Bottle o Tamoxifen
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Daninayd - I split my dose in the beginning but it was too much of a pain in the rear. I had some nausea issues with Arimidex and Femara so thought I also would the Tamox. Anyway, I decided to take the whole pill at breakfast with a glass of milk. Problem solved. Been on Tamox over 2 1/2 years and now it doesn't matter what I take it with or when I take it. Hope you continue to have no side effects.
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I'm a month in and I'm not tired, I'm EXHAUSTED!!! All the time!! I'm in my bed usually before 8pm & basically just lay there because I don't really sleep
Occasionally, I'll take an Ambien but I only get about 4 hrs out of that and is groggy for hours..I have a dr appt this week. This can't be real. I went grocery shopping earlier and it stripped all the energy I had0 -
Softness, sounds like your doc appt can't come too soon! I know that feeling of exhaustion, tho pathetically enough I feel like I am getting used to living on practically no sleep....very bad for one's health! Good luck with getting some solutions from your doc for relief. Sometimes, they will try Gabapentin to help with sleep (off label). Do keep us posted...
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Hey ladies,
This is my first post. Four doses of tamoxifen so far and it has already affected my period, which was already starting and magically disappearing. A little tired, but it comes in waves, and I have a rash too! On my back, I thought it was mosquito bites and then tonight thought it was poison ivy, but will keep an eye out. So glad I read this post when I did!
I saw a nutritionist bc of the many different articles on soy etc. she said everything in moderation. Don't eat soy every day but have edamame occasionally. Also mentioned the same about flax seed, flax oil is 100% fine. Totally recommend chatting with someone affiliated with your cancer center if they have one available.
Saw all the SE on loss of libido and that alone made me want to skip this treatment. I will see a sex therapist next!! 😀
Will keep you posted!0 -
Softness - You may want to try Melatonin for the sleep issues. Many have tried it and it seems to work. You can get it at any place that has a vitamin aisle. It is inexpensive and you will have to figure out what dose works for you. Since I had nerve damage from rads, I am on Nortriptyline but because it is giving me some cardiac issues, I am in the process of getting off it so I may also need to get a bottle of Melatonin.
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Hi ladies,
My mom started Taxomifen a few days ago. She started rads last Thursday. I'm not sure which is causing this side effect but she has had horrible difficulty breathing. I have her my albuterol for it because I have asthma.
Did any of you experience this?
Originally they had her on Arimidex which was PERFECT but once her bone density scans came back with osteoporosis, her Doc suggested Tamoxifen.
Insight/advice?
This whole cancer thing sucks! I just want my mom to have a quality of life again!
Thanks ladies
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Chelsea, I'm so sorry to learn about your mom's cancer and new difficulty. Since it's hard to know what is causing her breathing problems, I hope she is able to get in touch with her MO or PCP immediately to have this checked out, and have her own plan developed to treat this serious symptom. Using someone else's meds could make the problem worse depending on what is causing this symptom. I hope she can have this evaluated right away, so you can both feel better. (((((HUGS)))))
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Softness, thanks so much for sharing! I feel completely the same way. Was on Anastrozole for 6 months, took a 6 week breather, now on Tamoxifen about 6 weeks. Have been taking liquid melatonin for months, it was working great up until a couple weeks ago. Don't get much sleep or good quality sleep, the hot flashes don't help. Have been exhausted all the time, when I do any small physical activity I feel wiped out. Was beginning to think I'm just going crazy. Have just bought a Frogg Togg towel to help with hot flashes, too early to tell. Also, had blood work recently and my glucose level sky rocketed so I'm going to have to adjust what I eat. Just when I when thinking I ought to be putting the last year of bc behind me....
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Thanks Lacey!
Her RO told her to stop the Tamoxifen until after rads to see if her breathing gets better.
Hopefully something will change!0 -
Well popped another blood vessel in my eye......thanks Tamoxifen!!!!!
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mstrouble - Sorry to hear that. Tamoxifen in some ways is not our friend. Hope you feel better soon.
