Diagnosed PSA 642 in 4/16. Started Lupron/Casodex did 6 rounds of chemo. Got to as low as .16 which lasted a year and a half before switching to Zytiga/prednisone as PSA quickly rose to 18. This lasted 13 months with PSA never going below 1 then started rising quickly doubling monthly. Started Xtandi and it has slowed finally after 3 months but is currently at 56. Onc is thinking DES before doing another set of chemo rounds. This all depends if Xtandi doesn’t start lowering PSA. Is it too old school or out of the box?
DES: Diagnosed PSA 642 in 4/16. Started... - Advanced Prostate...
DES
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Nutters85
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IMO DES is the best of the lot. A lot of guys have gotten 14+ years out of it, and doesn't seem to cause the AR mutation that the Xtandi and Zytiga cause which leads to a monster when they fail. DES can be cytotoxic to PCa cells and has lowered PSA to <.1 without lowering T levels...figure that one out. Dr. Strum was real big on DES. The blood clot problem was with 3mg but 1mg works and low dose aspirin takes care of blood clots.
Gus
Gus, I second your comments. I just posted an update below on my tE2 success; however, my recent, huge increase in T level is a bit confusing/unexplained? I am going for a retest soon.
can you tell me what all the abbreviations stand for?
To answer your question (for a while I bet you thought you were invisible).
When you click on a topic the name of the list is on the right side of the page about a 1/4 of the way down. It's called PCa Abbreviation list updated by the user "Moespy".
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 01/30/2019 5:06 PM EST
btw DES = diethylstilbestrol (an estrogen).
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 01/30/2019 5:41 PM EST
If you're going to use DES or other estrogen, transdermal is the best way to go to avoid blood clots. You might also discuss 10 mg/day tamoxifen to prevent breast enlargement or tenderness.
Tall, what dosage level would you use if using estrogen patches? They come in 0.1 mg and 4-5 patches are recommended to avoid clots
jal.
I really don't know. You should PM ronronHU or Wassersug -- they would know better than I do.
Is Tamoxifen helpful for treating breast enlargement and tenderness from standard ADT as well (eligard, firmigon, casodex, & xtandi)? I have been developing a nice set of man boobs that are tender all the time after 2 years on ADT. thanks
Yes. See my comment to ronronHU below.
Nal,
what is high dose pygeum
Gus
Gus....
Not sure how high a dose you can go....had not heard of this, but here's some info:
healthline.com/health/food-...
Have a great evening,
Fish
Fish,
some guys used it for BPH but I have never read it could turn off AR-V7
Gus
FWIW, my husband has been on estrogen patches (4 patches at a time, changed every 3-to-4 days (so 8 patches per week) which has quite effectively kept his testosterone at castrate levels (usually around 3) for several years. Earlier that "treatment" kept his PSA down as well.
He is very sensitive to the adhesive in most bandages, but the adhesive in the patches is not an issue.
I echo Tall Allen's suggestion of getting in touch with Richard Wassersug. He was great about responding to emails and is very, very knowledgeable having "been there" himself. Also Google the PATCH trials in the UK for additional information.
Our onc had suggested Premarin shots, but after reading up about the treatment of the mares, we went with the patches.
From the Diethylstilbestrol [DES] page on Wikipedia [1]:
"Orchiectomy or DES or both were the standard initial treatment for symptomatic advanced prostate cancer for over 40 years, until the GnRH agonist leuprorelin was found to have efficacy similar to DES without estrogenic effects and was approved in 1985."
That boosts the impression I have that Lupron is safer than DES, but not necessarily better. After all, the aim of both has been merely to inhibit gonadal testosterone [T] production, & both achieve that.
The safety issue was significant, since DES was commonly used at a dose of 5 mg or higher. I know of a number of men who are doing well on 1 mg. Even so, Unwanted coagulation can now be monitored via D-dimer, & nattokinase can be used to inhibit coagulation & rapidly break down clots.
There are those who favor estradiol [E2] because it can be delivered (more safely) transdermally, but (oral) DES has an a attraction:
"it may have direct cytotoxic effects in the testes and prostate gland" [1]
In fact, I know two men who found that DES did not lower their T but did lower their PSA to near zero. DES is a synthetic estrogen & these men failed to react to it in the same way they would have reacted to elevated E2.
