Thursday, June 3, 2010

More on Tamoxifen Side Effects

In a previous post, I shared with you that I was experiencing a little tamoxifen rage, euphemistically called "mood swings" by my oncologist.

Let's describe some of the other side effects that have popped up since then, shall we?

Along with the aforementioned tamox-rage, I also seem to be experiencing the inability to, shall we say, STFU. I don't know what's happened, but I've turned into that little old lady who says whatever the hell is on her mind without regard to how anybody else is going to take it. My thoughts come straight out of my mouth, without any stoppage. That might be cute, even admirable, when you are 95 and non-threatening in every other way. Hearing granny say, "Hey you fucking kids, get off my lawn" is cute.

Hearing your school secretary say it? Not so much.

Speaking of a little old lady, a few months ago I was a vibrant middle-aged woman who looked younger than her age. Now, I'm a hag. Literally. The skin is starting to hang off my bones. My arms look like they are melting. The tamoxifen is sucking me dry, and I've even gotten an (ahem) lady infection.

I've aged ten years in two months and am afraid to see what will happen in another two. I used to look at old-fashioned, 50's era photos of women my age and feel pity. They dressed like old ladies, they looked like old ladies. You know that your grandma, when she was my age, was wearing sensible shoes and a baggy housedress and baking cookies. Not me. I was glad to live in this age of Kim Catrell where I could still wear 3 inch rise jeans and five inch heels and eat salads with my girls. I now can't wear heels (more on that later) and I am seriously considering a pair of elastic waist jeans.

The tamoxofin may be sucking me dry, but it's also making me sweat. The hot flashes are not really flashes of heat; what a misnomer that phrase is! I just don't feel hot - instead, my brain seems to have a complete inability to regulate my body temperature. One second I'm freezing to death (and it's 80 degrees outside) and the next second I am boiling and sweating. I've never been a sweater so it's very disconcerting to find sweat running down my plastic cleavage (and my shins, and my forearms). All day long, every 15 minutes, I switch from boiling to freezing. One second I'm huddled in a blanket and the next second I'm ripping off my shirt. (Oh, THAT'S why it's called flashes!) It's like season five on Lost, where you flash from year to year uncontrollably. Only, without Josh Holloway.

Because of tamoxifen, my poor brain won't regulate my mouth or my temperature.

Why can't I wear heels, you ask? You know how I love them. Well, I ache. I ache all over. I ache from head to toe. My bones hurt. My hips hurt. Walking in heels makes my hip bones feel like they are rubbing up against each other. Even my ribs hurt.

The muscles around my bones hurt and my back really hurts. I have one spot in my back that is particularly painful, and that seems to be the part of the spine that holds you upright. So, sitting and standing - hurts. The pain is like those growing pains you had when you were a kid - you remember lying in bed and feeling that deep, horrible ache? And, your mom would put a towel in hot water to warm it up and wrap it around your legs? I have that everywhere, all day long.

I take a hot bath each morning to ease the pain and get my muscles loose enough to move. I am still on part-time hours at work precisely because it takes me so long to move in the morning. I fear for the day I have to leave the house at 6:30 a.m.

Getting up won't be a problem though, because I can't sleep. Who needs sleep anyway? Certainly, my cat is happy with my insomnia because she gets to be petted all night. I'm sometimes so tired I fall asleep after dinner but even then, I can't get a real nap in. I wake up in ten minutes like I had a night's worth of sleep and then, you guessed it, it's hard to get to sleep at bedtime. If I do sleep, it's in brief increments and I wake up throughout the night, typically when I try to rollover and all the sheets are stuck to me because I've sweated through them.

I can't shut up, regulate my body temperature, or sleep and I hurt all over. Thank you, Tamoxifen.

Tamoxifin is an anti-cancer drug given to pre-menopausal women. It is an estrogen blocker. My cancer "feeds" on estrogen and this medicine takes away the ability of any remaining cancer cells to grow. I am supposed to take it for five years.

I can tell you after two months, that I won't make it those five years. Something is going to have to change. Dr. B, you are warned.

And these days, when I warn somebody - they'd better watch out.

Oh, and by the way, after reading this post, can you tell?

Tamoxifen is making me just a tad cranky.


Hey you kids!! Get offa my FUCKING lawn!!!

75 comments:

  1. Have you talked to your Onc about switching to an AI at some point down the road?

    I have also heard that Neurontin and Effexor have been very helpful for hot flashes! (Mine are still pretty mild and only at night, thankfully..)

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    1. Neither work (Neurontin and Effexor--tried them both). AI's were much worse than Tamoxifen. Did she mention vaginal atrophy--this one is wonderful and bouts of anger?

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  2. Hey Walt Kowalski :)
    Ya know I've been one or two steps behind you in this journey - I see my onc on 10 June and she'll probably start me on tamoxifen then (I had a break in meds for surgery). I dread facing these SE's for 5 freakin' years.

    And like you, I was one of those people who was lucky to look younger than my age. I've aged incredibly just on chemo - how delightful that tamoxifen will exacerbate that!

    I hope your SE's lessen up!!

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    1. I am scared to death of this. I was just told my Breast Cancer came back and now the doctor told me over the phone that I will be taking Tamoxifen. The scary part is looking like an old lady. I'm very vain. I love my high heels and looking younger than I do makes me feel good. SCARED TO DEATH! I'd rather take chemo. I did that 7 years ago and I was sick but my skin was so clear and vibrant. THanks for sharing your story this help me know what I'm in for.


