Tamoxifen and side effects
Hi all,
Has anyone had a problem with the side effects of the tamoxafen and having to be pulled off the medication because of the side effects? I am not sure if I am just an odd case, but I have been put on it 2 x both being pulled after a month due to dabilihitating side effects (bad fatique, anxiety, depression, poor congitive function etc.) One of the biggest factors I have intertwining with this is I cannot take antidepressants. My middle name is "black box warning." I know alot you can't have with tamox due to it interferes with how the drug works, so it really leaves effexor. I have had that one too.. side effect major migranes.. but I can't remember if they were from going off the meds or what. But anyways going to see my neurologist to see if they can help. I am kinda scared because I know the tamox can really help me. 
Worse case scenrio.. go on disability? But I love my job >.< Suggestions? Ideas?
Comments
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Sorry to hear about your discomfort due to tomoxifin. I made the mistake of taking it for 6 months and suffering before calling my oncologist. My oncologist decided the side effects were making my quality of life unbearable. I experienced all the symptons you mentioned..... ended up hospitalized due to such severe migraines several times and couldn't sleep more than 2 hours at a time...etc etc etc There are several alternatives you can take in lieu of tomoxifin. Right now I'm on a 2 week break to get the tomoxifin out of my body before I try anything else. It's wonderful to be able to sleep again.
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You guys are really suffering from this drug. I have taking it for a year. My ONC took me off Arimidex because I have osteoporsis and it attacks the bones which obviously I didnt need any help with. I just read a post from a lady who has just been dx with Diabetes 2 which her dr said is a direct result of Tamoxifen. Dang is there no end to this? I have not experienced migranes but I do have sleep issues sometimes but other than that havent had any serious problems but then again I havent been taking it all that long although my ONC said if you are going to have problems with the drug it usually occurs in the first 6 months - that is except for now the lady who has diabetes and was on the drug for 2 years. Diane
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The quality of life is a huge thing for my dr. I understand the sitution he is in with me.. and it must be challenging to have a pt who is so drug senstive and gets every odd side effect in the book. My neighbor was telling her drs pulled her off tamoxafin and just left it at that.. she is still walking around just fine. I am not sure what other drugs there are that are similar.. I am real leary of anything when they say, "oh the side effects can be worse" cause my luck that would be me.
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My biggest issue with Tamoxifen, which didn't start until I was about a year in, are really bad leg cramps -- not just calves, but quads, hammies and side tendons. All i've been told is to drink tonic water but I see no affect. Trying potassium and upping overall water intake but nothing seems to work. Anyone have anything to share?
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I've been on Tamoxifen for 4 years now. The worse think I've had is hot flashes and weight gain, the worse being the weight gain! Almost 20 pounds. I watch what I eat and exercise regularly, nothing I do makes any difference.. it just slowly creeps up and up. Has anyone had any luck controlling their weight or have successfully lost weight? I'd appreciate any help with this.
I think this is a good drug-minus the side effects. Theres good material out there to support its use. I'm going to be on it for 5 yrs, then they're talking about switching to femara for 5. I drink lots of water that seem to help with the hot flashes and constipation, the swelling of the hands and feet seem to come/go. I try to stay on a low sodium diet and have gone mostly gluten free which really has made me feel so much better. Read the labels on your food, know what is going into your body. Lots of additives and preservatives that done need to be! That low 45-calorie bread sat in a friends cupboard for 6 months and it never did mold! So, heaven only knows whats in it!
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I am so glad to see your post about the side effects of Tamoxifen. I had a terrible time with depression and sleep issues. I was only on the drug for a total of 6weeks. But just a miserable time. When my ONC took me off it I had abnormal bleeding for 4 weeks. Has anyone heard of medically inducing menopause (with lupron injections) so that the aromatase inhibitors can be used? Does it cause the same symptoms? I feel very hesitant to try this treatment option.
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Thank you for posting about this. I've been taking Tamoxifen since mid June and have had several side effects, depression (but I take antidepresssants), anxiety and sleep problems (and I take medicine for that), and increased migraines (for which I also have medication).
Sometimes the sleep medication is not enough and I still have trouble sleeping on Tamoxifen. Also my periods have pretty much instantly stopped but were like clockwork before starting tamoxifen. I've also had a good share of weight gain and irritability, though I'm not sure how much of that is the tamoxifen and how much is the multiple surgeries and slow healing.
A friend advised me to take advantage of my short term disability insurance, and while we are pinching pennies like crazy, my mental health and physical health is actually in much better shape because of it.
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Hello ladies....
I'm still in chemo. aug 22 is last cocktail, then rads and they want me to do Tamoxifen.... I'm so hesitant...
