I was taking so he immediately sent me for bloodwork and results were just fine
Are estrogen patches safe?
Estrogen for Bone Health in PCa patient.
How did you have access to estrogen patches if outside trial?
Estrogen for BRCA positive patients