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    2. So Scared. I Googled "will tamoxifen cause dry skin" and I got my answers and more. It was very formative but now I"m not sure what I want to do. I've had 4 different cancers Breast Cancer twice, thyroid Cancer and Ovarian Cancer. Now they said, my Breast cancer has come back and they want me to start tamoxifen. The doctor said, it's about quantity not quality. I don't feel sick, I feel good, and I"m told I look good. I don't want to feel sick and I for sure don't want to look old. THanks for the information.

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    3. It's not 5 years anymore--after the ATLAS study was released, it is now10 years of misery. Did she mention vaginal atrophy--that's right, the skin inside your vagina exists no more.

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  3. I think you still don't look a day over 78.

    Isn't it a crime about the heels? I love big shoes, and these days I can't even take advantage of the flat-sandals craze because I need more support. Neuropathy, plantar fasciitis, whatever - fitflops are the most stylish I get these days; I'm afraid I'm going to have to start wearing sneakers with everything, a la every granny on earth. (Well, at least the sneaks will be getting some use then.)

    Chin up, babe, at least you haven't gained 30 steroid pounds... plus, think of the savings on heat in the wintertime with those hot flashes! Your hubs can rent you out for frosty football games as a handwarmer.

    XOXOXO
    Sarah

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  4. I actually just got off tamoxifen after 2.5 years. I did survive it. I am now on Femara and it seems to have different side effects. Cancer the gift that keeps on giving. But take back the f*cking side effects.

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  5. At least rage can be productive in a blogger:)
    I so get it about the old-lady-before-my-time thing.
    My husbands nearly 98 year old grandmother remarked on the same thing.
    And I totally get it about the heels. I have had serious foot problems before bc, my foot doctor actually said, "Now that you have cancer, the foot problems probably seem like nothing."
    Wrong!
    I still want to wear heels again. I live in NYC and I am consumed with envy when I see women trotting along in "rich lady" heels, while I shuffle off to Buffalo in rubber Ecco sandals.
    I don't envy people who don't have cancer, just people who can wear Laboutains.

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  6. I don't take tamox (I was triple neg) but I've been menopausal since last July when I started chemo and I just had all my girlie parts removed so there's no going back for me now. The hot flashes do lessen in frequency and intensity over time as do the other symptoms. Our bodies go through this period of shock from losing the hormones so abruptly and then things settle down. I really doubt you'd go through it the entire time you're on the drug - but of course ask your doc what they've seen with others. I hope it gets better for you. I will tell you though, if there was a herceptin or tamoxifen equivalent for us triple negative ladies, I'd take it in a heartbeat and I would give a fuck about aches and not being able to wear heals. Sorry, I guess the lack of ovaries makes me as blunt and unfiltered as your tamoxifen induced lack of estrogen. ;/

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  7. (wouldn't give a fuck - not "would") ;/

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  8. I had the same side effects, and found 2 fish oil capsules took care of the dry and papery skin. A Chillow, if you don't have one, is great for cooler sleeping. Hope you feel better!

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  9. Make that "2 fish oil capsules each day."

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  10. Boy! Have you accurately described having all of the estrogen sucked out of your body! I know how you feel. I was on Arimidex for 5 years, and stopped almost a month ago. It took only 3 days for my body to start looking and feeling better. My skin no longer looks like my grandmother's, and every ache and pain has now disappeared. Part of me is afraid to be off of Arimidex. I think I would have taken it forever, if they'd let me, because now nothing is patrolling and stopping the estrogen. Good news & bad news:)

    Best to you,
    Brenda Coffee

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    1. did your wrinkles really improve when you stopped arimidex?

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  11. Brenda,

    It's very encouraging to hear somebody recovering from an estrogen-blocker type drug. I thought all these changes were permanent. I also didn't mention how my skin just seems to slip open now from being dry and thin. Everything gives me a paper cut.

    Julie, I know I'm lucky to have herceptin. Without a doubt. But, they are working on meds for you triple neg gals too and pretty soon, you'll have your very own "herceptin." And,keep in mind that chemo works better for you,too!

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  12. I'm on Tamoxifen too - I started mine back in September/October (don't remember the exact date). I had horrible joint pain in my knee to the point where I had an MRI on it, but as it turns out, the pain was the Tamoxifen. The good news is that now that I'm 7-8 months into it, the knee pain has subsided and I'm not quite as dried out as I was. I'm almost feeling, dare I say, NORMAL, again.

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  13. Ohhhh, yeaaaaah. Funny that doctors don't seem to get that Tamoxifen may "save" our lives by starving potential breast cancer cells, it also can ruin your quality of life! I went six months trying to deal with hot flashes (nuclear blasts), no sleep (or sleeping for days but never feeling like I slept), rage - anger - frustration - depression, and finally, oh-lawdy, finally! the ongocologist's assistant came up with a way to deal with it all: Lexapro (an antidepressant) that helped with the hot flashes and rage/no sleep/sleeping all the time and Lunesta so I could get some real sleep (rather than wake up every couple of hours sleep). I can't tell you how much that helped. I've weaned myself off the Lexapro (look out! Momma ain't on her drugs no moh!) but kept the Lunesta because I can do without being a sweetie but I can't do without sleep.

