Compounded dhea vaginal ovules
My pcp prescribed vagifem to help with the pain and dryness during sex since being thrown into menopause. It was quite painful for me. I got cramping almost immediately. So, I went to a bioidentical specialist at the Cleveland Clinic and she prescribed DHEA ovules for vaginal insertion. It is a compounded bioidentical drug. Does anyone know of the bad effects of this? It is 100% helping already and no cramping.She said there is minimal absorption, althought, I've read studies that the vagifem and other estrogen suppositories are absorbed at a higher rate than first expected. She is not monitoring blood levels... just gave it to me and said it wasn't a hormone-which I believe it is of the adrenal glands. Thanks.
Comments
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Hi,
My doc said they are soon going to come out with a patent drug formulation for intravaginal DHEA. There is almost no absorption beyong the vagina.
I didn't know until this year that the vagina/uterus/labia actually atrophies and gets gray and shriveled as your hormones go away. There is a gynecology video going around about that.
I use estriol vaginal cream from a compound pharmacist but I may switch to some kind of tablet/ovule like you.
What an interesting doc you have!
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I'm so glad you bring up this topic. I was told by my Onc I couldn't use Estrace, even though I am triple negative. I busted out crying, as I have suffered over the years due to lack of estrogen replacement after my total hysterectomy at age 35. I'm sure you ladies know how demoralizing this is to one's feelings...really hard stuff for me. Anyway...I want to resume the Estrace, and he grudgingly agreed to once a week dosing (or once every two weeks...now I have forgotten.) Anyway, I would appreciate all the info possible regarding safe options.
Thanks again for posting,
traci
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Traci,
I know this may sound like a stupid question but can you get another onc? Or get a script from your gynecologist? You are so young and you are triple negative!
I wouldn't take no for an answer, honey, even if I had to get the Estrace vaginal cream from an unorthodox source.
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Lucy,
Oh, I'm sorry, I didn't put the part where I did "negotiate" with my Onc to use it very sparingly, and my Gyn did fill the script for me. My Onc has scared me though, and I haven't used it yet. He (Onc) inferred that I would increase my risk for a hormone positive tumor. Do anyone know anything about this?
and thank you Lucy for your concern...I have to remember that it's o.k. for me to have some quality of life, and to not fear cancer all the time.
traci
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Hi ladies!
I hope everyone is enjoying this beautiful day. I'm in Charleston, SC and it is cool this a.m.:))
This topic is first and formost the greatest issue that I've dealt with since I began chemo ( don't recall if A/C or Taxol) began. My Onc. is very conservative and she is adimately ( sorry, I am THE worse speller of all:(__oposees the use of any vaginal estrogen cream. My Gyn however, does not agree and said a small amount would not cause any tumor reccurance whatsoever.
Since my vaginal canal has atrophied to the size of a straw and dry as a bone, I was ( am) desperate for help in this area and as mentioned in this thread, one must have some quality of life to enjoy with our dh's instead of worry about treatment, constant blood work, forever Onc appt's, etc.
I haven't begun taking my Rx of Tamoxifen. Am told to wait until I am fully recovered from my DIEP flap reconstruction ( 5 weeks out now). I've an appt. with my Onc Monday. Does anyone have suggestions for questions regarding the full blown menopause I will have once start Tamoxifen? Thanks so much, BC Sisters;) Btw___is there another acronym for kind referral for us? I don't care much for BC...
OK, thanks for your attention to my ramblings,
Blessings,
Imblessed
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Imblessed,
You said it exactly like it is. My Gyn's didn't even bother to tell me about what would happen without estrogen. The day after my hysterectomy was when all of the negative studies related to HRT came out...(2001.) I was told I would not be taking any estrogen replacement. Then I went on my way...not knowing the repercussions. Now I am torn..do I use the estrace? what's the risk? I was triple negative and didn't have a hormone receptor on my tumor. But my Onc said he didn't want me to develop more tumors and that it could come back hormone positive. What to do? I just don't know what to do
Diagnosis: 10/2/2009, IDC, 4cm, Stage IIa, Grade 3, 0/7 nodes, ER-/PR-, HER2- -
Bump ( will one of you amazing sisters help with squid's querry?) Thanks!!!
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I am not here for me, but for my Mother, but as a Fibroid sufferer that is Perimeno and very High Risk for BC [I just wait my turn, girls], I am NOT permitted to take any substance containing Estradiol. I once went behind my PCP's back and took Vagifem and my Fibroid grew under the influence of estradiol.
