Tamoxifen Side Effects

I just finished 7 weeks of radiation in March and started Tamoxifen 3 weeks ago. Unfortunately, I'm experiencing side effects: extremely dry eyes, hot flashes, hair loss, nausea which started a week or so after I started the Tamoxifen. I spoke to my oncologist and she didn't seem concerned because she said side effects were rare and referred me to my pri care dr. I saw my pri care dr today and walked away with a bag of meds: Omeprazole (nausea), Zoloft (hot flashes) and Restasis (dry eyes).
My question is this: Is anyone else experiencing these side effects and, if so, will they go away? I really hate to start new meds if I don't have to, but at this point, I'm wondering if the Tamoxifen is worth it.

Thanks for taking the time to respond. It helps to hear the experiences of others. In my circle of friends, I'm the only one who has been diagnosed so I really don't know what to expect. Good luck and prayers to you, your daughter and your sister.

I'll be an optimist and hope my hot flashes disappear too. It's a little embarrassing because my face and neck really start to perspire. I'm still way too young for menopause, so it's a bummer that I'm having these menopause-like symptoms so early.

There is a product called Lilash which is an eyelash growth stimulator that I've tried that really works. In the same product line is something called Librow which stimulates eyebrow growth. It's expensive, but there is a money back guarantee if you buy it off the official website. You can get it for cheaper off of ebay. Try a google search and see if it's something that may help you.

Thanks for your suggestion. I'm going to take your advice and try to hang in there. I have to remember that tamoxifen side effects are a lot more tolerable than a recurrence.
Congrats on passing the 5 year mark. I can't wait to get there. Thanks for taking the time to post.

Congrats on finishing your treatments! My 3 year anniversary of my last treatment will be on July 18 th!   I had a lump in my left breast and had a partial mastectomy, chemo and radiation. I too am on Tamoxifen. Have been for almost 3 years. My body has always reacted very sensitively to medication so when I started taking Tamoxifen it was a real shock to the system. Hot flashes, night sweats, body aches, leg pains, and the lovely weight gain! (Which will not go away no matter how much you try to diet and exercise!) Luckily no hair loss. That was awful enough from chemo. That grew back great. Faster and stronger than ever. Eyelashes and brows came back within a few weeks after finishing chemo.   I had to wean my body on to the Tamoxifen. I was supposed to take 20mg a day. Tried that and just got too sick. Then I had the doctor prescribe it in 10mg pills instead of the 20mg. I then cut the 10mg pill in half with a pill cutter. After that I started introducing it slowly into my body. The first week I took half of one of the 10mg pills or 5 mg. The second week I took a whole 10mg pill. The third week I took a whole 10mg pill and a half of one for a total of 15mg. And then the final week I took 2, 10mg pills and my body tolerated it after that. I still get the pills in the 10mg strength and take 2 a day. My oncologist said this was a great way to build up to it and he would recommend it to his other patients. No one suggested this to me, I just had to come up with a way to get used to it slowly and it worked. They wanted to put me on a host of other meds to counteract the side effects of Tamoxifen, but who needs to take antidepressants, and things like that. I am naturally a very happy person. Hate having to take any meds at all, so I surely was not going to add more to my body and deal with all their side effects too! Perhaps if you are having a bad time getting your body to tolerate Tamoxifen, that may be a way for you to introduce it slowly into your system. Your body does get used to it pretty quickly and the symptoms do lighten up. Hope this helps!   The weight gain is my main concern. I gained 20+ pounds so fast and I just can not get rid of it. I have the dreaded “Tamo Tummy” and looks like I am pregnant. I have always been very fit and trim (about 125 pounds) and having all this excess body fat around my mid section now is driving me crazy! I have rolls of fat on my sides and puckers on my arms and legs and hold water like crazy. I hate how chemo and Tamoxifen have changed my body so dramatically. Chemo threw me into instant menopause and the hot flashes started almost immediately. The Tamoxifen really added fuel to the fire, literally! Funny how they say that being overweight or having excess body fat can be a contributor to getting breast cancer, and then they give you a drug that makes you gain weight! Where’s the logic in that. I will be more than glad to not take it anymore and hopefully be able to get my figure back. The only way to even lose a little weight is to totally not eat any white foods and barely any carbs, my body will just not metabolism them anymore since my treatments. Hope others out there are having a better time with this than I am, but you know what I always tell people, “At least I am still alive to B**CH about it! If you have any suggestions for getting rid of body fat induced by medication, let me know!   Good luck to all of you out there who have just finished treatments, are just starting treatments or maintaining your good health. My thoughts and prayers are with all of you. It’s a tough battle, but with the support of others and a strong belief in yourself, you will be amazed what you can accomplish!

