Bottle o Tamoxifen
Comments
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Hi all,
Laurie, I totally relate to your comment. I just got my prescription filled on Friday but haven't gotten the nerve up yet to take the stuff. I'm going to do it tonight after reading all these posts and the reminder from Basha that I CAN stop taking it.
So, I guess I'm joining the train!
DeAnn
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Hi, Gillkath and DeAnn--
Welcome to our train! I've been riding since early November, and so far it's been fairly smooth. Some joint pain (now resolved pretty much) and hot flushes (not usually true flashes), but that's about it. Basha's right...if the tamox gives you big troubles, talk to your onc about switching meds, changing dosage, etc. Plus, you get to ride with really fun people! If you don't believe us, just ask us. :-)
Good luck, ladies...down the hatch! Nothing ventured, nothing gained. (How many cliches can I come up with in one post?) See you tonight in the bar car...a glass of red wine awaits me this Monday p.m.
Lynn
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I finally got the nerve to pick up my script today too. I decided this would be as good a day as any. Must be the thing to do in Minnesota (hi DeAnn) ;-)
I'm with you Laurie...I feel very fearful of this step and I have no clue why. I know I'm not a big meds person, but sheesh I've been putting chemicals in and being zapped with radiation left and right...this really SHOULDN'T be a big deal.
I suppose I'm nervous that the se's will be tough and I won't have the nerve to quit the tamox, or that I'll have no se's and be worried the tamox isn't metabolizing. I guess I feel that this is a no-win situation. There'll be no pleasing me either way. lol I know my insurance doesn't pay for the test to see if I am a metabolizer, so just like everything else...I'm on a wing and a prayer here. At least there's been many long term studies complete on the tamoxifen. I do feel confident that it's a tried and true drug, regardless of how it makes me feel.
Well...I PROMISE to be a bit more uplifting and positive the next time I come in. Just a bit nervous. You ladies seem very fun though, so you've given me confidence that I'll be just fine.
Off I go to pop my insurance....
Hugs n love....
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Hi Laurie,
It's okay to be scared-- I was afraid to take it, too. But I finally started it two weeks ago, and so far I have to say (knock on wood) that everything is pretty much fine. So far I really haven't had any major side effects other than some ovarian pain a few days ago, which may not have had anything to do with the tamoxifen. I also had hot flashes the first night I took it, but none since. I'm just taking one day at a time. Reading the posts in this group help me a lot, because everyone here is so nice, and it also helps me to know how other people are feeling, and what things to watch for.
I hope you'll feel more comfortable about taking it, and that the posts here will help you as much as they've helped me.
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Been reading for a while and thought I'd jump on board. I've been on tamox for a year now and am coming to terms with it. At first I had tremendous hot flashes and zero sleep. After a couple of months those SEs eased up and I'm now left with occasional hot flashes, some fatigue and a lot of joint pain. I considered going off it many times over the last year, but in the end I'm much more afraid of reoccurance than the SEs of tamox. I'm going to try to tough it out.
A lot of women don't suffer from SEs and because of that I would encourage anyone being offered tamox to at least try it. If the SEs become unbearable, you can always go off it.
Also, I was originally given a twice a day prescription but I had so much trouble remembering to take it that I just started taking it once a day. I haven't noticed any difference in SEs since I made that change.
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Hello!
Just wanted to add my experience to the mix. I think lots of times we only comment if something is difficult. I have been on tamoxifen since April 2005 and honestly I feel better on it than off. Before diagnosis, I was pre menopausal and had horrendous periods and was struggling with mood issues for about a week every month. I am now still premenopausal but not having periods (chemo), and I am on a more even keel. I don't notice any side effects--maybe a little weight gain, but my nickname is Groceries, so there you go. I do exercise quite a bit, nearly every day, which may help. I get mild hot flashes.
I am currently struggling with whether to get an ooph. so that I can become postmenopausal and take AIs. That would improve my prognosis, but I'm doing so well on the tamoxifen.....I have an appointment with the oncologist this week and will discuss it.0 -
Hi ladies,
You guys are wonderful to respond with such optimism. You are all right of course that I can stop the medicine if I feel poorly. I am not a medicine person at all, but I managed my way through chemo so this should be an easy decision. I thank you all for your comments and will report to you on how I am doing -- I hope to get the courage up today and take my meds!
Thanks, again.
