Estrogen for BRCA positive patients

[snoraste]

I'm seeing a lot of mixed recommendations on this topic. I was thinking of using estrogen patches for my occasional heating up and hot flashes. My MO recommended venlafaxine 37mg (not very effective for me)

[spinosa]

I'm a little confused here - venlafaxine is an SNRI (SEROTONIN-NOREPINE REUPTAKE INHIBITOR...usually for anxiety or depression). 37.5 mg is an EXTREMELY low dose...I have friends and have had students who take upwards of 300 or 600 mg. I take 75mg (ER =extened release...the doctor you started me on "regular" venlafaxine made a poor decision, as this caused me to act manic have a day, completely down the next...luckily, I fired her.

[snoraste in reply to spinosa]

it's an anti depressant, which is used to control hot flashes as well (and I think hair growth). I do have the ER as well. what dosage are you on now?

[spinosa in reply to snoraste]

75mg, daily. Seems to work, especially since my new doctor took me off amlodipine and onto beta blockers.

[Tall_Allen]

I read about mixed results for venlafaxine, but excellent results for estrogen patches for hot flashes.

I have no idea if estrogen works better or worse for PC in men with germline BRCA mutations. In general, however, the clinical results have been very favorable. They enlarged the UK PATCH Phase 3 trial based on very positive Phase 2 results, and Capesaris, an estrogen alpha receptor agonist tested out well. I would take 10 mg tamoxifen with it to prevent breast effects.

[snoraste in reply to Tall_Allen]

Thanks Allen - I'm more worried about the interaction between BRCAness and E. I'm hearing it might be similar to adding T to your body, and may not sit well with BRAC+ group

[Tall_Allen in reply to snoraste]

Where did you hear that? I haven't seen any clinical studies about it.

[snoraste in reply to Tall_Allen]

Not from a clinical source, but from a blog here a couple of years ago. And I should've presented it as a question as opposed to a statement. Given the BRCA+/E interaction in female breast cancer, can we expect a similar issue when adding E to men who are BRCA+? could not find anything online.

[Tall_Allen in reply to snoraste]

Well, the BRCA gene has to do with DNA-repair. Estrogen receptor-positive breast cancer is just one type. I don't know if there is a connection. Do women with BRCA germline mutations have more of the estrogen positive type? Breast cancer is more worrisome when it is ER negative.

[snoraste in reply to Tall_Allen]

Thanks Allen. I will need to talk to my MO about tis. He was hesitant giving me estrogen patches. Curious why

[Tall_Allen in reply to snoraste]

ER biochemistry is very complex. In addition to the alpha and beta subtypes, there are many sub-subtypes, all of which may have conflicting roles in prostate cancer and may predominate differently with PC progression. Lab studies are practically useless. I know Richard Wassersug knows a lot about it. You might also wish to contact Evan Yu at UW - he was the lead investigator of the Capesaris trial.

[Hidden]

Try cyproterone acetate for the hot flushes. I'm on 50 mg low dose and it really works a treat,its a synthetic estrogen. My onco says its a better bet than estrogen as it is easier on the cardio. Cheers and all the best.

[vandy69]

Dr. Snuffy Myers used Vivelle.dot estrogen patches with me to moderate side effects from ADT, until I got DVT in right leg and multiple PEs! Combo of PCa, estrogen patches, and non stop flights to and from South Africa gave me 8 days in hospital to finally control clotting factor with warfarin. Beware!

Best wishes. Never Give In.

Mark, Atlanta

[abmicro in reply to vandy69]

Snuffy always prescribed a blood thinner with estrogen patches. Perhaps you missed the memo. I was prescribed cumidin when on high dose patches for ADT, but switched to a daily aspirin after going on just one patch to control hot flashes.

[Hirsch in reply to vandy69]

Some of these practitioners get carried away with the therapies they prescribe for other folks..you had a life threatening complication.

Glad you survived..

[snoraste in reply to vandy69]

That's a sever reaction. Glad all worked out.

