Got my onc to go along with the PATCH protocol (of 4 x 0.1 estradiol patches, changed 2x weekly), and as it turns out things are not so simple. Yes, T dropped, but not yet to castrate levels. PSA did drop from 160 to 75 (while ALP doubled), but after a month T has gone from 500 down to only 187.
Why? I suspect it is the generic brand (Dotti) that I am using. If you look at online reviews by women using these, the brand has a 0% approval when compared to name brands (Climara, Vivelle-Dot, etc.). Not that E2 levels were measured, but women KNEW they were not getting the symptom relief they were formerly getting. The name brands of course fall into the "excluded" category of most insurers' formularies. So it is not like I, or all these women, would not PREFER the name brands. The generic is given by default, without choice.
It never occurred to me that a generic transdermal system might be inferior, but of course it might be! It is not a matter of simply reproducing a chemical formula as with other generic meds. I guess the good news is, I didn't get stuck [no pun intended] with the very worst of the generics -- Mylan -- which apparently fails both in delivering enough E2 and in functioning reasonably as a comfortable, high-quality adhesive patch. (I give the Dotti an A+ for physical functionality: easy to apply, stays on through multiple showers, no skin irritation, etc.)
Of course there are other possible explanations, as there are variations not just between brands of patches but between men using the same patch and dosing, and variations in which patches are more or less effective on different parts of the body, especially depending on BMI. (After this winter I do need to lose a couple, thirty pounds.) For those interested that discussion as it pertained to men in PATCH, follow the link and scroll down to Appendix O, p 96-100: ctu.mrc.ac.uk/media/1282/c-...
One thought is to try a dose increase of this brand, to 6 patches (as was done with the alternate brand, linked above, in the PATCH study). The other thought is to have my onc get prior authorization for a name brand like Climara, and pay the out-of-pocket... which could be $150/mo on my plan, I believe. Will be discussing w/ onc in a few days.
Or I could move to Thailand and join RonRon, LOL.
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Not sure my onc would be confident going that way, nor would I.
I am less worried about the cost and more worried about the quality, both in terms of how effective a patch is at sufficiently raising E2 levels and how functional the patch is terms of staying on when wet, skin irritation, etc.
Before I trusted a compounding pharmacy on both of those counts I'd want to hear a few customer success stories. (Real-world efficacy for these patches is probably best reported by the trans community and women on hormonal therapy.)
Cost (for me) for generic patches made by Mylan, Sandoz, Noven and Amneal looks to be about $0 per year, while Climara and Vivelle more like $2k per year. Nearly every review of the Mylan patches said they fall off in a few days, even sooner if they get wet, so that's the kind of logistical headache that I wouldn't want to put up with for months, let alone years. (I believe RW suffered some skin irritation in addition to logistical headaches.)
All the guys here going "off the reservation" for tE2 seem to be using the gel, like RW, and I can see why. But most US oncs (of the very few who will even consider tE2) are going to want to fallow PATCH protocol, I suspect, even if they cannot get the same patch brands used in the UK.
Hi. I am currently on ADT and my numbers are good. Is there any advantage to using a low dose estrogen patch to improve bone strength and reduce the chance of blood clots? Thanks.
Estrogen patches do not reduce the chance of blood clots. They may prevent bone and muscle loss, and may reduce hot flashes. Discuss with your oncologist.
That's the plan for now, but will be discussing both chemo and treatment of the primary, as both are still on the table for sooner rather than later (especially since "sooner" has already passed).
Yes, that was also in the link I provided. It appears that the alternate brand had previously shown efficacy, but at a dose of 6 patches rather than 4. I think that's what I'll suggest to my onc.
How long has it been? I did estrogen ADT a couple of years ago and it took 5 weeks for my T to drop to undetectable. Not much data at the time so I wasn't sure what to do other than hold my breath and jump - Lupron's side effects sounded horrible since my family has depression in its history and I had osteopenia (estrogen and now testosterone have changed that - hence the "had").
The day prior to my blood test that was the first at castrate levels, I added Zytiga. Poor timing on my part. I should have waited a day. That would have removed a variable.
I used Climara. I don't know if off-brands are as effective.
Also, I used 0.4 mg/day to get to castrate. You could try 0.6 mg/day. Also, my liver enzymes did not change much. It looks like ALP had a small increase (maybe 10%).
Please bounce any questions off me. PM me if you want. I did it very successfully for 5 months. It turned out to be a good lead-in to high testosterone.
Thanks! It's only been four weeks, but looking at PATCH results I was hoping I'd be lower than 187 by now. 83% were castrate by one month, 93% by 3 months. Hopefully I'm in the 17% group and not the 7% group!
One reason I think it may be the generic is not as good is looking at women who used Climara and got switched over to generics: nearly all online accounts and reviews report a perception of decreased efficacy.
In the PATCH trail a small subset of men could not get the preferred brand and switched, and it was noted that their T levels rose (and E2 levels dropped) using the new brand at the exact same dose. The researchers thought perhaps different patch systems were absorbed differently, in addition to variations between men and placement. Where did you place the patches when you used them?
28 days after starting I was at T=195. I didn't have as much data to go by so I decided to measure my T one more time and then give in to the horrible Lupron stuff if I wasn't castrate levels. So, five days later (33 days from starting) I did another measurement and my T was at 21. Six days later my T was undetectable. I messed around with the dosing and when I dropped to 0.1-0.2 a day my T went up to the low 20s. Each time it jumped up a bit I'd increase my patches back to 0.3-0.5 and it would always go undetectable.
