Bottle o Tamoxifen
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Hello,
I had just a great day. Went to have my first follow up with the onc. and I'm happy to say that I'm clear as a bell. They didn't find a thing and I'm so relieved. I have been stressing about today for a while. I think I asked him 3 or 4 times if he found anyhting and he kept saying that things looked great. Was smiling so much that my faced hurt. Just wanted to share my good news.
Laurie
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Hi Everyone,
Rachel, thanks for all you do for our military, my brother was an Army Airborne Ranger, and all the men in my family have fought for our freedom!! It's awesome what your doing, sure wish I could do something, but it seems I'm barely able to work full time, with not much leftover.
Terri, so far I haven't had a blood clot, just a scare but that was during rads.,and before Tamoxifen. My Onc. still tells me it's the only thing to keep me from mets., for the next three years, so it's worth what we have to go through, with SE. I've been taking Tx, since Dec. and I won't bullshit you, there are SE for me, mostly aches and pains, but then I'm 53 yrs. old and work as a gardener and have for over over 30yrs. so everything would hurt anyway. Good Luck!
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Hey Terri- What's the tailorx study? Wow that's a new one on me, and that's kinda a funny feeling... I remember when everything I was doing was the "new" stuff and that was only 7 months ago. Its a good feeling though, 'cause I am counting on the researchers to come up with good stuff for us, so rock on! What is this 1-2% chance to getting a leg thrombosis and is that .04% as in "four hundredths of a per cent" chance of getting a blot clot in your lung?? I am not making a point here, really just asking, cause this is also totally new to me. Is that 1-2% more chance compared to someone who is not taking Tamoxifen? Do you have some related health issue? And yeah well if it is four hundredths of 1 per cent chance of a blot clot in your lung, that does really sound like not much of an issue... I took one of those longevity tests (how long will you live) long before I was DX'd with BC and my life expectancy dropped a wad because I drive a sportscar. I didn't give up the sportscar.
Overall, I'd say you really gotta get the rest of the stats when you start digesting all the percentages, and its a big big learning curve full of terror (fun fun fun!!!). Here's a great place to start, The Breast Cancer Prevention Trial,
this is the reason why we're all on Tamoxifen... because they did this big big study with 13,000 women, half taking Tamoxifen and half on placebo, and they had to call off the study because the women on Tamoxifen were doing SO MUCH BETTER than the women who were not that it wasnot fair to the women on the placebo. Another unplanned benefit was a comparison of the side effects, because yes, the women on Tamoxifen had all kinds of side effects but the big surprise there was SO DID THE WOMEN WHO WERE NOT TAKING TAMOXIFEN. Except for the hot flashes and vaginal discharge. (fun fun fun!!!!) And the silver lining there is that if you do get the hot flashes then your recurrence rate goes down even more than usual.
It's still all terrifying, but I have been reading all these women's experiences on Tamoxifen for almost a year and everyone seems to be AOK, its sort of the Winston Churchill thing, only thing to fear is fear itself. I am waiting for the weather to cool down (with my ONC's permission) because heat exacerbates hot flashes. Being in Montreal, you have an advantage there with the cold weather!!!
Laurie- YEAH BABY!!! ROCK THOSE GOOD REPORTS!!! Best news of all! YAAAAYYYY!!!
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LeggyJ: Sorry to hear you'r ehaving SE's but I guess everything is worth it if it keeps you from having mets. When you put in in that perspective, I guess I know what I have to do. Good luck to you and stay healthy!
Rachel_BC: The TailorX Study is basically a study which uses the Oncotype Test to determine whether or not I would benefit from chemo. Low score gets just Tamox, mid-range scores would get either just Tamox OR Tamox/chemo (coin toss) and high score of course would definitely get Tamox AND chemo. The 1 -2% is for people taking Tamox - supposedly it's one of the SE's. A minor one, but nonetheless he thought he had to inform me about it. I don't have any related health issues so I think he was just telling me to be straight-up with me. I seem to be fretting about everything these days so bear with me
. I hear ya on the fearing fear itself ...........
Guess I should give it a try - it's the least I can do and try to keep an open mind about things - maybe I'll be one of the lucky ones that doesn't get bad SE's !Terri
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LeggyJ: Sorry to hear you're having SE's but I guess everything is worth it if it keeps you from having mets. When you put in that perspective, I guess I know what I have to do. Good luck to you and stay healthy!
Rachel_BC: The TailorX Study is basically a study which uses the Oncotype Test to determine whether or not I would benefit from chemo. Low score gets just Tamox, mid-range scores would get either just Tamox OR Tamox/chemo (coin toss) and high score of course would definitely get Tamox AND chemo. The 1 -2% is for people taking Tamox - supposedly it's one of the SE's. A minor one, but nonetheless he thought he had to inform me about it. I don't have any related health issues so I think he was just telling me to be straight-up with me. I seem to be fretting about everything these days so bear with me
. I hear ya on the fearing fear itself ...........
Guess I should give it a try - it's the least I can do and try to keep an open mind about things - maybe I'll be one of the lucky ones that doesn't get bad SE's !Terri
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LEEEGGGGGGYYYYYYYY
No reason, just like doing that So you're a gardener eh? I love gardening. Yeah, everything hurts anyway! 
