Just received the results from my August 10 blood draw and I am pleasantly surprised. I started using the E2 gel 16 months ago after my PSA continued to rise despite having sacral lymph node surgery in an attempt to counter the post RP BCR. I have chosen this regimen in lieu of Lupron and other ADT drugs because of the devastating side effects that many of you are experiencing. Zero hot flashes/flushes, zero bone density loss, zero fatigue, zero muscle mass loss, zero mood swings...only some gynecomastia! The only other med that I am currently taking is a 0.5 mg dutasteride capsule every third day due to its long half life. I am going to reduce my dosage of the gel since my PSA and T levels have dropped to such low levels. Actually I was not too optimistic about the results since I recently spent two months in Chicago eating all the 'junk' that we shouldn't be consuming like Costco pizza and hotdogs, Italian beef sandwiches, gobs of pistachio ice cream, Czech pastry, etc. My thanks to Richard J. Wassersug, PhD for being my mentor. I highly recommend his books on "Androgen Deprivation Therapy".
Surprising tE2 (transdermal estradiol... - Advanced Prostate...
Surprising tE2 (transdermal estradiol) results...fifth update
Ron
My E2 is a lot lower than yours but T is the same and Psa is .1. I use (3) .1 mg estradiol patches by Sandoz changed twice weekly . Maybe you can get away with less gel than you’re using. What’s your Psa?
Bob
Good news! It is also so much cheaper than GnRH agonists and antagonists. I suspect the trials in the UK will be game changing. Do you take aspirin or tamoxifen with it? How are your liver enzymes?
Alan,
I haven't had a recent liver panel done...I will do that soon. I assume you are referring to albumin, bilirubin, AST and ALT levels?
Those and PTT. Might as well look at alkaline phosphatase and LDH too.
Sorry that I didn't answer all of your questions in my first reply. Yes I do take a nightly 80 mg aspirin. I have not started taking tamoxifen even though I know you have recommended it several times to help with the gynecomastia. Do you think that since it reduces this side effect of E2 that it could possibly be counterproductive in other ways?
I normally monitor my ALP level (see my lab results); however, I believe that there is another ALP test for the liver...correct?
tamoxifen is an estrogen antagonist in breast tissue, but an estrogen agonist in other places. I haven't seen any studies about whether it hurts or helps with E2 therapy. I'd guess it would help, but it's just a guess. Have you discussed with Richard Wassersug?
Bone ALP is a specific kind of ALP. Sorry - I missed that - it looks good!
Thank you Alan. I guess it wouldn't hurt to try it; however, my breasts may already be to the point where reducing the excess tissue growth may not be possible...do you think reversing is possible?
Richard hasn't used tamoxifen himself and still questions if it would interfere with the efficacy of the tE2.
They say 20 mg/day reverses existing gynecomastia, but if connective tissue has formed, it will take cortisone injections to break it down. Tamoxifen acts as an estrogen agonist in bone cells, improving BMD and, in high doses, it slows bone metastatic growth in breast cancer. In early studies on prostate cancer, it was mildly beneficial:
clincancerres.aacrjournals....
ar.iiarjournals.org/content...
Thank you for your absolute devotion and assistance to everyone on this forum!
I also take cabergoline to keep prolactin down as well as avodart metformin, rosuvastatin and celecoxib.
May I ask what dose of cabergoline you take and if you have noticed side effects?
Shanti1
Back in 2015 when I started casodex ( which is known for causing gynecomastia ) to Lupron I started taking (3) .5 mg cabergoline tablets weekly. When I stopped casodex and trelstar (which I had switched to from Lupron) in 2018, I dropped down to two per week then none. After adding more estradiol patches in January 2019 in accordance with the PATCH trial ( I had been using just one patch changed twice weekly since 2015 to eliminate hot flashes), and noticing gynecomastia, I started back on two cabergoline tablets weekly just awhile back. I never noticed any side effects except gynecomastia subsided.
