Why wont they give me ESTROGEN?
Comments
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Ninel,
At first when I read your post I began to worry as most anything applied topically is released into the bloodstream. Then I found this article, and under Treatment options and Dosage forms, in the last sentence it states that systemic absorption is very unlikely.
However, this article is on BHRT...biodentical hormone replacement. Are you sure you want to be taking a synthetic hormone? Just saying?
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Nan,
The Estring is not a topical cream. It is a band that is inserted vaginally and needs to be switched out every 90 days.
My onc said it was very safe.
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I am a triple neg and I cannot take hormones either. Chemo put me in menopause and I cannot get my O's. I saw my gyno and she put me on Cialis and it has made a difference. Ask about it...I love my O's again
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Dear ebann,
My daughter Lori was dx with TNBC in June of 2007, Stage2A, grade 3, and she has been on BHRT since June of this year. Conventional doctors may tell you that you cannot take HRT, but Lori goes to an antiaging specialist in Pittsburgh who was more than willing to work with her with a dx of bc. She would never take the synthetic hormones as they are known to cause bc, and possibly other cancers as well. Lori was thrown into menopause from the chemo, and having all the same symptoms that apparently all women have after chemo. Now, she feels as if she is in her thirties once again, and she was 47 in April.
The BHRT also cleared up the blisters on the tops of her feet, the neuropathy in her hands and feet, the fatigue, all sex related issues, chemo brain and many other side effects from all the chemo and rads. Her last treatments (rads), were the end of January of 2008, and she was not going to live this way any longer. She did what she felt she needed to do to live a normal life.
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WOW.. Estring was recommended Ninel..promising. Please let us know how it is working. I have my first check up with my onoclogist tomm ( 6 mos post chemo check up). I am definitely goin to ask on this for me. Ovaries are staying in me for now as i am way off balanced with hormone issues, hot flashes and some unusual joint pain that came after chemo.
Cindy... such great info you shared here and knowing that we all have a chance of reoccurence regardless if we had a bl mx or not etc. I did chemo as the preventative meausre and realized nothing is really a guarantee!!! I miss being on my bio-identical hormones and wish i could just safely do this again as i only did the customized progestorone cream. My oncoc. will defintley not let me do that!!'
HOPE tomm is an appt that will help me and not depress me any further!!!!Thanks for listening ladies!
Donna
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Nan.. I agree what your daughter is doin and would llove to find a anti aging dr like she has. I am not living a quality ridden life since chemo and trying to be patient.!!!Goin to see my onocol. tomm for the first time in 6 mos and tell you.. i am getting to the point where i may go back to bioidentical hormones and find a good dr to work with me!!!
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DonnaDio,
If you send me a pm, I will search for an antiaging specialist/clinic in your area. Lori's rad onc threw a fit when she told him she was doing BHRT, and then he said if you researched this then I "guess it is ok". To that she says...this is my body, and my life. She has not and will not tell her med onc. She says after 5 years when he declares her "cured", then she will tell him she has been on the BHRT. She says it is none of his business. If a doctor does not share her/my/our familes philosophy, then we find one who does.
Most conventional doctors know only one thing...pharmaceutical meds. That's not in Lori's vocabulary any more, unless for an antibiotic, and/or pain, and then only when absolutely needed.You read what I wrote as to all the after affects of chemo that plagued Lori, and the conventional doctors tell all the women that "this is the new normal". It's as if the women are just "throw aways" after being slashed, poisoned and burned!! That is total BS!! Women deserve so much more than that, and Lori was wiling to buck the conventional medical system to get her life back.
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Nan and DonnaDio, I really would so much like to go down this same path, but haven't and the main reason is financial. I take tamoxifen because it's completely covered by insurance, but do worry about the long term effects, and don't plan on staying on it for more than 2 years. Just finished 1 year last month. I also believe very strongly in quality of life and resent most articles I've read about improving sex life after cancer treatment and/or while on hormonal therapy. Most of them recommend what I call a lot of fluff, candles, massage, etc. While all these things are nice for creating a setting, they do nothing for enchancing the missing sensations and response!
