Bottle o Tamoxifen
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I was on Actavis brand for three months, then they sent me Teva and I was in pain and itching with Teva. I insisted on getting the Actavis brand back and I have no side effects. Just sometimes not sleeping well. Hope that helps. But everyone is different.
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Hi ladies - I need your advice. I quit Effexor a month ago without any withdrawal issues. I thought it might help me lose a couple pounds and I don't really want to be on any med I don't have to be on. The hot flashes and night sweats are fearsome now. I'm at a point where I'm probably going through natural menopause. Do you think the HF will evenually calm down, or would you expect this to be a normal thing for the next 3.5 or 8.5 years? Thank you!
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Hello ladies!
Just finished my first bottle o' tamoxifen, only 17 more to go.
Major side effects have been severe nausea and lack of appetite. I lost 10 pounds in the first 3 months. Not that that's a big problem, I could probably live off my body fat for a year, lol. I have also been having some cramps in my calves, like when I was pregnant 26 years ago. Luckily none of the joint or bone pain that others have experienced. Hot flashes haven't been any worse than before I started the tamox. Hopefully the nausea will clear up and I will enjoy food again. I used to love to eat!Have a great rest of weekend, back to work tomorrow!
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Thanks girls for the hysterectomy info. I think I'm going thru perimenopause now (I don't get hot flashes but definitely get warm flushes, especially around 4 or 5 am) so I'm hopeful it won't be too bad. My doc said the same thing. I'd like to get rid of my "lady bits" as well since my BC was ER+ and I apparently produce high levels of estrogen. I just don't want to remove things unnecessarily....it was one reason I only had a uni mx. But one cancer scare makes you very leery of any cancer scare so out it shall come!!!
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lala, great that you made a decision! Sometimes that seems harder than the actual procedure! Good luck-keep us posted!
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Hey ladies!
I can't seem to find any hard data online, and will be talking to my onc. but…
I stopped my periods when chemo, and started Tamox in December of last year, and all of a sudden yesterday I started without warning, and it is like all 16 months are trying to happen at once. Does this indicate in any way that Tamox is no longer working as well? or I should be more concerned about uterine cancer?
It just took me by surprise, and i have never had such a heavy period before.
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You probably want to call your gyno. Tamoxifen can cause uterine polyps which in turn can cause the heavy bleeding. They aren't generally a big deal, just a pain. I've had two rounds of them. A TVU will be able to tell if that is the issue. Good luck!
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JWoo, I agree with Farmerlucy, call you gyn. Mine told me that while I am on Tamoxifen if I have any bleeding to call immediately. I believe she is worried about endometrial cancer which is a rare side effect. I don't want to be an alarmist or anything but my cancer journey has taught me to check out worrisome things immediately.
Sorry this is the first time I posted. I have been lurking for a while.
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Thanks ladies! i have a call in to both my Onc and Gyn, and they should get back with me tomorrow. It really surprised me and I will admit, scared the bejeezuz outta me. Fingers crossed it it nothing. I do have PCOS, so it could be that rearing its ugly head, but I def. want to be sure. I wish it were a little easier to find info about this on the web. I figured after 40 years of rxing tamoxifen, there would be more data available to the public. *silly me*
Have a great night and thanks again!
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JWoo.: I started bleeding heavily after being in chemopause for over a year. It was horrible. You can become anemic really fast. I had a TVU and it turned out to be a bunch of fibroids and endometriosis. They gave me tranexamic acid to slow the bleeding down until they could do surgery. I wound up having a hysterectomy, oophyrectomy and Fallopian tube removal. I'm so glad I did. Definately push for an ultrasound to see what's going on especially since your on tamoxifen.
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JWoo, we're glad you are getting an appointment soon to assess this bleeding. When any unexpected bleeding occurs, professional help should be sought.
We send you our best and hope your appointment is very soon. If it gets bad, please consider the local hospital as you can't risk low RBC.
The Mods
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I have never been so miserable in my life. I am so Done with the Tamox and Effoxer. I have been on an emotional roller coaster. I Want my life back. If this is what I have to look forward to for the next 5 years, not going to happen. I'm getting to the point of I'll take my chances with some natural solutions. Everybody keeps telling me I'll be fine. Well I'm not fine. I'm a mess. Getting fat now I am diabetic. Why did I ever agree to this. Don't have to worry about the cancer killing me the "treatments" are going to that. Vent over.
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I am really cold all the time, when I am not having hot flashes. Are any of you experiencing this? The joint pain I manage with exercise, but I get cold when it is warm.