[EdBar in reply to vandy69]

Been on a daily patch for about 3 years now prescribed by Snuffy, never been on blood thinners and have had no issues. Really helped with hot flashes and he has me using it to help heal sclerotic lesions left by bone mets. Sartor has me continuing to use them. I seem to recall a video by Snuffy where he states that the patches don’t cause clots because the estrogen is not processed by the liver. He goes on to state that usually it’s the cancer that causes clots not the estrogen patches.

[Tall_Allen in reply to EdBar]

It causes fewer clots than pills, but it still can cause clots.

[EdBar in reply to Tall_Allen]

In women yes, but not in men. According to Doctor Myers it actually may prevent blood clots caused by advanced disease, helps with bone health and cognitive function.

[abmicro]

I am a fan of the vivelle patch for hot flashes ever since Dr Charles Meyers prescribed it to me years ago, and my current oncologist continues to recommend it. Studies show improved memory, joints, adds just a little hormone to a testosterone starved body so you will feel a little better, per the printed studies Myers handed me years ago. Studies also show IMPROVED cardio contrary to some studies showing the opposite. Patch must be prescribed with a blood thinner to reduce risk of clots because estrogen will thicken your blood a little. I use aspirin. The viville patch is a much smaller patch than other brands such as Clamera, and so it is better tolerated for people with sensitive skin.

[Break60]

I’ve used estradiol patches changed twice weekly for years. Excellent for hot flushes.

[Knittingque in reply to Break60]

Hi glad you have had success with E2 patches. I have just started. Could you tell me have you had some energy recovery after starting and how long it took for hot flashes to subside, generally how long until you started feeling somewhat normal. Thanks so much and good health to you.

[Break60 in reply to Knittingque]

hot flashes subsided pretty quickly as I recall. Fatigue is a mild problem. Breast enlargement is the biggest problem.

[E2-Guy]

As 'Tall_Allen' recently mentioned, Richard Wassersug is the tE2 guru. He has been my mentor since I started using Oestrogel back in April of this year. Richard has been using the gel for many years with fantastic results, and my PSA is currently the lowest it has been in 10 years. Other than sacral lymph node surgery last year, it is the only adjuvant therapy since my RP 14 years ago. As for side effects, the ONLY thing I'm experiencing is a slight bit of breast enlargement which appears to be slowing down. I have previously posted more info regarding this therapy.

[snoraste in reply to E2-Guy]

I saw some of the earlier posts, going back and forth between the "gel" and the "patch". Away from the PSA control (which by the way is fantastic), did you ever have any hot flashes that this gel helped with?

[E2-Guy in reply to snoraste]

Had it not been for my father's experience with DES, I may not be on this estrogen therapy regimen. He had an RP at about age 60, in and about 1970 and was on 5 mg daily doses of DES until the late 80s. Because of the numerous lawsuits resulting from 5 mg DES usage increasing CV, thrombosis risks, DES was taken off of the market and replaced with Lupron. He and his two brothers all experienced similar scenarios, and to the best of my recollection, never complained about side effects while on DES. After switching to Lupron he was so miserable that he finally opted for an orchiectomy and died at a 'ripe old age' of 89. After my LN surgery which did lower my PSA considerably; however, not to the extent that I was hoping for, I started reading every article that I could find on DES. This led to recent research on the efficacy of estrogen therapy in relation to PCa. Researchers are now of the opinion that 2 mg doses of DES are as effective as 5 mg thereby significantly reducing the CV risks. However, the patch and transdermal estradiol gels appear to further reduce the CV risks by avoiding the first pass metabolism of oral estrogens in the liver. Consequently, I started asking questions on this forum regarding use of the patch and E2 gels. Richard Wassersug responded and has become my mentor in this experiment. So far I am thrilled with the results!

[E2-Guy]

Since I have never been on any kind of ADT, (only the recent use of tE2 gel) I have not experienced any "hot flashes" whatsoever. I guess that I have been very fortunate to have zero (0) symptoms throughout this 14 year journey. I'm 75 and if it wasn't for periodic 'blood tests and scans' indicating that something was going on, I wouldn't know (or have known) that I have cancer. My family history was what prompted me to get annual and sometimes semi-annual PCa checkups. I just wish that I had gotten a biopsy when my PSA reached ~2.5 instead of waiting about two additional years for it to reach ~5. In my case it was simply a matter of time...Not a question of 'will' I develop PCA, just 'when'?