Thank you for the reply. You have probably seen this paper as it has been posted a couple times on the forum:
A Novel Patient Case Report to Show the Successful Termination of Untreatable Androgen-independent Prostate Cancer: Treatment with Cabergoline ncbi.nlm.nih.gov/pmc/articl...
and this related one:
A Proposed Efficacious Treatment with Clioquinol (Zinc Ionophore) and Cabergoline (Prolactin Dopamine Agonist) for the Treatment of Terminal Androgen-independent Prostate Cancer. Why and How?
ncbi.nlm.nih.gov/pmc/articl...
Anyhow, we are not considering cabergoline at this time, but I like to gather info and have backup plans, and backup plans for my backup plans.
No I had not seen these links and thank you for bringing to my attention. My RO who is very knowledgeable about and only treat PCa is the one who put me on cabergoline and now that you have reminded me it was to eliminate another source of cancer progression other than testosterone. It seems like few oncologists are aware of this.
We put prolactin on my husband's next blood test. Did you ever check your levels?
TA,
I just listened to dr Myers talking about the breast enlargements issue. He mentioned he gives his patients a drug called (cabaergoline) 1/2 mg, 3 pills a week. He didn’t mention the tamoxifen.
Congratulations Ron! Amazing. May I ask what your PSA was before you started the topical estradiol?
My husband is about one month in and has had a 16% drop in PSA so far. 🤞🤞🤞
Thank you Emily! My post lymph node surgery PSA was 0.71 16 months ago when I started using the gel. I have posted more details in my profile.
Is your husbands still on ADT and other stuff ? Is he using topical estradiol along with any other meds and supplements ?
Reconsider Lupron & casodex. You only hear feedback from those who had problems with it.
People who didn't have problems don't complain about it.
I for one didn't have much problem with it. Just make sure you take it with Vivelle estrogen patches.
If estradiol is working there’s no need to take Lupron or casodex. Plus why put up with the side effects and high cost of Lupron? You’re just feeding the pharmaceutical industry.
Why wait around to find out after the fact if it is working or not?
Especially if it is not part of any generally accepted standard of care?
Not true. Estradiol pills ( DES )were used long ago but stopped due to CV issues. The transdermal patches or gel have been found to have no greater risk than SOC like Lupron for CV issues with less impact on bones and other body functions. The only negative has been breast enlargement which can be controlled with tamoxifen or cabergoline. Google the PATCH trial in UK and read the attached: ncbi.nlm.nih.gov/pmc/articl...
Well I guess in the end, if the estrogen reduces testosterone to acceptable levels, it really doesn't make any difference as to how you get there.
What is an acceptable range of testosterone for purposes of androgen deprivation therapy?
I wanted to say the same thing; however, I'm too old to argue with anyone! Trying to keep the stress level at a minimum...said "To hell with everything in the States" and moved to Thailand!
Ron
That’s quite a move! I’m 75 and not too old to argue with people who are uninformed or pigheaded.
Bob
Good news. Congratulations. I'm glad to know this is working for you.
Thanks for the update! Very interesting!
Have a good weekend. A lot to be thankful for.
JDM
I'm always amazed, and impressed, when someone adopts a treatment strategy that runs counter to standard protocols and is successful with it. It shows that there is a great deal that we still don't know about treatment strategies and a lot of need for additional research.
Congratulations on the results of your treatment and thanks for the report.
Alan
Thank you Alan for the encouragement in my 'somewhat' unconventional regimen! I chose this route based on the successful, (minimal side effect) experiences that my father and his two brothers had taking DES for MANY years. They all had RP's in their early 60s which failed and consequently were put on DES until it was discontinued in the mid 80s and replaced with Lupron. My dad and one of my uncles eventually opted for orchiectomies because of the side effects from Lupron. They all lived into their late 80s!
Congrats- but I have one q for you. If your T levels have dropped significantly, why haven't you suffered the typical SEs from T loss, such as loss of muscle mass. My history is a bit complicated, but, in essence, I have been on Lupron for 7 yrs (on and off) and while it took place over a period of years, my muscles have all but disappeared. I would think the same would be true for anyone with low T levels, regardless of how those low T levels were obtained. Am I missing something here?
jfoesq
For us with stage 4 cancer its all about staying alive with acceptable quality of life not about becoming like Arnold. I've had muscle atrophy ever since having low T and I have had three bone mets. So indeed I worry about losing strength and breaking bones. So I work out daily with weights and other resistance methods (cables, bands, machines, etc.) to provide variety.
