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Old 01-01-2005, 05:44 AM   #1
Lyn
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We have been discussing in another post the effects of estrogen loss and intamacy in menopause. I have been looking for alternatives because I cannot take Hormone replacements, my cancer feeds on estrogen. I take Aromasin which destroys the estrogen, I know it works because my Pap Smear came back as abnormal and it was due to no estrogen, I had to use an estrogen cream for a week and have the smear done again, it came back normal then, so I am in a catch 22 but not quite convinced that creams are safe, so do we stumble on in pain and discomfort or enjoy and hope for the best. Found this article which is puzzling right to the end. There are a few of us ladies who would like some input into personal experiences with lotions and potions designed to help this problem.

Love & Hugs Lyn

Guardian Angel Natural Estrogen Cream

A Non-prescription Pure Natural Estrogen (Estriol USP) is now available.
(Not to be confused with phyto-estrogens)

Active Ingredient: 50 mg Micronized Natural Estriol USP.

Inert Ingredients: Purified water, Lanol (vegetable origin), Sepigel, Essential Omega Oils, Liposome Delivery System, Germaben (Fragrance Free).

Directions: Apply cream to soft tissue arreas. Use 1 - 4 mgs. Start with 1/4 tsp. 3 X per week or as recommended by your health care professional.
1/4 teaspoon contains 1 mg. micronized natiral estriol USP.

For best results, use in conjunction with a progesterone cream (on the same days)*

Estriol is not phyto-estrogens
Natural Estriol USP is made the same way natural progesterone USP is made. Sterol analogues found in many varieties of plants (Mexican Wild Yam) are combined with specific bacteria and the resulting hormone is bio-identical in chemical structure to the hormone produced by the human body.
Premarin®, conjugated equine estrogen, has been the most commonly prescribed estrogen supplement in the United States. Premarin®, Prempro®, Premphase® and Prempac® are synthesized from pregnant mare's urine.

Excerpts from "What Your Doctor May Not Tell You About Menopause" By Dr. John R. Lee, M.D.
If a three-month trial of progesterone plus proper diet and supplements of magnesium and B6 do not relieve hot flashes or vaginal dryness, then low-dose natural estrogen may be helpful. All the available evidence we have so far indicates that estriol is the safest estrogen to use to control menopausal symptoms, and that it may even be protective against breast cancer. If you need to supplement some estrogen, you can use a natural estrogen in a cream. We can't emphasize strongly enough that no woman, with or without a uterus or ovaries, should ever take estrogen alone. It should always be combined with natural progesterone. There are no exceptions to this.

Excerpts from "Estriol, the Forgotten Estrogen?" The Journal of the American Medical Association.
In our country it has been labeled as a weak or ineffective estrogen and difficult if not impossible to obtain. Actually it is not weak if given in adequate doses. A dose of 2 to 4 mg is the equivalent of .6 to 1.25 mg of conjugated estrogen and is just as effective. It has been available in Europe for many years. Importantly, estriol does not lose its unique identity, as does estradiol. It remains estriol. Lemon, reporting on chemically induced rat mammary carcinoma, demonstrated a notable inhibition of mammary carcinogens with estriol therapy compared with therapy using estrone and estradiol. According to an unpublished study by Henry M. Lemon, John F. Foley, and M. Anne Kessinger, 2.5 to 5 mg of estriol, equivalent to a little more than .65 and 1.25 mg of conjugated estrogens were used, with the informed consent of patients, in post-menopausal women with breast carcinoma and metastases. The preliminary investigation was initiated as a trial of the safety and estrogenicity of the hormone in post-menopausal women with breast cancer and not primarily to test it's activity as an alternative therapeutic estrogen for breast cancer. Thirty-seven percent receiving this small dosage had remission or arrest of matastatic lesions.



GA-001Regular price: $49.99Sale price: $43.95, 3/$119.85
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Old 01-01-2005, 02:15 PM   #2
AlaskaAngel
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I think you are ER-, right? I am ER+. I don't have a lot to add at the moment to the discussion other than the post I did yesterday in the original discussion.

I do want to say that I specifically asked my onc if I could use estriol, and he directed the discussion back to the use of the E-string with its limited local impact of estrogen.

I would like to hear what our European counterparts have to say about the use of estriol since it is pretty widely available there.

I found the comments in the article you posted interesting, especially the stress that was put on combining progesterone use with estrogen use of any kind. Again, that seems very logical to me, as I feel bc is an endocrine disease, and it makes much more sense to try to figure out how to provide the best possible balance of hormones than it does to wipe them out along with the immune system...

