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tamoxifen

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Q: What’s the cost of tamoxifen or raloxifene (Evista)?
I am looking for the cost of tamoxifen or raloxifene with and without insurance. And this is why:

I am a medical student. One of the problems of today’s medical education is that we don’t learn about the costs of treatment, so it’s hard to relate to patients. My small group is trying to tackle this problem. Last week we talked about breast cancer, and the cost of tamoxifen and raloxifene as a breast cancer prophylactic/therapeutic treatment came up. It sounds great for an imaginary patient to take tamoxifen for at least 5 years or as long as life time to avoid cancer, but we were shocked to find out that many real patients cannot afford the treatment and stop prematurely. I searched online and found that in Canada, one week’s supply costs $20 or so. But I haven’t been able to find any reliable information about the cost in US. So if you could help me with this, I would really appreciate it!

A: My Mom took tamoxifen and passed away in 2000. At that time, I think it was costing about $80.00 per month. So no doubt, it’s higher now.

Q: Can the medicine tamoxifen effect someones glucose level?

A: No, don’t think so.

Q: Is anyone on Tamoxifen having side effects and what are you doing about them?

A: The following side effects are associated with Tamoxifen Oral:

Infrequent side effects:
Discharge from the Vagina Less Severe
Irregular Periods Less Severe
“Change of Life” Signs Less Severe
Genital Itching Less Severe
Dry Skin Less Severe
Rash Less Severe
Weight Gain Less Severe
Head Pain Less Severe
Feel Like Throwing Up Less Severe
Throwing Up Less Severe

Rare side effects:
Disease of the Retina of the Eye Severe
Cataracts Severe
Disease of the Cornea of the Eye Severe
Sudden Blindness and Pain Upon Moving the Eye Severe
Blood Clot in Lung Severe
Blood Clot Severe
Hepatitis caused by Drugs Severe
Polyps of the Lining of the Uterus or the Endometrium Severe
Overgrowth of the Uterine Lining Severe
Drowsiness Severe
Feeling Weak Severe
Cancer in the Lining of the Uterus Severe
Confused Severe

Side Effects

Tamoxifen’s unwanted side effects depend on whether you have any personal history of blood clots or endometrial cancer, your susceptibility to hot flashes associated with menopause, and the ups and downs of depression. Add to these the cost of the medication, the fact that some women have real trouble sticking to the routine of taking a daily dose of pills, and many women’s philosophical objection to taking any regular medication except perhaps for vitamins.

Although most side effects are not life threatening, the lesser side effects may diminish your quality of life, sometimes to a considerable degree.

Blood Clots

One potentially serious side effect of tamoxifen is blood clots, also known as thrombosis. The most common place for a clot to form is in the leg veins. These clots are dangerous because they can break loose, travel to the lung, and clog a vital blood vessel; this is called a pulmonary embolism. If you have had any history of blood clots, tamoxifen will probably not be an option for you. The possibility of pulmonary embolism is less than 1%, meaning that it’s likely to affect less than one woman in a hundred taking tamoxifen. Tamoxifen can also cause inflammation of a blood vessel. Call your doctor if you notice any new swelling, redness, discomfort, or warmth in your legs.

Endometrial Cancer and Other Uterine Effects

Another serious risk associated with tamoxifen treatment is cancer of the lining of the uterus (endometrial cancer) in a woman beyond menopause who still has her uterus. Regardless of tamoxifen use, women affected by breast cancer are at increased risk of developing endometrial cancer; tamoxifen, however, does make this slightly higher risk a little higher still. Here, the risk is two women in a thousand, and there are usually — but not always — clear early warning signs of trouble. The longer a woman takes tamoxifen, the higher her risk of developing a tamoxifen-induced endometrial cancer. (But the risk is still low, even for women taking tamoxifen for 10 years.) If an endometrial cancer is diagnosed within the first two years of taking tamoxifen, the cancer was most likely there before treatment with the drug began.