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Glad to hear I'm not the only one feeling tired these days.Today I felt almost like I could fall asleep.And any sudden movement made me lightheaded.I just filled my 3rd bottle of Tamoxifen and this time although the same manufacturers Teva it was in the actual pill bottle with the manufacturer label instead of the normal amber plastic pill vial with a .It still had a label slapped on top of the bottle.The pills are the same though.I just almost felt like I could pass out today.It almost felt like my BP dropped.My mom was here and she took my BP it was ok though.Maybe it's my allergies or stress.It was so stressful on Wednsday at work . And then I'm off tues and Thursday.My eye has been so itchy also.I read on here where someone explained the blocking of estrogen can lower your immune system and possibly make allergies worse.
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I found out today that MO is taking me off Tamoxifen and switching me to Arimidex. I thought I was doing ok on Tamoxifen but he feels that AIs would be better for me in the long run since I've been dx with a bone met.
He started to speak to me about the side effects of Arimidex but they sounded similiar to Tamoxifen and until I listed them out loud I didn't realize how many I had - I thought I was actually doing ok on Tamoxifen!
With Tamoxifen I had headaches, vision problems, ear aches, hearing loss, excess fluid (everywhere ears, nose, vag-jay-jay), bone aches (jaw, knees, feet, hands, ribs), insomnia and dizziness. Not all at once but ongoing over the 3 years. It seems like a lot but I continued taking it so I guess I kind of got used to it!
I'll be off everything for a week to "reboot" my system and I'm curious to see if the SE's go away before I start the Arimidex.
I wish you all lots of success with your treatments and therapies!
Marie
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Josie, it was I who mentioned the estrogen related allergy impact. I learned that from my dermatologist when she saw my awful itchy eyes this spring and I told her of my increased allergic reactions this year. She explained to me that it is related to how the tamoxifen affects the levels of estrogen since estrogen is protective to our immune system. Oh dear....just another thing to manage. My eye doc gave me a script for a steroid eye ointment which has helped to clear the eye allergy which was awful by July.
Marie, I found that when my doc let me take a Tammy vaca last Spring, I could tell it was pretty much fully out of my system after a week and a half. It is amazing how we just cope with and learn to live with so many of these SEs! Good luck on the Arimidex! I can't even go there since I already have pretty bad arthritis in my hands. So my MO told me this week that we will just try to get through five years on the Tammy...and call it a day! Boy was I happy that she did not bring up that ten year research issue!!
MO did suggest that I try a minute dose of Ativan to address my lack of staying asleep nightly. I tried it last night and am not sure if it was the tiny half pill or the lovely cool bedroom that helped me sleep a bit better.
I will continue the experiment! 0 -
Lacey, thanks for the info.I have had the worst summer of allergies.But too stubborn to take allergy meds.But why is just one eye seems to be affected? And first thing in the morning seems worse.
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Marie - I wish you the best of luck with Arimidex and praying for minimal to no SEs. Unfortunately, I can't take the AIs. Tried 2 of them and no luck with either one of them.
Lacey - My MO also told me 5 years of Tammy and we did discuss the 10 year research. I saw him in June and at that time I was down to 2 1/2 years left - yeah!
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Hi Ladies,
I'm having a lot of the same problems as you were, Marie. I came here to write about my ears buzzing like crazy lately! Also, I have bone pain and sleeping problems.
I took 3 days off of Tamoxifen last week and although I probably only got about 20% of it out of my system, I could tell a big difference with my pain levels and the buzzing in my ears. I also slept better and had fewer hot flashes.
I haven't tried an AI - I just said no when my MO wanted to put me on them because I was more worried about their side effects, but I may have to switch rather than lose my hearing. I've been on Tamoxifen for about 2 1/2 years but finally these SEs are starting to get a little unbearable.
Lacey is right... it seems like we just gradually accept all the pains from this treatment - I guess because they come on gradually.
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Hi gals! You know, I used to post on this thread, but kind of quit after I stopped taking Tamoxifen...
And Hi Jo! You changed your Avatar! Ha! I quit taking Tamoxifen over 2 years ago, because I DID lose my hearing. You know, I hate to write about this or scare anyone, because I know this doesn't happen to everybody, but it DID happen to me.
Just woke up one morning, and my hearing was gone in my left ear! I PM'd this to heartnsoul7… because she mentioned tinnitus!
