Over the years, I have known men who have used low-dose DES (Diethylstilbestrol) with some success. DES has been discussed here in a few threads.
Wikipedia [1]:
"DES {was a} standard initial treatment for symptomatic advanced prostate cancer for over 40 years, until the GnRH agonist leuprorelin {Lupron} was found to have efficacy similar to DES without estrogenic effects and was approved in 1985."
"It is still available from compounding pharmacies ..."
Apparently, that is no longer true. A pharmacist told me that he could no longer get the powder, & couldn't work on a prescription for human consumption if he had the powder. He wished he could get the powder to satisfy the demand from dog owners:
"DES has been very successful in treating female canine incontinence stemming from poor sphincter control."
Strange that it is now banned in the U.S., considering recent interest in using 1 mg doses for CRPC cases.
In this article I read: "Despite showing greater efficacy than orchiectomy, DES was discontinued from routine clinical use as results from the VACURG trials showed that DES caused cardiovascular (CVS) toxicity in up to 35% of patients with 15% experiencing a thromboembolic event. CVS mortality was shown to be lower after therapy with low dose DES (1 mg) as compared to high dose DES (5 mg) without any change in oncological effect."
The point is that DES, being a synthetic estrogen, has unique activities. Estradiol, at very high levels, will reliably induce castrate levels of testosterone [T]. DES usually does that. However:
- I know of two men with high T values who saw no reduction while on DES, but PSA values fell to near zero, &
- DES reduces PSA in some men after CRPC.
Thrombotic events can occur with low-dose DES, as they can with Lupron. But nattokinase (& the D-dimer test) can eliminate the risk.
There is increased risk of ardiovascular events in castrate men.
"Overall, 1700 references were scanned and 14 prospective randomized trials with a total of 3986 patients were included in the final analysis. Although trials showed DES as similarly effective to another forms of ADT, evidences about cardiovascular toxicity in out of date high doses have discouraged its use. In doses of 1 mg, DES has been used as secondary line PCa treatment with safety.
CONCLUSIONS:
DES might be similarly effective to other forms of ADT on advanced PCa patients, with potential important roles. Intriguingly, the burden of severe cardiovascular toxicity is mainly related to old-fashioned doses of 5.0 and 3.0 mg. Modern PCa hormonal knowledge warrants stout high-quality prospective randomized trials in the low-dose 1 mg DES scenario."
I was having a conversation today with a friend. I told her how DES is being used successfully for men with PCa. I know this to be true since we’ve used it successfully. And now it’s illegal.
Her sister was one of the fallouts who had a mother who used it during pregnancy over 50 years ago. They realized that danger what over 35 years later, yet never made it illegal
Her response was they didn’t ban it when it caused harm and they knew it yet since men with PCa are having some relief, extended life and hope THEY ban it.
When I was away in military training in 1969 my pregnant young wife was exposed to DES by military doctors. The FDA did not issue the warnings until 1971. Our daughter was a "DES daughter". She never had children, and suffered Many painful gyno problems over the years, ending in a hysterectomy in her early 40s. Tragic.
Yes, I was at the age of having children, this was 1966, '67. My friend pregnant at the same time was given DES.
I’m sincerely sorry about your daughter.
I believe the sharing we do here to be so helpful. I only urge the diversity of experiences to continue to educate us and allow for the many ways we treat this situation we find ourselves in.
Just as there are so many of us it also appears we need the diversity of protocols that we resonate with.
The docs know very well how each of us reacts differently. We are lucky that we don’t have to answer to a put upon standard of care they have to abide by. They are under so much pressure these days.
We do have to protect against kooks and quacks though I do feel we have quite a good mix of information.
I got the same effect of full dose of DES by running 9 Viville dot estrodiol patches 0.1 and changing patches 3 per week as they expire weekly. Started with 3, work up to 9. This was one of Dr Charles E Myers tricks. You must run a blood thinner to prevent risk of stroke. Same for DES. Must run a blood thinner because of stroke risk. Aspirin 325 or another thinner. Great for your bones, osteoporosis, memory, joints, and brings up your sex drive also. Read about it. I would not run estrogen too many months because Vivelle patches are pricey and I dont think this high dose estrogen therapy has ever been done for very long. It is considered an alternative hormone therapy to reduce testosterone and knock down PSA. Dr Myers combined this with other drugs for a more effective result. His time frame was about 6 months max to run this.
Back then, I had a difficult time to get Kaiser to fill my prescription. When the inexperienced pharmacist saw the prescription, alarms went off and the chief pharmacist at that branch said it was a mistake. They tried to deny issuing that prescription because of gender and dosage. Had to present my justification memo from Meyers and do a phone call from my Kaiser doctor saying it was not a mistake. Also had to invoke the name of Dr Steven Gray, the chief of Pharmacy over all of KP Southern California. Mentioning that I worked for Dr Gray put fear in their eyes. Those were the good old days working for Kaiser.
Estrodiol patches are easier to get today because they are now approved as standard of care for Prostate Cancer by the FDA.
We used patches back around 2014.. we'd get 40 patches in a box. We did need that many because we were using 5 twice a week. So that's 10... now a box of EIGHT costs over 80 dollars since medicare is saying they aren't paying and we also have supplemental insurance..
any thoughts on price.. also these are the generic..
GOODRX can bypass medicare and get a box of 8 generic patches for about $35, but that is still pricey. Generics only last 4 days before you have to change them.
The four days is about right since we were guided to take 5 and change them twice a week. So that's about the same. Plus this is with non-generic.
We have switched things up since we began this journey and it's worked for us. I have no grounded information as to why except we have done A LOT of protocols mainly in the alternative area, though still using drugs like vivelle dots.
What the heck happened to the boxes of 40 instead of EIGHT. I know we used to go into the donut hole by about October, so they did cost .. but were covered except for a co-pay by medicare. Medicare apparently dropped paying?? I have to look further into this because I just found out last night. I am wondering if anyone knows if it has anything to do with a male being administered to when in general it's a menopausal drug.
Did the Pharmacist tell you why he could no longer get the powder?.....this would be horrible news for me as I’ve been taking .5mg for over 4 years and maintaining a psa of .7 with higher testosterone. Wouldn’t know what to do if that were true
I should have asked more questions. I haven't been able to find any details of an outright ban online.
He said that there was a U.S. ban on DES powder at the supplier level, but even if he had a leftover supply, he wouldn't be able to fill prescriptions for humans.
It seems like an unnecessary ban, but DES, at high dosage, can be used as a "morning after pill", so perhaps this was the motivation?
Over the part 15 years I have known men who have bought Honvan pills from abroad. Honvan (Fosfestrol) "acts as a prodrug of diethylstilbestrol". Might not be illegal to import it:
Thanks Patrick. I called the pharmacy this morning and was told to call back Wednesday when their compounding pharmacist is in.....will post when I get any info.....
Thank you for posting. Can you keep us updated as to getting these patches. As I said in my earlier post I was shocked there were only 8 and had to pay $80..
When at some point we may need to use a lot more.. right now we are going to use 1 a week to go with ADT.
Financially this is getting very scary since a patch at 10.00 a patch and using even 5 a week is a lot...
I have found a pharmacy that has a "small amount" of the powder. It means driving for an hour, but that's OK. Four nearer compounders have no powder. None mentioned a ban.
Try Wedgewood Pharmacy at 405 Heron Dr # 200, Swedesboro, NJ 08085. Phone is 800-331-8272. They made DES for me a couple of years ago and are a compounding pharmacy and work with dogs too so it's worth a shot. It was cheap.
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