Endometrial cancer — related or unrelated to tamoxifen use — can usually be detected in the early stages, and it is usually curable with surgery. Unexpected vaginal bleeding is usually the first sign of trouble, and should be reported to your doctor immediately. You should also have a gynecologic exam every six months. The routine Pap smear, however, is not adequate for detecting endometrial cancer, because it assesses only the health of the cervix (the mouth of the uterus). Ultrasound testing or a uterine tissue sample obtained by biopsy are the most effective ways of evaluating the endometrium, but experts claim no benefit to routine endometrial ultrasounds and biopsies unless you have symptoms. Discuss this issue with your doctor.

If you have had a hysterectomy (removal of the uterus) because of endometrial cancer, tamoxifen may be contraindicated for your treatment of breast cancer. If, however, you have had a hysterectomy for a benign cause, such as fibroids, endometrial hyperplasia (an overgrowth of normal endometrial cells), or endometrial polyps (finger-like projections made up of normal cells), you don’t have to worry about endometrial cancer. Or if you are still menstruating, shedding your endometrial lining every month, then you are not at risk for endometrial cancer.

Tamoxifen can stimulate the benign changes in the endometrium mentioned previously, and it can also exacerbate underlying endometriosis, in which normal endometrial cells grow outside the uterus in the belly cavity, on the ovaries, or on the bladder.

Tamoxifen can also affect the uterus wall, which can lead to uneven thickening of the muscle and supportive tissues within the wall. Fibroids, ball-like overgrowths of these tissues, can result, or there can be lumpy bumpiness in one area or throughout the uterine wall. These changes can confuse ultrasound assessment of the endometrium. The ultrasound study can show a thickened or uneven endometrium, when in reality the change is in the underlying uterine wall. No increase in uterine wall cancers has been observed in women taking tamoxifen.

The benefits of tamoxifen as a breast cancer preventive still outweigh the risk of its contributing to development of an endometrial cancer.

Hot Flashes

Tamoxifen can produce menopausal side effects that include vaginal dryness, mood changes, and hot flashes. These sudden flushes can make you miserable and undermine your quality of life, but they do not endanger your life. Most women find hot flashes the worst side effect from tamoxifen. About half the women on tamoxifen are affected by them. Leslie: “I’ll be sitting at a meeting, flushed and perspiring. It’s damned embarrassing, as well as uncomfortable. Almost as bad is waking up in the middle of the night with those sweats.”

You may find that a regular course of exercise helps moderate the problem. Some women adjust to the hot flashes from tamoxifen; others grow to tolerate the problem, expecting it to diminish over time, and over a number of months it usually eases somewhat. One tip is to figure out how long it takes between taking the dose and the appearance of the hot flash. Then determine what time of day is the least inconvenient for you to have a hot flash, and time your medication to suit your schedule. Most of my patients choose to take their full 20 mg dose at night before going to bed.

If you’re experiencing severe hot flashes despite reasonable solutions, and tamoxifen therapy is strongly indicated, talk with your doctor about two possibilities suggested by Dr. John Eden at the 1996 American Society of Clinical Oncology meeting:

(1) start with 5 milligrams of tamoxifen and slowly increase the dose up to 20 milligrams daily, or

(2) try a short-term course of low-dose hormone therapy to ease the transition period. The course should last no more than a few months because the estrogens in hormone therapy are not known to be safe for women with breast cancer.
Premature Menopause and Fertility Issues

The menopausal symptoms brought on by tamoxifen tend to be more intense in premenopausal women than in older women. Tina, 35, stayed on tamoxifen for two years, but the hot flashes and other menopausal symptoms, the fear of side effects, and the stress of feeling so out of step with normal women her age finally were too much for her. “I gave it up. I want to try some alternatives, be a little kinder to my body, and enjoy my 30-something age a while longer.” Tamoxifen alone does not produce permanent premature menopause. (If you were menstruating regularly before tamoxifen, and tamoxifen stopped or disrupted your menstrual cycles, then your cycles will probably return to your pre-treatment pattern when you discontinue the medication.) But the closer you are in age to menopause, the more likely you are to slide into menopause a little sooner if you are taking tamoxifen.

