Has anyone been on Estadiol as a treatment?

Kudra

I just talked to my onc about different treatments because my Faslodex/Arimidex combo is no longer working. He gave me some options to think about. I chose Estadiol and will probably start this week.

I know it's an unusual treatment choice but it suits me for now. Among other things it can sometimes get your body back to being sensitive to hormonal therapy again. 

I just wondered if anyone else was making this choice for a while. 

Bestbird

Kudra, there have been some encouraging studies about estradiol as both a treatment for ER+ mbc (as contradict tory as that may sound) and as a "re-boot" mechanism after Aromatase Inhibitors no longer work.  I've taken the liberty of pasting  information about it below.

I personally know 2 ER+ people who've benefited from it, one for 15 months and another who's been on it for 3 months and counting! 

Best wishes for a successful outcome!

Reintroducing Estrogen after AI Therapy

When estrogen-lowering drugs no longer control metastatic breast
cancer, the opposite strategy might work. Raising estrogen levels benefited 30
percent of women whose metastatic breast cancer no longer responded to standard
anti-estrogen treatment, according to research conducted at Washington
University School of Medicine in St. Louis and collaborating institutions.

The results are reported in the Aug. 19, 2009, issue of the Journal
of the American Medical Association. Not only did estrogen treatment often
stop disease progression, in some patients metastatic tumors became
resensitized and again responded to anti-estrogen treatments.

"The women in the study had all experienced a relapse while
on estrogen-lowering drugs, and their disease was progressing," says lead
author Matthew J. Ellis, M.D., Ph.D., an oncologist with the Siteman Cancer
Center at Washington University and Barnes-Jewish Hospital. "So they were
faced with undergoing chemotherapy. We found that estrogen treatment stopped
disease progression in many patients and was much better tolerated than
chemotherapy would have been."

Sixty-six postmenopausal women with breast cancer that had spread
beyond the breast participated in the study. All participants were originally
diagnosed with estrogen receptor positive (ER ) breast tumors, meaning estrogen
stimulated tumor growth. All participants had received aromatase inhibitor
treatment, which severely lowers estrogen levels, but their metastatic tumors
had later reappeared or resumed growing.

The study compared a high 30-milligram daily dose of estrogen to a
low 6-milligram daily dose, and evaluated how well the treatments controlled
the women's metastatic cancers and how the treatments affected their quality of
life. The high dose results in estrogen levels in the blood comparable to that
of pregnant women, while the low dose gives estrogen levels similar to that of
women who are ovulating, Ellis indicates.

In both the high- and low-dose groups about 30 percent of
participants experienced a clinical benefit — their tumors either shrank or
stopped growing. Interestingly, the researchers demonstrated that they could
predict fairly accurately which patients would have this positive response.
They conducted standard positron emission tomography (PET) scans before
estrogen treatment and 24 hours later. If metastatic tumors flared, or glowed
more brightly, in the PET scans after estrogen was started, they were much more
likely to be affected by estrogen therapy. In 80 percent of women with PET
flare reactions, tumors responded to estrogen therapy, and in 87 percent of
women without PET flares, tumors did not respond to estrogen.

The participants filled out questionnaires to indicate whether
they had adverse reactions to estrogen during the study. Adverse reactions
could include headaches, bloating, breast tenderness, fluid retention, nausea
and vomiting. Patients receiving the high estrogen dose had more severe side
effects.

"The older women in the study were, the fewer
estrogen-related symptoms they had," says Ellis also professor of medicine
in the Division of Oncology. "But overall, we demonstrated clearly that the
low dose was better tolerated than the high dose and was just as effective for
controlling metastatic disease."

In the 30 percent of participants who responded to estrogen,
tumors often began to grow again after a period of months or years. But in a
third of these recurring cases, the researchers showed that the women's tumors
had become resensitized to anti-estrogen therapy. The tumors shrank or stopped
growing when the patients went back on their original aromatase inhibitor
treatment.

In addition to the Siteman Cancer Center,
participating institutions include the University of Chicago, Case Western
Reserve University, Memorial Sloan-Kettering Cancer Center, the University of
North Carolina at Chapel Hill and Duke University Medical Center.  From: From
http://www.siteman.wustl.edu/ContentPage.aspx?id=3757

Results  The adverse event rate (≥grade 3) in the
30-mg group (11/32 [34%]; 95% confidence interval [CI], 23%-47%) was higher
than in the 6-mg group (4/34 [18%]; 95% CI, 5%-22%; P = .03).
Clinical benefit rates were 9 of 32 (28%; 95% CI, 18%-41%) in the 30-mg group
and 10 of 34 (29%; 95% CI, 19%-42%) in the 6-mg group. An estradiol-stimulated
increase in fluorodeoxyglucose F 18 uptake (≥12% prospectively defined) was
predictive of response (positive predictive value, 80%; 95% CI, 61%-92%). Seven
patients with estradiol-sensitive disease were re-treated with aromatase
inhibitors at estradiol progression, among which 2 had partial response and 1
had stable disease, suggesting resensitization to estrogen deprivation.

