Actually I was quite pleased with my trimonthly blood test results that I recently received; however, after reading Tall_Allen's treatise (The Perils and Pitfalls of "Treating PSA" in Advanced Prostate Cancer), about how PSAs in men with advanced PCa can often be misleading, I'm confused and not sure if my cancer is currently 'sleeping', or is it on its way to showing its ugly face? Fortunately, even though I have had BCF for about nine years now, I am totally asymptomatic.
Ever since my RP 17 years ago I have been under the impression that PSAs were valid indicators of post-treatment prostate cancer progression or lack thereof? Prior to getting these 4 typical blood tests I had asked 'Doctor TA' if I should get any other valid tests and he recommended a bone specific (BAP). Unfortunately my lab doesn't do this test so I just had my PSA, T, E2, and ALP checked.
Allen's paper is a bit over my head; consequently, I'm now somewhat concerned that perhaps there is something going on that my 4 tests may be missing? I am aware of numerous, expensive scans that can probably tell me more than I really want to know; however, due to having no insurance here (Medicare pays for nothing outside of The US), I have no immediate plans on getting scammed/scanned in the near future!
When my PSA continued to rise post RP (2004), and sacral LN excision (8/2017), two of my urologists deemed me a Lupron candidate which I was vehemently opposed to taking after reading all of the 'nightmare' experiences on this forum. My urologist at Loyola in Maywood, IL suggested that I try to find DES so I began reading every article that I could find on the old oral, synthetic pill that was discontinued in 1985 and replaced with Lupron injections. During the time that I was searching for articles on DES, a 'Thai ladyboy' who happened to be having lunch with Natalie and me was digging through 'her' purse and pulled out a tube of 'Oestrogel' (transdermal E2 gel). 'She' told us that many of the she-males use it to hormonally castrate themselves. I took a picture of it and posted it on this forum. Richard Wassersug replied and has become my mentor ever since.
It's approaching 4 years since I started applying the gel as 'mono therapy' and for the last 3½ years my PSA has been undetectable. The ONLY side effects are small boobs (I refuse to show y'all pics of those), loss of hair under my arms, and a 'full' head of hair. Actually, I am probably closer to being a female than a male! Also, I haven't been to a doctor in 4½ years and this unconventional ADT costs me less than $20/month. Nalakrats and some of our comrades are adamant about keeping their E2 levels in normal male ranges; however, I don't feel any different since I started using it, and have no idea that I even have PCa. Well that's my story and I'm sticking to it!
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Actually, I didn't even know that there was a 'bone specific' ALP test until TA recommended it. Perhaps he will reply to this question and help us understand the difference?
It looks like your PSA is holding nicely with your continued use of tE2 gel. It would be great if you could return to the states long enough so that you could obtain some imaging - possibly the recently FDA approved (12/21) PSMA-PET CT scans and have that scan and the bone scan TA mentioned paid for by Medicare. Then, you might be reassured that your low PSA is okay, and you're not growing some nasty PCa micro-mets elsewhere. Low PSA with high GS is a difficult situation for anyone.
Although I haven't gone looking for an update of the ongoing PATCH Protocol Version 13.0 NCT: 00303784 in the UK, I believe that the trial is continuing. Richard Wassersug is a good source of information about the use of tE2 for ADT as he has been using tE2 for his own ADT for many years. It is unfortunate that the American medical establishment has walked away from tE2 since the DES lawsuits when oral E was used and the results were linked to bad medical outcomes for women and some men. Now, the medical malpractice legal bar has shutdown almost all use of E for ADT in the US. tE2 is almost impossible to obtain, so only DIY ADT with tE2 is one option. Hopefully, when the PATCH trial is concluded, the use of tE2 will begin again for those men with PCa who want to use it.
Thanks for your reply Jeff! I have no desire to ever return to The US, so at my age I believe that I will just let nature take its course and expire here. I had two scans that identified things that should never have been touched. Lost a kidney because of a 3 cm benign cyst, and my LN excision was a total waste of LNs...TA confirmed that!
Dear, T_A! Is there any research on this in your piggy bank of knowledge when estradiol enters the fight against prostate cancer? At least a starting point from which to start diving into this topic..?! Thanks!
