Bottle o Tamoxifen
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Hi , Giva and Uds
I have been taking tamoxifen for four months now. first week of tamoxifen almost killed me, I took at bed time, then I was swollen like a balloon, nauseous, headache, heart problem, I called my MO and she let me stopped for one week and then started again, but I changed the time to take it, instead of taking at bed time, I started taking in the morning, then magic things happened, most side effects gone except light dizziness and hot flash! I still feel brain foggy, but my MO said it caused by chemo. also I found exercise help me a lot. the body need time to adjust to medication, it does get better with some people, so hope you get better!
best wishes
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Music67, I'm surprised that MO let you take it again.Sounds like an allergic reaction to me.Your brave to have even taken it again.I'm glad your side effects have gotten better.
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hi again tanks for the info about melatonin and switching to night time tamoxifen . Going to try anything and doc said it was ok.
To bottle of tamoxifen I have a lot of joint aches and in my calves I have pain too . I also have a neuropathy in my souls and toes. They are giving me neurotin ( gabapentin ) to take and I did not think it was working until I went off it...boy , so I am taking it again ( ( 900mg 2x a day) my girlfriend had it bad and her onocologist gave her lyrica . Just thought you'd like to know. No negative side effects from the neurotin. Good luck
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Uds -- that totally makes sense. We all so long to go back to no drugs and our normal lives, and it seems like we won't ever be normal again. Hang in there -- and know we get it. (((Hugs)))
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I started Tamoxifen on January 1st.
Usually I would take the tablet on an empty stomach an hour before dinner.
A few hours later I would feel a bit of nausea but nothing serious.
This week however I have been feeling more and more nauseous until its now basically all the time.
I only feel better when I eat.
I still have mouth blisters - its been a week since they started.
Tomorrow I will try taking Tamoxifen with food and see if there is a change.
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Hey everyone, I have caught a cold. Man, working for just a couple of weeks and already sick. I am determined that it will not settle in my chest and take forever to get over!!!! My doc has me back on my inhaler and cough medicine.
I use to read about our "new normal" and want to barf. But now I get it. Things have changed for me and I am trying to go with the flow as they say. Finding the right drug combo was key for me to be able to function. Now I tape my fingers and thumb every morning, rub in my arnicare cream, take my pills and am good to go. My doc has me on a strict diet to lose weight. She believes that will help alot with the fatigue, aches and pains. I am a bit of a doubting thomas, but will try anything at this point. I have to say the tamox is better than the arimidex for me. I have been "practicing" yoga for a year now and with the weight loss am doing better. So I am trying to not look back and not compare me to the "old" me, because whether I acknowledge it or not I am getting older. I am not expecting myself to be able to do things I used to do as well, and sometimes I am pleasantly surprised!
Hey Josie, I "recognize" you from another thread!
I asked at my drug store about a shortage of tamox, he said he didn't see anything about it, but then laughed and said watch, now we'll have a problem.
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Bounce, my MO told me to take Tamox after dinner...
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Hi Girls -
I recognize some of you from other threads - especially Teamkim! It seems I have followed you around from the oncoplastic reduction thread to radiation to here!
I have read through the last few pages of everyone's posts which are so helpful. Thank you for posting your experiences. I am sure there are many lurkers reading and being helped by what is being said!
I picked up my Tamoxifen from CVS yesterday. It is the Watson brand of course which seems to be all that's available these days. I am opting not to start until after we return from vacation on Feb 25th. I just want to enjoy the vacation without any worry of side effects.
I have read through several threads here on BC.org about Tamoxifen. I am really nervous about taking it but my Onco thinks it's worth a try. He said most of his patients are able to tolerate it but that about 50 % experience side effects. I am most worried, I guess, about gaining a lot of weight from it and just feeling bad on it. I am 52 and just am starting to skip periods so in the beginnings of menopause.
I saw the thread about different reactions to different generic versions of Tami. Is that a common experience or rare? I would not say I am particularly sensitive to foods or meds.
My diagnosis was DCIS - high grade with very large and clear margins. I have already made my mind up that if I am miserable with side effects and start gaining weight that I will stop taking it. I have struggled with my weight my whole life and would just get massively depressed if I gained 20 lbs! I would rather be monitored more closely. But of course, another cancer in the same breast would mean a mastectomy.
Anyway, I wanted to say hi and let you know I will be joining you.
Dawn
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Thanks,Josie
not I am brave, I had no choice, she is my MO and professional unless i change my MO, but here in toronto, is not that easy to switch around. she also said she will keep me on tomaxifen even my ovaries out! I will ask her next time seeing her. but she seems a very smart doctor and knowing what she is doing!
take care
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Dawn, I actually have lost weight, not much, though. I gained 30lbs since diagnosis. I lost 10 already.
Still 20 to go. Not moving or doing any exercise now after my exchange, in fact in bed now but went to work during the morning and started getting some pain so came back to rest and feel better for Monday.
I don't have any noticeable SE. When I started on Dec 25 i felt very tired and my MO told me to stop for one week. I restarted two weeks ago and don't feel tired anymore.
People that have taken Tamox before have told me they didn't have any SE.
