Bioidentical hormones..is anyone taking after breast cancer?
Comments
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Deanna: Thanks for the compliment, and I'm with you on the hormone replacement. As much as I fought and hated going off of it, I would have to think twice, particularly at my age of 71, of going back on it and possibly fueling the bc growth again. My hot flashes are an inconvenience, but I can live with them, and the little mood swings I was having seem to have leveled off, so no worries there.
The tamoxifen I'm taking is supposed to protect my bones according to the MO, and my heart passed with flying colors in recent tests, so for now I'm doing ok.
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Been a while, and a bit of a journey - I'm now on Vivelle Dot at .1, and I'm my *self* again. Not wholly, as there are some lingering physical effects, but - omg, so much better.
Distinct improvements in energy, mood, creativity, and most of the major physical symptoms (dry eyes, dry and irritated genitals - to the point where daily activities were uncomfortable, dry mouth, muscle aches and joint pains, etc). The hot flashes and night sweats have pretty much disappeared as well, though they were honestly less bothersome.
I'm resisting adding an SNRI at this point, as I feel I'm doing well without it, and tend to be hypersensitive to medications.
Estrogen alone may or may not fuel breast cancer - the jury is still out on that; progesterone definitely does - and I will need to add that at some point as I have an intact uterus; and, for me, quality of life trumps all. Existing is not enough - I want to enjoy my life while I'm here, or there's really no point.
Without estrogen in my system, there really was no point to living. I felt like death warmed over, physically and emotionally. It wasn't something I could 'get through' or 'tough out' - I tried that and ended up suicidal; it wasn't a minor drop in my QoL - it was a systemic failure that affected every aspect of my life.
For me, the risk is worth it.
I'm using transdermal estrogen - the 'safest' method, and I'll be using a high estrogen/low progesterone HRT regime; I've no intention of being stupid about it and want to minimize my risks BUT... quality of life. For me, it's utterly worth it.
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dropjohn: I understand where you're coming from. I gave up all my BHRT when I was dx in December 2011. I'm going to wait a year and if still NED, then I will consider going back on at least some estrogen via the patch or cream. I have no uterus. I'm following a good anti cancer diet and taking lots of supplements, and other than some mild hot flashes, I'm doing ok with the exception of my libido which is nil right now.
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Dropjohn, what is an SNRI, and just curious, who is prescribing the hormones for you, your GYN?
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SNRI's are a class of anti depressants - serotonin-norepinephrine reuptake inhibitors. I still haven't started.
I'm going to an endocrinologist for the hormones.
I hasten to add, my body is still pretty damaged from chemotherapy - the worst symptoms have diminished but not disappeared. It's either not enough estrogen (which is possible but I doubt I could get more prescribed) or there's other underlying damage.
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Kaara,
Were it just hot flashes and night sweats, I would have been able to cope. Chemotherapy wiped out all ovarian function for me, which meant that the effects were systemic and global. These effects included: dry mouth to the point where my tongue felt burnt (dry mouth has other long term effects as well, such as tooth decay); tender gums that bled easily; dry eyes ( which lead to stys and broken capilleries in my eyes); dry vaginal and vulval tissues - my crotch hurt constantly, urination was uncomfortable; lack of sexual response and lubrication; joint and muscle pain that were affecting my daily life; overwhleming fatigue; and deepening inescapable clinical depression.
A little warning would have been nice.
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dropjohn: I'm so sorry to hear that...I was blessed that I didn't have to do chemo (low oncotype score) and my age (71) gave me the option of passing on rads, which I did, even though it was recommended by my BS. After hearing all the horror stories about what rads and chemo do to people, if this dreaded thing ever comes back on me, I am just going to have an MX and be done with it! My neighbor in NC where we are for the summer just shared with me that she did that when she was dx last summer. I would rather be scarred than have my QOL suffer. I'm still dealing with the libido issue...wondering what I could take to increase that without doing BHRT. Fortunately I have not had any severe depression...just some down times which I can handle. I tend to be a little more emotional and can cry easily which never happened before. Good thing I'm retired now, because that would not have gone over well in the male dominated corporate world that I worked in;)
You do what you have to do to get your QOL back! If it means taking anti depressants, then you must do it. I just don't subscribe to taking them only for hot flashes because of the other SE's, although my MO has recommended them twice for me.
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Dropjohn,
Where are you getting the evidence that progesterone fuels breast cancer? Are you refering to the progestin, Provera? That is not the same thing as natural progesterone.
Nobody on BHRT would touch Provera with a barge pole.
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I looked at the HABITS and the Stockholm studies. Both are flawed studies, for a variety of reasons, and represent relatively small populations, but it appears that ERT (bio-identical or not) does not increase the risk of recurrence but that combined HRT (as is needed for women with an intact uterus) does. At this time, it appears that progesterone is more likely the culprit in the causal relationship between HRT and breast cancer.
To the best of my knowledge there aren't any controlled studies done using solely bio-identical hormones; the studies that have been done have not been consistent regarding the type of HRT used BUT the Stockholm study emphasized an estrogen heavy/progesterone light regime and showed no causal relationship between that regime and an increased recurrence rate among early stage breast cancer patients (the HABITS study, by contrast, did NOT emphasize an estrogen heavy HRT regime, and showed an increased recurrence rate).
