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Doctors' Answers to "Frequently Asked Questions" - Tamoxifen

These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

[posted 06/29/2000]
Question: I was diagnosed with breast cancer in Oct. of '99. I have had a lumpsectomy(sp) and my lymphnodes removed from under my left arm, been through chemo and am now just finishing the 6 week radiation treatments. My next step is tamoxifen.

I have read several new articles that questions using this drug as the side effects can be as life threatening as the aggressive cancerous lump they remove from my breast.

Can megrace or amidrex be used as alternitive drug therapy, as each do the same as tamoxifen, yet offer less dangerous side effects?

My GP says I have an enlarge uterous(sp), but after all tests came back negative, simply stated that it can be normal for a woman my age. This worries me as tamoxifen has been linked with uterine cancer.

Please reply as soon as possible as my radiation treatment are done around July 12th and I would like to make the best, most informative decision possible!

Thanks so much,

Answer: Tamoxifen is a far better treatment option than megace or amidrex. There are some risks,but generally minimal. There is an increased risk of uterine cancer, but regular pap smears almost eliminate any serious risk and the risk is only about 1% or so anyway. Tamoxifen is by far the best option. The best option is to try it and see how you feel. Any serious problems(like increased clotting) will usually occur in the first few months. The uterine cancer risk is there but really minimal.

[posted 05/3/2000]
Question: My mother in law had colon cancer five years ago, then breast cancer two years
ago. Put on tamoxifen about six mos after single mastectomy...as far as we
know cancer was isolated to one breast. Recently...out of the blue...she
suffered a tia or mini stroke...she seemed ok and after having a neg CT scan
was sent home. She then started to lose speach...had trouble walking and her
hand shook.
She then within two days started thrashing in bed and jerking hands and legs.
She was able to think of what she wanted to say...but could not complete
sentences. Neurologically though...her pupils dialated, etc.etc. She has since
been admitted to a large hospital and had another ct and two mri's done. They
showed bilateral small vessel eschemia but no major stroke signs. The drs
there tell us that she is suffering now from siezures. Her EEG's have sharp
markings indicating that she is still suffering them. Her blood pressure has
NEVER been high. She is only 72 years old and was in good spirits, physically
and mentally very active...and doing well until this. All of a sudden I
thought about the tamoxifen and the side effects...one being blood clots. I
questioned both her oncologist and her neurologist and they said that if they
can't find another reason for this happening, they are going to say that they
believe the tamoxifen caused this to happen. Since admission..they took her
off tamoxifen and put her on extremely high doses of phenabarbitol and dilantin
(I believe siezure meds) but she is still having siezures and her condition is
considered to be serious.
I have tried running searches on tamoxifen and all i get is side effects like
hot flashes and general warnings on blood clots. Please email me if you have
ever heard of this type of situation...it would be greatly appreciated. And if
you have any extra prayers left over at night her name is Ellie.
Mary p

Answer: The seizures would not be due to the tamoxifen. Usually seizures take about a year after cerebral damage from a TIA or stroke. This is the usual course. Tamoxifen can clearly increase the risk of clotting-whether arterial or venous. But, she has more than one problem ongoing.

[posted 04/23/2000]
Question: I am both a consumer and a RN. I would like to know what the protocols are for follow-up when someone is placed on Tamoxifin for breast cancer treatment. What is the standard of practice for endometrial biopsies and transvaginal ultrasound if any. Should these be rountinely done during the five yr course of Tamoxifin, or are yearly GYN exams sufficient? Or should the patient just be told to report any vaginal bleeding and skip endometrial bxs. and ultrasounds? I have searched everywhere that I can think of and can not find any guidelines/protocols/standards of practice on this subject matter. Thanks you for any light you can shed on this matter. Sincerely, Hope Thompson

Answer: There is a lot of variation, but most mds ignore biopsies/ultrasounds unless there is bleeding or an abnormal pap(some would do every six months paps).

[posted 04/11/2000]
Question: I would like to know how Tamoxifen should be discontinued after taking for five years. 10 mg. x 2.Also what effects would someone experience discontinuing it "cold turkey" I am a comsumer, patient and a nurse. Thank you.

Answer: Shouldn't be any specific problems stopping it. It has no estrogen effect so there will be nothing here.

