I read with interest the recent thread on tE2 instead of Lupron. Some of you were very enthusiastic about this alternative. Since it looks like I'll be on Lupron for the rest of my life, I wanted to explore this option further. I sent the links from the thread to my MO (the 5/2017 article about the PATCH trial, the Lanset article from Feb, etc.) . Her response: "The one thing I don't see is the efficacy comparison. I think it is known that LHRH tends to be superior to other therapies. That is the big question I pose. I am not sure if trading off one set of symptoms for another is what you want as well, but we can always discuss." So I'm asking this group: (1) source for efficacy data? (2) your thoughts on her comment re: symptoms? Thanks.
tE2 Intead of Lupron: I read with... - Advanced Prostate...
tE2 Intead of Lupron
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j-o-h-n Wednesday 03/31/2021 6:10 PM DST
Thanks for the "reminder" that I hadn't completed my profile. Nice side effect: it reminded me about the progression of my disease; I hadn't looked at the numbers for awhile. Done!
Thank you for your reply. Just to let you know besides my Pca I am also fighting lung cancer cause by a melanoma which metastasized. I am fighting it with KEYTRUDA and it is working. Heard many people fighting their lung cancer with keytruda.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/01/2021 6:21 PM DST
😂😂😂😂😂😂
It's way too early for efficacy data. This was just an early look at SEs.
Funny but funnier is substituting the business man with the ex governator of California....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/31/2021 9:40 PM DST
Or New York's govenor.
Bingo....Hit the screw right on the head....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 04/05/2021 12:06 PM DST
Hahahaha true..............
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/31/2021 9:57 PM DST
I understand that the efficacy data is not all in until it is all in, but there is no disputing that tE2 has efficacy as a means achieving castrate levels of T. It functions as a form of castration. It is ADT, because it serves to deprive one of androgens (and actually gets to it even FASTER than Lupron does).
But posing the question as "Why WOULDN'T this form of ADT be effective ENOUGH?" is not going to satisfy those who need to wait for the trial data on progression/survival. Because the PATCH trial began many years ago, one presumes there is some preliminary assumption of efficacy based on the ongoing observation of participants who are maintaining castrate levels of T on this therapy. That will satisfy some, not all.
Fortunately, the "some" seems to include Dr. Michael Glode, who helped run the Lupron trials in the 1980s and just wrote on his blog that "estrogen works... and may have some significant advantages over surgical castration or GnRH therapy."
[I wonder, how many years had to pass before chemical castration was "proven" as efficacious as surgical castration? Did decades have to pass before doctors were willing to use Lupron, etc. as an alternative to orchiectomy?]
I guess you could also tell your doc that even if tE2 is assumed to be the inferior therapy as regards efficacy, you PREFER the (potentially) inferior therapy since it is 1) proven safe, and 2) proven to have less severe side effects as regards bone loss, lipid changes, etc.. and 3) may impart better QoL than standard ADT.
Regarding the comment on whether "trading off one set of symptoms for another is what you want" you would need her to be specific on what tE2 symptoms she might be referring to, other than gynecomastia (which can be addressed with tamoxifen).
Another piece of ammo:physiciansweekly.com/patch-...
Charlene Mantia, MD, and Atish D. Choudhury, MD, PhD, both of the Dana-Farber Cancer Institute, Boston, MA, commented on the strengths and limitations of the PATCH trial.
“The PATCH trial suggests that tE2 is an appropriate treatment strategy in men with prostate cancer, with a decreased risk of several androgen-deprivation therapy-related side-effects and similar cardiovascular risk as LHRHa. At present, no differences in efficacy have been shown between androgen-deprivation treatments; therefore, therapeutic decisions are based on availability, costs, side-effect profiles, pharmacodynamics of testosterone suppression and recovery, convenience, and likelihood of adherence. The choice of agent should be individualized based on the patient’s disease state, comorbidities, and preferences,” concluded Mantia and Choudhury.