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smrlvr - At night I am either freezing or broiling. I got off the Effexor for a month - but the HF and nights sweats are so bad I'm going back on. Guess I will resign myself to being on it for the duration. Besides I've missed my deep sleeping and wonderfully vivid dreams!
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The vivid dreams are about the only thing that is kind of cool!!! No nightmares, just vivid. There just has to be something else we can do. This is Crazy. The big pharmas don't give a crap. Just the bottom line.
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Thanks Mods and LW!
trying to get in to see my gyn Monday. hopefully she can squeeze me in somewhere.
SMR- i wish i had your problem- even on effexor- i am hot all the time. glad winter is on its way.
RET- the frustration- i get it. after all this time, you would think there would be something better. sometimes i think that it isn't worth all the SEs, but, i see a lot of women that benefit, and i just have to hope i am in their numbers.
i've had night terrors my whole life, and very vivid regular dreams, and all the meds make it 100x more than usual. i wake up tired from all the activity!
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SMR I am constantly cold to the point I have been spending much of my day on my deck and I have a crazy dark tan on the front of my body! In the house I have a blanket wrapped around me. Now at night I get hot, but I had been like that for several years prior to breast cancer. I have lost quite a bit of weight so maybe it is lack of fat.
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Oh and I went to the pharmacy to get my second bottle of Tamoxifen today (90 day supply) and they wanted to give me another brand. I said "wait wait I need my Teva brand". Luckily the tech is an old friend of mine and as I started to explain how we all felt brands may make a difference...she said "no need to explain, if I can reduce your stress level I'm giving you Teva". Thank God!
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Beth, I got a letter from insurance saying I have to do 90 supply by mail or CVS pharmacy from now on. I just got my second 30 day supply from my regular pharmacy and they have been giving me Mylan and I don't want to switch as I seem to be OK with that brand apart from some fatigue so will have to sort it out soon. Also DH swears that he has felt the cold more and needs to keep the house warmer since he had surgery a number of years back so I wonder if that has anything to do with it, just a thought.
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Hi Ladies,
I have a question for you. Have any of you experienced depression while on Tamoxifen? My mom has been on Tamoxifen for about 8 months now and since she started taking it she has been incredibly depressed. I thought maybe it was an after-effect of everything we've gone through since dx but I'm not so sure anymore.
She had to take a 3 month break from Tamoxifen about 1 month ago because she broke her pelvic bone. Her Dr. was afraid of clots. While she was off the Tamoxifen she was her normal self! It was wonderful. I had my crazy, fun, positive mom back.
As soon as she got back on it, she has been so depressed. We had a horrible day yesterday - she snapped at me, cried, told me she feels no excitement for life, no hope, etc.
I just don't know what to do for her. She's usually so peppy and happy. I want my mom back. She defeated cancer! I want her to live her life happily. I understand she HAS to be on Tamox. She was ER+ by 90%.
Have any of you experienced this? And if you have, have you found a solution?
Thanks so much!
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Hello ladies,
Soon I will have been on Tamoxifen for 5 years! Yea! My Onc wants me to stay on it longer... What are the benefits for staying on it longer?? I also have the hot flashes, depression, and also worried about the other side effects that come with it, so what would you do??? Any feedback I greatly apprecate!
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Chelsea and flacracker - I have been on tamox for about a year now, with a couple of 2-3 week breaks for surgeries. I had difficulty with hot flashes, especially at night and also low mode/depression. I started on Effexor in the summer and feel much better. I'm on 75 mg per day, and that's enough to take the edge off the hot flashes and make me feel better generally.
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chelsea, maybe MO would recommend another TX for her such as an Al, if she is post-menopausal...?
I have been on Tam for almost 5 months and am doing pretty good. I have some down days, but I don't think it's anything out of the ordinary, considering what I have just gone through. My younger sister took it years ago and quit after two years because of the mood swings she was having.
Good luck~
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I have only been on it a couple of months and my mood is not too bad BUT I do take low dose lorazepam (ativan) on an as needed basis for poor sleep and they definitely help improve mood I have found with zero side effects. That may be something your mom could try Chelsea.
The problem I am having now is horrible fatigue, different to the fatigue I had during rads.It hit me last week on the way to work and I have days when I feel ok and others when I can't stay awake and get very hungry,just eat and sleep. I have been doing a lot of exercise, yet have no energy and feel achy. I am hoping that its just that I have overdone the exercise and not a permanent side effect of the tamoxifen.