A.A.
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Old 01-01-2005, 05:07 PM   #3
KathySC
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Lyn..too bad we don't know if those 37% women in the study were HER2. (The % is right.) I have posted before that I am ER/PR negative and have taken estriol cream from a compouding pharmacy for a year. I can only say that my hot flashes vanished, I sleep soundly and my sex life is good thanks to the cream. I wouldn't want to go back to my life as it was before. The only thing it hasn't helped with is my chemo brain.

My internist has done this for me once the onc told me it was okay, I had complained about not being able to have sex anymore. The vanishing hot flashes and great sleeping were a surprise to everyone. I had a hormone profile done by ZRT labs 3 months after taking it and will have one done every year. This I do on my own.

If I were ER/PR positive... I would be confused too. I have read articles stating that some estrogen may be beneficial when taking those estrogen inhibitors. They were posted a few months ago. Anyone have those saved? Good luck with all of this.
Kathy
http://www.thecompounder.com/diseasebreastestrogen.html
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Old 01-01-2005, 07:53 PM   #4
Sandy H.
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I am ER/PR neg. I use the Phyto prolief natural balancing cream from
Arbonne. I put it on the soft tissue night and morning. It is all measured with one squeeze so I am not getting too much or too little. I seldom have hot flashes, sleep well, and my skin is like silk. I don't have the dryness and itching now. Well worth it but I am hormonal negative and have had a hyst done so puts me in a different catagory. Hugs, Sandy
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Old 01-01-2005, 09:53 PM   #5
AlaskaAngel
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Consider this study:

Testosterone added to HRT may protect against breast cancer
Karla Gale
Reuters Health
Posting Date: September 14, 2004
Last Updated: 2004-09-14 16:20:02 -0400 (Reuters Health)

NEW YORK (Reuters Health) - When added to conventional hormone replacement therapy (HRT), testosterone may reduce the risk of breast cancer in postmenopausal women, results of a small, observational study suggest.

"I hope that this paper stimulates interest in the question of whether a more physiological HRT regimen might have better effects," senior author Dr. Carolyn A. Bondy told Reuters Health. But, she emphasized, "I do not recommend any changes in HRT treatment until we're convinced it's safe and efficacious."

The Women's Health Initiative and the "Million Women" Study, large clinical trials of combined estrogen and progestin HRT, were terminated early when they showed an increased risk of breast cancer (see Reuters Health reports July 9, 2002 and August 7, 2003). However, these studies did not evaluate the potential of combined treatment that included testosterone.

Dr. Bondy, with the National Institutes of Health in Bethesda, Maryland, and colleagues report the results of a retrospective, observational study of women treated with testosterone and estrogen, with or without progestin, for a mean of 5.8 years. Their findings are published in the September/October issue of Menopause.

Included in the study were 508 postmenopausal women who received testosterone implants containing 50 mg to 150 mg testosterone every 5 months, along with oral conjugated estrogens or estradiol implants (n = 161). Women with a uterus also received medroxyprogesterone with or without norethisterone (n = 347).

During follow-up of 0.7 to 11.4 years, there were seven cases of invasive breast cancer (incidence per 100,000 woman years = 238). One case occurred in the group using estrogen and testosterone only (incidence = 115), while six cases and the only death occurred in the group that was also using progestins (incidence = 293).

In comparison, the incidence of breast cancer per 100,000 woman-years in the estrogen and progestin arm of the Women's Health Initiative was 380. The corresponding incidence was 521 among those who used estrogen and progestin in the Million Woman study. However, the incidence among never-users in the Million Woman study was 283.

Prior to menopause, the ovary produces both androgen and estrogen, co-author Dr. Robert A. Jones, at Memorial Medical Center in North Adelaide, South Australia, explained in an interview with Reuters Health. Conventional HRT "stimulates the mammary epithelium directly, and tends to interfere with the protective effect of testosterone," thus increasing the risk of breast cancer.

"If testosterone had been used by subjects in the Women's Health Initiative study, it may have stopped the rise in breast cancer risk," he added. "It's possible the trial would not have needed to be stopped early."

His group's findings also confirm the suspected increased risk when oral progestin is added to estrogen HRT in women who still have a uterus. That issue could possibly be circumvented by administering the progestin via an intrauterine device rather than orally, Dr. Jones said. After all, he commented, "Why give progestin to the breast when all you want to do is give it to the uterus?"

He noted that testosterone has the added bonus of improving a woman's mood, reducing breast soreness, increasing bone density, as well as restoring energy, stamina, and sex drive.

These findings do not prove that testosterone is protective, Dr. Jones added. For that, randomized, controlled trials will be needed.