I've read of the benefits .... But the POSSIBLE SEs are scaring me.... I still haven't made up my mind about it yet. I'll be talking to my Onc about the % of benefit for me again before deciding to take all the risks of doing it...
I felt perfectly healthy before BC diagnosos! Never took pills! Not even for a headache ....(only had one bottle of advil in the cabinet before this all started. Now I have a basket full of Rx bottles and OTC remedies.... The thought of another one that can cause such horrible SEs has me worried,,, -
I have been tolerating tamoxifen for almost 2 years but am facing the option of switching to an AI this fall.
ItIs, do not worry about something that's not happened yet! On these forums, it's the people with problems that post the most. You don't hear lots from folks that have been doing OK. It's good to be aware of possible side effects so IF they occur you can take action. Try the med and see how you do, you can always stop.
CHH: you're not also on a statin for cholesterol, are you? I need 200mg coenzyme Q daily to keep muscle cramps under control. Expensive but worth it to keep my internist happy & lipid numbers down...
For Julie, I managed to lose 10 pounds last summer but have been stuck since then despite upping the exercise and being fairly compliant with diet. Agree with your suggestions on hydration and food analysis.
Take your time to heal and adapt Mummo. Things have to get better - you have been through so much in only a few months.
Finally, for andy (our thread originator), depending on age/menopausal status, you might pursue ljgart's Lupron idea especially with your family history. There are unknown genes which tests cannot detect that may be involved.
The benefits of estrogen blockade for many of us are very important for avoiding recurrence or metastasis.
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I am new to posting in these forums, but have benifited so much since diagnosis (and before) just reading them. I have my last chemo July 24th. I like a few others have been the side effect queen (2 roundst of Taxotere/Cytoxan...then switched to 4 rounds of Adri/Cytoxan). When my onc sees me he says "here comes trouble". I love him and all my dr's. He wants me and I agree to get a hystrectomy when I recover from the last chemo. BUT I am nervous about the tamoxifen after. I am always in pain of all kinds with chemo, the chemo brain fog is bad. Doc says Tam is as important as chemo in my treatment. I kind of figure with the double mast, hystrorectomy and chemo that Tam isn't as critical, also I'm 47 if that factors in at all. Any thoughts? Can't figure out how to get all my med info to appear below...
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What a good feeling it is to be done with chemo! Our treatment center celebrates with an individual cake! Me and my son ate it in the parking lot! lol... chemo gave me such a sweet tooth something horrible, but revved up my matabolism so I could eat whatever I wanted and not gain.. thats a different story now..
I am 47 yrs old also, have had a hysterectomy (kept my ovaries) in prior years, did a bilateral mastectomy when I found out I had bc. I'm glad I had the hysterectomy due to the fact that if you're on tamoxifen for too long it can cause uterine cancer! Yes all the side effects are scarey.. but so is reoccurrance! As you can see, this drug affects people so differently, I think it would be worth a try. Listen to your body, talk to your Onc. and the nurses, sometimes the nurses give you a little more insite than Doc! Keep your spirits up, pray alot and make good memories with the people you love! Good Luck with your last chemos C Cmagg and ItIsWhatItIs2013 ! vlnrph- good advise!
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ljgart, I did Lupron injections for almost a year so I could use an AI. The side effects were cumulative. I finally had to stop because it got so bad (severe joint pain that was not helped by exercise or massive amounts of painkiller, estrogen-deprived female parts that Vagifem and Estring didn't come close to helping, hair loss close to needing a wig, even most of my eyelashes fell out, sleeplessness caused by hot flashes so bad I had to wear full-leg pajamas, even in the summer, to absorb the sweat). The AI I was taking was causing my tumors to regress (I have Stage IV), so it was a very sad, hard decision for me to stop the Lupron shots/AI. But, other women do not have such severe side effects. You will hear all the horror stories like mine on this board. :-) The good thing about side effects is that they go away pretty quickly after you stop the shots. It's not like having your ovaries surgically removed. which is irreversible. I felt much better just a couple of weeks after stopping the Lupron. and a couple of days after stopping the AI. I definitely think it's worth a try, because you are in control. If you don't like it, you can switch to something else. And of course, your decision depends on your diagnosis, if this is to treat cancer or just to prevent it from coming back.
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Hi everyone, I too had the subject brought up of a hysterectomy as, Tamoxafin is not looking like a good option. I am premenopausal, but Chemo I think might have put me in menopause. So I am not 100% sure if its permenent...best conversation I had all week was with my dad going .."....I though you were going to have another baby..." Me: "wut? are u insane?"
