Why is it not standard to give some e... - Advanced Prostate...

Advanced Prostate Cancer

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Why is it not standard to give some estradiol in addition to lupron?

50 Replies

Is there any downside? estradiol would be good against hotflash and also for bones.

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50 Replies
GP24 profile image
GP24

Because it is not FDA approved for that purpose. Nobody will pursue an FDA approval for that purpose so we all and all patients for the forseeable future will have to suffer.

An FDA approval is very expensive and in effect protects big pharma from small competitors. This is not the intention of the FDA but the result of the current procedures.

pjoshea13 profile image
pjoshea13

I don't think it is widely appreciated that men (not just women) need estradiol [E2] for bone. Preemptive E2 will prevent bone loss due to low E2. Doctors are not much into prevention - only treatment. Bisphosphonates are not a good solution.

If ADT causes E2 to go below ~12 pg/mL there will be bone loss - & it will happen fast. The lowest dose of transdermal E2 - perhaps not even every day - will rectify that.

-Patrick

in reply to pjoshea13

Yes, just not sure if lupron(or firmagon) + minimum amount of E2 in form of patch has less problems for heart patients than going just on E2 patches, who knows....

Horse12888 profile image
Horse12888

Moreover, the presence of E2 will probably alleviate the other SEs. This is the rationale behind the PATCH/STAMPEDE trials in the UK, i.e., the SEs are the result of low E2, not T.

in reply to Horse12888

Yes, just not sure if lupron(or firmagon) + minimum amount of E2 in form of patch has less problems for heart patients than going just on E2 patches, who knows....

noahware profile image
noahware

It is not standard at least in part because many doctors are of a mind to treat only what they treat. An MO treats your PC, period. A really good MO will treat the PC and ALSO treat the disease (hypogonadism) that he has imposed on the patient, as his PC treatment.

To your other question, I know of no significant downsides.

Pleroma profile image
Pleroma

I am sold on the idea of the E2 patch but cannot convince any of my medical team.

Any tips from those who did manage to persuade their doctors?

in reply to Pleroma

I’d like to try them also . My mo shirks it off!

E2-Guy profile image
E2-Guy in reply to

'Screw' your "mo" Scott!

in reply to E2-Guy

I’ll ask him first ? These guys don’t like to stir the pot . He’s a nice guy. A hematologist oncologist. Not a pc guy. Because I’m still on the test drug and receiving free drugs and testing with no signs of pc no one wants to rock the boat. The plans of this mouse were to be over there in the next appropriate season , all dashed for now . Who knows anything with world politics gone mad ? Glad we made the move to Prescott. 20 degrees is huge in the summer . Big rodeo on the 4th. We avoid the mayhem but view the fireworks from the porch . Happy to be here . Take care Ronron ..... 🌵✌️😷

E2-Guy profile image
E2-Guy in reply to Pleroma

I also am "sold" on transdermal E2. I have been applying Oestrogel (as my ONLY form of ADT) for over two years now with great results. Last PSA as of 5/14/2020 was 0.003 and haven't been to a doctor for 33 months.

depotdoug profile image
depotdoug in reply to E2-Guy

33 months wow!

in reply to depotdoug

That’s Ronron! 💪🌎

depotdoug profile image
depotdoug in reply to E2-Guy

How did you accomplish this non-dr need for 3 years -3 months???

E2-Guy profile image
E2-Guy in reply to depotdoug

Since my father, and his brothers all did very well (without SE's) and lived into their late 80s on DES (oral estrogen) I began reading everything that I could find on estrogen therapy for PCa. I live in Thailand where MTF transgenderism is quite common so I was able to find numerous estrogen hormones in the pharmacies of which Ostrogel (transdermal estradiol...tE2) is one commonly used by the 'ladyboys'. As Tall_Allen has stated in this thread, oral estrogens can increase CV events; however, transdermal estrogens since they bypass the liver have a much lower CV event risk factor. The gel that I am using works the same way as the patch, but has the added advantages of being less expensive, causes no skin irritation, is transparent and dries within minutes.