Laurie
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Hi Laurie,
I'll throw my 2 cents in too... I'm one of those who experiences very few SE's... I'm also one of those who might feel an ache or have some kind of symptom, but I don't blame it on the Tamox. I don't know why exactly...
I'm not a medicine person either...that was my biggest challenge, atcually remembering to take the danged pill (I'm on no other meds).
My oncology nurse in NY thinks that Tamoxifen is a miracle drug and that it should be in the water... Once she said that, I figured there was absolutely no question as to whether or not I would take it... Like the others have said, anything to keep the awful curse away...
Hope you are able to make peace with your decision!!
Hi to all!! I was dreadfully sick last week. Had a 103 fever! Can't remember the last time that happened...maybe 30 years ago!! :O Ended up losing 10 pounds...I guess that's a positive of being so sick... Now if I can just stay out of the Chocolate Car, maybe I can keep it off!!
Virginia
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For those of you who do have side effects on the tamoxifen, I was wondering how long it took you to start having them. I've been on it for two weeks, and so far no hot flashes. I had one the first night I took it, but now I'm thinking maybe that was a coincidence or stress or something. Does it take a while before the hot flashes start? Of course, I read all the info about people who don't metabolize it and have their cancer come back, so I'm freaking out just a little bit. I put a call in to my doctor but haven't heard back yet.
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Is it better to take tamox in the morning or in the evening? Just curious -- if I get the courage up, I'm going to start taking it but I wanted to first ask you guys your opinion on what time of day to take it.
Wishing you all well.
Laurie
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Laurie,
As far as I've been told, time of day to take Tamox doesn't matter, and you can eat or not eat with it. I have to take my armour thyroid in the morning with nothing else, so I take my Tamox in a big handful of vitamins at lunch. My oncologist is very well-respected in Houston med center and says it's completely fine.
Don't want to jinx myself, but I'm at 4 weeks with no other side effects than it's slightly harder to fall asleep at night. If that's the worst of it for me, I'll take it gladly!
Oh, and Cowgirl, I had what I thought were beginning hot flashes the first 4 days I took the Tamoxifen, so I was worried they'd get worse too, but I haven't had them again so far.
EHK
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Laurie,
I found that taking my Tamoxifen at lunchtime worked better than in the evening. I take it with food, since it seemed to make my tummy feel a little disturbed. It seems that I don't get as many hot flashes at night, when I am supposed to be sleeping, if I take it at lunch time.
Hugs
Harley
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Cowgirl, you may just have to experiment and see with time of day. I've only been on it for 7 weeks. The first 2 weeks were wicked, PMS/cramps-wise (but I didn't get a period - go figure). I thought if I took it in the evening, I might be better off, so that's what I've been doing, and I've been symptom-free for over a month. No hot flashes yet (knock wood). Some trouble sleeping, but that could be MANY things. Good luck!!
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Cowgirl - If I remember correctly (which is questionable these days) it took about a month before I started noticing any SEs. The hot flashes/night sweats were horrendous for about another month and then my period stopped. The SEs slowed down tremendously once that happened. Then after about 6 months on it, I started getting the joint aches.
Gillkath - I don't think it makes a big difference what time of day you take it, but as you can see from some of the replies, it may make a difference in the SEs you experience. I started out with the twice a day scrip and now take it only once a day because it was too hard for me to remember to take it twice. I take it at night with my supplements (rad onc suggested that, not sure why but I like her so I followed her advice -- seems to be working for me).
Good luck!
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I started taking tamoxifen last October, twice a day per my onc's directions. No side effects. None at all. I'm very freaked out that it isn't working. At first I struggled with the idea of taking a pill for 5 years--at least surgery and rads had an end date that I could see, 5 years from now? I can't even be sure I will still be alive 5 years from now, especially if the stuff isn't working. I can't plan a vacation 3 MONTHS from now without being scared to death that the beast will come back between now and then, how can I commit to something for 5 YEARS? So far, I've managed to commit to one month at a time, with each refill. I guess I'm proof that NOT having side effects isn't very much easier than HAVING side effects.
Are side-effect-less people allowed in the bar car? I really would like an Irish Coffee right about now. . . .
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Come on in, Mainer--
Anyone is welcome in the bar car...one Irish coffee coming right up! I don't have many symptoms either, but I'm just banking on the fact that it's working...don't know what else to do. There are few guarantees in life, I guess.
Now if I can just get the IRS off my tail...ack. Problems with my 2006 return; please send good karma for a quick (and financially painless) resolution. Just what I need, right?