    Ask your doctor (perhaps the oncologist?) whether they think this combination might help you. No, you probably aren't depressed but for some reason the Lexapro really helps with Tamoxifen side effects. Who knew?

    And what are your Vitamin D levels?

    Get another opinion from another plastic surgeon. I'm not liking what I'm hearing but it's not my body and he's not my doctor. HE should have called to see if the implants had arrived and HE should have called you beforehand. It sounds like he's blaming on the hospital what he failed to check up on.

    And I hope your Fourth of July goes as planned!

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  14. Six of one ... and half a dozen of another. You have those symptoms ... and I have similar ... due to chemo-induced-menopause! Hot sweats ... cold driips ... all disgusting ... and if you don't agree with me ... then I am prepared to argue with you whole-heartily ;)

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  15. I've been on Tamoxifen for over a year. My major symptom is that I "Sweat" very frequently. I go to the grocery store & halfway through I'm dripping wet. It's extremely embarrassing for me. If freezing cold in the supermarket, but i'm hot as hell. I already sweat easily so when you add the tamoxifen on top of it it's like a double whammy.

    I am also on Effexor which helps with the night sweats. I take the tamoxifen & Effexor at night around 6pm.(That's why I take it at night to help with the sweats) However, the daytime doesn't help cause the effexor wears off. Can't have it both ways I guess.

    Also, I don't feel "Sexual" anymore. I use to feel very sexual quite often & it's gone from a 10 to a Zero.

    I also have more of an appetite. I know i've put on atleast 10 pounds. Does anyone else suffer from these symptoms?

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    1. In 2005 I started a course of Tamoxifen, I managed 4 years of the 5 year course because the sweating was so bad I couldn't handle it anymore, I thought things would get better but, oh no the sweating has actually got worse as the years have past, its now almost 9 years since diagnoses and although i'm cancer free life is hard going. Tried everything from anti-depressants to herbal remedies, just seems to be no relief, any magic cures out there? :(

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    2. Im on second month of taking tamoxifen I cant stick these sweatsmy bones are killing my eyes are constantly running a weezy chest and I to dont want sex either please tell me all these symptoms go away dont think I could last 5 years xx

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    3. I have been on tamox for over a year. All the same side effects as people mentioned above,and no sex drive absolute zero. And I have gone from age 40 to 60 in the blink of an eye. Dry skin, saggy skin, its just falling off my bones, wiltng, but now to top it off, the rage has come. Rage so bad I have actually scared my self, I turned into a mad woman.
      I thought of going off tamox but am too scared about a recurrance. So I guess I'm hobbling along w joint pain, skin falling off, vagina totally broken, seriously, and crankier than ever. Hmm. I keep trying to be positive, the tamox is great and protecting me, I can handle this. But can those around me handle me? I'm not an angry person, but I'm afraid I'm becoming one. I also don't feel the Dr is very understanding, I know it could be worse, but some support for recovery and side effects of tamox, even acknowledgement from Dr that yes, this medicine will indeed turn you into a cranky old lady overnight. But I understand they have more serious cases to handle. I get that, at the same time though I want them to acknowledge what I'm going through is real.

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    4. I've been on tamoxifen since February this year and oh boy the sweats are killers, I talk I sweat. I'm on lexapro to and it doesn't calm my sweats but it is lighter than it was when I was on effexor I sweated like a slave in a cotton field no pun intended. The anger I don't have I just find myself crying alot and not wanting to go out I'm public alot. No sex drive bladder leaks gained 40 lbs and I barely eat, still suffering with fog brain(chemo brain) bones hurt everything hurts and the Dr.tells me you'll be OK smh. It's no joke ladies the pain that breast cancer takes your body through, some are fortunate I guess bit theirs no sugar coating this for me, I hurt all over, my mind, body and soul.

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  16. I have heard sexual problems are another SE of tamoxifen. But, how can any of this not be? It takes a while to get back to normal after the assault on our bodies.

    As for the sweating, did you see Sex and the City where Samantha had to give a speech on breast cancer, and was sweating so much she took the wig off on the podium? It was great.

    Nothing makes me gain weight, but, I have heard of many women who have gained weight on this drug. It slows down your resting metabolic rate, so you have to eat less to maintain your normal weight. There are calculators online where you can put in your statistics and it will give you a resting metabolic rate for after menopause, and give you an idea of how many calories you can eat.

    I'm very nervous about those SSRI anti-depressants and want to avoid them. Somebody gave me paxil for migraines years back, and while I didn't take it very long - it was very awful to stop taking. Never again will I willingly put myself through that.

    I found a new alternative remedy that has been studied and published in real medical journals. It's called ERr-731. It helps with hot flashes and with bone pain, even. I am going to talk to my oncologist in August next time I see him, and if I get the go ahead, I'll give that a try.

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  17. DITTO to Everything!!! I'm not taking tamoxifen, but I have surgically induced menopause because I was triple negative and BRCA2 positive.

    I also used Lunesta for quite awhile - though less so now. I highly recommend a sleep aid to help deal with the night sweats. Everything is a little easier to handle when you've had some sleep.