A couple of years ago I asked if anyone on this forum was familiar with Oestrogel and Richard Wassersug answered me. He is the tE2 guru (has published two books on Androgen Deprivation Therapy), and has been using this gel for 17 years and still has an undetectable PSA. I have suggested the use of this simple therapy to numerous men on this forum and many have abandoned Lupron injections and are now using the gel. Alicat1 (who just posted below) is just one that has switched from Lupron to the gel and is thrilled with the results.

depotdoug profile image
depotdoug in reply to E2-Guy

Well never thought oral estrogen gels or patches sounds incredibly effective. My wife and I travelled to Bangkok way back in 1982 for an R/R from working in the magic Kingdom, Saudi Arabia. We went all over Bangkok, up in the highlands and of course the riverways all in 3 days. But that was before way before my PCa Dx in 2005.

I would have to weigh the CV effects or affects of Oestrogel gel with my heart conditions, but it would not hurt to ask and inquire with my 2 cardiologists and my MO and my URo/onc. You sure got my attention.

Thanks for the history lesson and info; now its depot Doug's research project.

Depotdoug

in reply to depotdoug

If you get an answer please give me a reply here, my husband is in the same boat, thanks.

E2-Guy profile image
E2-Guy in reply to depotdoug

Doug,

My wife and I first visited Thailand in 1976...it was a lot different then. After being separated from her for 15 years I decided to move here in 2005 shortly after my RP in 2004.

From everything that I have read, I believe the CV risks are quite low with tE2.

Seven years ago I had an extensive cardio exam which indicated that I had two small MI's which I wasn't aware of at the time. I don't worry about the tE2 causing an MI since I would much rather go quickly than to rot away from PCa.

depotdoug profile image
depotdoug in reply to E2-Guy

Excellent analogy ronronHU. Are lives are risks everyday no every hour or minute. Yeh, I’m an improved depotdoug heart 68.3 yo guy in the same boat as you are. And all of us

PCa Adv men are. I still think OES gel would be an inviting proper question for my PCP doctor 1st then my Cardiologist (new guy) I mean more improved cardio doctor and also my 2 urologists.

Logical as Spock 🖖 says?

Depotdoug

in reply to E2-Guy

I hear that!

in reply to E2-Guy

Ronron you amaze me .You rock! 🌵😎

Joeym1040 profile image
Joeym1040 in reply to E2-Guy

Where do you get your estrogel?

E2-Guy profile image
E2-Guy in reply to Joeym1040

I buy it in Thailand; however, I have been told that it is difficult to find in other countries and those that do sell it usually require a prescription. There are some people selling it online, but I know of folks that have been scammed.

in reply to E2-Guy

You’re my reason for my interest in it. You inspire me Ron. I literally cry like a baby at any injustice I see. I ve shed some tears as of recent for the thousand of giant Saguaros burnt up now in our200 , 000 acres of desert brush fires burning north from tonto basin now towards Payson and the forest.. The Saguaro is in a deadly decline. Since 1950’ they’ve declined by half around tucson. Car pollution. Be well friend. Good to hear from you 🌵😎

Fairwind profile image
Fairwind

If a doctor prescribes a non-FDA approved drug or treatment he is violating the terms of his or hers malpractice insurance which they all must have..They just won't take the risk, small as that risk might be..

in reply to Fairwind

I’m thinking it’s due to the low cost . They can’t profit from it .😩

E2-Guy profile image
E2-Guy in reply to

I totally agree with you Scott! No money in a patient self-medicating with a natural hormone that costs less than $25/month.

in reply to E2-Guy

We need to jump over and stock up. I cry when I see the saguaros aflame in some of our big brush fires here. Hope all is well Ron , Be well and happy ✌️🌵 Salud Senor!

E2-Guy profile image
E2-Guy in reply to

Scott, I expect to see you guys as soon as our ban is lifted; however, Americans may be some of the last tourists that are allowed to come here since it doesn't appear that things are improving there. In comparison, Thailand's population is approximately 1/6 th of the US and we have had only 58 COVID-19 related deaths so far. Even though Thailand continued to welcome the Chinese until mid March, we are doing a pretty good job of controlling the spread of the virus. Almost everyone (with the exception of a few non-compliant foreigners that think they are special) here wears a mask. We have to sign-in, sanitize our hands with gel (supplied at the entrance), have our temperature taken, and wear a mask whenever entering stores or malls. Even after entering a mall some of the stores make customers repeat the same procedures. We also have roadblocks where temperatures are monitored. If a person's temperature is above normal they are immediately sent to a government hospital for further evaluation. Delivery people are not allowed in our condo and customers have to meet them outside to receive goods. We also have our temperature taken each time we enter the condo.

