I would appreciate any input regarding Estradiol Patches . I would love to get off Lupron . Thank you in advance .
Estradiol patches: I would appreciate... - Advanced Prostate...
Estradiol patches
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Sun1115
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These links have info on the PATCH study. Estradiol patches improved bone density meanwhile obtaining the same castration levels of testosterone than Lupron:
Your oncologist can prescribe them to be made up by a compounding pharmacy fairly cheaply. PM Wassersug.
Before he gets his hopes up, he should see if his MO is willing. The MO certainly CAN do that, but will he?
I talked to Richard, and he is a great resource. I am also will to discuss what I've learned with anyone interested. But neither of us has the power to convince a doc that high-dose E2 can work.
I agreed that is my experience. I could not get any MO I consulted with to agree with estrogen patches and/or tamoxifen
PATCH/STAMPEDE results are a few years off. Estrogen has been used as a "Hail Mary" play when all other hormonal therapies have failed. My friend's oncologist put him on it in that situation. There may be higher risk of potentially fatal clots even with transdermal preparations, so the survival advantage must be proven.
TA: You write, "There may be higher risk of potentially fatal clots even with transdermal preparations, so the survival advantage must be proven."
Must be proven before what? Not a goddamn thing needs to be proven to me. Soon I'm going to be forced to choose between living the rest of my life:
a) feeling good with a very slight risk of a heart attack or blot clot, or
b) not running that risk but feeling so lousy both physically and emotionally that I'm hoping for a lethal accident every time I get in a car.
I choose a), and I doubt the mental competence of anyone who chooses b).
I would add that, to my knowledge, there has been no evidence to indicate that there actually IS a higher risk of potentially fatal clots with transdermal preparations. The whole reason it has been chosen over oral estrogen is that the evidence (for decades) has pointed to that higher risk very likely not existing.
TA takes the opposite approach of mine: I suggest that rather than thinking the survival advantage must be proven, the clear inferiority must be proven. If decades of evidence do not show a certain therapy is significantly inferior, then (for me) it is on the table.
It's not as if estrogen is an untested and untried therapy for PC.
PS -- bicalutamide (which I'm on) lets you keep your estrogen
If indeed there is increased risk of a clot (I have not heard that from Richard W.), the D-dimer test can be used to monitor that. If it is close to zero - no clot. Otherwise, assume a clot & treat with nattokinase.
Best, -Patrick
Right. I haven't been able to find anything that suggests an elevated risk of a CVS event, not that it would matter to me anyway.
"Must be proven before what?" you asked. It must be proven that blood clots won't kill the men before prostate cancer does. The risk may not be "very slight" as you imagine. Estrogen was the original prostate cancer therapy, but was abandoned because there was serious risk of deaths from clots.
There was recently a drug developed called Capesaris. It is a selective estrogen receptor α (ERα )agonist. The manufacturer hoped that by selectively targeting only that one kind of estrogen receptor, they could minimize clots. But at the doses necessary for equivalent therapy to Lupron, significant increases in clots still occurred and the drug was abandoned. I sincerely hope transdermal estrogen does better in the PATCH/STAMPEDE trial. But, unlike you, many men are unwilling to accept the risk of fatal, crippling, or debilitating cardiac or pulmonary thrombosis. or ischemic stroke when there are alternatives that don't carry that risk.
Well, if there are "alternatives that don't carry risk," that's terrific.
Given the extent of the STAMPEDE trial, I'm having a hard time understanding why we don't have an extremely accurate quantification of the risk associated with tE2. Can you speak to that, please?
Sure. There was a very good randomized trial in the UK, called PATCH. STAMPEDE, a series of landmark trials on various therapies incorporated PATCH so they do not compete for patients. It takes years to accrue and follow an adequate number of patients to have useful results. There are 2200 patients in the trial. First results are expected August 2021.
clinicaltrials.gov/ct2/show...
You misquoted me. I wrote: "alternatives that don't carry that risk."
Thanks, and sorry for the error.
If you can clarify something else, please:
Is it true that the FDA will not approve a treatment option if it's even slightly inferior in terms of overall-survival even though its SE profile is far more tolerable?
If so, I challenge that on moral grounds, on the basis that it's really not serving the best interests of Americans, and that's what they're there to do. To say that surviving is the only important criterion in life is simply asinine.
No, that is not true. They look at both safety and efficacy. As you can see in the trial design, The objectives are:
Primary
Compare the progression-free survival and overall survival of patients with locally advanced or metastatic prostate cancer treated with transcutaneous estrogen patches vs luteinizing hormone-releasing hormone analogues.