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  18. My post chemo treatment included Herceptin, which the medical community told me would not cause any side effects. BS to that. I also started taking Tamoxifen in about November after trying to take Femara which has terrible side effect of bone pain. I couldn't take it and insisted on taking Tamoxifen even though I was told "it wasn't as good" and the aromatase inhibitors. Anyway, the bone pain went away almost immediately. The side effects that are really bothering me now are sleeplessness, hot flashes or power surges as my boyfriend likes to call them and muscle weakness and fatigue. No matter how much I exercise, I experience the weakness and fatigues, but not all the time so I think I can live with it. I sweat so much that I lose electrolytes and have started eating bananas and drinking gatorade to help. I take Temazapam for sleep, Effexor for hot flashes and depression/mood swings and calcium to help keep my bones strong. I'm going to try the fish oil to see if it helps me with dryness. I'm so grateful to not have breast cancer right now that the fear of it returning keeps me taking Tamoxifen. I hope that research will turn up more information for us all. It is a barbaric thing to happen to us. Also, my own goals are to be as creative, loving, kind and communicative as possible. I have taken up music again in my life, even though I'm now still a young 68. It's for my own pleasure but I don't care. I now have a mic, electric piano and amps. I live in the country and I will do what I want until I can't do it anymore. Dealing with cancer and my husband's death at the same time caused a huge change in me and if, as I read, you are saying whatever comes into your mind, do it. It's good for you! We women have been quiet and living for others for too long. It's time to take care of ourselves.

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    1. I have lost my husband, also...and diagnosed again with B/C 16 years to the week after the first diagnosis. Good to see your fighting spirit.

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    2. Good luck anonymous your story sounds like mine.
      My philosophy is to whinge a lot and just get on with it.

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    3. I lost my husband in Nov 2013 and was diagnoed with left breast cancer in Aug 2014.

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  19. Another aside. Tamoxifen has not changed my sexual functioning at all that I know of. Anti-depressants and hot flashes and lack of sleep do, but I am still functional. YAY!

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  20. No one mentions neuropathy. I have 2 fingers( thumb and pointer) on each hand that are mostly numb, and have been having wicked "pins and needles" in both hands! Bone and joint pain, absolutely! Hot flashes! They should come up with a different name. Nothing like sweat rolling down your arms and legs and then 2 minutes later be freezing! Been on Tamoxifen since September. Everyone says the side effects lessen, but since I don't sleep without the aid of Ambien, I lie awake and wonder when will I feel 45 again! CANNOT WAIT FOR 2010 TO BE OVER!

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  21. Hi. I can sympathise. I have been on Tamoxifen since 2008. The brand that gave me the least side effects, Nolvadex, was discontinued in 2010 because it wasn't profitable enough. The side effects I have put up with are Migraines ( I have to take a pain killer with the tamoxifen each day so I only have a daily headache), failing eyesight ( I taught and designed embroidery also my hobby, which I can't do anymore due to my eyes)low mood, numb and tingling arm and hand on the arm were my lymph glands were removed, loss of grip in that hand, Chemo gave me asthma ( never had it before) but Tamoxifen agrivates it. I haven't had a decent sleep due to approx 16 + hot sweats each night and fluctuating hot sweats and freezing shivers during the days.It just runs down my back and front and makes me feel sick or faint at times.I get dreadful fatigue. There are days when I feel that I have to drag my legs and feet if I want to move they feel so heavy and I feel so weak. I put on 2 stone in the first 3 months of taking Tamoxifen. I have since lost a stone but the extra weight won't budge despite slimmers world and exercise, I say it won't budge, but if I stop Tamoxifen for 3 weeks or more it drops off. I usually stop tamoxifen if I go on holiday because I want to enjoy the break I have paid for. My skin cracks and I have developed a bladder weakness ( also a symptom of tamoxifen ) that wakes me up or stops me enjoying long walks. My mouth is permanently dry and my teeth have weakened, a few have crumbled. Because of all these side effects I am seriously thinking of giving up Tamoxifen, especially after reading 'what the doctors don't tell you about tamoxifen ' on reports on the web.

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  22. I am taking prozac and cymbalta for depression already. I get herceptin every 3 weeks and take tamoxifen. Anxieity, tears, depression and emotional wrecked state have taken a toll on my life and my husband. Thankfully, my kids both in college, are able to avoid most of this. Is it really the 2,3 or 4 drugs making me crazy/

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  23. Boy u guys make me feel bad for winging. I have been taking Tamoxifen since June 2011, I am soooo over the sweeting, it's 24/7. No libido, no sleep, I doze in the chair or in front of the computer. I was lucky NO chemo, just the tamoxafin, suppose to be for 6yrs. I am so over it when I go back in December I am going to discuss stopping it.

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  24. Ladies, I don't mean to applaud your misery but thank god for that! I'm not going mental! I have all the side effects, had chemo, radio and now the tamoxi. Just over a year in and it's hard work. But people expect you to be amazing because you're out the other end and well - well, sort of... Struggling with people not actually seeing what I'm going through any more. Feel like I'm fighting and fighting and there's just no consideration. What can I say? I'm tired? I'm hot? I'm cold? I'm wrinkly and dry? Just sounds daft :(

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    1. I just discovered this blog, and I now know that I, too, am not going mental! I go through these awful bouts, almost every day. I am volcanic, cry and yell, and have no filter on my mouth at that time. It can go on for hours. I'm a survivor, BUT every day I take a pill to help me survive....so I never forget my breast cancer, either. I'll switch drugs in January, for the next 2.5 years. I'll probably be as big as a house, with that one!