We are awaiting the first results of the PATCH/STAMPEDE randomized trial, perhaps later this year. So far, they have told us that the clotting side effects that we were worried about haven't been a problem with the transdermal administration of estrogen.
It seems that old Ron outwitted everyone in his fight against this disease and bypassed all the side effects by smearing it on the outside, and not taking it inside..?!))) This is humor, although there is something definite in this method...
Hi! A very interesting experience that requires my own study! I don't remember who exactly, but someone from this group has already drawn my attention to estradiol.. I didn't pay attention to it then, but now I understand that I was wrong! Starting tomorrow, I will start studying this topic for future lines of defense in this battle with prostate cancer! Thanks for the post, Ron!
Because you originally had a high Gleason and fairly low PSA, I can see why you might worry that mets could be progressing without expressing much PSA. On the other hand, your relatives did quite well with an estrogen-based therapy!
I'm curious about your T level, however... aren't you a bit worried that it has risen that far above castrate levels?
Other markers... C-reactive protein (CRP) is a general marker for inflammation and it has been associated with prostate cancer. I never had mine tested, but LearnAll mentions it often. Would CRP go up if your PC was progressing without a rise in PSA or ALP? Seems like a reasonable question, but not one that I can answer. But low inflammatory markers are a good sign.
Cytokines are also signs of inflammation. Serum cytokine levels have been associated with prognosis as well as with the presence of liver metastases in prostate cancer. An IL-6 test is potentially useful as a marker of immune system activation (from inflammation, infection, autoimmune disorders, cancers, etc.). Again, not a marker I have been tested for, and no idea if it is affordable or readily available.
Since I already know I have bone mets and have already experienced very high ALP, that is the marker I am most concerned with. And of course, mets do favor bone. But I, too, would like to know if there are markers that help indicate visceral mets. Those are the ones that kill us more quickly, after all.
As long as ALP stays low, I'm not sure why one would need BAP tested... if BAP was high then it would be reflected in a higher ALP, too, wouldn't it? So I presume the need for BAP is mainly to see if a high ALP has bone, rather than liver, as its source. (Someone please correct me if that's wrong.)
Haha, I think I'm asking more questions than answering here, lol.
[Prostatic acid phosphatase (PAP) was the first test to be used routinely in the diagnosing and staging of prostate cancer, but not sure how it is used today and I doubt that is something easy to find in a lab that doesn't offer BAP. Labcorp does offer it here in the States. PAP seems like it MIGHT have a use to detect PCa progress. I asked my first MO about this test a few years ago, and she squinted and asked, "Who uses THAT anymore?" I resisted my temptation to answer, "Why, only the most cutting edge clinicians.. and, of course, all the ones over the age of 110."]
[Prostatic acid phosphatase (PAP) was the first test to be used routinely in the diagnosing and staging of prostate cancer, but not sure how it is used today and I doubt that is something easy to find in a lab that doesn't offer BAP. Labcorp does offer it here in the States. PAP seems like it MIGHT have a use to detect PCa progress. I asked my first MO about this test a few years ago, and she squinted and asked, "Who uses THAT anymore?" I resisted my temptation to answer, "Why, only the most cutting edge clinicians.. and, of course, all the ones over the age of 110."]
Some Uro's use PAP to verify no-progression in a low PSA-high ALP scenario... e.g. during my 18mos on ADT, I had declining PSA, but rising ALP to near ULN. I took a PAP test and it was lower than before I started ADT, (0.7 vs 1.8), indicating likely no reoccurrence or possible NEPC involvement.
I too do not (yet) have a fear of using estradiol as ADT or to supplement ADT and reduce side effects. I have studied E2 receptors in PC, etc etc. And cannot confirm that it is detrimental. Until it is. The E2 B receptor can turn rogue and star to stimulate PC via modifications of AR receptors to be stimulated by other steroid hormones. So my approach is to be okay with Estradiol until such time that my PSA may rise, or scans progress, while using it. At that time I will stop it and see if the PSA reverses downward. It is the same situation as with bicalutamide withdrawal.I am very Jealous of your hair however. I may need to come to Thailand and check it out and meet your community there. It has been a long time. Kapoonka.