Dr. Bondy agreed. "I would love to see a clinical trial, especially for younger women who've had their ovaries surgically removed or who have ovarian failure for some other reason, who have to take HRT. Otherwise, they get terrible osteoporosis and their sexual characteristics disappear at a young age."

Until such studies have been completed, she reiterated, "I do not want people to jump on the bandwagon and do something that is unproven."

Menopause 2004;11:531-535.
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Old 01-02-2005, 09:32 PM   #6
Lolly
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Ladies, I'm ER/PR- and this has been an issue I've not addressed yet, although I've had discussions with my PCP and Onc I've been reluctant to start. My PCP's recommendation is testosterone cream made by a local compounding pharmacy and applied to the soft tissues. Thanks for the articles, I'll continue to mull it over.

Love, Lolly
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Old 01-02-2005, 10:03 PM   #7
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I just went back and read the previous discussion, so now I'm up to speed! I actually did go through menopause before bc, so had time to "adjust" before chemo, but never lost my sex drive until after tx...so even with natural menopause I obviously still had hormone production going on which chemo has shut down. I intend to take this up with my PCP again after I finish the vaccine trial, as we are also tracking my bone density and he said it would also help maintain the bones.

I agree about the lubricants, they're more sticky than not, but we like coconut oil, get Hane's or another all natural type. It's solid in the container but melts immediately on contact with body heat.

My PCP has been great about encouraging me to experiement as long as my onc agrees it's safe, he feels it's an important issue but doesn't have much data to go on. We've talked about oral testostorone or the cream I mentiioned in my other post. I feel the cream is safer given the unknowns about oral dosages for us.

Love, Lolly
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Old 01-03-2005, 04:48 PM   #8
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Responding to Sandy H's post from the original discussion string...

I agree that those of us who end up experiencing the physiologic results from the loss of estrogen and drying effects need to be open-minded about any suggestions. However...

We seem to be affected somewhat differently by how close we are at the time of chemopause to being menopausal. For some who are reading this and who are quite young and not naturally close to menopause to begin with, their experience may end up being much milder, as they may not lose as much libido or go permanently dry.

From my perspective as a 53-year-old, I can mechanically get through this with the help of unnatural lubrication for my partner's sake, because I do love the dodo. But facing the loss to ME on a daily basis is pretty crushing and toxic.

I am 2 years out from treatment. I do not feel quite as "beat up" now from treatment as I was in the first year and a half after treatment. I have lost a lot of the weight I gained from the steroids that are part of treatment. I have my hair back and I like how it looks. All of that makes a difference in how I should feel in terms of attractiveness. But there has been no return of any joy of feeling desirable as a woman. I never expected to feel this way when I went into treatment.

And all of this is even more painful just because the medical people I trusted enough to go through treatment have treated it as if it does not exist. Having them recommend lubricants and then usher me out the door when I try to bring up the subject is cruel. Not once has anyone even suggested counseling, or provided any written materials on the subject.

I do not want to offend anyone, especially not anyone offering hopeful suggestions. I appreciate any suggestions for dealing with this problem. I just want to explain more fully why being adequately lubricated is a life sentence in itself.

AlaskaAngel
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Old 01-03-2005, 11:04 PM   #9
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Hi AlaskaAngel:

I have an appointment to see a sex therapist that is attached to the oncology team in early February. I am both fearless and blunt. I suspect that I can ask the tough questions that others might find difficulty voicing. I will post anything that I think is relevant so that we can all take advantage of it.

I also raised this topic in my young women's breast support group which is attached to the cancer clinic. I don't go often, maybe once every 3 months or so.

The topic was pounced on there as well. There appear to be a lot of women out there who have been through chemo and have serious libedo problems and/or vaginitus.

Depending on the answers I get, I might also raise the question at the local university campus and let it be known that this might be a potential research topic for someone looking for a thesis topic.

Someone suggested earlier that it might help using a vibrator & lubricant to "stretch" the tissues that had been dried by chemo. I know that that idea wouldn't work for me because currently I am not capable of arousal. I'm also not into pretending. I expect some action for myself as well.

I would again encourage those of you who are interested in pursuing a solution to this problem to seek the advice of proffessionals who are available to you and post their suggestions here. That way we can pool our resources and our various experts' advice. That way we collectively get more options.

Take care,
Merridith
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Old 01-04-2005, 04:09 AM   #10
Lyn
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HI Lolly, I love your new words for it "soft tissue" it sounds so delicate. Is there any problem of bacteria with products like coconut oil.? Spoke to a lady pharmacist today and she said I definately didn't want any vitamin supplements that may stimulate oestrogen so she has recommended a pre filled applicator which provides long lasting moisturiser, "Replens", it is for dryness, itching, irritation and discomfort, she suggested just to treat the individual symptoms, that is going to be a mission, I think the cruise can take care of the rest of my woes.