Thanks noahware. This is just the kind of info I was seeking.
This is probably a dumb question, but here goes: With a similar level of testosterone suppression, how can tE2 be so superior in side effects? I thought it is T suppression per se that accounts for the bulk of the negative health effects of GnRH agonists/antagonists, apart from injection site pain.
Actually, it is the corresponding E2 suppression, rather than no-T directly, that arguably causes the worst harm when going castrate.
Bone density, lipid changes and some of the brain fog (as well as hot flashes) relate more to the loss of E2. Loss of muscle, strength and energy (and ED) are more directly T-related.
nature.com/articles/pcan200...
Thanks. I will start reading up on the threads about E2. Five months into Firmagon, side effects are coming on strong.
Hi Purple-Bike, My MO wants me to start on Firmagon in a few weeks now so what nice side effects can I expect? If you do not mind telling me. We are all different I know but we all have the same disease.
The first four months only total ED and hot flushes. . The fifth month its getting so bad, just about all at once. Fasting blood glucose from excellent 4.4 to over 5.5 pre-diabetes. CRP from excellent 0.16 to first 2.9 now to heights I cringe at writing. Had I taken Dexa scan I am sure that would have shown deterioration. Reduced muscle strength, with sharply fewer reps with the same weight for the more challenging exercises. Two days ago I had to go the emergency unit of the hospital because breathing in was intolerably painful. It was discovered I have intermittent atrial flutter. Pulse suddenly doubles on occasion. I get a beta blocker for this. As a health freak, I have had no health issue whatsoever until diagnosed with prostate cancer last September. It just must be the Firmagon that is the root cause of the flutter and the episode of the painful breathing which is gone now, coming at the same time as the deterioration of the other parameters.
ED and reduced muscle strength will not be helped by switching to t2E, since it's the testosterone depletion driving this. Hot flushes should be stopped or reduced, since they are estrogen related.
What about the other issues - glucose, CRP, atrial flutter, breathing pain? Anyone have any idea, if any of them could be estrogen related thus avoided or reduced by switching to t2E?
@
PS one more side effect. Occasionally severe muscle pain emerged recently. Started just beneath my left shoulder on the back, moved to my upper left arm where it has stayed since, on and off. It's about concurrent with the inbreathing pain, which is between my breasts.Re my breathing/atrial flutter. Not just a total health freak in diet, exercise, meditation and the whole works for 20 years, I have regularly tested a wide variety of health parameters and they have always been excellent without fail. I refuse to believe I could have a CVD issue that is not related to the firmagon or the cancer (I have three probable bone mets, I imagine that possibly one could be squeezing a nerve)
No need to reply! My ignorance is a little less afterfully reading the article. It's the estrogen depletion effects of Lupron/Firmagon that are avoided with tE2. Promising!
Yes, I'm hoping to try it myself (my doc is still struggling with the logistics of the protocol).
I will add, in case you are not already aware, that benefits of having sufficient E2 are realized not only by men who use high-dose tE2 as a form of ADT. Those like you, being on standard ADT, can get benefit by adding LOW-dose tE2 to the existing meds. Many docs seem unaware or unwilling, though!
Noahware - what could be the benefit of adding low-dose tE2 to ADT, as compared to switching to high-dose tE2? Isn´t the latter superior in terms of reducing side-effects from ADT?
The combination is particularly good.
They should tell us human experiments about these side effects before having the jab!Thanks Purple-Bike for the information so will now see if oestrogel or te2 is available anywhere.
Aries29 I hate adding to the side effects but since you asked here are more that I missed and that have emerged recently: White blood cell count leukocytes/LPK 40 % below the low range of the reference value, red blood cell count erytrocyter/EPK 15 % below low range of the ref value, hemoglobin HB likewise 15 % below low range of ref value meaning I have anemia. Fasting blood glucose just zoomed to 6.9 meaning I am into the range of getting diabetes.