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  25. I was always a positive, happy-go-lucky girl. Tamoxifen has really put a strain on everything that I like about me! I'm having a hell of a time keeping in my size 2, but I'm a performer - so more than just wanting to stay my size, it's part of my career. The moods? HOLY CRAP. Each time I hit a tamoxirage session, I swear to hubby that I can't take this sh*t anymore. However, the thing that is helping me tremendously is acupuncture with someone who deals only with cancer patients. Hot flashes - they were terrible at the beginning… now it's rare when it boils up, usually at night, and all I think is "Great. Now I have to wash my hair". So, I would totally recommend trying that out. Otherwise, the tamoxifen SUCKS. But, I want to live, and so far, I'm alive. It's just trying to prevent all the crap from happening that makes life a questionable event. Hang in there!

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  26. Thank God I'm not going mad!!
    I'm almost into my third year, joint pain, cold night sweats, thinning hair, and very volatile (like a permanent PMT) but hey on the plus side, still enjoying sex and find it easy to loose weight.

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  27. I'm laying here in bed crying from joint pain and lower abdomen pain, which I can't think is anything but tamoxifen. I'm in month two. The hot flashes are relentless, I snap at my son, and I'm miserably depressed. I'm 38, have lived through ovarian and now breast cancer, but some days the tamoxifen makes me feel like my quality of life is so poor, it's not worth it. I'd say I'm glad I'm not alone, but I'm sorry you all are going through it too. I feel like my cancer nightmare will never end some days. And as vain as it sounds, as a single woman, I wonder if I'll ever find someone knowing that my looks are headed for the toilet....Sorry for the downer post. Just feeling lower than usual right now.

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  28. Shit, I don't swear. I am supposed to start tamoxifen. I went through mastecomy...finished chemo on Jan 13. Nurse keeps calling me to see how Tamoxifen is going...haven't started it yet. Shit. Not sure if i will....truly, i dont swear. Matter of the mind right....LOUISE HAYE (Hay)...read her....maybe it will help...i dont know since i have not started the damb pill yet

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    1. I am enjoying this blog but not the Tamoxifen side effects. Do you think I can convince those around me that it is the Tamoxifen that has taught me to swear so often? It isn't ladylike..... bugger it.

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  29. OMG! I am soo happy I read this blog today. I have been on Tamoxifen for 3 years, I have 2 more to go. I am having such a hard time. I have a problem with irregular periods. I am scheduled to have a D&C this month to scrap the lining of my uterus. This is going to be my second D&C since on Tamoxifen. I also have joint pain, vomitting, severe hot flashes and night sweats, leg numbness, I want to go to bed by 5:00pm everyday, anxiety, insomnia and no appetite. I went off of Tamoxifen for a month and by the third week of being off of it I felt Amazing!!!! I can not wait till 2016 when I will be off of this stinky medication.

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  30. Was on Tamoxifen for 5 years as a preventative--hot flashes were bad and I gained 50 lbs. I have been off from the meds for a couple years and my immune system is shot, I have psoirosis and a constant yeast under my breasts and groin area. Don't know if I would take it again.

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  31. I found this Post while Googling "low body temperature and Tamoxifen." My body temperature has been averaging between 95 and 97. I was actually relieved to see I'm not the Lone Ranger, as both my oncologist and PCP treat me as if I am just a "hysterical female" and all these side effects are in my head! My PCP put me on Zoloft and told me if I weren't so "anxious," then I wouldn't be having side effects. It's the other way around, of course.
    I started taking Arimidex in September 2012, switched to Aromasin three months later due to side effects, and have been taking Tamoxifen for the last 3 months due to the side effects of the Aromasin. Unfortunately, the side effects have been pretty much the same with all three drugs, albeit a bit less joint pain with the Tamoxifen: insomnia; restless leg syndrome of the whole body; headaches; yeast, bladder, and urinary tract infections; dry skin; hair loss; word aphasia; memory loss; impatience and irritability; constipation; depression...I have gone from being a robust, happy 60-year-old to a debilitated geriatric in 18 months, and like a lot of other women, question whether taking this drug is worth it. Five years is a long, long time to feel so bad! I would be very interested in knowing whether these effects become permanent, or will they "go away" when one stops taking the drug. Thank you!

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  32. I am relieved to know that I am not the only one having the same side effects to Tamoxifen that I had with Arimidex. The symptoms took longer to occur with Tamoxifen and are not quite as debilitating as with Arimidex. But, I am disappointed...I have a new granddaughter and I am sad that this drug is making me feel so old and tired! I am 55 years old and up until now, was able to run circles around most women half my age! I feel like I have lost my spunk. Every time I talk to my Doctors about it, they look at me like I am just wining ...and they make me feel petty for complaining when this drug decreases my odds for reoccurrence by such a significant amount. I get it...and I am very grateful that I am cancer free. Still, It really stinks to think that my granddaughter may be starting kindergarten before I feel like myself again.