If you are on tamoxifen and are premenopausal, you may still be fertile. If you do not want to get pregnant, you must use a barrier form of birth control. Oral contraceptives contain estrogens, which, as I have noted, are not known to be safe for women who have had breast cancer. (One of my patients on tamoxifen was asked what birth control method she was using. “Possum.” “Possum? What’s that?” “As soon as I hear him coming up the stairs, I play dead.”)

It’s also important to stick to your daily dose schedule of tamoxifen; if tamoxifen is taken intermittently, it can actually stimulate the ovaries like a fertility drug. If you want to get pregnant, stop the tamoxifen before you start trying, because the drug should not be taken during any stage of pregnancy. However, if you do get pregnant while on tamoxifen and you want to keep the pregnancy, stop the tamoxifen and don’t drive yourself crazy worrying about the effect that a month or so of tamoxifen might have had on the baby. There are no reported birth defects in people attributable to tamoxifen (just in an occasional laboratory rat).

Vaginal Changes

You may have noticed a watery or malodorous discharge, or dryness, irregular periods, or thinning of the vaginal wall while on tamoxifen. As many women note an increase in vaginal discharge (an estrogen-like effect) as report dryness (an anti-estrogen effect). Infrequently, intercourse may become painful, which can diminish your sexual activity or bring it to a halt. Discuss any changes with your physician. Again, any new pattern of vaginal bleeding requires immediate medical attention to rule out cancerous change of the endometrium.

Nausea and Vomiting

Reported by about 10% of the women on tamoxifen, this problem generally resolves itself in a couple of weeks. It’s uncommon to have it last more than a few months. This can be another unpleasant experience, even if it poses no danger.

Weight Gain

Chemotherapy, and the steroids that are given with it, cause weight gain in many women, and that weight gain may be perpetuated by tamoxifen. Like many women, you may be certain that tamoxifen makes you gain weight and makes it nearly impossible to lose weight (as long as you are on it). One woman after another tells me about this unending battle with weight gain. “I put on 25 pounds, and it’s real hard to get it off. It’s been three years and I’m still trying!” It’s not known why this weight gain occurs. Perhaps tamoxifen affects your metabolism and the way you process calories.

Loss of Energy

You may experience loss of energy with tamoxifen in the same way that you may experience loss of energy with menopause. In both situations, there is less estrogen, estrogen that seems to provide the “go-go juice” of energy for some women. Betsy, on tamoxifen for just a few months, said she had to talk herself into getting up off the sofa and out of the house to walk the short block to the beach. “The only other time I felt like such a cow was when I went on birth control pills. I’m determined to move myself around. I’ve always been someone who gets things done, and I’m not giving up on that image. If I can’t shake this lethargy, I may stop taking tamoxifen.” (Eventually Betsy did stop taking tamoxifen and got back her zip.)

Actually, a whole list of things other than tamoxifen can steal your energy away: lack of exercise, weight gain, pain, hot flashes, fear, uncertainty, anxiety, depression—are all examples.

Some content was adapted from the book Living Beyond Breast Cancer by Marisa C. Weiss, MD, and Ellen Weiss

Q: Have you or anyone you know developed uterine cancer after taking tamoxifen?

A: No.

I know it’s a possible side effect, and it was the reason I agitated for Arimidex rather than Tamoxifen, when my oncologist wanted me to have Tamoxifen. But it’s very rare.

Through breast cancer support networks, on- and off-line, I have talked to and heard accounts of treatment from several hundred women who take or have taken Tamoxifen, and have not heard of one case of cancer developing as a result of taking it.

Q: I am a 56 year old female with a hemoglobin count of 8.7. I am taking tamoxifen. Is the low iron an issue?
What is normal range and is this a problem?