Long story short... After taking Tamoxifen for 1 1/2 years, I have permanent hearing loss in both of my ears. Left side is worse. And Oncologists or Docs just don't want to hear that you think it is the Tamoxifen!
I researched hearing loss from Tamoxifen, and like I wrote "heart" ...Tamoxifen is a chemo drug, so it can react in some women the same as chemo. Your nerves in your ears are like little hairs... and sometimes they are only damaged, or sometimes they just completely lay down, and it is permanent.
I've worn hearing aids for over 2 years now.... and they are great! Not the same as your own hearing, but without them, I can't hear hardly anything.
I wrote the drug company, the FDA, just trying to get them to acknowledge that this CAN happen.... Never heard anything back. I don't know if it makes a difference in the manufacturer, or the generic, or what. But I just wanted them to include a warning that hearing loss CAN happen, and I've heard from about 5 women on this board who have also lost their hearing from Tamoxifen....
I'm just sorry you other gals are having these SE's.
Also, I also took Melatonin for the sleepless nights! But THEN I had to take ImmodiumAD because the Melatonin caused me to run to the bathroom all day! By the time I was up to 4 Immodium pills a day, I thought WTH? So I quit the Melatonin and didn't have to take the AD anymore!
I'm older than you guys, but the hearing loss happens in some younger women also... But when it happens all of a sudden, then you know it is not "normal" hearing loss...
I wish you all the best... If you want to PM me, or I'll check in on this thread also...Take good care...!
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Chevyboy - Great to hear from you again. As far as I am concerned, whether you are still taking Tammi or not, you are always welcome here. You have had some experiences with it and this is the place to share it.
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HEARING LOSS? EH? I am about 18 months into the tami, and the ringing in my ears and the hearing loss SUCK. I thought it was just me getting old, too much rock 'n roll in my youth. But the downhill slide started about a year ago. There is no cure for tinnitus. I am going after the first of the year to get hearing aids.
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Okay GIRLPOWER! If your insurance doesn't help you any, try Costco.... That's where I got mine.... They are Bernafon Veras9..... and they really work well.... They have since come out with a newer model, but they are basically the same. Sorry about YOUR hearing loss. Mine has never gotten any better..... After your hearing test, get a copy! So when you ever get another one, you can compare.
If I would have gotten...(that doesn't sound right....) my hearing aids from the ENT, they would have been twice as much... Altogether I think mine were about $2,500. I know that's not cheap, but they work pretty good.
The only trouble I have now is I make sooooooo much wax! And I have to use ear candles to clean my ears out. My gal-friend has aids also, but she has never had a problem with wax.
I don't think it matters how old you are! Because some younger gals have this same problem after taking Tamoxifen~
And yes, Hi Jo! I just don't want the gals to think they will all lose their hearing.... I guess cataracts are more common.... but it happened to me.
Take good care! If I can help in any way.... just PM me....!
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Chevy - I'm sure the sistas appreciate your input. I know I always do. I have shared my multiple uterine issues here and have let everyone know that my case is probably not common but it can happen. We all know that knowledge is power!!
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Chevy - so nice to see you back here! Thanks for all your input - looks like this is another problem the doctors don't mention. It must not be all that rare. The least the FDA or the drug company could have done when you tried to contact them is add this to the list of potential side effects. I'm going to call them, too. There must be other complaints! We'll see what happens.
I went to Livestrong.org to see if there were any supplements that might help. There's no cure but they say there has been some improvement if you take B-complex, Zinc, Vitamin A and Vitamin E. I'm going to try that regimen for the next 6 weeks until I see my MO. Then I'll ask her about the tinnitus - I have a feeling she'll act like she's never heard of that before.
Weirdly, my hands and feet are starting to experience a little tingling/neuropathy. I finished chemo 3 years ago so this is odd, but happening at the same time that the tinnitus is getting worse. And they recommend almost the same vitamins to help. Hmmm....
Hey Jo! I agree that all input is necessary for us, good or bad. I don't know about other people's doctors, but mine always acts like it's just me having the problem. Thanks to these boards, I know better!