But this is just from one person so take it for what it´s worth! Maybe there are many who have no or few side effects from ADT....
Everybody has some side effects from ADT from what I read here.My MO said no to the patch & ordering oestrogel from the pharmacy in Israel requires a prescription so I am at a loss really to understand why they do not want to help? Maybe they are paid more to peddle Firmagon & the other drugs??
My heart goes out to you & others fighting this battle.
Keep on going & be strong!
Just speculation - maybe your MO cannot accept a therapy that is not yet 100 % proved; afraid of being sued..... Did you show him/her the articles supplied by Noahware? Note that only some of the side effects are avoided by t2E; some unfortunately are testosterone linked. But those that t2E avoids, is enough to make me want to switch and if chief doc of my clinic says no I think I will change clinic.
I sent an email to the chemist in Israel & they do not ship it here so that ends that avenue but will go to GP & see what he comes up with the patches.I have no confidence in my MO here but it is too far to travel at the moment to find one that thinks outside of the box & his pocket.
In the meantime I ordered a tube of cream that women rub on themselves so I could end up looking like a big c...?
It's true that we don't have decades of data to compare efficacy, but it's clear that tE2 achieves equal levels of castration, and from what we've seen so far, there is nothing that suggests it's an inferior treatment. Even in the old days before parenteral E2 when men were taking DES (synthical estrogen) orally, the issue was CVS events, not the efficacy of the treatment itself.
All acounts says the SEs are FAR less horrible. It's simply incorrect to say you're "trading one set of SEs for another."
I view this as a Godsend. It's definitely where I'm going if my PSA continues to rise.
And, as Noah said, there will be people (like me) who would go with tE2 even IF there is evidence that it's somewhat inferior. It's perfectly clear that the medical community does not put much weight on QoL in making decisions, perhaps because they're not the ones in misery.
A thirty dollar tube of Oestrogel vs a 3K shot of Lupron. OK doc, go where the money is.
LHRH axon oats and antagonists work by removing hormones that cause tested to make and release testosterone. So the effects are easily monitored by following testosterone levels. Should ideally be under 20. Topical estradiol works in the EXACT same way by feedback inhibition LHRH production with the exact same effects on testosterone. If you achieve T levels <20 you are getting the same benefits with improved SE profile and bone protection.
I spent 2018 in a clinical trial (never published results). I had been on Lupron & Casodex since 2011. My hot flashes went away. So did my body hair from my neck to the top of my legs, including my underarms. Apply the gel in the moinrng to my shoulders. I felt great. But of more importance my T went below 5 and my psa was <1.0. After the end of the trial with no reports i went back on Lupron and all the bad stuff came back, except the hair on my body. I also do not have to shave very often. Did not affect the hair on my head. I got distracted after the trial, was going to try Estrodoil but never did. I am now about to start on Xtandi or Zytiga or one of the others soon.
am currently on the patch, no side effects, it works
Just the patch with no Lupron?
just the patch, four .1 mg/dy every three days first month.
worked so well cut back to three patches after first month.
never took lupron so dont know if would react the same
Your question was for efficacy data. If you want to get a new drug for ADT approved, e.g. Relugolix based on the Hero trial, you do not have to provide overall survival data, just show that the drug reduces testosterone levels as effective or a bit better than Lupron.
The latest article about the patches arm of the STAMPEDE trial is this one:
thelancet.com/journals/lanc...
It says: "Between Aug 14, 2007, and July 30, 2019, 1694 men were randomly allocated either LHRHa (n=790) or tE2 patches (n=904). Overall, median follow-up was 3·9 (IQR 2·4–7·0) years.
Respective castration rates at 1 month and 3 months were 65% and 93% among patients assigned LHRHa and 83% and 93% among those allocated tE2." So the patches suppress testosterone just as well as Lupron and similars.
Your MO has not applied patches to any patient yet and tries to avoid this by requesting this data.
Good point. Thanks.
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