Several years back chose estradiol gel instead of Lupron to reduce PSA and Recurrent iliac node tumor after RP (Gleason 9, no mets to bones at this point, BRCA2)Was delighted when PSA plummeted 100 points from 200 in three weeks….Continued estradiol gel and 3 weeks later PSA was over 650 and Mets throughout spine and ribs pelvis, too many to count!! Complete kidney failure from tumor rapidly growing and shutting down both ureters. The steroidal hormone did exactly as you just mentioned… First dramatically reducing the tumor and then it was like throwing gasoline on a fire!
MateoBeach can you please elaborate on how using estradiol to supplement ADT reduces side effects? More specifically, which side effects would it help aleviate?Risk of brittle bones, added weight around the stomach, depression, etc? Appreciate it.
Sorry for the delayed reply. Attached below is a summary of the benefits of adding transcutaneous estradiol while on ADT. In my own experience, the E2 patch completely eliminate hot flushes, which otherwise had been terrible. It also zoomed to improve my foggy head cognition and verbal memory at least 50%. Energy was higher and fatigue mostly gone felt less background depression too. It seems the human body and brain just work better with some sex hormones around, with estrogen if not testosterone. Some on this site believe estradiol to be harmful in spite of these demonstrated benefits. As well as stronger bones, improved lipids and lower cardiovascular risk. Estrogen is complex, as is APC. In certain individuals in very advanced stages it perhaps can stimulate growth. But before that it suppresses PC growth. Following PSA and scans is the safety factor for when to stop and change course, as it is for all treatments.
Thanks Mate. I broached this with Kwon today and he just said "no we don't do that here". I will pursue it elsewhere. If I'm going to be on Lupron I need some relief.
Interesting that he said “we don’t do that here” and not “I don’t do that.” Sounds like it is an institutional policy. Did not know he was constrained in that way.
Indeed. It could have been a slip of the tongue and he meant himself but the term he used was "we". I'll be meeting with my Chemo Oncologist tomorrow and will ask his opinion as well. I'm planning on investigating more extensively, with or without current doctors help.
I met with my chemo oncologist and he said he wouldn't prescribe it himself but understands that it alleviates some SE's. He said he would help manage it if I go that route and find another Doc to prescribe it. He then said he prefers his patients take a break for the Lupron instead - for a year or until the PSA climbs. He has several that do. I am coming up on my two years of Lupron this summer and indicated to him that I may take a vacation then or add e-patch.
The doctors are totally aware that there are no more CV risks with transdermal estrogens when compared to LHRHa therapy. No money in self administered, inexpensive patches/gels. We can also thank the lawyers who are 'champing at the bit' to launch lawsuits against the doctors!
"Long-term data comparing tE2 patches/gel with LHRHa show no evidence of a difference between treatments in cardiovascular mortality or morbidity. Oestrogens administered transdermally should be reconsidered for androgen suppression in the management of prostate cancer."
Those are great numbers Ron-- PSA can't get much better than that, and just enough T to keep things going! Just anecdotally, as I came off ADT, and T began rising to about 700 over several months, E2 followed it to about 80, and I started growing a pair as well! Fortunately, I managed to reverse the growth by running/working-out a lot, while E2 started to normalize back to around 40. I guess my endocrine system was all screwed up from T swinging from <12 to 700 and was just unbalanced. Keep on with the healthy life!
My last two blood tests have me a little confused about my T and E2 levels being much different than previous ones. Even though my PSA is still undetectable, my T is now well above the castrate level, and my E2 is has dropped way down from my previous female pre-menopausal levels. The only life style change that I can possibly attribute this to is that I have been spending more time in the gym.
Hi Ron. I mentioned the PATCH and STAMPEDE trials and he is aware of both. I mentioned them after he responded to my question. He nodded but it was end of discussion. I could have pushed for a why but I have such precious little time to spend with him. I didn't expect much when I asked and perhaps, if I'm still around when the STAMPEDE trial results are published, Estradiol will fall back into favor. In the interim, I will reach out to Wassersug.
My pc tells me that bio identical oral estradiol does not have the same extent of clotting issues that are associated with DES. He says it may even induce some apoptosis. He has, however, not been able to refer me to any papers, and i have not found any concerning bio identical oral estradiol and prostate cancer. He is very keen on hormones and caught my low D level (21), is fine with me taking 60 mg of melatonin, and addressed recent thyroid changes, so I take him seriously on the estradiol, though I would like some corroboration somewhere.
