Bottle o Tamoxifen
Comments
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When I first started my Tamox almost 4 years ago, I had the nausea. I took mine in the morning with breakfast. A small glass of milk really helped to overcome this. After about a month, I no longer needed to do that. I still take mine in the mornings and it is working well for me.
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I am currently on a 30 day break. See my MO next week. I too get fatigue. Just seem like some days I am in slow motion. My stomach is Always feeling nauseous. I am on 75 Effexor and wonder if a lot of it is that. I am so tired of feeling yucky and tired. I'm afraid she will want to put me on an AI not sure if I am mentally prepared for that. Just don't want to mess with my bones. Oh, and one of them had pushed me into the diabetic range. Now I'm really depressed. One more person tells me to just go for walks, it's 90 degrees. I'm already sweating like crazy.
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Well thanks to Tamoxifen I now get to have a hysterectomy (with ovary removal) YAY!!!!!! Only bright spot I get to get off the Tamoxifen for 3 weeks!
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mstrouble - I feel your pain sweetie The same thing happened to me last year. I was not fortunate enough to have my ovaries removed - they have to stay - they are fused to my bladder. I was off Tamoxifen for 5 weeks.
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Hi all, newbie here.
I start tomox on Monday - yay me! I have had 2 surgeries and done with radiation. I was told because I am premonopausal and my risk of reoccurance is 10%, chemo would not be effective.
I had an endometrial abblation proceedure done earlier this year and not having a period has been pretty awesome. I am wondering if taking tomoxifen will cause me to start having periods again or will it be a non event. I suppose I should ask the onc this question but wondering if anyone else has had an abblation before taking tomoxifen and were there any issues?
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I haven't had an abblation. I'm only about 1 1/2 weeks into starting it, and my period is due soon. I'm curious to see if anything will be different.
I know I'm overthinking things right now-"is that a symptom," "am I doing _____ because of the meds?" I also sometimes think "I'm not having any symptoms," then I've had a couple of nights where I'm trying to fall asleep and suddenly I'm convinced my entire life is falling apart and I'm sobbing. And it's not; my life is pretty good. I kind of have to laugh at myself.0 -
I was on Tamoxifen for 5 years and have been off it now for almost 2 months.
I feel much better and am losing some of the 20 pounds I put on over the
years.
At first I had many side effects and then gradually most eased up but I feel
it does take its toll while it is also helping us too I'm sure.
One of my 3 doctors wanted me to stay on...the other 2 agreed with me. I
feel I made the right decision.
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Catbird - Congrats on finishing Tamox. I imagine you do feel so much better. I have about 14 months to go. I have already told my MO that I will not do 10 years. My old body wouldn't be able to handle it. I agree - you did make the right decision.
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Rett, I too am going to give the tamoxifen a miss for a short time to see if its that that is making me feel so fatigued or if its a hangover from surgery or rads. I have been exercising regularly, maybe over doing it a bit even, but still have little energy left for other things, just odd days when I feel somewhat better. I don't have major hot flashes, just a number of little things that wear me down. I just feel so run down and achy and my breathing feels a little off. I am kind off ticked off that I may have a few more muscles but do not feel any healthier in spite of lots of exercise. It reminds me of when I gave up cigarettes many years ago. I felt OK when I smoked, never coughed, and felt no different after I stopped although I am glad that I did.
I do hope you are feeling better now that you have started your break.
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Hi everyone. I hope everyone is doing well. Just wanted to share a sort-of funny story. Today I had my annual GYN appointment. Prior to my Dx, I had not seen a GYN for probably ten years (I had my Pap tests done by my primary care doc). My breast surgeon wanted me to be monitored by a GYN since I'm on hormone therapy. So today's appointment was the second visit with this GYN practice.
When the nurse was going over my chart, she was asking if I was still taking the meds I had listed at the initial appointment last year. Going down the list, she said, "you're still on Topamax?" When I told her I had no idea what it even was, I realized that's what was entered into my record instead of tamoxifen. (My handwriting isn't THAT bad! :-). Kind of scary how a clerical error like that could affect your medical record, huh?