Love & Hugs Lyn
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Old 01-04-2005, 04:21 AM   #11
Lyn
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Hi there, I always assumed Menopause was just hot flushes and being moody, not bordering on being criminally insane , and a dried up prune to boot, after all it is MEN -O- SHALL WE PAUSE FOR A WHILE WHILE WE CATCH UP AND GET IN THE MOOD. I know now why all the ladies in the ancient movies carried a fan as an accessory. I bought a cream today recommended by a young lady pharmacist, she said I shouldn't risk taking vitamins replacements as they may stimulate oestrogen, it is calle Replens, long lasting (Lolly's word here, Soft Tissue) moisturiser, most importanly oestrogen free for symptoms of soft tissue dryness, itching, irritation and discomfort, now I have to get in the mood to want to use it, use by date is 2007, ha ha I have plenty of time, but we all need to know what product we find the best.

Love & Hugs Lyn
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Old 01-04-2005, 10:23 AM   #12
AlaskaAngel
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I just want to add that the latest Y-ME booklet has an article about this and the estimate there is 50% for the number of women who are dealing with sexual dysfunction after treatment. That is a pretty big number of human beings from a growing number of people who have had bc, folks....

A.A.
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Old 01-04-2005, 10:51 AM   #13
Lolly
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Alaska, 50% is huge, and it's up to us to become the "not-so-silent almost majority"...I WILL be taking this issue up with my PCP after I finish the vaccine trial, should hear this week whether I'm in. He's been very open and helpful.
Your response to Sandy H really made me think, as it's true we will never be able to get back our pre-chemo selves. I have begun to accept that, after over 5 years, and am just beginning to rebuild an inner sense of beauty and attractiveness. People tell me I look great, my husband tells me daily he finds me beautiful, but it's how I feel inside that will make the difference. Then, the usefulness of creams, testosterone, etc. will be more fully appreciated and acceptable.
You have heard this before, I'm sure, it will take time to heal from the trauma of dx and tx, but it will happen...however, we are changed from our experience and it isn't talked about as we enter the process. It should be, and that is a goal we can reach for, to help bring this issue out into the open.
I appreciate the honest of this board.

Love, Lolly
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Old 01-04-2005, 11:45 AM   #14
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I have used Replens. It is a great artificial moisturizer and I have found it best to insert it just before bedtime. HOWEVER it is not useful for libedo or intercourse. It was suggested by my oncologist.
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Old 01-04-2005, 06:35 PM   #15
Lyn
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Hi there, what a good original excuse, we don't have to say not tonight I have a headache, we can say "not tonight dear my cream isn't working." I used the cream last night as a preliminary to work up to the event which will hopefully take place in the near future, and I know now what I don't miss about being normal, sanitary products for the monthy misery. I do have ones on hand for when my bladder decides it isn't going to wait for me now I am on fluid tablets. Oh the joys of being alive, we certainly no what it is like.

Love & Hugs Lyn
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Old 01-04-2005, 07:01 PM   #16
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It has been well said by several on this board. BC is a life changing experience in more ways then one. We can choose to look at how full of glass is or how empty it is. As time goes on we will adjust and appreciate just being alive. Our prioities will change, we will appreciate the simple things in life, we will not take anything for granted, and most of all our faith will become stronger as we move on in this journey. We will be a better person and learn to enjoy each precious moment and find peace within. For some on this board this will seem impossible if you are just starting on this journey. As time moves on you will gradually understand what I am saying. I wish you all well who posted on this topic. Big hugs, and smiles, Sandy
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Old 01-04-2005, 07:03 PM   #17
Sandy H.
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I used Replens after my hyst and loved it then I couldn't find it. Where do you folks get it? I have looked every where. Hugs, Sandy
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Old 01-05-2005, 01:45 AM   #18
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Hi there, I got mine from a pharmacy, a discount one at that, no prescription needed. I was to dumb to ask if this was to be a short term or life time at intervals.

Love & Hugs Lyn
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Old 01-05-2005, 07:33 AM   #19
Sandy H.
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Thanks Lyn, I will keep looking but have checked a few of them and no luck. As for how long to use everyone, is different and since I have not be able to get Replens have used nothing for a couple of years now but at times I feel I could use something once in a while for a moisturizer. Thanks for repsonding. Good luck to you, hugs, Sandy
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Old 01-05-2005, 09:29 AM   #20
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RE: Satisfaction

Thanks for the philosophy lessen, Sandy; I'll keep that in mind. We all seek refuge, wherever we can find.

A.A.
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