On this page I share what I have learned about hormones, but I need to emphasize that my choices may not be appropriate for everyone, so my words should not be taken as medical advice.
Following the intensive chemotherapy that came with my bone marrow transplant / peripheral stem cell transplant, my body experienced severe changes in its natural hormone regulation. This is a common chemo after-effect, and for pre-menopausal women, the changes can be physically and emotionally traumatic. Normal menstrual cycles can cease, fertility can be damaged temporarily or permanently, serious medical conditions like osteoporosis can result, and less serious menopausal symptoms can arise (like night sweats, hot flashes, vaginal dryness, etc).
While I was still in the hospital for the bone marrow transplant, my oncologists were fairly insistent about immediately putting me on hormone replacement. My prejudice at the time was to resist because I had the impression that conventional "hormone replacement therapy" could do more harm than good. So instead of going straight onto hormone replacement, I took a few months to slowly research my alternatives by doing lots of reading, talking to other folks who had gone through chemo, and talking to many pharmacists and physicians (including gynecologists and endocrinologists).
Some of what I learned conflicted with what some doctors told me. What some doctors told me conflicted with what other doctors told me. At times I had to read medical journal articles to come to my own conclusions. The fact that I had academic training in statistical analysis and a natural interest in the sciences helped. In the end, it took a strong spirit to convince my medical team to allow me to forge my own path, but I found that by arming myself with lots of information, I was able to convince my doctors to support me in my own choices. And it has all been worth it.
I summarize below what I believe is the best course of action for women like me who have suffered adverse hormonal effects after chemo and who are too young to be in menopause (below the age of 50). I should re-emphasize that I am not qualified to give medical advice, so I am just stating my personal opinions.
First off: estrogen. Had I not gone through intensive chemotherapy treatment, I would still be producing adequate amounts of estrogen myself. But a consequence of my treatment was a reduction in my ovaries' ability to produce normal amounts of estrogen, a common side effect of most chemotherapy and some radiation treatments for cancer.
I know my body is producing low levels of estrogen for several reasons. First, my periods became very irregular. Second, I was diagnosed with osteoporosis after a bone density scan. (Doctors commonly recommend that folks who have experienced a prolonged period of inactivity due to illness, who have undergone extensive treatment with steroids like Prednisone, or who have been treated extensively with chemotherapy should have a bone density scan to assess the state of their bones). Third, simple blood tests indicated my blood levels of estrogen were much lower than normal.
With the low levels of estrogen my body was producing (and the fact that I had never been diagnosed with a cancer that was sensitive to estrogen), commencing estrogen replacement made perfect sense, and I will continue taking it until I hit the normal age of menopause (around 50). However, most of the estrogen treatments prescribed by doctors are very bad for human women, so anyone considering estrogen treatment needs to tread carefully. Premarin, for instance, contains mostly horse hormones, which can cause more medical problems in women than they help. (Recent clinical trials using Premarin were halted when it was discovered that women in the study were experiencing higher rates of heart attacks and strokes.) I have come to believe that all oral forms of estrogen may be linked to increased strokes, not just Premarin. When a woman takes estrogens orally, the liver has to metabolize them, and the result is clumpy proteins in the blood that can lead to strokes. By taking an estrogen through the skin, I believe a woman can very likely avoid this risk, or at least reduce it substantially. So while I used to take an oral combination of three natural human estrogens called tri-est (containing estriol, estrone, and estradiol), I no longer take that. Instead I take only estradiol in a patch form that I stick onto the skin on my abdomen every 3.5 days (with a 3 or 4 day break at the end of every 28 day cycle). The brand name is Vivelle-dot (called Estradot or Estraderm in Canada), and there are many good things about this form of estrogen. One is that because it's a brand name, insurance companies have an easier time recognizing it than some compounded alternatives like tri-est. Two, it's easy to fine-tune the dose because it comes in many strengths. (Some doctors even say you can cut the patch to tailor the dose, though the company that manufactures the patches does not officially endorse this practice.) Three, the estrogen in this patch, estradiol, is totally natural to the human body, so there are fewer risks of the sorts of problems that have been occuring in the recent hormone replacement therapy clinical trials (and since it's absorbed through the skin instead of orally, the risks may be lower still).
