Topical estradiol use: Stage IV, ER+ on AI

SandiBeach57
SandiBeach57 Member Posts: 1,617

Anyone using topical estradiol cream (2 week application) for vaginal atrophy/urethra caruncle? And if so, was it with your oncologist approval and what was the discussion? Non estrogen creams have been ineffective.

I am interested in hearing from those who are ONLY Stage IV, hormone positive and currently on aromatase inhibitors.

Comments

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited January 2020

    hi sandi

    I use an estriol cream. This is used as a gentle vaginal suppository and it’s worked wonders. I have to get it at a compounding pharmacy and pay out of pocket. It’s about $50 and lasts me a few months. It is mixed with hyaluronic acid which is also helpful

    Estriol is the weakest form of estrogen so I feel the most comfortable using this. It was recommended by my old primary and my MO feels it is safe.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited January 2020

    Thank you! Your response has helped me.

    I am meeting with my MO next week and need advice from women on this site.

    I will discuss what you are using with both my MO and UroGyn.

    My Urogyn is still thinking a small dab of estradiol cream (Estrace) applied topically to external tissues for only 2 weeks is okay, even when I am an aromatase inhibitor..letrozole.

    It is just that I am on cycle #40 of Ibrance/Letrozole for liver mets and don't want to screw up the winning streak. But my urethra health is suffering from collapse of vaginal wall (atrophy).

    S

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited January 2020

    image

    Here’s a pic of my prescription of Estriol.

    It is the weakest of the estrogens and yet I find it quite effective. I was struggling with vaginal tissue dryness and pain, as well as almost losing control of my bladder at night. That is all better now! My on/gyn said my vagina looks normal and healthy (thank goodness!).

    Also my MO and ob/gyn are in agreement that because this is such a trace amount applied locally that it isn’t enough to cause an uptick in circulating estrogens systemically...which is what we do not want to happen.

    I am very very happy with this prescription.

    Hugs!

    Phill

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited January 2020

    Thanks! I am emailing UroGyn and MO with this info.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited January 2020

    Just to make sure:

    0.5 mg Estriol in a 1 ml dose of vaginal cream

    I think you might have provided compromise between MO and UroGyn.

    S

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited January 2020

    that looks correct! Feel free to share pic with them. Good luck

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited January 2020

    Great post, Sandi! I got a prescription for Estrace (Estring), but haven't yet tried it, for the same reason, not want to mess up a good streak- however, my oncologist was very comfortable about it, as it is contained and not systemic..

    congratulations on 40 cycles (with liver mets, no less!) and still pushing the envelope

  • Anne45
    Anne45 Member Posts: 1,037
    edited January 2020

    I too have been prescribed the Estrace but have too too afraid to use it.

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited January 2020

    I have a long history with vaginal atrophy. It started in my 40's and treated with Vagifem. Successful if you are diligent. 60's and 70's with BC dx with AI's, it all just got worse. Lots of UTI's, BV, and vaginal yeast. When I ask an MO or gyn about topical estrogen, they say NO. Why take estrogen suppression and then use estrogen, they say. They say it gets into your bloodstream. I am currently doing a clinical trial with one subject, me. I convinced my departing MO to do a blood test for estrogen. It turned out to be for estradiol. I guess they don't test for estriol or estrone. This test I did as a baseline. My estradiol was 11. The normal range for postmenopausal women "untreated" (whatever that means, probably no HRT) on my blood test result was ND (not detectable) to 48. So mine is low? I will ask new MO on the 14th what he thinks. I will show him a product I recently bought on Amazon by a company called Bezwecken. It has 1 mg. of estriol and 3.25 mg. of DHEA. MO's react badly to DHEA. They say it turns into estrogen (estradiol?). When they say our BC is HR+, does that mean estradiol or any form of estrogen? I'll be asking. I will then use some of this Bezwecken product and ask to be tested again to see if they are right about it ending up in the blood. Bezwecken has a variety of products with various amounts of estriol and DHEA. It comes in a cocoa butter base with beeswax and vitamin E. My new strategy with doctors is to SHOW them what I plan to do by bringing a product with me to appointments. Plop it down on the table and say, "how about this?" When I go to my new MO on the 14th, we will have a lot to discuss and this topic may get tabled but I will keep at it.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited January 2020

    Jaycee49, I met with MO regarding topical use of estrogen product for vaginal atrophy and urethra caruncle . She said because it involves mucosal tissues there will be some systemic absorption..but enough to be a concern is the question .