Secondary
• Compare the cardiovascular system-related morbidity and mortality in patients treated with these regimens
• Compare the activity of these treatments, in terms of castrate level of hormones, failure-free survival, and biochemical failure, in these patients.
• Compare other toxicities, including osteoporosis, hot flushes, gynecomastia, and anemia, in patients treated with these regimens.
• Compare the quality of life of patients treated with these regimens.
Remember that transdermal estrogen is already available in the US. Some men use it in low doses to control hot flashes.
Excellent. Thanks.
I am far from an expert on this subject. I thought the original use of Estrogen was by way of injection. That was dangerous because because (in my simple terms) all of the drug was injected at once and the body could not clear enough it. The use of patches and gels allowed the drug to be GRADUALLY absorbed through the skin giving the body enough time to react properly. Make any sense?
Transdermal estrogen (patches) is what is being tested. It is never injected. The old way was taking estrogen pills.
As i said i am no expert, but then it seem the pill was the problem of how the drug was being absorbed. Using a patch or gel seems to decrease the risk of blood clots. Understand we have to wait for the results of the trial to prove this, but it appears we may have an alterntive to lupron etc.
Yes, some men on this site use it. Richard Wassersug is a proponent.
Your first challenge will be to find an MO or urologist will to undertake what is not established SOC in the US. If I could have easily found one in New England, I would be doing high-dose E2 rather than bicalutimide.
You might at least try to get low-dose E2 to mitigate side effects. Or, you could go totally off the reservation and pursue something like "bipolar therapy" -- but that is also not SOC, and probably riskier than high-dose E2.
The record for high-dose E2 in transdermal (NOT oral) form is really starting to look pretty good. But that is not enough for docs, or insurers, or the FDA, to embrace it. The inertia of SOC machinery dictates SOC by consensus, not by men's preferences. Patients are not allowed to choose "off-menu" options and get mainstream care and coverage.
The important thing to note about doctors open to other ideas is that they cannot suggest anything other than standard protocols. One has to come armed with study information & a precise presentation of what you want to try. The doctor will balance what you may achieve against that of the standard therapy. There comes a point when a doctor may be sympathetic, when all he has to offer is a few months of benefit.
On a grim note: ond doctor said to me - "I have no problems with patients wanting to try other things - it's the widows that cause the problems."
-Patrick
An alternative is 150 mg Bicalutamide instead of Lupron. Fewer side effects.
Yup, I'm a month in, so far so good!
Hmmm... why didn't I mention my OWN alternative therapy in my original reply to the OP? Duh. Thanks for reminding me of my brain fart!
The side effects of Lupron are in large part a result of a loss of E2 that results from losing all your T. The bicalutamide is only blocking the androgen receptor, so my T and E2 serum levels are actually INCREASING with this therapy.
That said, it was even a bit difficult for me to find an MO willing to do 150 mg bicalutamide instead of Lupron. That dose was actually never approved (for monotherapy) by the FDA, so is still "off-label" as I am using it. Thankfully, it is established SOC around the world and has been well-studied.
Nicely said.
Yes, but few of us have the confidence to design out own protocols without "permission" of a watchful and approving MO or urologist. Hats off to you (and Patrick)!
Nal, Are there any supervised BAT treatments or BAT trial using DES and supra testosterone levels as indicated by you. Has it helped bring down PSA . Theoretically it sounds exciting for someone like me with PSA of 81 post Zytiga .
This link contains the protocol in use for the PATCH Trial plus interim results; it includes the pre-labs and the follow-ups to monitor. It appears the results to date are not inferior to Lupron and some of the side effects are reduced/mitigated.
Nala, I get 3 months of 2mg caps for under $50 from a NJ compounding pharmacy (includig shipping) - a prescription is required.
-Patrick
I’ve been using three .1 mg estradiol patches changed weekly since 2/19 by Sandoz . My urologist prescribed them when I asked him to look into it. Much better than Lupron and it’s ilk.
The point about blood clots is, that unfortunately in the PATCH trial you are out if you have heart issues. So it is difficult to know for this category if it is more of a problem.
A study was done between Lupron and Firmagon specifically for people with heart issues and there was a much better result with Firmagon. Still, some doctors say it was more a "publicity" for firmagon. Don't quite understand why doctors prefer lupron.
And why don't they give estradiol in addition anyway?
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