Take care, fellow passengers...
Lynn
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Hello! Native Mainer, I have been on tamox for a bit now with very, very mild se's (if any). Sometimes I feel hot, and my cycles are occasionally 28 to 43 days between periods. That's it. I had the big test that said I am an intermediate/ extensive metabolizer. My sister is on it as well because she is incredibly dense (99%) and because I had DCIS. She has had no se's except weight loss!!! I was surprised that she found a doc to put her on it, but she did. Nevertheless, some women have se's, but not all. Nada.
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On Friday, I will have been on tamox for a whopping 3 weeks. So far, I've had nausea every day. Abdominal cramping nearly every day. Some sort of body ache every day and pretty extreme fatigue. I would say these are the worst SE's for me so far - pretty much feeling like I'm coming down with the flu or something. As for hot flashes, I think I would characterize mine more as "flushes" where my face feels warm, and sometimes the back of my neck as well - almost as if I were running a fever. I've had some trouble sleeping and some night sweats, but that may be helped if I adjust the time I take the pill. I follow up with my med onc next Friday and we'll go over the SE's.
Where do I go for a chocolate martini? The chocolate car or the bar car?
Barbie
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Hi ladies- I'm sure the answers to my questions are somewhere on the 35 pages of this thread
, but I'm not sure where to find them! Hope you don't mind if some of these things are a repeat.I am 36 and started Tamoxifen 5 weeks ago. Over the past 2 weeks, I am having a very hard time sleeping and started a little Melatonin a few nights ago- it seems to help me fall asleep (but not stay there), so I will continue experimenting with it and hope to really get it to work for me.
More recently, I am having terrible hot flashes now at night (milder ones during the day). I finally fall asleep, then wake up wet and freezing an hour later! Then I must change clothes and put a towel on my side of the bed before I can try again (or kick my hubby out and take his nice, warm, dry side...). I DID start my period 4 days ago and will say my hot flashes really kicked in then. Is it common to have them when you're having your period? I am really hoping these hot flashes are a 5 day a month sort of problem for me.
I have heard about Melatonin for sleep and Vit E for hot flashes, but does anyone else have a non-medicine they think works? I'll keep a bottle of sleeping pills on hand for emergency use, but I don't want to make them a habit.
Oh- a bit of info- I never had chemo/rads, so I know this is all due to Tamoxifen for me. I take my 20mg Tamox in a handful of vitamins at lunch every day, along with a dose of Wellbutrin (all approved by my great oncologist in Houston). I cannot take anything in the morning because I take a thyroid supplement, and it has to be taken alone. Just taking a little Melatonin at night now.
Thanks for any help you can give!
EHK
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Hello to all my tamoxi-buddies!
I'm back from Palm Springs. It's taken a few days for me to get caught up on all the postings but I'm up to date now. I'll try to 'talk' to each of you but I know I'll forget someone. Don't be mad at me.
Basha,
Your art is very powerful. Maybe you can put together a website where we can see more. I hope Sanibel is treating you well.
Virginia,
Glad to hear that your dad's having some better days. Stay on top of the staff -- if they know that you are watching, they will do better for him. It's kind of the squeaky wheel thing.
BTW -- we did find another great restaurant and even though it wasn't on the menu, they made rasberry souffles for us. I was in heaven. Maybe a souffle car might be in order!!
To all the newcoomers --
I can only agree with Lynn -- we ARE a great group. Jump on, find your favorite or most comfortable car and sit down.
I do have some other news though. I saw my med onc on Tuesday. I was telling him about what I believe are s/e of the tamox -- joint pain, hot flushes plus a few others. (To all who are just starting, I've been on tamox since Dec. 5 and the s/e took over a month to almost 3 months before I took note of them). He told me to stop taking it and to chart each of the s/e each day for the next 4 weeks. He wants to find out if they're really s/e or did I just notice them and attribute it/them to the tamox. I'll see him again on 4/21 and then we will decide if I will continue with it or not.
So, I'm jumping off the train for a few weeks but I'll try to stay in touch and up to date with all of you. I feel like Virginia -- I'm more afraid of a recurrence than I am the s/e's. I'll tolerate and work around the s/e's to feel more confident that the beast won't return. To those trying to get started, keep that in mind. Would you rather take a pill for 5 years or go through all this again?
You are a great group of women who are taking this thing on with such grace and courage -- and even some humor. I wouldn't have gotten this far without you.