Ideally, I would love to find a naturopathic doctor who treats breast cancer patients and would help me to replace and balance my hormones, but I just can't afford what they charge. The tests alone are just exorbitant in cost.
Luckily, I didn't have to go through chemo, but am now 9 months with no period, and the hot flashes and loss of sensations are the menopausal symptoms that I would really like to get rid of. I was perimenopausal before and feel that the tamoxifen might have speeded me into complete post menopause.
Ninel, at 35, you are way too young to be in menopause. You have to get some estrogen and maybe testosterone replacement. These are needed not only for sex life, but to prevent long term problems with bones, and cardiovascular system. If your Onc says the estring is safe, then what is stopping them from prescribing it for you? The only thing is that this will help the vaginal area to stay normal, but not the rest of your body.
Ebann, very interesting about the cialis. I'll have to ask my Gyn about that on the next visit.
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Nan... Can you send me a PM so i can respond as i do not know how to email by PM???!!!! I had been on bio identicals for about 8 years prior to my BC.. and yes rguiff...it can be costly. I was so much bettter on BHRT and then they told me that my BC had started about 7 years ago.. so of course i have that little fear was it because of the BHRT. I totally researched it all and i do too beleive in quality of life and think it is terrible how we go thru ALL that we do in this jounrey and then kind of left in this black hole.. well your on you own now and do not take any hormones!!!I have not slept in 6 mos without waking up every 3 hours and wake up early ( 4:30). Even went to a sleep specialist and is solution was to go to bed later..lol. Anyway.. i have my onoc. appt tomm and know this is goin to be a personal decision as i cannot live like this and won;t. The joint pain i have is sooo off the charts.. NEVER had joint pain until after chemo. SEX is impossible . Have started using Replens and is improving things a bit.
I wonder if there is such a thing as a hormone that does not go to thru the blood system. With all the money being raised for BC .. why is the aftermath so brutal and with no options????'This is not anything close to living a nornal life!!!
You know Nan.. Lori is not alone in her decision to do what she did. IT is BS!
Will let you know on my appt!'Thanks so much!!!'
Donna
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I am shocked!I met with my Onco Dept and the P.A, was not against me doin BHRT as it is my body and life. She is surprised that is worked so well in the past for just using progestorne Though she would prefer for me to wait IF i can for another 6 mos to see if some of my after chemo side affects minimizes. IF not, call her and let her know what i DO do. The Vagiferm will also be recommended if the Replense does not iimprove things in 30 days. I did not apply it on a daily basis for 30 days and that is what i will do first.
My joint pain could be a chemo induced arthritic syndrome that is rare but can occur for some patients. She put me on Naproxen and see if that improves.
I am now seriously goin to look into doin the BHRT but by and under a DR. Nan, if you PM me, so i can get a connection back to you, will email you back. I am in south suburb of chicago. Near NW Indiana and south of Chicago~!
Thanks Ninel for starting this thread.
Donna
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It's good to hear stories about doctors listening to patients and being supportive of patients making their own informed decisions. I think more doctors are like that now.
To PM someone, I think all you need to do is double-click on that person's screen name where it's in blue. Like at the top or to the left side of one of their posts. Their personal profile will come up and I *think* there should be a blue link on the right side of that screen that says something like: "Send this member a private message." Click on that link and you'll see the email field.
--CindyMN
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I'm in the same boat. Intercourse is excrutiating. I'm going to be 57 in 8 days and still want a sex life with my husband. No doctor will give me HRT. Both of my cancers (ovarian 7 years ago) were hormone negative so why no estrogen for me? I don't get it.
I'm BRCA1 and have no "girly" parts either. Like someone else said I've already lost so much. I see my onc the first week of January and will ask about estring. I've tried replens (once) and most of it dirbbled out so that was pretty yucky!
This is a great thread.