My friend back home just had a hysterectomy, due to being tested for the genes for ovarian cancer, I just have no idea how my body will react to everything, its so sensitive as it it, any drug that it decides it doesnt like its like full fledge WAR! and Rage QUIT! I hate to say it, but it seems like its quite happy with everything right now, and does not want to be distirbed. lol
My family and I are working on some food changes as well, all organic mainly eggs, meats.. watching breads and eating more vegetables and definatly watching the sodium. Sodium ie soups make my still blow up since my chemo. now like 3+ months out. I do know one thing though that when i was on the tamoxafin, excersize (I ride horses) helped me so much... but with a full time job, it makes it very difficult. file FLMA get a few hours off aweek to do this?? I am seriously thinking about asking my Dr. about this so I can stay on the tamoxafin...If they can find a way to treat the "Zombie" BUT least I know after seeing the board I am not the only odd cookie in the batch ~.^
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I have been on Tamoxifen for two years. The side effects can vary in each individual, and more importantly there are several manufacturers of the generic Tamoxifen . There are differences in the ingredients these manufacturers use, so if you are having problems with tamoxifen read the section on here about side effects of tamoxifen. I am on the Mylan brand and have been doing much better than when I was on the Watson Brand. Unfortunately there may be a shortage of Mylan since it has been stated that Mylan was temporarily discontinuing making Tamoxifen. For those of you who take Mylan or who are lactose intolerant and need Mylan, they have a customer contact page where you can send a message. I hope if enough of BC.org users send Mylan a message, they will decide to restart the production of their Tamoxifen.
www.mylan.com/contact.us.aspx
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Hi, this is in response to CHH's leg cramp issue while on Tamoxifen.
I, too, had very bad leg cramps that would wake me up at night. I've been on Tamoxifen for about 3 years. Never associated the leg cramps with the drug, though. I did some reading online about cramping and saw many cites that mentioned Vitamin B12 to help diminish symptoms. I started taking B12, and this has really helped. I rarely, if ever, get leg cramps now. You may want to do your own research into this possibility. It could be your body has a vitamin deficiency.
Lynn
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I just got on here to see if anyone else is having a problem with gaining weight. It seems the more I try to lose the more I gain. I am watching what I eat and exercising but it is not helping. My onc says just keep trying. It just so frustrating. I can handle the hot flashes and the leg cramps although they both seem to be getting better. I also have trouble with reflux which got really bad with the pharmacy switched to a new brand of tamoxifen. I am hoping the weight gaining gets better too.
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Well, I came here looking to see if anyone had the same SE I seem to be having.. But have not seen it pop up yet. I started Tam in June. Within a week I had a burning itch start on my right wrist, it moved up my arm.. Then my left arm same thing.. Then I started getting a burning itch feeling in my scalp and stopped taking the drug.
Just saw my onc today.. I am going to wait for all itching to stop and try again. He had never heard this complaint. Is it the Tamoxafin? Hmm. That is the only recent change.
The need to scratch this itch that doesn't ever go away is quite severe. Other choices given.. Take the risk ( not encouraged by onc) or have ovaries removed.
I don't like any of the side effects I have read so many having here. I guess you have to find what you can most deal with! -
Hi Ladies, I haven't been on this site for quite some time, I agree with vlnrph those of us who don't have side effects or have learned to deal with them are not on here that often. Finishing chemo is a big thing! try and not stress over the side effects of tamoxifen. I think its best to figure out where you are the menopause train. If you were still having normal periods I do think its worth taking the tamoxifen even its just for 3 years. They say that is when the % benefits starts to taper, but then you get a report that says if you are younger they want you stay on it for 10! I don't think I could handle it. I'm working with an NA (naturopath physician) and look to other ways to manage symptoms. She agrees take the tamoifen for 3 years at least, then there are other ways to naturally control out hormones.
all in all side effects? oh god yah, weight, I lost 10lbs after treatment but could not lose another lb think you plateau and the exercise and eating right help keep us from gaining more weight, not to mention putting the right things in our bodies helps us fight reoccurrence. JulieBaquet… look to foods that can help burn calories, I juice 5 days a week with different vegetables that help clean out the GI, do you feel like you are carrying it in your intestines? Also one thing that I found out after all of this is that I'm super allergic to Gluten, removing that also has helped keep the weight gain down.
other side effects, memeory for me has been huge, oh and my tongue for the last year feels like I burned it on hot pizza, yah I know weird right? I take b12 and it helps but i know it the tamoxifen.
The question you have to ask yourself is whats the alternative to tamoifen is? I asked every woman I knew and looked on this site at woman you had a a recoccurance and the one thing that stuck in my mind, those who did have a reoccurance 9 times out of 10 did not take tamoifen the first DS. Scary right?