A: a normal hemoglobin would be 12 to 16 for a woman under sixty. Your anemia is caused by the tamoxifen. Whether or not it is treated is up to you and how you feel and your doctor. Low hemoglobin often results in increased fatigue and if it gets really low, like around 6, you can have respiratory distress because the blood is unable to carry adequate amounts of oxygen without the hemoglobin necessary to do so. Suggest that you discuss your labs with your doctor.

Q: letrozle & Tamoxifen -How does these two help in female primary infertility?

A: Tamoxifen is used in ovulation induction. Because it is chemically and functionally similar to Clomiphene, those who cannot take Clomiphene for one reason or another can take Tamoxifen. It is effective in inducing ovulation in IVF patients (approximately 65-75%), but is less effective in establishing pregnancy (about 30-35%). There is also about a 10% risk of having twins and less than 1% of having triplets – or even more – when using Tamoxifen. The typical dose is between 20-40mg from days 2 through 6. Side effects include visual disturbances (treatment MUST be stopped immediately if this occurs), multiple pregnancy, abdominal distension, ovarian cysts, hot flushes, dizziness and nausea.

Aromatase Inhibitors like Arimadex (letrozole) boost the effects of FSH in stimulating ovulation and do not appear to have Tamoxifen’s severe complications. It also does not carry the risk of multiple ovulation and has a very short half-life (~45 hours), so it is quickly cleared from the body. There is one study indicating that letrozole was linked to increased rates of inherited malformations in the offspring of women who used it for superovulation, but another study countered those results. It’s very new to the fertility regimen still, so time will tell how truly effective, risky and helpful it can be.

Q: Is Tamoxifen really effective for Stage IIA Breast Cancer?

A: I am the same stage as you, and I am going on 3 years of Tamoxifen. Of course you have to be ER+ for it to have any effect on you, and from what I understand, the effects of taking Tamoxifen last longer than the actual 5 years you are on it. I have been pretty lucky and have not suffered the side effects that some women have. Good luck to you!

Q: does anyone have abnormal sweating from their head to the neck while on tamoxifen?
sometimes i sweat so much that my hair is saturated & water runs down my face i am 15 yrs through menopause

A: Hot flashes are a common side effect with tamoxifen citrate. I was on it for five years but only had mild hot flashes. From Rxlist.

Adjuvant Breast Cancer

In the NSABP B-14 study, women with axillary node-negative breast cancer were randomized to 5 years of NOLVADEX 20 mg/day or placebo following primary surgery. The reported adverse effects are tabulated below (mean follow-up of approximately 6.8 years) showing adverse events more common on NOLVADEX than on placebo. The incidence of hot flashes (64% vs. 48%), vaginal discharge (30% vs. 15%), and irregular menses (25% vs. 19%) were higher with NOLVADEX compared with placebo. All other adverse effects occurred with similar frequency in the 2 treatment groups, with the exception of thrombotic events; a higher incidence was seen in NOLVADEX-treated patients (through 5 years, 1.7% vs. 0.4%). Two of the patients treated with NOLVADEX who had thrombotic events died.

NSABP B-14 Study
Adverse Effect % of Women
NOLVADEX
(n=1422) Placebo
(n=1437)
Hot Flashes 64 48
Fluid Retention 32 30
Vaginal Discharge 30 15
Nausea 26 24
Irregular Menses 25 19
Weight Loss ( > 5%) 23 18
Skin Changes 19 15
Increased SGOT 5 3
Increased Bilirubin 2 1
Increased Creatinine 2 1
Thrombocytopenia* 2 1
Thrombotic Events
Deep Vein Thrombosis 0.8 0.2
Pulmonary Embolism 0.5 0.2
Superficial Phlebitis 0.4 0.0
*Defined as a platelet count of < 100,000/mm3

This should fade away as time goes on. Your body will adjust to the medication.

Q: How does tamoxifen effects the breast?