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Kaara,
In 20/20 hindsight, I wouldn;t do chemo - the reduced risk of recurrence wasn't worth it for me. My onco score put me on the edge, and I figured I could deal with three months of hell - which I could. It was the fallout that killed me.
IMHO, I wasn't properly informed about the long term effects of chemotherapy - and concerns that I brought up before treatment around this were dismissed. I'm pretty unhappy with that.
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The HABITS study has been discredited for many reasons and its data thrown out by scholars. You may want to look at the European studies where bioidenticals are more widely used. It is a misconception that bioidenticals haven't been studied.
Again, I must repeat that it has been a specific dose of a very specific progestin that has been implicated in a short term but not statistically significant increase in BC in the WHI study. It's not accurate to use progesterone and progestins interchangeably.
Please PM me if you want to pursue this subject further. There are dozens of other studies on hormones after BC.
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thenewme, the FDA has a very checkered past with regard to hormones that have been a part of the Phamacopoeia. The attempted banning of Estriol was in response to a "citizen's petition" by Wyeth, the makers of premarin. It is not going to far to say that this was a "hit" on women's equal access to historically proven safe hormone products.
Estriol has a decades long safety record; in fact, estriol's common use and safety record was an early part of Wyeth's original data base to patent and market conjugated equine estradiol for use in women. Estriol was good, horse estradiol was better. Well, not quite.
The same is true for progesterone. A long safety record as a unaltered molecule; twist it into a patentable version, "progestin" and it starts to produce inflammatory metabolites. Progestins have been marketed to women as birth control pills and hrt. It is not the same as progesterone.
No matter how much certain interests try to mash the natural versions of hormones in with the altered and patented ones, the bottom line is that there is a difference in the way they are metabolized. Yes, hormones, both bioidentical and patent forms are powerful drugs. Yes, even the bhrt versions are not a free ride. Often, it is the way the individual metabolizes the hormones which is the key, however, it is now known that conjugated equine estradiol and "progestins" will cause the inflammatory metabolites of estrogen to be produced in far greater amounts and efficiency then bioidentical versions of estrogen and estriol.
Btw, bhrt is not just the province of compounding pharmacies. They are also produced by pharma in patch form, minus the estriol component. Pharma's versions are also very strong, much stronger than many women need, hence the necessity to have access to compounded versions.
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Lucy88 - The HABITS study was European - I'm not refering to the WHI data. If you're thinking of specific other studies of hormone use by breast cancer patients, please link or reference; I'd be interested to look at that data.
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Dropjohn - you sound very similar to me,and I am now on BHRT.... Feeling the creativity and INTEREST in doing quality work come back. Phew! I also had most of the other side effects you describe. I also felt my concerns regarding long term effects were blown off. In my case, my risk of recurrence was HIGH - triple negative tumor... And because i had a pathological complete response with the chemo, my risk of recurrence looks like about five percent. So.... In my case, the drop in risk when from bloodly likely to pretty darn unlikely.... So, despite the long term side effects, I would do the chemo again. Tat said, I am mourning my pre-dx self quite deeply. The hrt is making a HUGE difference, and the research I've read is consistent with what you've written above. So, I feel good about my decision, and I expect to be using this for around ten years... Unless I have some recurrence.
My onc was supportive. He made a point of saying he was extra supportive because I had a triple negative tumor and because I did bmx.
Hope everyone has a hot-flash-free night.
I'm still having them, but they are fewer and farther between.....
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No, as I said, I only do PMs to those who are seriously investigating. But, first thing, as any hormone scholar will tell you, you really need to distinguish between progesterone and progestins or your research will be fruitless. Good luck to you.
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Just had to jump in here...Premarin is a natural product and so it cannot be patented, and wasn't, it doesn't need one, because it is a natural product it cannot be exactly copied, all those metabolites. On the other hand, Cenestin and other Synthetic Conjugated Estrogens do have patents. That's right synthesized horse estrogens. See for example:
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=22407
DESCRIPTION
ENJUVIA® (synthetic conjugated estrogens,
tablets contain a blend of ten (10) synthetic estrogenic substances. The estrogenic substances are: sodium estrone sulfate, sodium equilin sulfate, sodium 17α-dihydroequilin sulfate, sodium 17α-estradiol sulfate, sodium 17β-dihydroequilin sulfate, sodium 17α-dihydroequilenin sulfate, sodium 17β-dihydroequilenin sulfate, sodium equilenin sulfate, sodium 17β-estradiol sulfate, and sodium Δ8,9-dehydroestrone sulfate. Prempro, the combination drug, has a patent in the US only.
Kathy
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lucy88 - Utterly your choice - if you don't think it's worth sharing publicly, I'm sure you have your reasons.
BikerLee
HRT has made a huge difference for me - and, like you, I'm still in the process of mourning my pre-chemo self. I resent having to supplement - I went into chemo a working machine and came out broken.