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I was already post-menopausal when Dx'd. They put me on tamoxifen, as 2.5 years on it and then 2.5 years on an AI seemed to be the best way to go according to my MO. Unfortunately, for me the SE's were brutal. I was exhausted constantly, had extremely bad asthma, developed very odd pains here and there, and then finally got DVT in my leg and multiple PE's. Then they took me off tamoxifen and put me onto an AI. I've had SE's on it as well, but nothing compared to tamoxifen. On the other hand, my mother took it for 10 years and seemed to have no ill effects.
I don't know what I would have done had I been pre-menopausal. That has to be a terribly rough decision to make.
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Hi All. I am in my mid 70s but chose to go on Tamoxifen because of low bone density issues. I've been on it for about 8 weeks and have gained .7 kilo ( about 1-1/2 lbs).Don't know if it's a result of Tamox. I do keep an eye on my weight and, without bothering too much what I eat, I've stayed the same weight for some time. How gradually or otherwise did it take other ladies to put it on?. I'm a bit weight paranoid. (No other se so far.) Would appreciate comments.
I had lumectomy and rad. only with no problems.
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Hello TarheelMich. Thanks for sharing your story about the lupron/ AI. I'm sorry for your issues. I am really hesitant to try this I was diagnosed with IDC st1 gr1 last July. So the treatment would be preventative. The fact that it can be stopped is good but do I really want to risk the side effects. Ugh. I feel so confused and worried. I never want to feel like I did on Tamoxifen again.
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dexxy - I know what you mean about the burning tongue. I had that for almost a year. I didn't take T last year so I think I figured out that it wasn't the sole culprit. This is what I think happened for me. I was taking so many meds with the MX, also I was anemic and the doc had me on iron. I think all the meds plus my anxiety really got my gastric acid going, and some of it escapes up my throat. I know it sounds wierd. In the past few months I have made a concerted effort to get off any meds that I don't have to take. I am down to three pills - T, Effexor, and a thyroid pill. I take them all before bed. I also avoid sugarfree gum (call me crazy, but I think that was irritating me also). I don't even take tylenol or aspirin. Things are much improved for me. Who knows. My docs thought I was wacko.
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ive been on tamoxifen for 6 weeks now and its been fine. intially I had some sleep issues but its fine now, Ive actually lost a lot of weight 16lbs but im not sure if its the tamoxifen or me getting back to my pre cancer fitness level.
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Hello all - I am glad I came to this board to see what other people's side effects are. I have only been on for a week - and almost immediately I got acne like I haven't had since I was a teenager! I have had chemo off and on for years - my face was wonderfully clear during chemo.. the only nice thing on chemo. But now I have these deep pimples... almost like cysts. Also - I am having trouble sleeping but that may not be from tamoxifen (alot going on here..). I am planning to have a hysterectomy - and after that I suppose I can go onto one of these aromatase inhibitors instead of tamoxifen. Does anyone know if acne is a problem with those? It looks like I should expect to gain some weight... pity I just bought all new jeans!
M
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Gardengumby...
I'm surprised they put you on tamoxifen if you were post Menopausal.... I talked to my Onc just yesterday about my doing T ... And the risks & he said he wouldn't put me on it if I was post..... That he would use the other therapies....
I talked about the SEs and he says he can help with the "hot flashes" ugh, Im dealing with those already on chemo.... I'm worried about the rest of the SEs.... -
Anyone have irregular heart beat/palpitations while on Tamoxifen? My MO told me to take a week off to see if the SE go away then give it one more try before she switches me to Femara...
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I haven't had any side effects like that from Tamoxifen. I have been on it for 7 months. I am also getting a shot of Zoladex to stop ovaries once a month and am wondering if slight weight gain is from that?
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I have been on Tamoxifen since March.....I am just starting to have weight gain...weird not pounds but redistribution to my stomach area....Is that the same thing you experience? My doctor said I would most probably gain weight. I'm increasing my exercise and decreasing food....we'll see.
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That is exactly where I see the redistribution... The stomach area. I watch what I eat and exercise and the scale is slowly creeping up. I see my Oncologist in September and will talk with her about it. Also bad leg cramps that go from feet up to thigh!
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I was on Aromasin but was having alot of bone pain so my MO switched me from Aromasin to Tamoxifen 3 weeks ago. I had leg cramps and trouble sleeping in the first week, then started having irregular heart beats and cold sweats so she took me off the Tamoxifen for a week. Next week I have to decide if I want to try Tamoxifen again or switch to Femara...I'm afraid Femara will just be worse so I'd rather give the Tamoxifen a chance - any tips that would help with the side effects?
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