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Thank You Headeast!
It is good and reassuring to hear that! Gives me hope!
Yes, get some rest. Wishing you a fast recovery from the exchange surgery.
Dawn
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Mac, hoping you fight off that cold w/o much effort..and can enjoy being back to work. It is amazing how easy it is to get sick once back in circulation!
Dawn, I like your idea of delaying the start of tamox until after your vacation. It will make no long term difference in terms of your treatment, and will allow you to enjoy your time away! As others have said, many women take Tamox with no significant side effects. I had expected that....but just happen to be very sensitive to meds, apparently...and with my estrogen being messed with!
Good luck!I sure wish we could take benedryl regularly since I know all my now really annoying allergic itching would be considerably reduced with that. I think people must figure I have lice since I am constantly scratching my neck and hairline! Would that it could be so easy!
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Macatacmv, hello to you to.I remember you also from anouther thread.Sorry to hear your under the weather. Good luck with the weight loss.I'm just finishing a 3 month program at the "Y" it is free for cancer survivors and has been really great.
Music67, your welcome.I really think your brave because I'm allergic to so many medicines and if any caused me to have swelling I would freak out.
Dawn, good luck and it seems you and I may be the only ones on this thread with DCIS and its nice to know In not alone.I'm in the same boat as you I am kind of on the fence but I had some eye allergies since starting Tamoxofin and discontinued due to this eye allergy.But I'm willing to restart since the eye allergy may not be due to the Tamoxofin.
I also wanted to comment about the weight gain.Could it be due to the lack of quality sleep?
The weight gain was not my side effect but found a lot have that complaint.
But the feeling like a zombie all the time was my experience and when my brand was switched thanks to the pharmacy the next script made me feel like I was sleeping with 1eye open.A n y little thing would wake me up and could not get back to sleep.This time I'm going to take it at night time or maybe evening.
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thanks SophiaMarie. Oncologist wants to see me Monday morning so at least it'll get checked out quickly.
Dreams are still pretty vivid but headaches and nausea subsiding so I'm pretty happy overall being a few weeks in.
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Hi Dawn -- we meet again!! lol!
I weighed in at my weekly appt with the RO and lost 2 lbs since last week. Maybe my body is adjusting to the Tamoxifen and settling in.
Bounce, I take my Tamoxifen with dinner, along with all my vitamins and blood pressure pill. Makes it easier to remember when I take them all at the same time. So far, no nausea or any other adverse reactions.
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HI all
I wanted to just pose a different idea with the Tamoxifen and vacation. I actually started mine before I went on vacation intentionally. I have a stressful job and don't get regular sleep and/or meals and have to travel a lot so my idea was to start it and then be on vacation for 2 weeks where I can sleep late, go to bed early, no phone calls, meetings or stress and just tune in to my boday see how I feel without all the drama.
It actually worked well for me to do that. I started on the 6th of Dec and flew to Miami for 10 days and really pay attention to how I was sleeping/feeling etc.Lots of walking on the boardwalk and lots of yoga- yuuum. I had a bit of nausea and heartburn as well as some waking up at 0-dark-thirty and not being able to sleep but that is not new.
Now that I am back at work and the stress response is back in full swing I find a lot more sleeplessness but I don't attribute that to the pill as much as the work which makes anything the pill is causing more accentuated. I am focusing on yoga 2-3 x/week and leaving work by 530p or coming in later the next day
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I will be joining you ladies , picking up my tamoxifen on Monday
I'm considered hormone neg. (3% only) but all my doctors agree I should give it a try !! The primary cancer was so small they didn't get a good sample for more testing so they all feel its worth a try !! I'm 44 , stage III but with a complete response to chemo !! I'm ultra sensitive to meds even more so now after chemo. 0 -
Hi girls ...new to this thread. ..wanted to say my first week was so bad on tamoxifen that I called the dr. He prescribed ToFron for nauseous and to stop for a week. Tired nauseous achy sore in my nose ears are full feeling and eyesight blurred. I work a swing shift so meds are always taken at different times. But if I take it at dinnertime things are so much better. Will be stopping on my way home for time released melatonin. ..hoping my sleep will improve. Will be seeing oncologist on monday so will know more than. I can tell I have already put on a few pounds so I am gonna have to find the energy to do more exercises. Hope everyone has a nice weekend. ..they are all nice I used to say..but I work 12 days on 2 off . Getting tired of that now.
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Aw sorry to hear you had such a rough start, jeni72. Hope the switch to evenings and taking the melatonin will help!
I'm nearly 3 weeks in and still not-so-patiently waiting for any kind of SE to kick in. I'm so worried it's not working. I know some people don't get SE, but there have been studies that say that people who get hot flashes have better long term outcomes, so just in case that's true I'd like to be in that category :-)
josie123, what is that program at the Y? My daughter and I just joined the Y last week, and I had no idea they have any kind of cancer survivor program! If you happen to remember the name of it will you let me know? I'll ask about it next week when I go. I'd love to get a little help losing those nagging 10lbs I put on with chemo.
annika12 so happy you had a great chemo response! I'm super sensitive to meds, too (never could take nyquil or daytime cold meds because they are too intense, and DH always jokes that I'm a cheap date cuz I can't even finish one glass of wine) but I'm having no response to tamoxifen so far, so you just never know. Hope it works well for you!