(I've since learned that Topamax is a migraine drug. I do have a history of them, but one nice side effect of entering menopause is that with my periods pretty much nonexistent at this point, the migraines aren't as frequent. I've had good luck testing them with imitrex.)
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lyzzysmom -- just wondering if you have had your iron checked lately -- I found out a couple of months ago that my iron levels were half of what they were a couple of years ago. Low iron is linked to fatigue, which is something I've been dealing with.Of course with so much going on (3rd surgery a couple of weeks ago, adding Effexor in the summer, off tamox for a couple of weeks before surgery and then back on, etc.), the iron might not be causing my fatigue, but I'm going to try to get it back up and see what happens.
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one tip I have to share about iron supplements -- typically the pills are constipating and hard to absorb. When I was pregnant (15 years ago!), I had good luck with a vegetable tonic called Floradix. It was much easier to digest than iron pills, and it was very effective in getting my levels up. I bought it at whole foods but I'm sure it's easy to find online.
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Ridley and Gemini, thanks for the tips. I had a lot of blood work done after surgery, not sure if they checked for iron, but nothing since I started rads or Tamoxifen so I think I will look into the iron supplements. Many years ago my mom and grandma in England used to take a glass of tonic wine a day. That was a yummy way to get their iron supplement but not so sure its a good idea with BC. The Floradix sounds like a good idea.
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I get to join the Tamo Club as of today. I have to say I am concerned about the possible se and my oncologist did try to down play the se as much as possible. I suppose its like rolling the dice to know what and if any se a person may have. I am thankful there is this site to come talk to others who know first hand what it is like. Right now, I feel like I dont know who I am any more. This breast cancer stuff has taken over my life and its like the old me is gone and I now have to learn to live life differently. One day at a time!
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the Tamoxifen can cause stomach upset, and make you feel queezy, lightheaded, a bit funky... that is why I have not started it yet either - along with the fear of the insomnia, joing pain and chronic fatigue and feeling bloated, moody and so TIRED all the time,,, My Dr said take it at night - I think it best to take it with some gingerale first or diet 7 up - nothing greasy and nothing creamy..
I have heard good things about adding wellbutrin 75 mg (the lowest form I think of that RX) to EITHER (not both) of 1) Lexapro 10 mg or 2) Zoloft 50 mg as the antidepressants can make one tired and if on Tamoxifen too - double whammy - and my Oncologist was fine with Zoloft - he said yes there was reports of Tamoxifen being less effective with certain meds like Zoloft or Lexapro but he said he is not concerned about it drastically reducing effectiveness of the TX.
anyone taking Lexapro and along with wellbutrin or Zoloft that can share if taking those helped you cope with the cancer DX and also getting on board with Tamoxifen (over the fear) ?
or taking the Tamoxifen at night then maybe 2 hrs later at bedtime taking .25 Xanax or .5mg Xanax to help sleep well? just looking for helpful tips.
I know if i take that TX pill i will be up all night feeling like something will happen to me - i won't sleep - so maybe the xanax nightly would help that as get used to it and then can wean off and or switch over to a lexapro or zoloft once the Tamoxifen is in my system and I am not so panicked to take it??? thanks
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cidney, welcome to the tamo club. Stay positive. Your onco is like mine, who told me 70% of tamoxifen users have no side effects and I turned out in that 70%. I'm premenopausal and don't get hot flashes, I sleep great, gained no weight, just haven't had a period since I started it, but no complaining here. That's my only SE. I take it at 6 pm, have since the beginning, but don't think it would be any different if I took it in the morning. Good luck and hope you're in that 70% too. Kim
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Sparkle check with your doctor on the welbutrin - I'm pretty sure it is contraindicated with tamoxifen.
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sparkle, I agree with Lucy. Are you confusing Wellbutrin with Effexor? Because that's often taken at 75mg with tamoxifen.
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So here's my story about Tamoxifen and how it can interact with all sorts of things....