 Note 1: One woman said that when cancer spread to the liver, the
Dr. wanted to try this one last thing before chemo to see if the cancer could
be tricked WITH estrogen (I believe she used Estradiol). After 2 mos., the CT
scan showed stable with even maybe a tiny shrinkage in tumors throughout the
liver and TMs from 100 to 85. First drop in years.  She took estrogen pills 3 times a day and it
is pretty tolerable except for bleeding.

Note 2: Another woman wrote,”More good news. Tumor markers last week had dropped
another 50% to 90. So in two months on
Estradiol CA15-3 went from 213 to 90. Working well and still feeling great!”

 

 

Kudra

That's awesome! Thank you for sharing. I did do some research before starting  but it's nice to know I'm not the only one who found it attractive.

I want to make sure to emphasize I really think the Faslodex/Arimidex duo worked well for quite a while. I was very lucky  to have that option.

When it stopped working a tiny part of me was almost relieved that I could get a little break. I'm just so tired.

I'm hoping the Estradiol will give me a little  "pep in my step" for a bit. Of course it would rock if it actually shrunk some stuff.

We shall see! 

Thanks again for the info!

Kudra

I just realized I spelled it wrong in the header. Bummer!

new2bc

I have read somewhere the same thing could happen to people taking Tamoxifen as far as not working anymore. When that happens, is the option is to take AI or try estradiol?  

Kudra

new2bc,

From what I have read here and several other sources, when one hormonal therapy stops they usually start you on another. 

Estradiol was big in the 60s for breast cancer treatment. 

Often they will switch you to another al, arimidex, aromasin or Faslodex. ( I can't think what class that's in right now.

I'm feeling really tired today and my mind is not working well.

Estradiol is not a typical treatment at that point, but it was one of my options and sounded attractive to me because I like the idea of building my bones back up and also feeling good for a while.

I'm kinda gambling that it will trick my body into being sensitive to Arimidex again. It's about a 30 % chance.

It's so personal and our bodies are so different. I would talk to your oncologist and see what he or she thinks is right for you. Also, if you haven't been, they have a Tamoxifen thread and those ladies are pretty knowledgable. 

Much love!

Rebecca

Longtermsurvivor

Hi,

I'd like to add another story to this topic/thread, a bit of my own.

First, a disclaimer or two.

I chose the bco nickname Longtermsurvivor as a fifth try to find a never-before used name here. And because it's accurate. I've lived with advanced breast cancer for a very long time. Since being diagnosed in late 1990 and having bilateral mastectomies without reconstruction, regional recurrence has been my constant companion. I also have mets to the lung, pleura, liver, belly, internal lymph nodes and a few inconsequential bones.

Mine is a long and unique story and I always hesitate to tell it in breast cancer circles, because I can't offer any prescriptions or warnings for others. My experience is my own and won't be yours!

Yet, I'm surprised there aren't more reports of use of estradiol in hormone positive cancer that's become resistant to anti-hormonal treatment.

Leaving out lots of details from a long, complex story:

My original cancer, officially diagnosed in early 1991, was hormone positive, but became hormone negative, so I only tried tamoxifen in the early 1990s, not the AIs then.

I began taking Femara in early 2008 when cancer diagnosed at hormone positive again and I was very symptomatic for pleural mets (the lung hadn't bothered me much prior to this). After a few months, I achieved partial remission and stayed stable for 3 years, before the cancer began progressing.

Then I tried Aromasin, Faslodex and even herceptin (when pleural fluid tested HER2 equivocable). No response, just progression.

In 2012, I had a VATS pleuradesis procedure after a couple of thoracentesis drains and since then, no more fluid, but still lots of tumors, shortness of breath, etc.

In early 2013 my oncologist and I decided to try estradiol, figuring that the cancer had possibly changed hormone status. I began with 1 mg. daily and eased up to 4 mg daily, then back to 1-2 mg daily.

The guidelines (see next post) suggested 6 mg daily, but I'm a long time user of homeopathic and anthroposophic medicine, so quite sensitive to conventional meds. I try taking the least dose possible for the desired effect.