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Cindy...thanks on the PM info..llolol. talk about in the dark!!!!Will try this!!!
Barbara....i was told by my oncol yesterday to use the Replens for thirty days straight and then every three days. Yes it gets sticky and such, but i have had improvement. IF it is not enough, my DR will allow me with Vagiferm (sp)?
I am defintley goin to go back to the BHRT when i get so more healing.There is a great book that i recommend as it is now a handbook on this subject. The necessary hormone is prgoestorone and can really be a necessity if it gets too low in one;s system. The book is called What Dr's Do Not Tell You About Menopause.. by John Lee//.
Donna
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Hi sister, I hear you. I use Vagifem, as little as I can and still enjoy sex. Also, over the counter, is Replens, it is cheaper at Wallmart. It is a little messier to use, but has NO estrogen. So there are solutions. And with an active sex life, use it all.
Gentle hugs, Shirlann
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My OBGYN also prescribed estrace vaginal cream and it helps a bunch.
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To those of you using estrogen products in the vaginal area, does it help with the dryness only, or does it also help to improve the response and sensations?
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Rose, to answer very frankly, it helps with arousal and orgasm, especially on the days I use the Vagifem (twice a week).
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In a decade or so, if we are lucky, the breast oncology equation will change. They will see, especially for triple negative, that certain forms of estrogen, like 2 methoxyestradiol, are protective and need to be engaged in the fight against breast cancer, and that only the 4 estrogens need to be reduced in bc patients. Now, if pig pharma (no offence to pigs) could make a buck off this paradigm, it would happen tomorrow. Not all estrogen in abundance is detrimental as they have made us believe. We are supposed to have our natural hormones for goodness sake.
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I have now been on the Vagifem vaginal tablets for one month. First two weeks you use one each day, then twice a week after that. Also was given Estrace cream for the first two weeks only for external areas. I have had great results! I had totally normal responses and very little discomfort afterwards...before it was horrible pain, torn tissues ...a really negative experience all the way around.
Now I need to work on libido, which has not really improved. One writer mentioned using Cialis...any others trying this for libido?
Happy Holidays...btw am going to turn 50 on Friday the 1st. Unbelievable ~ Fantastic!
Kathy
Relay For Life/Team Lean on Me: http://main.acsevents.org/site/TR?pg=team&fr_id=24969&team_id=565119
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MsBliss....Totally agree, we do need our natural hormones. and am had been on bio'identical progestorone years back and stopped about a year prior to my BC dx and workes on some adrenal/cortisol issues and such. Ready to get info on doin natural hormones and looking into the right Dr to do this with me.We are triple negative, what does this have to do with it being dangerous if we did not have a hormone based cancer??!!!
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I've been reading the posts. So do most of your docs think Vagifem is safe after bc? Maybe I should ask my ob/gyn about it.
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Donna.. Not sure if anything is totally safe and i am considering goin back to bio-identical hormones as it is quality of life and tired of feeling weak, tired and blah. Vagifem is recommended bymy onocolgist and that is alot as they would be very conservative. More people here should know about this product as they are using it. I am still using Replens and giving it a 30 day run.
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Thanks, I think I'll give the Replens a try and see if it helps. If not, maybe I'll ask about the Vagifem.
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Hi Donna,
Both my med. onc. and my GYN supported the use of Vagifem. It has helped greatly.
Kathy
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Do any of them have any suggestions for hot flashes??? They are totally KILLING me.
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Yes DonnaDio, and in fact, there is growing suspicion that triple negative breast cancer is a type of cancer that may have it's roots in the imbalance or dramatic drop in our natural hormones. The imbalance is easily fixed with low doses of bhrt.
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I was told by my oncologist the following:
imagine your tumors have windows; your windows are closed to hormones. this means they are not driven by them to grow and they won't be influence by them to stop.
That is all I was told.