The patch I'm using is bio-identical - in all the estrogen only patches that I know of the estrogen (estradiol) is the same, it's the *glue* that's the difference, being the bit that's patentable. The glue *is* the delivery system, of course, and what works for one person may not work for another.
Transdermal seems to be the safest way to go, as it avoids the pass through the liver - in addition to the patch, I'm also using the Estring and Estrace cream to maintain vaginal and vulval lubrication and comfort.
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Kathy044: From everything I've read and researched, premarin is a synthetic hormone made from horse urine. I took it for 20+ years before switching to a bioidentical patch. I never took provera because I had no uterus or ovaries. When I began taking my BHRT which included progestrone and DHEA as well as the estrogen patch, I developed an early stage bc just nine months later. Don't know if the addition of the progestrone to my therapy was the culprit or whether it was just coincidental, but I'm off everything now and waiting for one year NED before I reconsider doing hormone therapy. So far my SE's have only been hot flashes, but I'm only taking 10mg of tamoxifen daily. Although I qualify, I passed on the Al's due to the issues with bone and heart.
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Kathy, I'm trying to understand your comment about premarin not being patentable; it is in fact a patented drug. In my opinion it is a form of estrogen that never belonged in women's bodies. It is a form of estradiol processed from pregnant mare's urine (they are tethered most of their sad lives, and the foals are sold to slaughter, so I have a big problem with the very nature of this drug).
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I am 8 years out of treatment for Stage I, Estrogen Pos. BC and started Bio-Identical Hormones two years ago. I wish I could say I don't worry about my choice but I do even though my quality of life has totally improved. Prior to the hormones, I had bladder infections almost every month of the year, no libido and hair loss. Those issues disappeared within a few months. I wish we had data about women who have been on these for a long period of time.
Kat
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Katgirl, is your oncologist OK with this, as well as your GYN? Just curious to know who is prescribing them for you. I am 4 years out myself from same diagnosis as you and recently went to a new Internal Med doctor, who also is naturopathic. I was hoping that she would be onboard with at least some natural progesterone cream, but she said that because I was ER/PR+, that she couldn't recommend any type of bioidenticals for me at all, except for vaginal products, which I already use anyway (vaginal estrace cream) prescribed by my GYN and OK with my Oncologist, as well. I was hoping for some recommendations on at least some supplements to help with the hot flashes and insomnia, but she didn't feel comfortable recommending phytoestrgens either, which I do currently use, but nothing ever seems to help for very long.
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Hi Rose,
My Onc and GYN said no to both the bio-identacals and Estrace. The hormone I'm using is a vaginal product plus I take a progesterin pill.
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It really makes me angry that there aren't studies being done to make our lives more bearable after being dx with this disease. I guarantee you if this was primarily a man's disease, there would be all kind of things to keep them from having the SE's that we have! As women we just have to shrivel up to nothing and have zero quality of life...the doctors and pharmaceutical companies just don't care. It's a shame.
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A little on the harsh side there Kaara. I've never had a doctor or medical professional that didn't care. Sure there are some jerks in the mix but it's unfair to paint such a broad brush indictment. I take that back, I did have an idiot doctor about 25 years ago after a surgical procedure that was a real asshole. But I didn't choose him, luck of the draw at the hospital.
I called my onc today because I'm beginning to experience some HFS from Xeloda and the onc's nurse immediately talked to me about the many things I can do to care for this side effect before finding out if my onc wants to adjust dosage.
There are far more on the good side than the bad.0 -
Chickadee: Any time I've asked about my SE's all I get are suggestions for drugs to take...like anti depressants! I'm not interested in becoming addicted to an anti depressant to prevent a hot flash. I have close friends who are doctors and they all say that the medical profession is behind in finding solutions for women with hormonal problems. Low libido doesn't present as a problem for doctors, because it doesn't prevent a woman from having intercourse...on the other hand if a man has the same problem...well....there you go....they have solutions for that, and what is more, insurance covers the drug. It did not cover my BHRT when I was taking it. Like it or not, we have a double standard.
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Re: "It really makes me angry that there aren't studies being done to make our lives more bearable after being dx with this disease,"
Actually there *are* lots of studies being done.
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thenewme: Really...then were are the results? I haven't heard of one study that is being done to study BHRT and it's impact on women with HR/PR+ bc...only the studies on the synthetic hormones which we now know were flawed. If there are currently studies out there and you can point me to them, then I stand corrected.
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I was taking bioidentical hormones for about eight years. I had blood work where my hormones were checked every six months, and I used creams compounded for me in a pharmacy. I just had a lumpectomy this month. I had breast cancer that was found in a digital mammogram, and was told to stop the creams, and that now I must take a hormone blocker. I, too have questions. If anyone has suggestions please reply.
thanks
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sueysmom: Welcome to the club! I had to give mine up last year, and went through some hot flashes and mood swings. I'm on 10mg of tamoxifen daily which is supposed to block the estrogen from attaching to the receptors in the breast, but not bock it entirely from the body, so I guess I'm still getting a little benefit, but no more BHRT until further notice:(
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"The Journal of Clinical Oncology report - recent - states that the absolute benefit of aromatase inhibitors is 2.9% reduction in recurrence Is this worth the side effects?"
Nope .0