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  33. I am so glad I found your blog. I have been on Tamoxifen since July 2014 and the side effects are killing me. At first I thought its all in my head and that it would get better. Its now October and it hasn't gotten better. I have the hot flashes at night, forget about getting a good nights sleep, but the joint pain and cramps in my thighs and legs are the worse. I am really hoping that this gets better because as of right now I don't think I can survive five years of Tamoxifen. The mood swings are horrible, sometimes I just think I am going crazy. I feel so alone as I am going thru this but I know that there are countless of others going thru similar experiences. Right now I don't have cancer in my body but having Tamoxifen in my body is no picnic either.

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  34. I'm in the same club too! Have been on Tamoxifen since July and am just about at the end of my tether. SE come and go in waves apart from the sweats which for me are all day and night. Leg cramps are usually a couple of nights a week, nausea has gone from daily to a couple of times a week, mood swings are random, memory is awful! my hair has thinned considerably and I could sleep the clock around. I have not had a period for 3 months either. It is affecting my work and I know my work colleagues must think I'm crazy when they ask me something and I truly can't remember, I am grateful that medicine has come this far and is giving so many of us a chance to survive but I do think of giving it up just to feel normal for a while!

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  35. I started tamoxifen on Sunday after 2 second opinions AND being prescribed an AI from the original oncologist that I never filled. Night sweats started right away. I'm hoping they go away. Nothing else yet but waiting for the other SE's to start.

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  36. oh thank gawd for this blog. Now I know I am not insane even though I feel like I am. I keep telling my Dr. and Oncologist that Tamoxifen is evil and the side effects are taking a toll on me but they don't listen. My oncologist talks about tamoxifen affectionately like its his baby and says "oh no dear it can not be the Tamoxifen". Good grief, are you for real... of course its the f%&^$*& Tamoxifen. I always knew these side effects were caused by the devil but now that I have read this blog I have triple confirmation. And well, I may have to take this shit but at least I don't feel so alone.

    Thank you But doctor... I Hate Pink, for letting me share and feel better, xo!

    I used to look young for my 49 years until the Devil got a hold of me. He appeared first in the form of a tumor/breast cancer and then morphed into Tamoxifen and is ruining my life.

    Pre-cancer I used to receive so many compliments on my skin and how good I looked for my age but after 1 year on Tamoxifen I look like an old hag and I am simply devastated. I used to be a fitness trainer and in very good shape and now 1 yr since starting tamoxifen and I have gone from 5' 6" tall and 128 lbs down to 110 lbs and have lost all my muscle mass. No matter how much I eat I cant gain weight, my skin just hangs on my bones. My once super thick hair is now thin and more falls out every day. My poreless skin is now moon cratered. I have not had a dry nights sleep for a yr. Every night I wake up because I am dripping in sweat and my hair is soaking wet. My vagina feels foreign to me and my memory is shot. I dont even recognize who I am any more then there is the Rage..OMG,, the rage.

    The other tday a woman mistakenly parked in my private parking stall which was really no big deal because I have 2 stalls and 1 car is in the garage so I didn't even need the stall she parked in but for some reason, all of a sudden it made me angry and I went totally ballistic on her for parking there. I acted like a lunatic, yelling and screaming.. WTF, and then long story short she told me to chill out and called me an old lady. That stopped me dead in my tracks. Old Lady? It's true and I just want to cry.

    For all the doubters..can't be the Tamoxifen you say. How about you take it for a while and get back to me...until then STFU : )

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  37. I'm glad I found this blog. Stated tamoxifen in January 2015. Told I had to take it for 5 years. I thought to myself....really?? I'm not sure I can take it for 5 months, let alone 5 years. Too many issues to list but things are a little better than 3 months ago. I'll keep fighting and taking this evil drug because I want to live. It's good to know I'm not "really" crazy just yet.

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  38. Thank you--wish I'd found you 5 years ago. Almost rto the end of my 5 years and I'm really ready ready to stop--aches, (no it's just coincidence that your knee hurts) mental slug, no libido and staying positive, but sometimes just don't--oh, yeah, emotions all along the gambit. But now, ending the med, I'm scared that the cancer will return. Not sure which is worse!

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  39. I just found this blog and read the posts covering a 4 plus year period. I started on Arimidex in 2013 and had most of the side effects described here. After a Google search indicated that a switch to Tamoxifen may solve the problem, I talked with my onc and switched. I have to say that Tamoxifen has been great for me. I have been on it almost 2 years now with 3 to go. However, I am having one issue that I suspect may be a side effect - - sweating but not the night sweats described here. I suffered a heat stroke at age five and have not sweated normally or handled heat well since. This summer has been hot and I have been sweating - not just on my forehead as usual but ALL OVER and it just pours out of me. I just drip with the least exertion or exposure to heat. I was hoping to find out if anyone else was experiencing this.

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  40. You said it perfectly! I'm going on 2 months on tamoxifen after my double mastectomy. It it killing me! I'm down to 88lbs, I throw up everything, I go from burning up to freezing, I have rashes breaking out and my body just hurts. I do not think I will last 5 years on this.

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  41. My biggest complaint after being on it for just over 3 months is extreme tiredness, headaches and sometime feeling a little depressed, sorry for myself.....not sure what the answer is.