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Hello ladies, I have been reading this thread because my MO suggested that I try Tamoxifen so I hope to do that by the end of the month.
Ycats, the program at the Y is the Livestrong program for cancer survivors. My local Y just started a session this past week. It is free and if you're already a member they don't charge you for the 12 weeks that the program runs. It meets twice per week. This week was a meet and greet, and assessments of balance, flexibility, walking and strength. Over the course of the next eleven weeks we will get to participate in several classes just for us, work out in the cardio and weight rooms, get classes on nutrition and then have a final assessment at the end to see if we improved in any area. It is an intro to the Y to see all that it has to offer. There was a pre-screening to determine eligibility prior to the program. Good luck!
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ycats, my MO says the studies linking hot flashes to more
effectiveness on Tamoxifen aren't conclusive. They might make one feel
better in the event of hot flashes, but I wouldn't worry about not
having them.uds17, you might have side effects on Tamoxifen for a while, then none, then different ones.... In other words, it's not the case that whatever is bugging any of us will stay that way for the full run on the pill. Variability seems to be part of the ride.
jeni72, hope you found the controlled-release melatonin. I live in a rural area and couldn't find it in stores, so I got some on Amazon:
It works pretty well for me too, although I use Ambien more often because it's faster-acting (and for a bad reason--Ambien wears off faster, and I generally don't have 7 or 8 hours of time for sleep).
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Thanks RunFree16 xoxo. It seems that so many of the studies are inconclusive, doesn't it? The more research I do, the more I find mixed results. Makes it hard to know what is the right course of action. I feel lucky to have gotten this now versus 20 years ago, but then I think if only I could have waited another 20 years, we'd have so many more answers!
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thank you ycats ....gives me hope
My hubby also always calls me a cheep date for the same reason lol !! 0 -
ycats - I didn't start to get any hot flashes until about 4 months in. I still don't get them that often, and when I do they are mild, but I do get some.
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Josie - Hi. When will you be restarting? Glad you did not have weight gain and hope that theTami did not cause your eye infection.
Corky - thank you for posting that info about the Livestrong program at the Y. I just emailed my local Y to see if/when they will be starting a class. It looks like a great program. I could use it now.
Here is the link to the Livestrong/Y program. You can find a Y offering the program here.
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-the-YMCA
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Thanks ladies for the SE and Livestrong info! Seriously don't know what I'd do without you all here - thank goodness for modern technology so that we were able to find each other. xoxo
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BEen on tami 90 days have some stomach cramps lots of wakeful nites and some nausea. Im 75. Got my heart scan results and it was positive for heart disease. Im scheduled next week for stress test and other heart tests. Hope I dont have to have surgery. Test results will tell. Its 3 am can't get to sleep. Best to all you Tami gals.
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misspinky, how scary! What kind of heart disease is it, if you don't mind my asking? Better to know about it than not know, right? But upsetting of course. I hope you got some sleep.
ycats, you're welcome! I think doctors do a lot of 60-40 reasoning, like, we don't have 100% certainty about this, but we do have 60% certainty and that's better than nothing. Of course that means sometimes they're wrong, but it's wrong not to act on possible information too. I think about that when I hear people say they don't want to take Tamoxifen because of the side effects. If the likelihood of benefit is larger than the possibility of harm--and it is MUCH larger--then it's worth doing, even if harm does find us, as it occasionally does. In a way, we all make the same calculation when we get into a car, but we're just more used to it. I'm grateful to be able to take Tamoxifen so far.
Update: my hot flashes have really stopped, haven't had one in over a week. It took about two weeks back on the Teva brand and then they suddenly left me alone. I was able to refill my Teva prescription again yesterday using 10mg pills. Hope the rest of you are able to get the brand you want, if not now then soon.
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Well said RunFree16 - "the likelihood of benefit is larger than the possibility of harm"
I too am staying focused on the good T is supposed to do and trying to recognize the side effects and let them go without focusing on them too much.
My intense nausea passed after 3 days just as mysteriously as it arrived. I still have mouth blisters but they aren't bad or causing pain so I am going to ignore them and hope they too go away.
Hopefully being calm will help.
I realized that when I get tense or stressed it triggers a hot flush. The other day I was cold so I tried to trigger a hot flush by making myself tense but it didn't quite work. Instead I ate a small hot pepper - that triggered a hot flush.
It is interesting to see what can set me off!
I have heard hot flushes are easier to cope with in summer - as the AC or fan can be switched on and there isn't the "now I am freezing cold" part at the end like in winter.
misspinky - how are you doing? Hugs
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Bounce, re hot flashes in the summer vs winter:
I had periods of hot flashes before my Dx and tamoxifen use, but they were limited to the summer. This is my first winter, and you're right that I think they're worse at this time of year. If they didn't result in a sweat that renders me shivering, they might be welcome this time of year. Probably the most miserable scenario is at the grocery store, when I'm wearing my winter coat ... Yuck!
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