I would recommend that you PM Richard Wassersug (the E2 guru) regarding your questions.
I have read numerous articles about taking large doses of melatonin and some have indicated that it may actually interfere with the brain's ability to produce natural melatonin.
Just read your profile and I'm thrilled to hear that your PC is open minded and that you are feeling much better after discontinuing Lupron. There is little money for a doctor who suggests that his PCa patients switch to self administered E2.
Thanks Ron. I need to update my profile. I'm actually still on lupron after stretching a 6 month shot to a year with T rising to 53 and PSA rising from 2.1 to 4.4. Maybe I should have stretched it farther, I don't know. PSA continued to rise after resuming lupron. I recently finished 6 rounds of docetaxel. PSA had risen to 20 and the first bone met showed up in my spine. Seems I've had a good response to chemo and abiraterone is likely the next move. But I would love to give my pineal gland and the rest of my lupron affected system a break. This wonderful insurance scheme in the US, and my insurance in particular, will pay 100% for Lupron, but I would have to pay $80 a month to be able to use 4 E2 patches instead. Now my pc raises the oral E2 question. PC and pc research is like having a second job, and that's while things are going reasonably well.
That's very kind. I don't know what to do now. I will be getting another PSA in two weeks. I'm wanting to see if it's leveling or still rising. I will probably be making decisions. I will get back to you, if your offer is still available. Thanks.
Your T is 230. Then the gel works/may work in some other way.....not testosterone suppression??? Or, it may not be the gel that is the reason for your prolonged good results? Factors that are still not understood?
Is the goal to maintain extremely low T with the gel, as is done with SOC ADT?
My last two blood tests have me a little confused about my T and E2 levels being much different than previous ones. Even though my PSA is still undetectable, my T is now well above the castrate level, and my E2 is has dropped way down from my previous female pre-menopausal levels. The only life style change that I can possibly attribute this to is that I have been spending more time in the gym.
If you check some of my older posts you can see that my two recent T and E2 levels are much different than they were.
No one seems to know what is going on since the gel is my only form of ADT. I don't take any PCa meds.
To the best of my knowledge, the gel isn't available in The US, so even a prescription won't help. Most doctors would not even consider writing a script if it was available since there is no money in a self administered hormone. $20 to $50/month and no doctor visits!
No one seems to be able to explain how my PSA has remained undetectable for the last few months with my T well above castrate level? Curious to see what the next couple of months will bring?
The question I have for you is why continue the gel? If your psa is undetectable and your T is 230 it seems like you are all right for the moment. 88 alp is fine...balp runs from 20 to 47. I believe so it's unlikely you have an elevated balp.
I know how wierd this is going to sound, RonronHu, but it actually would be very helpful to see your "man boobs" in order to understand better the SE of oestradiol patches or gel.
Oh shit...I was afraid someone was going to ask! Can I leave a tank top on? Actually I'm living in the right country for a guy to have boobs, and they didn't even require surgery!
As I understand it, the PATCH trial, the intent of which is to determine toxicity and side effects was due to complete August of last year. I presume the delay to posting results is the result of analysis?The STAMPEDE Trial is due to complete in 2024 I think and that is to determine efficacy.
From what I'm reading above, ronronHU, you've been using oestradiol gel and it has been keeping your progression at bay. I believe others have also done this or are participating in the PATCH trial.
I don't have an advocate. Can you tell me where I can more information on this.
Is anyone recommending avoiding this protocol? Obviously trial is in process so I'm hesitant. I'm currently on Lupron and would not mind parting ways with some side effects.
I ask these questions not to leap forward but to understand risk reward without the benefit of a trial.
Glad you checked out my profile. I believe that I have written some posts with my opinions concerning tE2. My opinions have been formed by my interaction with several HU brothers as well as conversations and email exchanges that I have had with Ron and Richard Wassersug. Both of them have been extremely helpful.
Many guys have used E patches as supplements for their ADT treatments with the blessing of their MOs. But but MOs in the US are fearful to allow or encourage the use of tE2 gel exclusively for ADT. So of this, tE2 use becomes do it yourself (DIY) dosing. US MOs are fearful of legal entanglements from medical malpractice plaintiff attorneys. Historically, when E was used in oral pill form primarily with women during menopause, the oral usage caused cardiac problems and possibly birth defects in the children of women taking the oral E meds.
