This Tamoxifen sucks!

I don't love the stuff, have to admit.  Chronic lower back pain, constipation, and real concern for uterine thickening (circulating estrogen is high, another SE?) are part of what I deal with daily at this point.

I have found cutting back on caffeine, drinking more water, and taking extra magnesium help with constipation.  I also use miralax when it's bad, and probiotics at double the dose seem to help, too.  Fiber supplements, forget it.  Doesn't cut it, and sometimes makes it worse no matter how much water I drink.  The back pain can be combated with daily exercise.  It's amazing--three days out of the gym, and I have a hard time sleeping because it kicks up.

If I had DCIS, I might consider ditching the stuff.  I think anyone with a highly estrogen sensitive tumor needs to put things in perspective.  This drug is cutting my chances of going through this again by a lot.  Constipation is not cancer. I try to remind myself of this when I'm struggling.  Cold comfort, but good to keep in mind.

I took tamoxifen for 2 months.  I had bearable hot flashes, and not nearly as bad as some ladies experience.  The part I could not live with was the depression and sleep disruption. Really crazy, really bizarre dreams that would startle me out of sleep.  I was waking up almost every hour.  I developed the worst depression!  It was awful!  I am usually a happy person and not depressed, but this was a severe case of tamoxifen induced depression.  The only time in my life that I have ever had this type of depression was while I was on the tamoxifen. I was so moody, cranky,b!tchy, irritable, mean and miserable.  It was a bad case doom and gloom, very dark!  I got to a point where I couldn't even function.  It was so bad for several weeks, I didn't get up or get dressed, I  just stayed in bed all day.  After 2 months of going out of my mind, I stopped taking it.  I am sleeping very good again and feel SO MUCH BETTER!  Thank goodness, the depression has lifted!  Tamoxifen was cruel to me!  

I am dreading this.  I am ER99%/PR98%.  I know I have to take it.  My MO appt is 1/06 for the results of my OncoDx.  I think that if I do not have chemo as a result of OncoDx, he is going to start my Tamoxefen.  Is that right?

I have my first TE fill on 1/11. 

Sounds like January may suck.

SheChirple, it will depend on your menopausal status, of course, but Tamoxifen is standard treatment regardless of chemotherapy for ER+ tumors.

Having spent quite a bit of time on the boards, I realize I'm becoming sort of an "old timer".  I wanted to share with you what I hear, perhaps it's helpful.  Every few months, a topic on Tamox or AIs kick up, and a discussion on the variety of SEs ensues.  People get upset, I did.  And I started dreading the drug.  Perhaps it's helpful to let you all know that I have a lot of friends and family, past and present, who have been on this medication.  None of them have had bad SEs.  In fact, most have had none at all.

Don't dread it before you start it.  Just take it one step at a time.  I am at the point in my treatment where I've got a ton of days I simply forget about what happened to me.  I have to stay vigilant with my PT, and appointments out the wazoo, but if Tamoxifen were so hard on me, I couldn't be in this place.

This is of course not to discount the very serious SEs that do happen, they do, and I know it from personal experience.  But the vast majority of patients can take it, and deal with the SEs for the wonderful protection it offers against recurrence.  Someday soon, this will be in the rear view mirror for you, too.  It took me a while, but BC doesn't "have me" anymore.

I had a really rough time with Tamox, and the insta-menopause that chemo put me in...I had a rough 6 months....I am 2.5 years into it now...I take acidophilus pearls daily for the constipation and try and stay hydrated. I take 10mg twice a day, one at about 10 a.m. and one at 10 p.m. My Oncologist thinks it does not make a difference, but I feel better. I always make sure that I have the exact same Tamoxifen with each refill because I have adjusted to the side effects. My weight was tough to manage initially...but now I find if I watch and work out, I can loose....My Oncologist wanted to switch me to one of the AI class of drugs after I was 2 years post menopause...but the difference in longevity was too minute for me to think about getting used to a new drug all over again right now...Taking it two years is better than not at all...3 is slightly better...4 to 5 and beyond has minute % of value according to some studies...as long as I feel okay I will take it...my hair thins some, but I have thick hair...my nails are not great...but okay....the belly fat so far is now gone thanks to the DIEP recon and lipo I had this year...