From 2000 [2]:
"Charles Huggins pioneered the use of the synthetic estrogen, DES, in the treatment of advanced PCa in the early 1940s. The action of DES was thought to be mediated via a blockade of the pituitary-testicular axis, which effectively lowered circulating levels of androgen and caused tumor regression. However, recent investigations have demonstrated that DES exerts direct growth-inhibitory effects on prostatic cancer cells via induction of mitotic arrest or apoptosis".
From 1996 [3]:
"Direct cytotoxic effects of DES in prostate cancer cells are estrogen receptor independent and do not involve disruption of microtubule architecture but do involve he promotion of cell cycle arrest and apoptosis. These are the first data confirming direct cytotoxic effects of DES and DESdP in prostate cancer cells via an apoptotic mechanism. Implications : These results suggest that DES and DESdP have potential value as agents against androgen-insensitive prostate neoplasms through induction of an apoptotic cascade."
From a 2015 U.K. study [4]:
"To investigate the efficacy of diethylstilboestrol (DES) in patients with advanced prostate cancer refractory to androgen suppression." i.e. CRPC cases.
"This retrospective study comprises 194 patients with prostate cancer treated with DES (1 mg daily) between 1976 and 2010."
"At initiation of oestrogen therapy the mean patient age was 69 years (range: 48-89) and the median PSA was 96 ng/ml (range: 1.9-9,500). The median duration of prior prostate cancer treatment was 29 months (range: 1-365). DES was the second-line treatment in 58 patients and the third/fourth-line therapy in 136 men. A formal (≥50%) PSA response was observed in 95 patients (48.9%) and the median time to progression (TTP) was 250 days ... for this group. An additional 62 patients (31.9%) had a partial PSA response with a median TTP of 150 days ... Thirty-seven patients (19.1%) did not have a PSA response and the median TTP was 90 days".
A 2012 U.K. (Royal Marsden) study [5]:
"To assess the efficacy and toxicity of diethylstilbestrol (DES) in the management of castration-resistant prostate cancer (CRPC)."
"A total of 231 patients with CRPC received treatment with DES at the Royal Marsden Hospital between August 1992 and August 2000. • The median pre-treatment prostate-specific antigen (PSA) level was 221 ng/mL. • DES was used at a dose of 1-3 mg daily, with aspirin 75 mg."
"The PSA response rate (using PSA Working Group criteria) was 28.9%."
A 2013 U.S. study [6]:
"The purpose of this study was to assess the efficacy and safety of low-dose (1 mg) daily diethylstilbestrol (DES) for the treatment of castrate-resistant prostate cancer (CRPC)."
"A PSA decrease of ≥50% was observed in 19 of 49 pre-chemotherapy patients (39%) with a median time to progression (TTP) of 30 weeks ... A PSA decrease of <50% was seen in another 16 patients (33%) with a median TTP of 16.4 weeks "
-Patrick
[1] en.wikipedia.org/wiki/Dieth...
[2] cancerres.aacrjournals.org/...
[3] academic.oup.com/jnci/artic...
[4] ncbi.nlm.nih.gov/pubmed/253...
I wonder if pygium is the mystery drug I am taking with Xtandi in this drug trial?
I like your Oncologists thinking......wish he was in my camp....I’ve been on DES .5mg for 4 years now maintaining a PSA of .7 with testosterone fluctuations between 400 and 500. I also added Metformin half way through the process. I’ve had arguments with my Onc who was firmly against it and although he calls me his most amazing patient he seems very disinterested in my visits. I guess I really take him out of his comfort zone. He was honest with me though when he stated that there won’t be any studies on DES because “there’s no money in a drug that costs me $90 for a 3 month supply.
There are two major randomized clinical trials of transdermal estrogen in the UK right now - STAMPEDE and PATCHES
I posted this a couple of months ago...just updated it.