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Hello,
Here's a suggestion. I am also dealing with low hormone levels. My GYN actually prescribed bioidentical hormones to balance my hormone levels even after TN br ca. Everyone has to make their own decisions, but my GYN and apothacary recommend balancing hormones to strengthen your immune system to avoid a recurrance of cancer...you may want to look into this web site. Dr. Glaser was a breast surgeon. Makes you wonder why she retired from surgery and is prescribing bio-identical hormones, huh? Maybe cancer is caused from an imbalance of hormones in the first place??? Anyway, this is the route I have taken, but I wanted the quality of life. Hope this helps! Joanna
Dr. Rebecca Glaser retired from surgery, April of 2004, and is currently involved with bioidentical hormone replacement therapy and its impact on healthcare. She has evaluated and treated over two thousand breast cancer patients and over fifteen hundred patients with hormone imbalances. She continues to treat patients and lectures on ‘Bioidentical Hormone Balance and Health' and evidence based anti-aging therapies. She established the website, http://www.hormonebalance.org/default.asp as a nonprofit, educational website for patients and health care providers (March 2005).
Dr Glaser is working on several research projects (with ZRT laboratory) dealing with hormone levels in breast cancer patients, familial breast cancer, and the measurement and absorption of hormones.
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Dear bjcrump96,
Finally another GYN who is knowledgeable on BHRT!! Give her my fondest regards
Lori's rad onc had a fit when she told him that she was on BHRT, but her GYN was fully supportive, and even took the name and phone number of Lori's antiaging specialist so that she could refer patients to him. Lori did not tell her med onc what she was doing. As to the rad onc...she says this is her body and her life. She says she will tell her med onc when she is 5 years out from dx
Your statement...Maybe cancer is caused from an imbalance of hormones in the first place??? Oh Joanna, this is exactly what Lori and I and many many other women/people know to be true!! Simple statement? Probably, and yet, our hormones (all hormones), are there for a purpose, and due to other factors, such as environmental and pharmaceutical drugs being introduced in to our bodies over the years, the hormones are then thrown out of balance.
Of course if a woman took the synthetic HRT or birth control you just know that caused the hormones to become imbalanced. Remember that commercial for some margarine many years ago? The one where they said..."It's not nice to fool Mother Nature?" Well, put pregnant mares urine or another synthetic hormone in your body and you are screwing with "Mother Nature". Stop ovulation with synthetic birth control and some women will pay the price. It has come back to bite us in the rear!!! And...the pharmaceutical companies....they knew this from the get-go, and no one will ever convince me otherwise. Did they care? Nope, it has been a profitable money making venture, and now women are paying the price and over 45,000 a year with their lives.
Here is a link from the TNBC site, and while I am an advocate for a woman's choice on any matter regarding her own body, I am posting this simply for the info on birth control.
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Ms Bliss...Your comment on the triple negative cancer and maybe cancer because of the low amount of natural hormones has to be the MOST SENSICAL thing i have heard since my DIAGNOIS~~~!!Thank you!!!For some reason, this has been the light bulb moment i needed to hear!!!!
I was on BHRT for a few years and NEVER felt better..the :YEAR before my cancer DX, i had gotton OFF my BHRT (mainly progestorone) and got off because things were changing and i had no knowledgeable DR to help me. That year, i had at least a saliva test to see what at least was changing and it was coristol, high at night,DHEA issues and the exhaustion and stress my body was goin thru was probably a high chance of my cancer ignititng. I NEVER realized that triple negative could be a result of low hormones...THAT is ME and has been for several years.. get off of BHRT and here i am.
I HAVE been so fear based with the DRs telling me never, ever do hormones etc and the lack of it like NAN said probably has to do with getting breast cancer.. i feel it as i have NO quality of strength in my body, sleep is terrible and has been for 6MOS and i am not where i should be. THANK YOU!!!! This info does it for me!
I have a great new Natural DR who has me being tested and feel very confident he is goin to have me balanced and working close to a solution and AM doin it.. BHRT and whatever!!!
Sorry i just needed to hear that!!!!I Finally get it!!!
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