I was then given Estriol cream [ we women make Estriol in pregnancy and often it is low in women with BC - consult Dr Google] ; and Estriol has NO effects on me other than locally. It does not affect my Fibroid, and Fibroids are extremely sensitive to Estradiol/Estrogen. Please do not take anything with Estradiol, and learn about the different estrogens. I'm sorry I can't help with the DHEA.
We high risk women watch everything as closely as you do. Please stay safe as you can.
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Squidwitch42-My onc and PCP both agree that vaginal estrogen does not get absorbed into the body. I myself am not so sure about that, but for me it's a quality of life issue. I am going to be living with the possibility of BC returning whether I use the vaginal estrogen or not, and there would be no way to tell what the cause was if it did return. I have also been told by my PCP that the current Vagifem that is 25ug is now being made as 10ug. I have no idea what a ug is, but 10 is less than 25. There is so much is our lives that we have no control over, why not have control over one area that can be made more comfortable if you have your Dr.'s okay?
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You gals really need to read some of the great books out there on hormones. I just met a wonderful doctor, Selma Rashid who wrote a new book called Hormone Explained. Dr. John Lee's Books are the bible, Dr. Christaine Northrup has written a couple, etc. etc. Taking tamox or arimidex is not always the answer. Women need hormones to be women. Blocking them only causes other problems. And more than likely, many of you have poorly functioning thryoids. It is all so interlated. That is why I no longer go to any onc. I go to doctors who understand how to balance all my body systems, not just throw the baby out with the bathwater. Check out the iodine, and thyroid threads here too. This is too important an issue to not take seriously. I know that my low thyroid function, and my exposure to chlorine was much more of a contributor to my bc than my estrogen levels. Estrogen is a catalyst. Toxins are the cause.
another good site:
www.preventcancer.org Dr. Epstein has researched extensively on all of this.
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Thank you ladies!
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wenweb, I don't understand why you would take estradiol [which is what is in Vagifem] when you can take Estriol and get the same excellent results.
@ Vivre, you make some very good points.
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BrokenHeart- At the time I was looking into getting Estriol, it was being banned from compounding pharmacies and no one would make it for me. I did buy some over the internet, but it was not as effective for me. (plus a messy deal when it melted) Probably because it was not controlled by the FDA, so who knew if it was accurate in strength. Since then, I do not know what the status is for being able to obtain estriol. If you or anyone does, I am open to checking it out as I know it is a safer option. Thanks
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wenweb-
Estriol is available from compounding pharmacies. I use vaginal estriol twice a week. It works. There are some others on the natural girls thread who do , as well. My onc even suggested it to me, although my bio hormone doc is the one who prescribed it.
My followup 24 Hr hormone tests have proven that it has not increased my estradiol.
Beth
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Beth,
Who follows your hormone tests (may I ask?)
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squidwitch
I work with a nurse practioner who specializes in bioidentical hormones. SHe also has the services of phenomenal compound pharmacist. I will also usually run the results by my functional medicine doc who is an expert with bioidentical hormones, but whom I happen to use for other issues.
I have shared my results with my onc, who wanted me on anti-estrogen drugs, and she is amazed at my results.
I use the 24 Hr Urine hormone test from Meridain Valley. I think getting all of the metabolite information in addition to hormone levels is critical. I do also test by saliva - for cortisol levels and have continued to also test my hormone levels this way, although I could probably drop that.
I am a very active particpant in all of the testing and probably follow my results closer than any of my medical team, since I figure that I have the greatest vested interest.
Beth
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hlth4513 Thanks for the info. I haven't heard anything about estriol lately and just assumed that it was still banned from being made in compounding pharmacies.
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Beth,
yes, thanks for you info.
I have another question...if you don't mind. Is this out of pocket, in regards to your 24 hour urine and cortisol saliva tests. The cortisol interests me as well. I've always said my cortisol levels are so high between 4-7 AM that I am feel ill if I am awake. Blech. What is the relationship between cortisol and estriol? Do you mind explaining the difference between estrogen, estradiol, and estriol. Are these the same, but "broken down" from estrogen? I'm feeling lazy about looking it up, because I always lose what I have typed when I go off page.
Not sure what form of estrogen is in my Estrace. I will read the back. Once I find my old lady glasses....what's with the small print anyways?
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Squidwitch -
This is probably not as detailed as you are looking for - but as an overview-
A lot of the testing is out of pocket - my insurance does give me a partial reimbursement on the saliva testing for cortisol. The Comprehensive 24 Hr Urine test runs about $200. It really validated my protocol and I figure it is worth it to do it every 6 months. I was apalled that my onc was suggesting an anti-estrogenic medicine with no intention of ever measuring my estrogen levels either before or after starting ARimidex or Tamoxifen.