As a result, there was a class action lawsuit that was eventually settled in Boston that claimed that the oral E pill caused birth defects in the children of women who took the oral pill. You can read the information about that lawsuit on the web. When the DES lawsuit was settled, oral E pills disappeared and so did tE2 from the pharmacy shelves. Doctors stopped prescribing E for ADT and switched primarily to Lupron. Lupron is administered and paid by Medicare as a medical procedure - not a medication - administered in urologist's offices. It is a big source of revenue for urologists.
tE2 is available for purchase around the world OTC in other countries very inexpensively. Ron buys it in Thailand. Wassersug can get it in Canada, and I've been told it is available in France, Great Britain, Israel and Mexico. Those countries do not have the same aggressive medical malpractice attorneys that we have in the states. When I've tried to discuss tE2 with an MO at a COE, its like I wanted to discuss something that smelled bad.
There was an article published in the NE Journal of Medicine by a couple of Dana Farber MOs who had been watching the PATCH trial, and they commented that the results would be worth investigating, but I don't believe that any DF docs have allowed tE2 to be used for ADT by DF patients.
As Ron has said and done, I'd suggest you contact Richard Wassersug and talk with him. He's based in Canada but was educated as a biologist at Tufts in Boston. He's a good guy and very helpful. I did a post asking questions about tE2 on HU and asked members for feedback. Many guys reached out to me, and we have discussed their experiences with DIY ADT using tE2. I've seen Wassersug discuss his experiences with tE2 on YouTube.
Because I have had recent cardiac surgery, that is one of the reasons I've been investigating using tE2 for ADT. It offers fewer cardiac S/Es according to the PATCH preliminary findings. I continue to have an undetectable PSA, but it is drifting up, so eventually, I'll be making a decision how to handle ADT or not. I had CABG5 surgery in 7/21, so recovering from that has been my primary goal right now.
Hope this helps. Private message me and I'll happily respond with my email address and telephone number. Transparency should be the name of this tE2 investigation. Ron and Wassersug are long time users of tE2, and their guidance would be invaluable if you decide to try it for your ADT and to walk away from Lupron. Good luck.
I just read your history and it appears that you've been through hell and back fighting this crap. I believe you were 56 or 57 when you were diagnosed, correct? I was 60; however, my urologist guessed that I 'probably' had it for 4 to 5 years prior even though my PSA never reached 6. After my robotic RP and subsequent LN excision both failed, and I refused to subject myself to the nasty Lupron/Zoledex injections. That being said, I posted a photo of a tube of 'Oestrogel' four years ago on this site to which Richard J. Wassersug, B.A., Ph.D replied. I consider Richard the tE2 guru! He has published several books/treatises on ADT and this somewhat 'unconventional' therapy. He told me to call him, and what a great gentleman he is, in addition to becoming my mentor. My initial call to him ended up being 2 hours! I have posted several reports on this site describing my success with the E2 gel.
If you would like to get in touch with him, I can message you with his email and phone number. I'm sure he would be happy to communicate with you.
Ron, yes indeed, good times these past few years. I'm getting my scans next week. I'll broach the subject with my Doc and will be reaching out to you if you don't mind.
I do have a question about the enlarged breast, as that is also a side effect of Lupron. In all seriousness is it really different than the Lupron. I saw your pic and it looked to me like some bench presses may sort that. It helped me somewhat.
ron ron you’ve finally convinced me to give this a try. Ofcourse insurance won’t cover it and Walgreens charges me $170 a pump. I’ve read different suggestions on dosage, can you advise?
Two pumps a day can get very expensive ($340 a month) is one pump effective or is it trial and error?
US pharmacies are a total ripoff! If you want to try a couple of tubes my daughter who lives in Illinois can send you some. Sending it from here to The States gets a bit expensive since most international shippers won't accept gels. She would have to charge you $30 per tube (plus domestic shipping) which should last you approximately one month. I use about one tube every three weeks since I apply it twice daily. Since my PSA has been undetectable for almost four years now I started using slightly less. I think some of my posts should give you an idea as to how much I use. You can PM me for her phone number.
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