I would place the patches on my hips and lower abdomen. And then rotate them (so maybe start on my right hip and left hip and right abdomen, next patch I'd put on early and I'd stick in on my left abdomen, then take off the left hip one, etc. No real rhyme or reason).
Okay! Maybe I'm being a touch impatient...was very disappointed a few days ago to find that I had no problem with erectile function. (Never though I would type THAT sentence.)
I have been doing hip, butt, arms and shoulder as per PATCH. Have one on the ball sack now, as I just read scrotal absorption has been measured as very high.
I’ve been using the Mylan patch for quite a while now and don’t seem to have any issues. I’m using it to minimize SE’s and for bone health and haven’t noticed a difference to the Vivelle Dot patches I used to get prior to Medicare. No problem with them falling off, in fact I usually have to scrub the adhesive off my skin that is left behind with rubbing alcohol. I’ve learned it’s good to clean the area you’re going to place a new patch with rubbing alcohol to remove any soap film, etc before putting a new patch on. I usually put the patch on my hip, seems to stay on best there.
I did the PATCH protocol for adjuvant ADT with and post PLN RT. Also ended up with Dotti after finding Mylan terrible. After 3 weeks with 4 patches T was still just above 50. So I punted: took a half dose shot of Firmagon (120 mg). T was under 20 within a day. Reduced the patches to 2 from 4 in the combo. No adverse SEs at all, felt just fine. When I have to go back on it would do the same (combined estradiol patch ADT) or go to a gel form. Also used tamoxifen 10mg.
Another thought is to perhaps change the Dotti patches out every two days instead of four. I understand the delivery is not linear. The bulk of the E2 is delivered within the first 48 hours.
Thanks. I think that is a good idea, will run it by my onc. Interestingly, the PATCH trial specified twice-weekly changing of a brand intended for a full week. Climara fits that bill, but I did hear not-so-good things about the Mylan generic version of that.
You can supplement with estradiol pills along with your 6 patches. Dont recommend clamera--Large patches that leave a rash. vivelle dot patches are small and dont leave a rash.
Dr Charles Myers had me on 9 patches in 2006. along with leukine white cell boosting injection daily 250mcg , and ketoconozole. The drug cocktails gave me a 4 year remission at PSA 0.1. On Health Unlocked, I read one guy was using Xtandi instead of ketoconozole. My drug in 2006 was a long time ago so I am sure it needs to be updated.
Estradiol will thicken your blood so take a baby aspirin or a blood thinner to prevent clots. I did a full aspirin daily.
UROSODIOL will help protect the liver if you are taking a lot of oral meds.
Estrogen will improve memory, joints, cardio, and overall health. Even get a little sexual benefit to replace testosterone something according to Myers, and he was right. Might gain a little weight so exercise while enjoying a remission. I took up ballroom dancing and got good at it.
Thanks! Good to know your experience with patches. I am really happy with Dotti so far as application logistics go, so hoping a little boost in dosing will do the trick.
And yes, I have now heard from multiple sources that libido can be very closely tied to estrogen, even if actual erectile function is more tied to testosterone. What's the point of having function if you have no interest?
Haven't noticed anything on thickening of blood from what I can read from the PATCH trial, but it seems reasonable given that effect from estrogen supplementation for women.Would you say baby aspirin for tE2 is pretty much a no-brainer?
Yes but may not be enough for those with a high clot risk. Best to do tests and discuss with oncology what is the best drug is to reduce clot risk. Some drugs are pricey but may be best ones, like xarelto.
I have been on the Dotti patches for 11 months. 4 to start and it took 6 weeks to take my Testosterone to less than 10. Estradiol was greater than 200. I can't imagine how you can judge the efficacy of the patch when you don't know what your blood estrogen is now or was when you started. I have my exact numbers but I am traveling and don't have them with me. Oh and my PSA presently is 0.05
Thanks, glad to know the Dotti works. What was your T at four weeks? As for E2 levels, Richard Wassersug and others have suggested it is not all that important to measure them relative to knowing where your T is at. At some point, I would think you don't want them TOO high, or any higher than needed to keep T super low.
The patch trials suggest great variation between men as far as the relationship between their E2 levels and T levels, but I would like to know just as a matter of curiosity. I was surprised that my onc did not order them even after I suggested it, so I am going to revist that with him.
1-04-21 PSA 0.04 Testosterone 7 Estradiol 132.40 I Received a 400mg Testosterone injection
2-03-21 PSA 0.12 Testosterone 834. Estradiol 329 (no change in patches at 2 0.1mg patches twice weekly
The testosterone injection resulted in an 3 fold increase in my PSA, and It did not push my testosterones into supraphysiologic levels!
3-03-21 PSA 0.26 Testosterone 153 Estradiol 328
3-31-21 PSA 0.12 Testosterone 37.48 Estradiol 237
4-5-21 I decreased to 1(one) Estradiol 0.1mg Patch and no more testosterone ( I thought i might be reacting to too much Estradiol --developed vertigo)
and my latest test
5-12-21 PSA 0.05 Testosterone 304 (not a typo) Estradiol 121
Not sure I can explain what is going on (probably the Testes woke up and are producing testosterone again and not enough Estradiol to inhibit them) but glad the PSA is back down.
Vertigo disappeared last week finally
I am not making any claims just telling you what has transpired
I have had multiple D-dimer test and all have been in the normal range. I have no other symptoms
I read these posts & become angry because I asked my GP yesterday for them & the usual reply was NO. No excuse, just the fact that they are ignorant & so is the treating Oncologist.What is wrong with this Great country? I could not care less as it has not happened to me attitude!
Fortress Australia! Let me out before I die from this disease that eats us up alive.
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