When I became a candidate for ADT I started reading every article that I could possibly find about the old drug 'DES' (synthetic estrogen) that I believe kept my dad and his two brothers alive for many years, (at least 20) with few of the nasty side effects that Lupron and other 'modern day' drugs exhibit. Prescribed for advanced PCa for about 40 years (and also for various female conditions), it was taken off of the market in the late 80s and replaced by Lupron in 1989 due to the increased CV, stroke and thromboembolic risks (~30%). This risk factor was determined to be caused by the 5 mg oral dosage which has been greatly reduced by the use of transdermal estradiol (tE2) gels and patches which allow the hormones to enter the bloodstream directly through the skin thus avoiding the first pass hepatic metabolism effect. Estradiol is the most potent of the estrogens and can be quite effective in lowering PSA levels. My dad and his brothers were not 'cry babies', but I think that I would have heard at least some complaints if they were not doing well...don't recall any! My dad was still riding a 1000 cc Kawasaki Z1 until he got hit by a car at 87. That put an end to his biking days; he then fished until he died at 89. One of his brothers still worked the night shift in his 'Tool & Die' shop until about age 75, and then spent the last 12 years of his life working on various home projects, fishing, and sailing. My other uncle moved down to Hilton Head at 80 and enjoyed about five good years there...died at 86. All three of them had RPs around age 60 followed by biochemical recurrence and were subsequently put on DES.
Prior to finding out about the gel, I tried to find DES (2 mg supposedly has about the same efficacy as the 5 mg dosage with much lower CV risks); however, was unsuccessful since it is seldom prescribed today. The only current use that I was able to find is for the treatment of incontinence in spayed dogs...still was unable to find it here in Thailand. The clear E2 gel that I started using 10 months ago is so easy to use (I just smear it on my inner thighs), dries in a couple of minutes and causes no skin irritation. I believe it is better than the patch and less expensive (~$8.00 US in Thailand, and $40.00 on Amazon for about a month's supply). I had increased my dosage a few months ago to about 2.5 mg/day in an effort to get my T level closer to castrate level. It had declined rapidly to 70 so I lowered my dosage slightly to about 2 mg. The blood work that I just had done last week showed a slight increase in my PSA to 0.076, and a large T increase from 70 to 415. This increase is confusing and I am wondering if it may be due to lab error...will get another T test in about a month.
From most of what I have read, it appears that DES has similar efficacy to Lupron with the most significant SE being gynecomastia. Unlike most of the LHRH drugs, it maintains bone density since E2 is the responsible hormone. My recent use of the tE2 gel has lowered my PSA to a level equivalent to levels experienced 12 years ago with the ONLY SE's (I repeat "ONLY") being breast enlargement and nipple tenderness. 'Tall_Allen' has suggested that I try 10 mg tamoxifen to reduce the breast effects which I'm going to do; however, it may be too late since I already have some 'cute' boobies. Back in April when my PSA continued to rise after sacral lymph node excision, I posted a question on this site regarding the use of tE2 for recurrence of PCa and Richard Wassersug, PhD replied with a wealth of information. He has authored two books on ADT and has since become my mentor on my successful use of tE2. I have previously posted my very encouraging test results since I started using the gel in April, if any of you are interested in reading them. Best regards to all, Ron
Hi rinrinhu,
I am very much interested as I am about to start ADT and very worried about resistance of ADT later and ofcourse side effects. I will see my MO in about 3 weeks from now. He is at MSK. I get the feeling from reading about this that he will never agree to it. You said your psa statarted rising since April, does this mean the des stopped working? Thanks
Just my opinion based on my journey...I believe you are a good candidate for trying the transdermal E2 route since your PSA is still quite low. This estradiol regimen is not exactly the same as DES, but is similar in that it is a type of estrogen therapy. My urologist/oncologist/surgeon wasn't too concerned about me until my post-op RP PSA reached ~1.0. When it reached 1.1 -1.2 in 5/2017 I had a 68Ga PSMA scan in Melbourne, AU for $600 US which identified three sacral lymph nodes. I opted for robotic surgery to remove them in 8/2017 which lowered my pre-op PSA of 1.3 to 0.54; however, my PSA continued to rise until I started using tE2 gel in April of 2018. My PSA has been going down ever since...just a recent slight increase to 0.076 from a nadir of 0.046 possibly due to my recent reduction of the gel amount. In retrospect, I would have tried the tE2 regimen before I had the scan and subsequent surgery. Tall_Allen replied to one of my posts questioning the validity of most scans since they rarely identify tumors smaller than 4 mm. Based on that, my LN surgery was simply 'palliative' most likely leaving the smaller mets remaining/smoldering.