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  42. Took me time to read all the comments, but I really enjoyed the article. It proved to be Very helpful to me and I am sure to all the commenters here! It’s always nice when you can not only be informed, but also entertained!
    mattress that is cool

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  43. Like everyone here, it's a source of relief to know that others are going through what you're going through and they believe you. I mean every freaking time I sit down, it hurts to get back up and I wouldn't know how to deal with a whole nights sleep anymore. My question is, how to respond to the multitude of people that say "you ought to get off that shit - or - I wouldn't take that shit". When every single doctor says you should be on this shit...

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  44. Amen preach sisters. Scary isn't it to think of not doing everything your Oncologist says to the letter. But I just can't help thinking, "I'm taking something that is hurting my body... this is wrong" I take 5 mg of Tamoxofin. I'm prescribed 10. With 5mg I need help getting up from a chair and isolate myself because I'm such a bitch from the physical pains and mood imbalance. I've been looking for a naturopath/oncologist. I know they will argue to balance hormones not minimize. Totally opposing strategies. What's a girl to do?

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  45. I have been on tamoxifen for exactly 1 year. I have been ok with the night sweats and the daily hot flashes-not too difficult to deal with. I found this blog because I was researching my mood swings!! Lately-like the past couple of months-I find myself constantly on the verge of tears and homicidal at the same time!! I have always had a quick Irish temper but lately it's been more like rage than anything else.
    Sigh... glad to see I'm not alone. I have an appointment in a few weeks with my oncologist and I plan to talk to her about the mood shifts but I definitely feel better after reading through this blog!!!

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  46. Anyone find their migraines worse on tamoxifen? Ive been taking it for a mere 9 days and have had a migraine every day for the past 6 days (usually only one or two a month pre menstruation) Take a Triptan to make it go away but can't do this for the next 5 years :( Help!

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  47. I am so with you girl. You nailed it. Thank you for expressing your feelings, I thought I was the only one. And what happened to our sex life? Nita

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  48. Am so glad I found this blog.I'm sitting in my bed frustrated that my temp is 35.6 and I'm sweating buckets.it's now affecting my hubby and I've only been on the tamoxifen for 3 months and I've been told ill be on them for 10 yrs. .help..I feel like I'm a toddler again with my mood swings and my poor hubby and kids don't get it..lol

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  49. Am so glad I found this blog.I'm sitting in my bed frustrated that my temp is 35.6 and I'm sweating buckets.it's now affecting my hubby and I've only been on the tamoxifen for 3 months and I've been told ill be on them for 10 yrs. .help..I feel like I'm a toddler again with my mood swings and my poor hubby and kids don't get it..lol

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  50. I was very happy to find this blog! Every time I have an ache or pain...I think the cancer is back. Scans have been clear but the aches and pains continue. I have changed my diet (no sugar, no dairy, no meat) and I go to acupuncture. I have also been getting massages. I thought it would hurt but they have helped tremendously. I recommend acupuncture and heating pads. Hot tubs have helped, too. Someone else has recommended infra red saunas and I may try that, too.

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  51. i started tamoxifen in january after 5 years on letrozole and i am so tired, used to have so much energy, not now every time i sit down i want to sleep, wouldnt say my flushings are any worse, but thought i would try a ladycare magnet from boots as i read good reveiws, but didnt help me, i cant use any other meds as i had a heart attack when i was 52, now 62 but feel 72

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  52. I've been on tamox for one year. Stage two, no chemo, intense radiation, lumpectomy. Except for the weeks following radiation, tamoxifen has def been the worst part of this experience. I'm grateful, I take it everyday, well most days, because I don't want to die. I am also taking lexapro which has helped tremendously with the rage, anxiety, depression and hot flashes. Unfortunately, not the fatigue, all I want to do is sleep. Tried effexor, made anxiety worse. I have a psych eval coming up soon and I will be picking that doctors brain for ways/dugs/vitamins to deal with these she's. Ladies, don't suffer, get some med help so you can live.

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  53. My doctor is recommending Tamoxifen as a preventative measure since I have a high risk of breast cancer. After reading these comments, I'm not so sure I want to start this. I'm 53 and in fairly good health. The idea of preventing breast cancer is appealing (my mom had breast cancer) but all these side effects are almost as scary. I get bad period migraines and the idea that they might get worse is frightening. Anyone else taking this as a preventative medicine?

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  54. Glad I found this blog, as others have said, I thought I was going crazy since I first began Tamoxifen 20 mg daily 2 years and 3 months ago. I am a very easy-going, calm, positive person who has been athletic, sharp minded and Polly Anna happy all of my life even while dealing with cancer for the past 25 years - Tamoxifen changed all of that. I am an oddity with a rare form of ovarian granulosa cancer. I have had 18 infusions of chemo over the years as this cancer is slow growing and rears its ugly head about every 7 years and then settles down again. In February 2014 my oncologist decided to put me on Tamoxifen because this ovarian cancer is estrogen driven and even though I had an Ovio-hysterectomy 23 years ago,wouldn't you think that would be enough to slow down the estrogen?) he thought Tamox might do some good. 3 days after starting the Tamox, I began feeling very strange. I became lethargic and rubber-legged, weak, angry and fluctuated between bursts of homicidal and suicidal thoughts, it was all I could muster not to be a total bitch which is so unlike my natural behaviour. My hair is thinning out and I don't remember what it's like to have eyebrows and eyelashes. I am pitifully sad, joints aching, leg and torso cramps, brain fog, no appetite, nauseous, spasmodic body and uncontrollable leg jerking and the list goes on but fortunately the hot flashes come only in the middle of the night and I sleep pretty well for the most part. Doctor put me on Effexor which only hyper-ized all of the side effects so antidepressants are not for me as all other antidepressants are known to lessen the effect of the Tamox. The cancer is still present but growing little if any and not troublesome. I just can't take the effects of the Tamox anymore and stopped it today or somebody is going to suffer from this anger I have. I will give myself a rest from this Tamoxi-hell for awhile and hope for the best. Having said all that, my sister was on Tamoxifen for 5 years and never had a single complaint about it. Thanks for letting me vent, I pray for all of you out there enduring all of this cancer and related treatments.