I'm on the lowest dose, 0.025mg, but I can easily increase the dose if it doesn't seem to be enough. How do I know I'm taking "enough" estrogen? Sufficient vaginal lubrication is a good indicator. (And if my breasts get sore or lumpy for more than a few days a month I know I'm taking too much.) But there are also several urine test that are excellent indicators. One is called N-telopeptide, another is called Deoxypyridinoline (also known as DPD crosslinks). Once you've been on a particular estrogen dose for 2 or 3 weeks, it is a good idea to have your doctor perform one of these tests. (Bring in a first-thing-in-the-morning urine sample.) The tests indicate whether or not you are losing bone mass: if you're losing too much bone mass, you need to take more estrogen. You want to be on the low range of the normal range for either of those tests. You can also have a blood test for your estradiol level -- that's a good marker as well. Note you also don't want to take too much estrogen, as that can increase your risk of breast cancer. It's important to find the lowest dose that results in a low-normal score on one of the the urine tests.
Whatever form of estrogen you decide to take, be sure it contains only forms of estrogen that are natural to human women: estrone, estriol, or estradiol (which is sometimes called estradiol 17-b or estradiol 17-beta). As I said above, I've chosen to take a patch form of estradiol called Vivelle-dot, Estraderm, or Estradot. Oral forms of natural estrogen include tri-est made by a compounding pharmacy, or brand name estrogens like Ogen, Climara, Estrace.
I wish there were some useful books on estrogen replacement. There are some that are useful for one aspect or another, but knowledge in the area has been changing so much recently that I'd hesitate to endorse any particular book. A VERY useful web site is that of the endocrinologist Jerilynn Prior: http://www.cemcor.ubc.ca
Like with estrogen, you can test your body's progesterone production with a simple blood test. But I think the blood test is unnecessary for women who already know they are menopausal or who already know they are at risk to develop osteoporosis. Based on what I have learned about progesterone, I believe it's important for every post-chemotherapy woman (and every post-menopausal woman, regardless of her age) to take a nightly dose of progesterone for the rest of her life. Doctors have shown extensively that natural progesterone does lots of good for women's bodies with no deterimental side effects!
It is important to emphasize that progesterone is not the same thing as imitators called progestin or "medroxyprogesterone acetate" (which the brand name Provera contains) ... Chemically altered versions like medroxyprogesterone acetate are likely to cause more health problems than they fix. Only non-altered progesterone is native to a woman's body. Thus, be sure to take a natural form of progesterone. A readily available brand name is Prometrium (it includes peanut oil to help your digestive system absorb the progesterone), or you can have a compounding pharmacy mix up a less-expensive batch of micronized progesterone (the same thing that's in Prometrium; micronized just means it's easier to absorb). The "correct" dose is at least 100mg per day, and doctors say that up to 300mg or 400mg per day (of natural progesterone, not its imitators) is perfectly safe if you already have weak bones.
If you'd prefer not to take progesterone orally, you might consider taking a prescription progesterone cream. (I'm leaning in that direction myself). It can be mixed up by a compounding pharmacy (in a non-oil based cream) to contain 100mg-400mg of progesterone per dose (just like you'd take orally).
To further aid bone density, it's helpful to take 1.5g/day of calcium & 1000IU/day of vitamin D. There are also several other vitamins & minerals that help bone density: magnesium, manganese, selenium, boron, strontium, ... Many doctors claim those additional compounds are at least as important as calcium & D, and taken in proper doses they are not harmful. Two very useful books contain more details on these additional compounds and about bone density in general: Preventing & Reversing Osteoporosis by Dr. Alan Gaby and the Bone Density Diet by Dr. George Kessler. A very useful web site on progesterone therapy is that of the endocrinologist Jerilynn Prior: http://www.cemcor.ubc.ca A great book of exercises for folks with (or wanting to prevent) osteoporosis is Exercises for Osteoporosis by Dianne Daniels.
I don't take anything for my thyroid, as I am lucky my thyroid function has not been compromised by my cancer treatment. But I have read several books on that subject, and would recommend The Thyroid Solution by Ridha Arem and Living Well With Hypothyroidism by Mary J. Shomon.
Please keep in mind that my choices may not be appropriate for everyone, so my words should not be taken as medical advice.