The patches have been proven to reduce bone thinning (osteoporosis) compared with traditional ADT. That's the primary reason I switched away from traditional ADT. Resistance work is supposed to increase bone and muscle strength. My bone density is normal but my muscles are not. However my strength has not suffered too much. If I were not working out I'd be a mess.
At the same time, I'm on a weight loss regimen to reduce my gut. And it's working.
You have raised a very valid point. Every night (usually five nights/week for about 35 minutes) when I go to our gym here at the condo I ask myself the same question. Other than the recent use of transdermal E2 gel, I have never been on any type of ADT. These are my T levels before and after I started the tE2 gel regimen:
7/13/2017 - 455 (prior)
6/19/2018 - 349 (2 months after starting)
8/3/2018 - 106
10/30/2018 - 72
8/10/2019 - 10
I am not a very big guy (currently 5' 9'' @ 157 lbs...was 5' 11" @172 lbs when I was on the gymnastic team in college); however, I was always fairly strong for my size. I never smoked, drank, and never stopped exercising. At about 65 I started noticing a decrease in strength and adjusted my workouts to more reps with lighter weight. The exercise that showed the biggest decline for me was the bench press. At age 60 I was still benching 8 reps with 170 lbs. Now I use between 90 and 130 lbs for most of my upper body exercises...dumbbell curls with 35 lbs. This has been pretty much been the weight that I have been using for several years and I've noticed no change since I started using the tE2 gel. I try not to think about the low T and how its absence 'should' be destroying me! There are times; however, especially while doing bench presses that I start thinking that I must be getting weaker and immediately lose the strength to finish the reps. The next day (hitting the gym with a positive attitude) I find myself able to complete my workout without a setback.
I wish I could explain why I am experiencing none of the "typical SEs from T loss, such as loss of muscle mass", but so far the gel has been a 'wonder antidote' for me. I am going to ask my mentor Richard Wassersug this question and get back to you with his opinion.
Best regards,
Ron
A great response ..
This is what Richard Wassersug had to say regarding muscle mass loss from ADT:
"I've seen guys on LHRH agonists gain no weight and maintain a lot of muscle strength, but they are intensely committed to exercising. Not exercising is most likely a major factor; however, as we age we are also dealing with sarcopenia."
Regarding the other "typical SEs" experienced from ADT, I guess that 'so far' (I've only had this low T for a short time) I am one of the lucky guys...many men on this forum have stated that they are still feeling good despite being on ADT. As I have previously mentioned, my father and his two brothers while on DES never complained about SEs. I spent a lot of time with one of my uncles and I'm sure that even when he was 80 he could still have kicked my butt!
Thanks for the info, Ronron
- but no surprise there. Of course, those who work out and exercise will lose less muscle than those who don't. And- no doubt there are people who don't gain weight from ADT, as we are all individuals and react differently. However-the Q your doctor didn't answer was, IFFF ALL OTHER FACTORS WERE THE SAME, (i.e. exercise, diet.....) whether lower T levels will result in less muscle. Of course, I believe the scientific answer to the Q is YES- regardless of how the lower T is brought about (i.e. ADT, estrogen patches or other means). There is no doubt in my mind, that if I exercised more than I have, my muscles would be stronger. But-they would also be stronger than they are at present, if I had higher levels of T.
I could press around 25 trousers in an hour.... I picked up that talent since my Mom and Dad were in the Iron and Steel business.... yep you guessed it... My Mom would iron and my Dad would steel.....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/17/2019 7:45 PM DST
Fantastic news Ron!
Thank you Ronron ..
That's great and I hope it continues.
For me, it took several years of ADT before I lost what appears to be, all muscle.
I hope it takes even longer for you.
I just posted regarding use of estradiol for hubby & saw this. You're having great success! How do you get the prescription? Have you tried the estro-patch as well? Thanks.
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