A: Tamoxifen prevents/reduces the growth of some forms of breast cancer. As far as I am aware it has no impact on healthy breath tissue. Elsehere in the body, tomoxifen acts as additional oestrogent, with some positive health benefits.

http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

You may benefit from talking to a nurse about this. You can call NHS Direct on 0845 4647 (24 hrs) to discuss any general concerns or for more general information.

Q: is it healthy to continuously take steroids and tamoxifen or HGC Pregnol to reverse the steroid effect?

A: There is no “reversing the effect.” Once the choice is made you are going to have to face the consequence.

That said, there is a chance you may be one of the genetic lottery who comes away clean, it does happen.

But more often then not. Once you rely on a foreign substance to get what you want, you are not going to like the long term effect.

Q: Anyone developed an allergy / allergic reaction or rash after taking Tamoxifen?
My mum is currently taking Tamoxifen following treatment for breast cancer and has developed a severe rash. The McMillan nurse says that she hasn’t seen anything like it before as a reaction to Tamoxifen so I wondered whether anyone else has to rule it out as the cause.

A: A rash is definitely included in the possible side-effects of Tamoxifen. Has your mum just started taking it? Allergies typically start after the second dose. Get her to see a GP urgently, even tonight if possible – she may need some steroid treatment if the rash is severe. Because of the breast cancer her immune system may already be low, especially if she’s recently had chemotherapy and/or radiotherapy. The prescribing doctor will probably need to fill in the ‘yellow card’ at the back of the British National Formulary – this is the book that doctors use to prescribe drugs. They list all the known side-effects and if a severe one develops they should let the BNF know so that can be included in the next edition. Hopefully your mum will be given an alternative to Tamoxifen and make a good recovery. Good luck :)

Q: Possible breast cancer and Tamoxifen treatment?
My friend was just told that she will develop breat cancer in the next 5-10 years and is being put on Tamoxifen, does anyone know anything about it or is anyone else on it?
There are more details but I dont feel comfortable giving out her entire medical history. It is associated with the fact that she over produces estrogen. It has nothing to do with genes.

A: my aunty as had breast cancer and been thru the surgery and wat not but as far as im aware the drug tamoxifen is like a cancer back up it stops it from coming back after treatment but its not always done so but if shes unaware of what she is taking then she should see a doctor and he can tell her more i have a link for you if u need to no more! Tell your friend i said Good Luck with the breast cancer as its not something every woman dreams of having, Tc x

Q: I am ER/PR positive an HER negative I need to make quimioteraphy or only Tamoxifen traetment?
I was diagnisticaded with invasive ductal carcinoma with features in tubular carcinoma. Thank you

A: The question arises because ER/PR+/HER2- cancers are often not extremely responsive to chemotherapy. However, they generally do respond to Tamoxifen.

Personally, I would take the chance that it might respond to chemo, and then followup for several years with Tamox.

Are there other age/health issues that would make you avoid chemotherapy?

Q: What Should a person with breastcancer IV take after tamoxifen and aromasin. Arimidex Femara or Faslodex?

A: It depends on whether or not you are pre or post menopausal as well as other factors. It seems like many women are just “left in the breeze” with no medication after their successful 5 year course of Tamoxifen though, and if the cancer rears it’s ugly head again or a new cancer is found, the lab work on the cells from the new development would need to be done before anything could be prescribed. I hope that you are NED after 5 years of Tamoxifen and can go into the “careful vigilance” mode.

Q: has anyone taken megace tablets for hot flushes caused by taking tamoxifen for breast cancer and did it work?

A: No – but I just looked up the side effects and the main use – which is to enhance appetite and mimic progesterone. My oncologist said the hot flashes would last 3 months – my sister said 6 months. After 12 months of BAD flashes every 2 hours I quit taking tamoxifen. I did treat myself with DHEA which is an over the counter pre-hormone. That did the trick for another year. It can be risky for a cancer patient, because it does replace hormones, so I have backed off and the hot flashes are here again. I found NOTHING else that would help and was unwilling to go on anti depressants. Just don’t want any more chemicals in this ol’ bod. Good luck to you – it ain’t fun.

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