This brought me a year of stability in my lung and pleura, but in early 2014, I was diagnosed with a dozen tumors in both lobes of my liver.

We began experimenting with testosterone, can't even remember the rationale or research, and continued with a bit of estradiol for a few months, but it no longer felt like the best strategy for me.

In early 2015 I began experiencing ascites, fluid in my abdomen, and we suspected liver failure. I started and stopped Femara after a couple of months, because I didn't like the unwanted effects.

A June 2015 CT scan confirmed ascites, peritoneal mets and tumors on the outside of my liver consistent with ovarian or primary peritoneal cancer. (Did I mention that I move slowly?). This led me to resume the Femara and I've had no ill effects on this, my third run. It works well on the pleural mets, but doesn't seem effective against the liver and belly mets, except to slow things down.

In August, I had an indwelling drain implanted to remove ascites (a liter a day) and four months ago, I enrolled in home hospice care.

Later in November, I joined bco to participate in the D&D topic/thread and to meet Rosevalley, one of my super heroes and a rare one living with indwelling drain.

That's my story about estradiol. This story is complicated by both my rare genetic condition and my engagement of Iscador and anthroposophic medicine for nearly 20 years - I started it when adriamycin failed me in mid-1996. But that's another long story that's affected my long survival with what's likely to be a terminal disease, MBC.

I hope this is helpful for current or future bco members interested in this unusual approach to re-sensitizing treatment-resistent hormone positive MBC to anti-hormonal drugs.

I will apologize in advance for not having the energy to reply and respond, as I'm quite ill now and want to share this while I still have the strength to remember and write. Also, I don't believe that my recipe for success will work for anyone else!

Sending warmest healing wishes for all, Stephanie

Longtermsurvivor

Bestbird shared the 2009 press release about this free full text medical journal article.

If your oncologist likes "official" studies, this may be helpful:

JAMA. 2009 Aug 19;302(7):774-80. doi: 10.1001/jama.2009.1204. Lower-dose vs high-dose oral estradiol therapy of hormone receptor-positive, aromatase inhibitor-resistant advanced breast cancer: a phase 2 randomized study. Ellis MJ(1), Gao F, Dehdashti F, Jeffe DB, Marcom PK, Carey LA, Dickler MN, Silverman P, Fleming GF, Kommareddy A, Jamalabadi-Majidi S, Crowder R, Siegel BA. 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC346038...

Longtermsurvivor

Here's another article, this is historical and from MDACC. But it may interest oncologists. Again, it's free full text:

The New Biology of Estrogen-induced Apoptosis Applied to Treat and Prevent Breast Cancer

V Craig Jordan

Healing regards, Stephanie

Heidihill

Stephanie, thanks for sharing your story and for the link. Are you still on Femara? Have you considered trying estrogen again? I am just wondering if it will improve your quality of life. But I don't even know if these options are open to you in hospice care. I wish you all the best, in any case, and send healing energy.

Longtermsurvivor

Hi Heidi,

Thanks for asking about my experience, not for medical advice.

I am not a medical professional and do not diagnose, treat or prescribe for others.

What and how I've done is so unconventional, I've hesitated to describe it to others, least they take it as advice.

So, I found some old notes and realized I re-tried femara at the beginning of 2014 when the first batch of liver mets were found. I stopped within a couple of months. Then re-tried it again in early 2015 as ascites became apparent, not mid-2015 when belly and more liver mets found.

Amazingly, my hospice allows me to continue with both femara and weekly infusions of Iscador.

I get it at my local pharmacy through Medicare part D and now that femara is generic, the price has dropped from from $1000 monthly to $10.

My personal theory is that though Medicare hospice benefits don't cover medications meant to cure (and sometimes even treat) what will kill us, their right hand really doesn't know what the left is doing and this is flying under their radar...to mix metaphors.

And yes, I might take estrogen again. Though I'm focused on dying now, my quality of life is still vitally important to me and I won't hesitate to engage tools for improvement. Right now, those are mainly spiritual, mind-body, process, homeopathic and anthropsophic medicines with a healthy dose of conventional hospice meds. Who knows what the future holds.

Sorry to be long-winded, just woke up.

blessings, Stephanie

Heidihill

Thanks for responding. I am not a medical professional either but I think it is great that you can continue with your meds. For Femara this may have become easier as the generic has gotten so cheap! The Iscador is probably also helpful in keeping your immune system humming. At least based on what my doctor told me. And I would think he has some experience with it as it is popular here, as are homeopathic and anthroposophic meds in general. Take care.