Hey Surfer joooo~

So glad you are doing well! I remember being a year out. Such a great feeling to be done with all the treatments. Thank you for the veggie/fruit suggestion. I have been drinking lots of water and eating lots of fruits and veggies this week. I have noticed that some of the bloating is going down a bit, but it doesn't show on the scale yet. Been peeing a hundred times a day! I get so bloated and hold water lately.

 

Hey, your TMI about being constipated is right on. Don't know what the problem is. It is like I have eaten super glue or something. Ever since my treatments and tamoxifen I have been clogged up! I drink tons of water, eat fiber, even a gentle laxative barely budges things along. Very uncomfortable and bloated! I have told my doctors this a hundred times and they just tell me to eat more fiber. Hell, what do they want me to do, go out in the yard and chew on a tree! It is tough, so I know exactly how you feel.

Sounds like you are very active which is great. I used to be. I do strengthening exercises but really need to get the cardio back in. I am just so pooped out at the end of the day after work. I sit at a desk all day, but do run around a whole lot in the office. Try to walk at lunch, do exercises at night, when I finally get a chance to sit down at home. Usually about 9 or 10pm. You would think with all the running around that I do, that I would be thin, no such luck! I too until I was 30 had to try to gain weight cause I weighed about 100 pounds or less without even trying. People always told me I was too thin cause I am 5'7". But I always felt great. No one in my family ever had breast cancer. I always ate healthy, no smoking, drinking, drugs, always swam every day, etc. and I still got it. Crazy huh?! Should have partied like everyone else I knew, they didn't get sick!

So where do you live? Must be by the ocean to be able to surf.  I'm jealous. I live in Louisville, KY. Born and raised in NJ, so I had the ocean there. Miss it! It's so theraputic.

I too knew no one who had gone through this. I was the trailblazer in my group. My sister in law was diagnosed with breast cancer last Valentines Day. She is doing well now too. Her hair is growing back nicely and she is starting to get rid of the weight she gained from chemo. She does not have to take Tamoxifen, so she is getting back to normal. Your right, it is so hard to tell people who have not gone through this what you feel like cause it's so unlike anything you have ever felt before. You can't aquately describe the feeling from chemo and radiation. There are no words to describe it. Like I tell people, it's tough stuff, but we're tougher!

I have an appointment today at 2:30EST with my oncologist for my 6 month followup. I will again tell them about my problems with weight gain, muscle stiffness and constipation. Not that there is anything that they can do at this point. If it would ever stop raining for 5 mintues maybe I could get outside and try some speedwalking. I have been looking into doing some Jazzercise since I love to dance! Maybe that will sweat the garbage out of my system.

Hope you have luck weaning yourself on the Tamoxifen like I did. It really did work to gradually get yourself up to the 20mg. I still take 2-10mg pills a day, instead of the 20mg. I like having that option. I have considered stopping like so many other women have from other forums that I have seen, but like you, I am too afraid to get this back again and there is no way I want a repeat of that part of my life. How old are you? I just turned 50 on April 10th. Want to be here 50 more! Love talking to you too. Glad I can be of some encouragement to others. It really does get better, and you will feel great. Don't get me wrong. I do feel good, would just be better if my body was just fit and trim again! I did get down to 125 pounds 3 years ago for my class reunion, but I had to starve myself to death to do it. Plus that was before I was on Tamoxifen for all this time too. Didn't have as much body fat to get rid of then. But as soon as I ate some carbs, it came right back and just can't seem to stop it no matter what. Hoping more cardio will help out!

Thanks for your suggestions!