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Hi all ... My name is Jaine and I am brand new here but thought this board would be a great place to start since I started taking Tamoxifen 2 weeks ago, and am starting to experience side effects - biggest 2 for me right now are insomnia and depression which I find I cannot tolerate. Yes, I am on an anti-depressant for PMSD, but my Oncologist acted like changing it would be no big deal since the one I've been taking for 20 years successfully CAN interefere with the Tamoxifen.
I really want to get off this stuff ... yet, I want to do what is best for me. I am going to be 50 years old, had stage 1A ductal breast cancer and a double mastecomty (by choice)...My Oncotype DX test came back at 17, which is still considered low, so there was no need or dire need for chemotherapy. And my cancer had not spread at all - not into my lymph nodes nor anywhere else. And so, instead of Chemo, my Oncologist put me on Tamoxifen which I must take for 5 years.
I feel very alone, with no one to ask ... I thought that the Tamoxifen blocked estrogen from entering the ducts in your breasts. But I had a double mastectomy with yes, some tissue left, but not much - and certainly no more ducts! So how is the Tamoxifen helping me? I know, I need to ask more questions of my doctor.
I am very tempted to stop taking this drug that sounds like it can cause more harm than good, and not just from reading this site but other authorative websites and talking to people first hand.
Does anyone know if I stopped taking it NOW only after 2 weeks, is that OK? Or should I check with my doctor first? I don't know if going off of it will bring on other side effects. Have any of you ever tried to stop because the side effects became too much and took away from the quality of your life? Also the fear of other cancers since it is a carcinogen?
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Jaine, welcome and I'm sorry you feel so alone.Your not alone and welcome to share any of your fears and concerns.We are all going through it together.
I would check with your oncologist before stopping Tamoxofin.
I was put on a 20 mg dose daily and have found that I am very tired while on it.Almost foggy yet I function.Well yesterday I felt weak and like I might faint so I checked with the pharmacy.They said to mention it to my MO and that it was the highest dose .
I took 1/2 tablet today and actually the fog lifted and I felt like myself again.So that proves how strong this med is..0 -
Jaine, I also think you should call your MO, and I also think you should bring any other relevant providers into the loop on your depression and the insomnia. There are anti-depressants that work with Tamoxifen but that obviously might take some tinkering. In the short term, you might try a version of Josie's suggestion and take 1/2 the pill in the morning and 1/2 at night, which seems to work for some people. For insomnia, people also play around with taking the whole pill morning or night. Have you tried melatonin and other sleep aids? I'm sorry to have asked a dumb question if you're a long-time insomnia sufferer (as I am) and have tried everything. I am having a weird side effect, or at least I think it's a side effect, of itchy rashy skin. Eight weeks and counting--it has been quite the saga. But my strong desire is to stay on the drug, because the other side effects haven't been bad for me and I am sold on the drug's value. As for Tamoxifen causing other cancers, I haven't worried about that. Uterine cancers go from 1/1000 to 2/1000 with Tami, as I recall, but that's still a very small risk, whereas breast cancer recurrences are quite a bit higher without it. Your question about the ducts is a great one that maybe lots of people know the answer to, but I don't. I'm sorry you're having a rough time with all of this. You're right to reach out and take action to feel better, but going off Tamoxifen isn't your only option. I hope you can sleep this weekend because not sleeping makes everything awful.
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Hi Jaine - I'm sorry you are having such a rough time of it. I was taking Prozac before I started the Tamoxifen and after I made sure I'd be able to tolerate the Tamoxifen my onco switched me over to Effexor. She had me stop the Prozac for three days and then start the new one. I love it. I am 53 now and would probably be going through natural menopause anyway. It is hard to tell because after I started the T my periods stopped (hip hip hooray!, that alone makes it worth taking!)
I take the T in the mornings and the Effexor at night. The Effexor can make you sleepy, so I use it as a sleep aid. Honestly I have never slept better. Also being at this stage of life, I really need something to help control my mood swings and to keep the scary thoughts at bay. Effexor does that.
Right after my DX I tried T. I was in no condition emotionally to understand what was going on with me, so I blamed everything on T. I stopped taking it for a year while I worked on healing. The worst part about not taking it was the nagging thought that I wasn't doing all I could to prevent recurrence. Once I tried again, surprise, surprise, I have very few side effects, mainly garden variety hot flashes.