I don't imagine that your doctor will advocate the use of this therapy since to the best of my knowledge, it is not FDA approved in the US nor is there any money to be made at an average cost of <$40/month and no required doctor visits. I haven't been to a doctor since my LN surgery 17 months ago.
I have gone into much detail in my previous posts if you would like to read them.
Wishing you the very best, Ron
Thank you very much Ron,
I really would like to try it before I start ADT. I tried the diet, exercise and supplements and none helped to stop the psa rise. I am scheduled to do the 18F pet scan at NIH clinical trial middle of FEBRUARY and tomorrow I am doing the scans required before the trial( CT chest, abdomen and pelvic & bone scan) to send it to NIH. if your psa continues to stay there or stop rising, I would think you would continue with the gel? I do agree with TA though about the treatments of SBRT or LND because my feelings are the scancer is there and there are some you can see and some you can’t so either ADT or this therapy of estrogen will help. Wish you best of luck at keeping the psa low. Thanks a lot for answering me back.
I don't know if you are going to incur any large OOP expenses with your scheduled scans, but if you anticipate that happening, I might consider trying the tE2 gel first to see if you can lower your PSA. And yes, I will continue my current regimen if my PSA remains at these low levels. Dr Richard Wassersug, PhD (my mentor) is the man who can give you all the information you ever need to know about this therapy. I'm sure he would be happy to chat with you if you private message him on this site.
All the scans and expenses more or less is covered. I was just concerned with the radiation effects but at this point, I am trying to forget about what happens years from now with the ct radiation and I am also thinking not to start the tE2 now until I finish with the 18f at NIH and then definitely look into it and starting it once I get the results of the scans and evaluate. Thank you Ron and TA for your experiences with this. I truly appreciate it as always
Ahk1 wrote: " I will see my MO in about 3 weeks from now. He is at MSK. I get the feeling from reading about this that he will never agree to it."
You could also suggest Bicalutamide. This is FDA approved and a Bicalutamide monotherapy will work similar to the estradiol therapy ronronHU is using. See the report by traveller64:
healthunlocked.com/advanced...
Thank you GP24,
I will certainly check with my MO and see what he thinks. If I had to choose, which one you think will give better results?
There has been no trial comparing bicalutamide with DES, so I cannot tell. Bicalutamide is often used for flare-up protection today, so you MO is familiar with that while the DES gel is "off-label".
You could currently choose to just observe the PSA value for a while or try Bicalutamide monotherapy while observing. This should keep the PSA value low for a long time. So your MO may say: ok, try it.
Great post! 10 mg/day tamoxifen PREVENTS gynecomastia, but 20 mg/day can reverse it:
clinical-genitourinary-canc...
If connective tissue has had a chance to develop, cortisone can be used to get rid of small amounts. If there are large amounts, surgical excision is necessary.
It also may have an anti-androgenic effect. Traveller58 found that tamoxifen decreased his testosterone level, while raloxifene increased it (an effect he wanted on his iADT). This is purely anecdotal, but plausible because tamoxifen can act as an estrogen agonist in some tissues, but as an estrogen antagonist in breast tissue.
Thank you Allen for your ALWAYS helpful comments/posts! You are a tremendous 'wealth of information'. I am going to start the tamoxifen regimen tomorrow...will keep you apprised.
Hi Ron
Do you know where I can buy the tE2 please?
I thought you could still buy it on Amazon; however, I can't find it anymore. If you Google "Oestrogel" you will find many suppliers listed online. Here is one link that I found selling it for only $10.00: ivfpharmacy.com/drug/Estrog....
If you need any help finding it, perhaps I can arrange to have my pharmacy here in Thailand send it to you...or I can possibly do it myself.
Thank you TA VERY MUCH.
Nal,
In your opinion is finding out if AR-V7 is positive the/a top priority? Wow!! I appreciate all the responses from everyone. Fight on men!!
Thank you for your information.
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