[Joeym1040]

I had terrible hot flashes (every 45 minutes like clockwork) very intense while i was on intermitent hormne therapy. Did not go away even when i was off treatment. Tried

acupuncture , isoy, chinese herbs etc. Only thing that helped me was 75mg of venlafaxine

daily. Eventually went to 37mg every other day. Pretty much under control. I then went on a clinical trial of applying estrodoil cream daily, It worked great for me, kept my PSA and T at 0. However about 6 months into the trial my hot flashes became more frequent and intense. Trial ended in Jan 2018 and i am still off treatment, but hot flashles getting worse.

May have to up my Venlafaxine to 75mg daily again. This is a CRAZY disease we all deal with, and we all react differently to treatment. I will say that with all the bad side effects

out there hot flashes are inconvenient but apparently harmless so i am thankful for that.

[Beermaker]

I have been on Venlafaxine (Effexor) for several years. My PCP doc suggested it after a study showed it worked for hot flashes with women. I said no. Then my MO suggested it also. I gave in and started on it. I suspect that the drug rep had been around advocating it.

Over time, I have upped the dose to 75 mg. It has helped with the hot flashes but has not been perfect. But it also helped me with depression so I keep on it. No harm that I have been able to find.

My current MO suggested two glasses of Soy Milk a day. Too bad I don't like the taste and mouthfeel. It did work and I will get more - the chocolate is better than the vanilla if you ask me.

[snoraste in reply to Beermaker]

soy milk for hot flashes? or as a general supplement? Soy it's sort of controversial.

[Beermaker]

In this case, just hot flashes. It actually seems to work.

[Wassersug]

Although I try to start out of discussions here, I see that I am mentioned by name in this thread, and by a couple of folks that I know and respect. So, I'll jump in.

It is true that I am personally using high dose tE2 for ADT. So far, as long as I stay on it, my PSA stays below the detectable limit. When I have gone off it over the last 16 years, my PSA starts to climb. So, I stay on it. I am essentially just following the PATCH study protocol, although I find the gel more easy to manage than the patches.

The use of tE2 to control the side effects of standard ADT agents (e.g., Lupron, Zoladex) is discussed at length in the 2018 edition of the book "Androgen Deprivation Therapy". However, tE2 is not promoted in the book as a primary agent for ADT since it is not approved for that purpose in North America.

Although Tall Allen (who knows his stuff) suggests tamoxifen be used to avoid breast development for men taking tE2, the truth is we don't know if that is safe in the long run. And I know that the PATCH protocol in the UK either doesn't allow or doesn't recommend tamoxifen use. A review article from a couple of years ago about "tamoxifen in men" suggests that it is probably safe, but there were no long term data on its use by men with PCa on ADT references in that review.

One of the postings here said that cyproterone is a synthetic estrogen. It is actual a progestin.

If folks want to discuss PCa and estrogen with me, I try to make myself available. My email address is easy to pull up off the internet. But I'm a slow typist and prefer to talk than type. So I am likely to try to arrange a time for phone contact.

[snoraste in reply to Wassersug]

Thank you for your reply Richard. I will be discussing this topic with my MO. I'm also following the PATCH study, but if you hear anything before us please keep us in the loop.

[Blueslover in reply to Wassersug]

What is tE2 Richard?

[Wassersug in reply to Blueslover]

tE2 stands for transdermal estradiol. Estradiol is the primary estrogen in our species. Taking it through the skin greatly reduces the blood clot risk associated with oral administration.

There is much more information on it and alternative ways to manage hot flashes in the new edition of the ADT book.

[Wassersug]

Note—If a PCa patient has the BRCA mutations that puts women (and men) at high risk of breast cancer, estrogen in any form is NOT recommended!

[snoraste in reply to Wassersug]

That's the question that I set out to find the answer to at the start of this post. That clears things out. thank you