I have been watching the news and I'm saddened when I see what is happening to America with the rioting, looting, burning, threatening and removal of police officers, and of course my favorite plants being devastated in the desert. I feel very fortunate to be an old man who was able to live much of my life in what 'was' the greatest country in the World! Wishing you peace and good health, Ron

in reply to E2-Guy

Its going to get worse here before it gets better. This could be a ten year event. Those predicting a V recovery In the world Econ have got another thing coming. Buy gold . Whenever the gate opens to us Yankees we will visit my dreamland destination your home. From what my Thai experienced friends tell me that respect for others is the main covenant of buddhism ..If America had even a slice of respect in our society or politics we could solve many of of our own woes. No respect for others is our problem and the reason for the decline. I’m happy that you’re in the right place . Peace to you !🌵🌎😷

Tall_Allen profile image
Tall_Allen

I know several men who get estrogen patches - why do you imagine it doesn't occur?

in reply to Tall_Allen

I’d like to try them? Do you think I should?

Tall_Allen profile image
Tall_Allen in reply to

It's certainly worth discussing with your oncologist. If you decide to go for it, get it made up by a compounding pharmacy - a LOT cheaper than the off-the-shelf brand. Tamoxifen will prevent gynecomastia.

in reply to Tall_Allen

Thank you Sir!

depotdoug profile image
depotdoug in reply to Tall_Allen

Can could I ask my PCP doc for Tamoxifen? He understands my situation from an overall health y perspective.

Tall_Allen profile image
Tall_Allen in reply to depotdoug

I think it's better if you ask your oncologist - he knows more about this sort of thing.

E2-Guy profile image
E2-Guy in reply to

ABSOLUTELY!

in reply to Tall_Allen

it does, but it is not standard. and since it seems to help against SEs I was asking if there is any downside to it. I mean why not systematically give it to who is on ADT (against bone loss, hot flashes)?

Tall_Allen profile image
Tall_Allen in reply to

Because estrogen was abandoned because of blood clots. Even with transdermals, it remains a risk. It also increases gynecomastia. All of the risks and benefits have to be discussed with the doctor and should not be automatic.

E2-Guy profile image
E2-Guy in reply to Tall_Allen

One of my older and exceptionally candid urologists at Loyola told me when I started using Oestrogel to "Take a baby aspirin every night and you'll be just fine."

in reply to E2-Guy

Do you?

E2-Guy profile image
E2-Guy in reply to

Instead of buying the more expensive baby aspirins, I just buy a large bottle of cheap 325 mg aspirins and take ¼ of the tablet every night before retiring.

in reply to E2-Guy

That’s pretty Easy tiger! Awesome really .. 🌎💪

Alicat1 profile image
Alicat1

I've been using Estriadol gel for a year now. My QOL has improved remarkably. I'm in Malaysia and my oncologist who is quite open minded actually approves of me using it although I don't think he is allowed to prescribe it due to legal/medical practice protocols. In any case it is not available here only across the border in Thailand. My Psa has declined steadily over the past year. Currently at 0.16. I did have some minor bone lesions namely on the femur which I took bisphosphonates for. However now I can walk a lot better and feel no pain from that area. I'm sure my bone density has improved.

in reply to Alicat1

Great news! Keep it up !

EdBar profile image
EdBar

I’ve been using estradiol patches for over five years now, definitely helps with SE’s in particular, hot flashes. A good MO who specializes in PCa should have no problem prescribing them. Originally Snuffy Myers prescribed them for me. During a recent review of meds with Dr. Sartor he made a point of what a good idea it was that I continue to use them given my long term ADT use.

Ed

in reply to EdBar

What is your patch dosage? Are you on lupron?

EdBar profile image
EdBar in reply to

Yep, Lupron for over 6 years now and Xtandi for almost five years. Dose is 0.1 mg, I change the patch twice a week. My local MO prescribes it now that Snuffy retired without a problem, Medicare covers it so it’s not some undercover “off label” use. My cardiologist doesn’t see any problem, estradiol patches don’t cause the same cardiovascular issues that estradiol pills do since they’re absorbed differently.

Ed

in reply to EdBar

👏🏼

abmicro profile image
abmicro

I am off my half patch of estrodiol because I had surgery and it is a clot risk. Clot risk can be eliminated by taking a baby aspirin which I cant do either because of surgery.

Dr Charles E Myers (retired) was a fan of the patch. You have to find a doctor who will be willing to prescribe off-label like Myers. My City of Hope dr in SCAL West Covina has no problem with off label, but I have a dr here who can prescribe some things off label.

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