The T is designed to block estrogen from any cancers cells that may be floating around. Being node negative is a good thing, but it is no guarantee that one of those pesky critters isn't looking to set up shop somewhere else in your body. So the T is designed to prevent recurrence, and for us ladies with MX our most likely recurrence is going to be distant recurrence, since there is very little tissue left for a local reccurance (though that is not impossible either).
I think the drug sometimes gets a bad reputation. It is not perfect, but the risk of the really serious side effects are not that great.
Also please be aware we are most at risk for post traumatic stress after active treatment ends, which often coincides with the start of Tamoxifen. There is an article on the main pages of BCO that says 23% of BC patients suffer some degree of PTSD early on.
I hope you start to feel better soon. You have been through quite an ordeal. Be gentle with yourself. You can only do what you can do.
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Hi FarmerLucyDaisy
Thank you so much for your posting. I completely understand that the discussion board is the place to share side effects and problems caused by Tamoxifen but if those people who don't have negative side effects don't write in it creates a very one-sided picture.
As a newbie considering whether to start Tamoxifen or take my chances without it I get a very negative impression of Tamoxifen. I have to hope that there are many women taking it who just haven't written in to say they are doing OK on it. After all we don't complain about the positive or even the neutral.
Having said that it seems like the doctor is asking me to choose between a future possible breast cancer or a future possible uterine cancer!
Are there more ladies out there who can offer me some hope that Tamoxifen is not going to poison me over the next 5 - 10 years or cause me to need major surgery for uterine problems?
I don't know if I am more scared of upcoming Radiation or Tamoxifen.
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Hi Bounce,
I have been on Tamoxofen for 3 months. No side effects yet. I was very tired at the beginning and was blaming it on Tam but, I know think it was a post rads and PTSD combo. I try to eat very mindfully, with lots of protein, stay hydrated and keep moving. I ALMOST feel like my old self. I take it in the morning with a low dose asprin, vitamin d, calcium, and a multi vitamin. That is my routine..so far so good. I have NEVER been a good sleeper and it doesn't appear to alter that for me at all. I have a sister and a good friend who have been both been on it for years with no problems. Hope that helps.
Also, I hope I didn't just jinx myself.
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Bounce, I think you're right that people who have harder times on Tamoxifen are more likely to write in. As for risk of uterine cancer, just look at the numbers--really still very low for uterine cancer. If it were an even trade, or anywhere close, doctors wouldn't be so quick to recommend Tamoxifen to nearly all of their HR+ patients. I tell myself that not taking Tamoxifen over concerns about uterine cancer is like not going to the doctor over concerns about having a car accident on the way. Sure there's a risk of an accident every time you get in a car, but it's a very tiny risk, and we get in the car anyway because going to the doctor lowers our risk of something else by a whole lot more. I hope that analogy makes sense. As for side effects, other than my recent skin issues, I've had a wonderful side effect. For the first few weeks on Tami, my appetite was really high, and it was all I could do not to gain weight. But then it flipped, and my appetite became lower than it has been in many, many years. Starting in my late 20s, I had unstable blood sugar, or maybe I was just very symptomatic when it dropped normally (shaky, faint, frantic), and I have had to eat every couple of hours. With Tamoxifen, I have forgotten to eat my snacks and been satisfied with smaller meals--truly a revolutionary change for me. It's amazing. I've already lost a few particular pounds I've been struggling with for a couple of years. Obviously Tami is just one of those things that is different for everyone.
Jaine, what everybody else said here is true: there's a phase after active treatment ends when women are most likely to have a big rush of fear and sadness. I finished rads on May 3--yay, active treatment all done! got my life back!--and then had some epic crying spells in late May and early June. It took a while, with the help of BCO and my own reading, to realize what was going on. I think we have to shield ourselves from the worst of the fear while we're focusing on the immediate task, and then when things quiet down, wham, there it is. I'm glad I hadn't started Tami yet or I would have blamed the pill.
For that reason, and the post-rads fatigue, I do think it's great to wait a month or so before starting it after rads or whatever active treatment one is doing, if the doctor is cool with that.
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