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yes Tamoxifen causes depression - as do the AIs - anything that effects your estrogen is going to potentially effect your mood and mind and energy.
when you have estrogen reduced - your energy is less, your body is retaliating by producing hot flashes - and that most likely will effect a women's sleep, mood, energy level and not being able to live the quality of life she had once had - that is DEPRESSING to handle - the DR can prescribe and EFFEXOR 75 mg (which is the lower dose of that pill) to help boost the mood or the Ativan, Xanax type pill to take edge off - there are many anti anxiety and anti depressant meds - I have heard good things about Lexapro too - 5 mg is the starting dose and many women are fine on 10 mg of that - or 20 mg but must work up slowly as it takes weeks to get used to that pill.... and any anti anxiety or anti depressant medication should be monitored by your DR or psychiatrist as they need to make sure it is something appropriate for you - and make sure your Oncologist is aware what you take if you are on Tamoxifen or an AI... there are a few pills they say no that one we do not want you on while on the pill to keep cancer from coming back. but yes, there are things to help and your Mom should not feel badly that she may need something to help her laugh and not be so blue - I have been fighting my blue moods - which i had prior to my BC diagnosis this year but now - now I feel the blue mood is definately more noticeable - harder for me to snap out of it since this whole experience - and I just started taking an anti anxiety pill at bedtime to help me sleep and turn off the worry and may plan to try an anti depressant again very soon - as all the energy I expend towards trying to not feel depressed is exhausting and stressful - i try to distract myself - cleaning, working, walking, shopping, sewing but once i stop - those feelings all are still there, and it is honestly really depressing to feel that I am bringing the people around me down by me not being able to relax and laugh and talk and have fun - that aspect is really upsetting to me - I am sure your Mom may feel that same way - no matter how hard you TRY to not feel depressed, you just ARE Depressed and there is a lot of guilt and shame in not being able to pull yourself together and snap out of it,,, hope she is open to taking something - they do work - - - and having to take something also can make a person more anxious and stressed out - starting new pills is not fun, takes adjustment and family think - oh great she took a pill and doesn't feel blue anymore - really doesn't work like that - it can take months of being on a pill or trying various ones to get one that is well tolerated and works and helps so understand it is a process and don't assume they are all better now that they have some RX for the mood - - it will take time to work and get right one etc.. good luck
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Keepthefaith, My mom has severe osteoporosis. Her onc originally put her on Arimidex but because it causes osteoporosis, she was taken off and put on Tamoxifen. She is post-menopausal. She's 58. She loved Arimidex. Then she fell and broke her pelvic bone in 3 places, so it's imperative that she doesn't switch.
I so wish she could! She's gonna try an antidepressant with it so hopefully it will improve her mood swings/depression. Thanks so much for the info (:Lzzysmom, My mom experiences massive fatigue, too. She said it's worse than when she was on radiation. Lack of estrogen causes that. Her oncologist actually gave her Vyvanse for it. She also experience concentration probs from the Tamox. It's helped with that and boosting her energy. Maybe you could try that? My mom is super achy and stiff, too. Not sure if it is a side-effect or not...but I've heard a lot of women say that. Thanks so much for all your help!
Sparkle, Thank you so much. Everything you wrote was so informative and so true. She's going to try an antidepressant, which I think will be so healthy for her. We had an amazing heart to heart last night and she agreed. It's so sad that Tamox users have to experience that. I hope you find something that works for you, too.
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I just started my Tamox a week ago. I had been putting it off for the past few months, finding reasons that seemed valid. Two weeks ago a good friend's sister found out her breast cancer had reappeared, this time in her brain. She was given 4-6 months.
I'm trying hard not to over analyze every little thing with my body and mood. But I've been completely exhausted the past couple of days, but am not sleeping all that well. I'm not the greatest sleeper typically, but I don't usually feel this exhausted. It's that sicky, nauseous, I need to lay down because I can barely sit up sort of exhaustion.
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Christy - sorry to hear about your friends sister.
Your body might take some time to get used to the drug. Are you taking it at night or in the morning? Maybe switch the timing and see if that helps.
Ridley
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I had nausea for the first week. I take it in the morning to help with any insomnia. I also take 37.5mg of Effexor and that helps with HFs, mood stabilization, and it makes me sleep like a baby.
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I've been taking it at night so far. There was a warning on the bottle indicating it could cause dizziness (don't drive, operate heavy machinery sort of thing), and since I have a 35mile commute, I didn't want to risk taking it in the am.
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