[posted 03/26/2000]
Question: I have been taking Tamoxifen for 10 days. I am having pain in the calves of my legs and headaches. Also, I am noticing that I am retaining fluid. I basically wondered just how much weight women typically gain on this drug. I do exercise daily to try and combat the weight gain. Also, do these side effects go away in time? I also have night hot flashes, not too severe..yet..Thank you for any information you can give me.

Answer: The weight gain is variable and is a combination of some fluid retention as well as actual weight gain(tissue) over the years you will be on the drug. There is some risk of phlebitis with this drug, so your md needs to ensure that the leg pain is not that. The hot flashes will last for awhile. Sometimes nocturnal clonidine(a blood pressure pill usually) will help with these sensations. The usual weight gain(over 2-3 years) is 10-25 pounds.

[posted 03/2/2000]

Answer: Most would not recommend Evista, but Fosamax is fine. There is some data that tamoxifen acts to preserve bone density by itself. Most would supplement with fosamax or miacalcin and follow it.

[posted 02/6/2000]
Question: I was diagnosed with Hepatitis C approximately 4 years ago. The liver biopsy showed mild inflammation and my liver enzymes are normal at this time. I am not taking medication for this disease. I began taking Tamoxifen in January for LCIS. My question is how does Tamoxifen affect the liver and will this medication cause an increase in liver function tests or cause any additional liver damage?

Answer: It is metabolized through the liver as well as the kidney. There is no good way of knowing, but probably would not be any different than estrogen in it's effect on the liver. However, you should check your liver enzymes every couple of months for the first 6-8 months to be on the safe side.

[posted 01/23/2000]
Question: Dear Doctors,
Do you know if there are any behavior changes from taking the drug Tamoxifin?
Example violent mood swings in a 70 yr old woman.
Also she states that her vision is affected because she say's everything apppears to be dark even in broad day light
She had Cattaract Surgery about 5 Yrs ago.
Thank you for any help in this matter.

Steve Hamilton


Answer: This would be pretty uncommon, call her doctor.

[posted 10/3/1999]
Question: I had a 1.3centimeter lump removed in Aug 1997. It was
estrogen positive. My lumphnodes were negative. In January
1999 I had a complete hysterectomy. I have been on Tamoxifen
since the breast surgery. 2 years now. Since my body is no
longer producing estrogen, why do I have to continue the
Tamoxifen therapy? Can I get off of it early?

Answer: Most studies show that Tamoxifen improves survival in both receptor positive and negative patients. The length of time is debated hotly. Most agree at least one year but recent trends are towards 5 years. Hard to know. It also appears to be a primary preventative medication to prevent breast cancer in the remaining breast, potentially a major advantage.

Tamoxifen [posted 1/7/99]
Question:My mother has been on Tamoxifen (Nolvadex) for 10 years, since her last re-occurrence of breast cancer. I have been unable to find any long term studies (over 5 years) on this drug. Can you tell me anything regarding the long term effects of Nolvadex?

Answer: There are several and appear to have a decrease in bone fractures, better cardiovascular risk and generally low overall severe risks. Pretty similar to Reloxifene we think.

Length of Time to Stay on Tamoxifen [posted 7/31/98]
Question: how long will i have to take the tamoxifen to be sure the cancer does not return

Answer: It is never a "sure " thing - it only improves the odds. Usual duration is 3 or 5 years depending on the physician, your receptor status and the aggressiveness of the tumor.

Length of Time on Tamoxifen [posted 7/31/98]
Question: I have been on tamoxifen since August 1994. Generally how long do doctors keep you on this? My doctor has said approximately 5 years although each check-up shows me clear. Tumor highly estrogen positive, ovary removed in December 1996 to stop production of estrogen, but the doctor still insists on the full 5 years.

Answer: Usually 3-5 years depending on the physician. Yours obviously leans toward 5.

Question: I was wondering if you could aid me in suggestions on how to combat the side effects of hot-flashes, waking and night sweats. My sister is on tamoxifen for treatment of breast cancer and has been experiencing these side effects. She has been taking Vitamin E, Primrose oil and ginseng. Can you suggest something to aid her in decreasing the effects?

Answer: Clonidine can be very effective. It is a central alpha-blocker initially used for blood pressure, but found to be very effective in many drug withdrawal problems (heroin, tobacco, estrogen, etc.). It will cause a dry mouth and mild constipation and occasional somnolence, which usually is the limiting factor. However, it usually reduces or eliminates these problems. It is available as a patch or pill. Start with the smallest dose available and work up as the symptoms and side effects dictate.

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