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  55. Thank you to everyone for sharing. Helps me feel less alone and less crazy.
    To calm minds, being comfortable in our bodies and skin...hoping it stays attached, managing the aches, keeping the rage at bay, and to cool nights sleep. One foot in front of the other. Let's keep trying, supporting and Sharing. Thank you again.
    My morning tamoxifen ritual \ toast to myself, Before it goes down the hatch..
    "To Health & Sanity"

    Here's looking at you ladies. Cheers, and down the hatch.

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  56. Thank you for this blog. Had a lumpectomy, chemo, and radiation, with unbelievably bad side effects at each turn. I was on my second month of Tamoxifen and had such bad weakness and pain in my knees that I needed a walker. I am off the Tamoxifen for 2 weeks now and can walk again with no trouble. Had terrible rage issues which also seem to have vanished. What am I supposed to do now....?

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  57. Thank you everyone for your comments it does make you feel less alone. Have been on Tamoxifen for 1 year. Am only 55 but have memory loss, sweats every hour, no libido bad cramps, hip pain, stiff sore hands, ankles but the worst is that I have such severe pain in the balls of my feet and heels that am having trouble walking.has anyone experienced similar pain? Surely there are alternatives in regulating Estrogen?

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  58. OMG I am so thankful to read all these entries, especially this last one. I have terrible foot pain, for the last year, since I switched from Tamox to Femara. Used to be an avid hiker and walker and now have to force myself and take Tylenol to get through it. And although the power surges are not a huge problem, the muscle pain is and the fact that every single thing seems to piss me off. Add in the usual life events of a family and what you can end with is depression. I married a wonderful man who is learning to deal with my utter lack of libido (if there's a negative, I have it, like will go out of my way to avoid it). My five years is up next April and my biggest fear is that they're going to tell me I need to sign on for another five years. Just entered my 60s and don't need to feel like I'm in my 80s any longer! None of us wanted to be in this club. And despite all the utter crap this medication does - I am still fearful of losing the protection. Lose/lose. So disheartening.

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  59. I was prescribed Tamoxifen after a unilateral mastectomy in March 2016. Stage I, grade 2, three tumors. No chemo, no radiation, oncotype 0. Had to take myself off it after three months, even though Gabapentin had been helpful with hot flashes and sleeping. Urinary incontinence, loss of libido, vaginal atrophy, vaginal dryness, spotting, suicidal ideation daily (maybe Gabapentin), changes in vision, repeated eye infections, hot flashes on fire, sleeplessness or interrupted sleep, felt like I had been catheterized. Have been off Tamoxifen for 7 weeks and have just had pelvic ultrasound that revealed thickened endometrium and cysts on uterus. Will have endometrial biopsy in two weeks and will have further testing related to incontinence. I am 60 years old and can't tolerate the side effects. My oncologist would like to insist that I change over to Aromasin, and I have said an emphatic no thank you. Everyone needs to make personal choice based on stage and age and circumstances, but you're NOT crazy if you have been struggling with the side effects. Tamoxifen was not protecting me and may have caused permanent irreversible damage in my particular case.

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  60. So glad for this blog. I have been on tamoxifin for 3 months. I had side effects from the day I started. Bone aches, feet numb and feel like pins when I walk.I am depressed, angry and my personality changes daily. I feel like I have lost myself. Hotflashes, fatigue, nausea. Wow, can't believe these terrible side effects. I almost switched to aromasin, but I heard you can get permanent hair loss. No thanks! My oncologist thinks I am crazy, always complaining. He has not been in my shoes or experienced my pain from ilc breast cancer. Woman who have suffered from breast and other cancers have to ho through hell and keep feeling the pain with tamoxifin. They need to have something natural with no side effects and can block estrogen. I heard they are doing a study on grapeseed extract. Does anybody know of a natural estrogen blocker?

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  61. So glad for this blog. I have been on tamoxifin for 3 months. I had side effects from the day I started. Bone aches, feet numb and feel like pins when I walk.I am depressed, angry and my personality changes daily. I feel like I have lost myself. Hotflashes, fatigue, nausea. Wow, can't believe these terrible side effects. I almost switched to aromasin, but I heard you can get permanent hair loss. No thanks! My oncologist thinks I am crazy, always complaining. He has not been in my shoes or experienced my pain from ilc breast cancer. Woman who have suffered from breast and other cancers have to ho through hell and keep feeling the pain with tamoxifin. They need to have something natural with no side effects and can block estrogen. I heard they are doing a study on grapeseed extract. Does anybody know of a natural estrogen blocker?

    ReplyDelete

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