Back in Jan I had sudden onset of dizziness, nausea, bloating, constant burping and headaches. I keep a diary of meds I take and if I change brands or anything. My MO had suggested it when I started Tamoxifen. So looking at my diary, I noticed I had changed my multivitamin recently so I quit taking it for a few days. No improvement. Eventually I called my MO who sent me to an ENT telling me it was chronic sinus infection. I didn't have any congestion, stuffiness, etc but I went. ENT said allergies and put me on some nasal spray. Didn't seem to make any difference. ENT thought mold allergies because I'd actually feel better being outside. (However, keep in mind that a Tamoxifen SE is allergies.) Then I quit getting my period. I'm 51 so I started thinking menopause. I asked my GYN who said maybe perimenopause and ran my estrogen levels. Those showed I was not in menopause but he said could still be perimenopause and I'd just have to deal with it since I couldn't take HRT. Some days the dizziness was pretty strong and some days I'd burp contstantly, like all day. So feeling like crap went on for months. I went to VA for the summer and didn't feel any better so I figured it couldn't be mold allergies. After the summer I came back to SC as usual and went on vacation with my family. I had a particularly bad couple of days and decided I really needed to figure this out. So I went back to my diary to try to figure this out. Again, all that I could tell was that I had started the new multivitamin. So I quit it again. This time I decided that knowing how long Tamoxifen can linger in the system, I'd go off for one month in case the multi was the same. For about a week I felt like crap still, for a few days even worse. Then about a week later, I woke up one day to find no dizziness! Then no nausea, etc. I've now been off the multi for 2 months and feel great. I was having a few hot flashes while on it but only like once a week and pretty strong. Now I tend to have them every day but they are very mild and at night where I almost don't notice them. Every couple of weeks I'll have a moment of dizziness but I've now determined it's related to my monthly cycle and my estrogen fluctuating. All of this I'll take any day over the other stuff!!
So I googled my multi (it was One-A-Day) and found all sorts of reviews of people who'd had bad reactions to it. They use alot of fillers in their vitamins. I've taken One-A-Day in the past with no problem but now understand that it could be the Tamoxifen. It's a pretty strong medicine and we have to be aware of how it can interact with other meds, even common vitamins and minerals and herbs. I'm going to find another multi and go back on them but at least now I know to watch for SEs. I'm really thankful my MO suggested this diary idea. Otherwise I might not have figured it out. I think everyone on Tamoxifen needs to keep close track of any meds we take and any possible SEs that we feel. I do very well on Tamoxifen and have from the beginning except for this 9 month period. As far as Tamoxifen causing hot flashes etc, we have to remember that Tamoxifen is considered a type of chemo drug and tends to put us into menopause. Menopause then causes hot flashes and such. My worst SE was muscle/joint pain and cramps. I started SloMag magnesium at the suggestion of my holistic doc and now have barely any issues with that. I do still have some moments of mild dizziness but have found it usually precedes one of my mild hot flashes so I know to just sit and wait it out. And having the bloating and burping go away has been awesome!! I actually lost 3 pounds in the week after I quit the One-A-Day so I know for sure it was causing the bloating.
I hope this helps others riding the Tamoxifen train. It can have some crappy side effects but I think if we pay close attention to our bodies, we can mitigate some of them. My docs, who I love to death, kinda blew this off what this the "sinus infection", "allergies", "menopause" etc but they are all men and men just aren't quite as empathetic. I'm an avid researcher about BC and all BC things so I think this helped me figure this all out. My Gyn actually refers to me as "Google Girl" because I research everything! Possibly too much!!
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Good information lala, thank you!
I feel pretty lucky so far. I've been taking tamoxifen since May and have had little SEs. I didn't have a period in August or September but a doozy in October! My only side effect, and I'm wondering if anyone else has had it, is constant period cramps. Like all day every day. Sometimes so mild I barely feel them to quite uncomfortable. When I tell my onc he just kind of smiles at me. He said it's not a SE of the tamoxifen but they started the same time I started taking it.
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Smilinkar...I have been on the tamoxifen for 11months and still get my period every month like clockwork. It hasnt changed at all except for the hot flashes are so bad... effexor helps , so I am now getting more sleep. The joint pain, cramps , backache s , crushing tiredness, vision, and I can go on and on with side effects. My hormone level is around 320 -370 , normal is 40 - 317. I was hoping for menopause since my periods were always horrendous. Has anyone else had their periods this long on tamoxifen?