D
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Hi all,
I haven't been on the train for awhile, I've been hanging out on the HUMOR thread...
Hope everyone is doing great!
I am feeling good, finally figured out why I was having so much back pain... A couple of weeks ago I got the bright idea to flip our mattress over... STUPID! Even with the help of my dh, the mattress fell against me, and OUCH! it hurt. Then I felt ok for a while, until last week, I was having such HORRID back pain and I thought WTH? So, at least I figured it out, and took some Tylenol, my favorite placebo, now that I can't take Ibuprofen, since it seems to put bruises all over my body!
Anywho, just wanted to check in and say HI to all the newcomers!
Relax, and enjoy the ride! I also agree with Virginia...I too am so afraid of a recurrence, and if taking a pill every day will help prevent bc recurrence, then I am definitely in for the long haul!! My onc says the plan is for me to take Tamoxifen for 2 years and then switch to an AI for 3 yrs. I'll cross that bridge when I get to it!!
Have a great day!!Harley
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I just realized that I didn't report on Palm Springs!
It was wonderful. I did nothing but sleep, eat and sit by the pool. I actually met someone who lives just a few miles away from me here in KC! Small world.
The weather cooperated most of the time (one rainy day) but otherwise glorious.
D
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Harley --
Ouch is right! No wonder your back hurt. I've had back problems for years so I really feel for you. Take it easy -- no more mattress flipping! No flipping of anything heavier than a pancake!
D
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Hi Girls.... I need to go into the SLEEPING car and rest up... I think I got so sick (NASTY head cold) b/c I have been running back and forth with Dad. I know I shouldn't complain and should cherish every minute I have with him, but I have been working all day, then going to visit him every night... I just want one night where I can go home and stay home.
Thank you gals for the kind words RE Dad. He definitely has good and bad days. It's so weird how he's so "normal" one day and the next it's like a 180---talking crazy. It's so upsetting. The plan was to bring him home today...we'll see how that goes b/c I think he'll be too much for us to handle...
I have been on the Bertolli Frozen Dinners for Two diet...I feel like I could explode. (My company makes these dinners...they are delicious and have 20 gajillion grams of fat....) Anyhow, we're always working on them and I think I had 20 tastings today. Burrrp.
Harley- you crack me up with the bed story. I turned my mattress by myself last weekend... My bed is a Tempur-Pedic and weighs 1000 pounds. I'm single and sleep on only one side of the bed --- so I feel the need to rotate it so I wear out each side evenly. I must have looked like a real spazz trying to move the mattress myself. Worked up a good sweat though!!
Layne- glad to see you posting!!
Deb- glad your vaca was great...and that you found another souffle! Ah, the little things in life...
Basha- I loved your artwork as well! You are very talented!!
Hugs to all - Lynn, Cynthia, everyone....you are my saviors and my touch with "reality" when I feel like I am cracking up...which is all the time lately. Last week I doubled up my Xanax dose (allowable) and relaxed very nicely...
Tomorrow is Friday...thank goodness. I cannot wait to sleep late on Saturday... :O
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I finished rads two weeks ago and am now considering tamoxifen. I had DCIS, grade 2, with two excisions -- clean margins -- and six weeks of rads. I've learned so much from your posts over the past few months. I haven't decided yet, but could I be a non-using passenger on the tamox train for a while -- until I decide what to do?
Darah
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Hi everyone,
Well ..... I finally made up my mind that I am going to take the tamoxifen -- I have had my prescription since January, I filled it last Sunday, and will begin taking it tomorrow. Every doctor that I have seen in the last week keeps telling me that I have done the hard part, surgery, chemo, etc. and that tamox. is easy. So, I'm just going to bite the bullet -- time to join the tamox. train --
Wish me luck.
Laurie
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Thanks for the free ticket and the warm welcome! I definitely will be traveling on this train and visiting this car of knowledge in the near future.
Laurie
PS -- I agree about the half-priced Easter candy. I swear that I have been living on malted milk eggs and Reeses eggs!
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Yummmm Reese's eggs...yes, I got some at half price. I think a Reese's peanut butter cup is nearly the perfect food (besides mashed potatos).
After my first few rocky weeks on Tamox, no SE's lately except lack of sleep. I can't get to sleep at night (up until 1 or 2) and SO wish I could sleep-in in the mornings. I indulged and didn't budge out of bed until 10 am on Easter. Don't tell anybody!
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