Bren - Our stories sound so similar - I tried Tamoxfen on and off for a year - every doctor said to take it - gynecologist, radiation oncologist, hema-oncologist, surgeon - but in the end it was too awful.  I couldn't describe how it made me feel to anyone but it was so awful I've stopped for good and just hope that I'll be o.k.  I had DCIS Stage 0 and I'm not sure that all of the side-effects are worth the pain of feeling like crap all the time.  My hat is off to all of you ladies who have stuck with it and feel fine.  I have five friends who took it and they all felt o.k. - no problems at all.  They've all passed the five-year mark and they're all healthy now.

There are many of us women on the "Bottle O' Tamoxifen" thread that started our journey cutting our pills in half and taking half in the morning, then half in the evening.  There have also been discussions about different manufacturers (I've always had Teva) and I've never had any SE's to speak of.  It's usually written somewhere very small on your bottle.  It's a very busy and useful thread for anything related to Tamoxifen.

I had no side effects at first, then terrible hot flashes for a few weeks, and now I'm back to no side effects. I'm posting so that other women can see the range of SEs for those of us on this drug. For ome of us, it's really no big deal and may give us added insurance. I think everyone who needs that insurance should consider giving it a try, just to see how their body reacts. There are plenty of women who do just fine but unfortunately they do not come on here to post as often. But I've met several women in person who did their 5 years just fine and I sure hope to be another one. As several others have said, give your body time to adjust and your SEs may disappear. Consider eating some All Bran Bran Buds cereal and aiming for 5+ servings of fruit and vegetables. Try a Fiber One granola bar next time you want a chocolate bar or regular granola bar - they make some that have only 90calories.

fast question, if you have a shot why do you have to take another med?  I would be happy with a shot and that was that.  thanks

Terry I will reach my 2 year mark on Tamox in April of 2012 and the first few months were horrible for me.  I had constipation which I took pills for daily and the headaches were horrible.  I think it took at least 4 months to notice the SE's diminishing.  I am now having other problems later on into this journey which I feel is Tamox related.  My advice is to stay on it as long as you possibly can and I do believe that within time your body will adjust and hopefully you will nip alot of the SE's.  I too was told by my doctor that constipation is NOT a SE, in fact anytime I ask about anything it is completely dismissed and to make me feel like I am a hypochondriac.....anyways, Archpurple was right pop onto Bottle of Tamox.  The ladies are great and will jump in to help you immediately.

Happy New year and hope your SE's subside.  Hugs!

Is it just me? I have had a few of the side effects mentioned but to be honest with you....the one that bothers me as much as any of them is what it has done to my skin. I am 52 yrs. old and have always looked pretty good (and I'm not saying pretty) for my age. My skin has aged unbelievably...its getting all wrinkled and like tissue paper thin! It didn't look like this through my chemo or radiation, didn't start looking like this till a couple of months on tamox I don't mean to sound shallow as I know a lot of women on here have far bigger issues. Can't imagine what I'm going to look like after 5 years. I hate this drug. Guess I'm wondering if anyone else has noticed this.

I just wanted to chime in my own 2 cents. I dreaded the thought of starting this drug and delayed doing so for nearly 2 weeks. When I asked what to expect, the Onc only said "hot flashes.". After reading the literature, I found there were many more SE's. I was scared to death and really psyched out about it. I decided that if it was unbearable, I could always quit. I finally decided to jump in and start on Dec 7th (isnt D-Day anniversary appropriate?) However, so far, I haven't really had any major issues. I split my dose and do 10mg in the am and pm. Maybe, it's still early. I may still be in for a rough road......



I am sorry some of you are having a rough time. It seems there aren't many options if you are pre-menopausal and heavily ER positive, like me. But, I wanted to speak up for those who are afraid of starting the drug. You might not have any major issues and won't know until you try. Good luck!