All my love and prayers to all you fighters and survivors♡♡♡
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Just started the Tamoxifen last week, and I've noticed that I'm having some stomach issues! I've never had any kind of stomach issues (not even on chemo) so I'm wondering if it could be the Tamoxifen and if anyone else has had this and if so, did it go away over time?
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jeni72, my onc told me it was normal to still have periods on tamoxifen. I'm not having hot flashes yet and was concerned the tamoxifen wasn't working but he said that was normal too so who knows... Sigh
Nettie, I had a nauseous stomach for the first week or two as well but it completely went away. Hang in there!
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Nettie, I had upset stomach (loose) for about a month after starting Tamoxifen but it gradually resolved. I started taking a daily probiotic pill so not sure if that helped.
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Good evening ladies
I have been on Tamox since February and I am down to zero SEs. I have a few sleep issues (staying asleep) but the warm flushes seem to have subsided and I can't say anything else has crept up.
I have the worst periods ever though. Usually about every 40 days. Theylast about 5 days but the first 2-3 days are just pure *beep* !! My gyn gave me an rx to help with the pain and inte sity but i don't find that it works. I'd like it if they would stop all together
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I haven't started tamoxifen yet. It should be the next step after radiation since I am still pre-menopausal. I have an appointment with my MO on Nov. 18. I have to say that for some reason, this scares me more than anything else I have been through. I already have problems with hot flashes, ovarian cysts and periods from he--. Any advice or words of wisdom would be greatly appreciated.
Thanks!
Jeanelle
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Hi all, well I went to see my MO yesterday. Usually she is hurried and brief. But this time she really sat and talked to me. She was really wonderful. After reviewing all the issues I was having, she said that it was the Tamox. She said that if it is getting to the the point where it was interfering with life, then it is time to change. Guess I was just lucky enough to fall in the 20% category. After a long talk and a brief meltdown, I agreed to to try an AI. I really didn't want to. But I also don't want this back. I am not looking forward to it. I felt for the first time someone was actually being honest with me. So I am going to try uping my Effexor to 150 to see if that helps with the sweating. I will be splitting the dose so if it doesn't work I can reduce it back. I will be meeting with her again in Dec. to see how it's going. They have also scheduled a bone density test for Dec too. To get a baseline. She admitted that some women just can't take these drugs. And said if there is still issues, that at least I gave it a shot. I am going to speak with my Nauropath also and see about getting my hormones at least balanced. So I guess I will be going to the AI boards. Good Luck to you all.
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Hey everyone...this is quite an active thread...is it okay to just jump right in?I started Tamoxifin 31 days ago and today MO told me to take a week break. I started having really bad dizzy episode Monday evening that put me in bed. I was dizzy and off all day yesterday, headache and ringing in my ears. Naseau too, my stomach has also been bloated...I thought it was a lingering se of chemo, but now I'm not so sure.
I honestly had been feeling really good for the first few weeks on it, I was surprised by it. So MO's nurse called me back today and said to stop for a week and see if anything improves.
how do I know if I'm perimenopause still? I haven't had a period since my first chemo back in FEB. I just wonder if Tamoxifin is right for me. What questions should I be asking my MO about the risk vs benefit of taking this crap? Would it be better for me to just have oopherectomy?
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Hi! I'm new to the site. I am finishing up my second month on tamoxifen. No crazy hot flashes that I've noticed. I'm still not having periods regularly but I'm not sure if this is from the tamoxifen or still from previous chemotherapy that ended in June. Sorry for just asking straight out but hoping someone may have some insight. When I was on chemo I experienced low sex drive, vaginal dryness, etc. In between the end of chemo and start of tamoxifen, I began to get my libido back and dryness was no longer an issue. Well what do you know, here I am again experiencing this! My hubby is understanding but I'm just down right frustrated. Thanks, can't wait to meet you all ♡
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I am on day 7 of Tamoxifen. . I do feel stiff, especially my hands. The freezing to broil is exrtemely annoying. I have a new rash on my breast - looks nice, NOT! What else is in store for me? Not sure if some of these minor se are because of Tamo or effects from radiation I finished a month ago. How long does a person need to be on Tamo for any se to kick in?
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