I think it is important to balance all hormones.Hormones are complicated. I'm not an expert.
Cortisol is important for all of us as imbalanced levels indicate stress which causes dis-ease - including cancer. It can also cause weight gain, which can produce more fat and therefore more estrogen.
Briefly - There are three estrogens - estriol, estrone and estradiol. Estriol is considered protective. Estrone and estradiol do play a role in your body, but they should be in balance and at a much lower proportion than estriol. The ratio of different estrogen metabolites matters. You want more 2OH than 16OH; you want less 4OH and more 2-methoxyestradiol.
The ratio between the three estrogens s considered important. I've read that a "balanced" estrogen quotient(EQ ) is 4.0 - which means you have 80% estriol/ 10% estrone + 10% estradiol. I have also read that anything over 1.0 helps reduce risk for breast cancer.
Beth
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Beth,
Excellent explanation, thank you very much for taking the time to educate. I'll keep absorbing as I go along
traci
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wenweb, I use the tube cream on this link, and prescribed by my PCP. I am not allowed estradiol of any type, including Vagifem, and am too scared after it grew my fibroid.
http://www.2womenshealth.com/HRT-Atrophic-Vaginitis-Ovestin-Cream-Pessaries.htm
Beth - that is really excellent data. It's so hard to explain some of this stuff - sort of like all estrogens are not equal.
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Beth, I too do the 24 hr estrogen test every 6 months. I have been using supplements to lower my estrogen production and also to help change my estrogen metabolites. I also had a genetic assay test done by Dr Joe Veltmann. This test determines what SNP's (these are changes on a gene that could/can/do cause disease) I have on crucial genes. With Dr. Joe's help, I am taking supplements to allow my body to bypass the SNP's and let the genes function the way they are supposed to.
So far, the supplements are causing me hot flashes, which I have not had for 8 years so they are suppressing the estrogen. The additional supplements work to help get the estrogen to metabolize into more 2OH and 2-methoxyestradiol. I will take another test in 6-8 months or so.
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BrokenHeart, Many thanks for the link.
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Barbara-
I did the SNPs test too - the Estrogenomic Profile by Genova - I swear it was the best money I have spent. It really opened my eyes as to why I got breast cancer and why my Oncotype was higher than I expected for a stage one, node negative. It was very exciting to me that even though we can have genetic SNPs or weaknesses, that we can address these through supplements.
I went and looked up your doc - he seems to be similar to my functional medicine doc - I really think individualized medicine is the future. I'm curious if he also does any type of individualized nutrition in terms of metabolic typing or Genotype diet, etc for what he suggests for your diet.
Beth
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I have another question. I was surprised when my Onc initially said no Estrogen. I am triple negative, and he implied I could have another cancer come back hormone positive. What would be the chances of this- the same as the general population? Wouldn't I still tend toward triple negative tumors?
Traci
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Traci, I think it's a crap shoot. I read on another thread that a women was having adjunctive chemo and it didn't respond to herceptin (she was HER+) so they biopsied the tumor again and it wa HER-. Beth, yes he has recommended a high protein diet for me along with lots of colorful veggies. I decided on my own to go gluten free and no sugar or dairy. I am also taking a supplement powder he developed that has tons of vitamins and stuff I need in it. I take a scoop of whey protein powder along with the supplement into juice. Tastes terrible. I need to try some berries or grapes added to it.
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Traci,
How did they biopsy her tumor again? Where was it? (in a jar or slide)? I've heard of slides being reviewed at another hospital and then treatment recommendations change because the second hospital says it's a different kind of cancer. One woman's slide even came back benign at the second slide reading so she had a third reading, also benign.
What troubles me is they say to send your slides to a lab in a different state for the second reading because no pathologist wan'ts to contradict a peer.
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Barbara -
I am curious what testing or info he used to determine your diet.
Thanks!
Beth
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For now he has me on the blood type diet until the results of my allergies blood test are back. This is because I had had diarrhea since March (pre-BC) and we need to know what I am allergic to in order to know what the diet really needs to be. I sort of went further than the blood type diet in that I limit meat to hormone free beef once/week and hormone free chicken once/week. Fish or veggies only the rest of the time along with mostly raw organic veggies, quinoa, millet, lentils and wild rice.And of course, organic fruit. And as I said above, no dairy, no wheat/gluten, no sugar (except I put 1 tsp organic honey in my coffee in the AM).
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