    If I was on a SERD, it would be an easy approval. But since I am on an aromatase inhibitor, the main goal is to have no estrogen anywhere.

    She agreed to smallest amount of estradiol or estriol cream to exterior tissues for two weeks only, which is what UroGyn recommended.

    I am undergoing liver bx to rule out mets progression this week. If positive, then all this is a mute point.


  • jaycee49
    jaycee49 Member Posts: 1,277
    edited February 2020

    Sandi, did you ever do the two weeks of topical estrogen? Did it do any good for the urinary thing or vagina? I ordered the Bezwecken product with 1 mg estriol plus 3.25 mg of DHEA. I've used it every two or three days for about two weeks. It is really helping, I think. Too soon to tell. I worry that the dose is so much higher than Vagifem or equivalents. Vagifem has 10 mcg (.01 mg). Yuvafem has that, too. Imvexxy has two possible doses, 4 mcg or 10 mcg. All of those are estradiol. So I'm ordering from Amazon and may end up with MORE of something no doctor would prescribe. If it wasn't so stupid it would be ironic.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited February 2020

    Hi Jaycee49, I have completed 2 weeks of Estradiol topical cream. It has helped some with the urethral caruncle and vaginal dryness. So I guess partial success.

    My MRI showed show possible changes in my liver, but could not be confirmed with ultrasound or PETCT. So I am to continue with I/L and repeat MRI in March. So my MO is very cautious with any estrogen use while on an aromatase inhibitor.

    She approved only 2 weeks for the Estradiol. Since this was mainly for uro relief from vaginal atrophy, I will wait and see if I have further discomfort.

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited February 2020

    I see MO next Wed the 12th. We are supposed to continue my trial by testing for estrogen in my blood. He will not remember that. I will have to call or wait for his office people to figure out what is what. It took about 10 minutes last time. Just for the whole thing to register with any of them. I said test for estrogen but the only test they could find on their forms was estradiol. It will be a late Ground Hog day, going through it all again. But I am very interested to see what the test will show. My estradiol number last time (baseline) was 11. I will look up the metric. I looked it up. It said 11.8 pg/mL, whatever that is. Will it be higher? I have no idea. I've used eight of the Bezwecken suppositories so far. May use one or two more before I see him. This is the real test to see if MO's knee-jerk reaction to topical estrogen is justified.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited February 2020

    Would be interested in those results..well, if you can get the right test ordered..

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited February 2020

    Sandi, I got the blood test for estradiol (the only one they do) yesterday after using the Bezwecken product (1 mg estriol plus 3.25 mg DHEA) for a month. It came back ND or "not detectable." The range for postmenopausal women is ND to 44. So 11.8 using none and ND using some. I used the estrogen suppository every other day for the first week and a half and every third day for the rest of the month. MO still refuses to allow low dose rx, even though that would be LESS estrogen. He said it would mean a risk (perceived, obviously). He asked what if I had a recurrence. I said, I already had a recurrence. I get his position, sort of. I'll keep at it since my uro-vaginal symptoms have basically disappeared. I will keep reducing the amount I'm using and switch to the product with no DHEA. More experimenting.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited February 2020

    Interesting data. We will always have that threat of recurrence. For me, I needed some estrogen help in that area, even if was temporary.

    In the end, our choice, but I respect the MO trying to lengthen PFS as long as possible. Just seems like a crap shoot for both the MO and me.

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