Look forward to chatting with you again!

Take care!

 

Of interest cancer help line (after i rang for advice said) re terrible constipation, piles u name it while on tamo:

Radio and chemo can cause side effects of constipation as does tamo and other hormone tablets - hey Im now super glued together and in pain.

Yes drinking plenty of water, and vegs is good, cod liver oil.

Nice foot massage goes down a treat - takes the mind of the but onto the feet.

Pinkie

Here is my question. I had a breast biopsy done on both breast 2wks ago. The doctor called me and said that the biopsy done on the left breast came back fine but the one in the right breast came back as LCIS (Lobular Carcinoma In Situ), so now the doctor has scheduled a more invasive surgery to remove the lump in the right breast. She also told me that once the lump is removed I will have to go on Tamoxifen, all the research I have done on this medication has scared me because of all the side effects. What are the odds of losing your hair while on this medication. And what does it mean if the doctor hasn't said anything to me at this time about maybe having to do radiation? Will I have to do radiation or chemo after having this lump removed and before starting on Tamoxifen? I am 37 and scared on what my outcome is going to be. Can someone please give me some advise.? My surgery is scheduled for December 2nd 2011. Do I have anything to worry about and am I overworking myself with all these fears?

MMckay
LCIS is early stage, so there is not a clear consensus on whether or not chemo is necessary. Most doctors, I think, like to do radiation with a lumpectomy, as a precautionary measure. If there is a stray cancer cell or two after surgery, then radiation will take care of it. The tamoxifen is used if the cancer is ER/PR positive. It is a hormone blocker and keeps hormones from "feeding" any stray cancer cells. Tamoxifen doesn't typically cause you to lose your hair. Taxanes, like Taxotere, will cause hair loss, but they are true chemo drugs.

Of course this is all scary! And you have every right to be worried. You are so young, and you've just found out you have cancer! But the good news is, they have caught it early, and it is as treatable as a breast cancer can be. So try to keep that in mind when you are getting overworked about the whole thing.

Let us know how things are going...
Hugs...
BEV

Yeah Pink,

   So what were you diagnosed with then besides just cancer? Like for example the doctor is telling me i have LCIS. What was yours?

I didn't mean to make you feel more nervous than you were before. LCIS is an acronym for "Lobular Carcinoma in situ." I think in one of her books, Susan Love refers to LCIS as "pre-cancer." The abnormal cells are contained within the lobule (usually aren't any cells contained within the lobules). While this may not be considered a "real" cancer, it definitely puts you at higher risk for developing breast cancer. And many doctors want to treat as a very early cancer for that reason. Thus the tamoxifen, which blocks the hormones that feed breast cancers. Does that make sense?

Sorry if I confused you.

Hugs...
BEV

Tracey, I had all of those side effects, except for the headaches, not from radiation or tamoxifen, but from chemotherapy. Chemo put me into menopause at 36, and I immediately started to gain weight, experience horrible (and I agree with you... horrible is the perfect word), sleepless nights, and no energy. The doctor tried several different medications, none of which helped at all. Finally, they put me on effexor, and within days, my symptoms began to abate. Different anti-depressants work for menopausal symptoms for different people. If zoloft doesn't work for you, ask your doctor if you can try a different one. I've actually had fewer headaches since I lost all my estrogen... which leaves me to believe that they were hormone-related.

Hugs...
BEV

mmc... just for today, I hope you can leave your fear behind and celebrate the good things about what you have in your life. I know this is very hard. I was 36 when I was dx'ed with two different types of invasive breast cancer that had spread to the lymph nodes. I had two young girls, and I, too, was devastated about what would happen to them if I died of this darned disease. I had lost my own mother to cancer when I was 7, and the thought of leaving my girls without a mom... Anyway, it's been 17 years since I was dx'ed. My girls are grown and gone. I have a beautiful granddaughter who is the light of my life. And I'm "no evidence of disease" since mastectomy and chemo. Your prognosis is so good! So try to count your blessings that this hasn't had time to grow into an invasive cancer that would require more treatment than a lumpectomy and an aromatase inhibitor.

Take care, and try to think about how good this really is!

Hugs...
BEV