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!!!

36 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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  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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  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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  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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  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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  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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  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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