Terri- oh THAT'S the TailorX Study. Yeah one ONC I saw was pushing me to do that as I am Oncotype 17, right next to the border (hum, makes me think of "South of the Border" and Mexican food) OK anyway, I would have been one of the coin-toss people and couldn't leave it up to chance if I was going to do chemo with an 11 month old baby. Please don't feel bad or even unusual for fretting about this stuff, that's what we're all doing. I totally do not mean to dismiss or minimize your concerns, I mean to validate them and address them. We all pretty much came to the same conclusion as you. Hang in there and feel free to fret and bitch. Hoping for the best for you.
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Oh and Terri is your name from your car? Mercedes?
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Rachel_BC: Here's a link to the TailorX Study:
http://www.oncotypedx.com/HealthcareProfessional/OngoingResearch.aspx?Sid=18But you already seem to know what it's all about. I would have done the same in your position and not left it to chance. Not with an 11 month old.
I guess on the days where I'm more tired, I tend to fret more. Guess I need to get more rest and maybe this all won't seem so impossible to overcome. And yes, the name comes from my car...she's a grand old lady!
Maybe I'll be looking forward to winter for a change if I have hot flashes...lol I would imagine that your weather and ours are almost the same except that maybe we have harsher winters than certain parts on NY State??
Terri
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Terri- I am a car girl... my first was a 72 350SL... so you totally get my analogy with the sports car... and one more nice thing... when this BC stuff starts to get on your nerves, get in the car and take a drive
Step on it. On second thought, my Dad had a 560SL and that car was a rocket ship. Maybe don't step on it... but aint it nice to know that BC doesn't stop you from enjoying the car?
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::giggle:::
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Terri, it will be all ok! I have been on tamox since March and I am doing good.
Nice Picture Rachel!
I have had a few hotflashes, maybe it was the fact that there was no ac at work and we finally have summer humid weather. Lastnight I woke up with a hotflas and nightsweats. I turned the Ac on full blast and fell right back to sleep, only to wak up an hour later freezing.
Now I have noticed another se, saying the wrong word. I refered to one of our students yesterday as Peanut Butter and at the end of the school referred to another student a Jewish( not a slur, just combined the names of two students). I will also forget waht I started to say or have a complete "Brain Fart"
Well ladies have a nice night. Good Morning Helena.
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Cool Picture again. Esmarelda is right up front!!!
My dream car is a 1964 1/2 Ford Mustang!!!!!!
My dad had one, but one he had a wife and 2 kids he got a Cutlas which was wrecked when we where hit from behind, Then he got a Vista Cruiser, just like in That 70's Show. It was cool to go to the drive in. Open up the back and all the kids would lay down and watch the movie.
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Dee1961 - try the tamox, I have not found it bad at all (mood swings, but not any major other SEs). It does make a measurable impact on recurrance and survival rates, much more so than most chemo treatments. Hugs.
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Rachel, I love it when YYYOOOOOUUUU do that! Yep, I have a BS degree in Ornamental Horticulture, and more people have seen my backside than my face. We gardener's are bent over, a lot...I've been wanting to tell you something, but I keep forgetting (chemo.brain), the hot flashes have let up during the day, when I'm working in the heat, and only start up in the evening, after I take my TX. Or perhaps, I've been so busy, I don't notice them in the heat, but I really think you can do anything you put your mind to, if I can do it you can. COME ON GIRL!
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Good Morning Ladies 4 days down and 183 to go!!!!!!
I got up early, packed lunches DH and DS(who started peK), unstacked diswasher,now I have a little me time, then I have to go get ready for the day. Hopefully I will be able to keep up this pace during the school year.
Have a great day ladies
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OK, I purchased my Tamoxifen! Am staring at the "box" and although I know it's what just might save me, I'm having a hard time taking that first pill...
Is it better to take it at night or in the morning...will it make a difference? How long before the SE's start????
BTW, can't figure out how to load a photo into the text box...am I missing something??
Rachel: Nice car(s) ! I've been a car fan since I was a young girl - have toned it down in my middle age! Started out at 21 with a 1980 Trans AM (it's an italian thing...lol), then I had a 1989 Daytona Shelby, 1990 Chrysler Laser, 1995 Camry XLE, 1998 Camry XLE, 1990 560SEL, 2001 Miata, 2008 Lexus 350. We still have the last 3 cars... and like you, we're part of a car club! Actually, I'm webmaster for our club website www.ottawamiata.net
I'm hanging in there - my ride's about to begin! WHOOOOWHOOOO!!
Terri
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Patti, good luck with the man, and thanks to everyone else for listening to my stories. I sometimes feel like it's TMI, but where else could I talk about all this? Certainly not to my coworkers. My kids (all girls, 21, 20, and 13) don't want to hear about anything BC related, and if I discuss it with friends or family, I feel like I am looking for sympathy. Husband is clueless about all this medical stuff and I think it just makes him more anxious to hear about it all. The MOJO coming back has made him happy though. I just pray that it stays, I keep thinking it's too good to be true!
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Hi all - Terri - so many times I have said that the first pill really is the hardest one to swallow - we are here for support, we are all on the train. Do it!
Downer alert!!!!!! Went out and met up with friends at the local country Pub and had two small glasses of wine (over 3 hours) because I was driving and had my DDs but came over all anxious and came home feeling crappy. Nothing happened to make me feel that way, everyone was lovely but I just felt so removed from everything. And I would only tell you guys how I feel but I feel I just want to scrap all my friends who I LOVED pre-bc and start again. What the hell is that!!! Give me the hot flashes over this SF anxiety any day. I know this too will pass but aaarrrgghhh.
I know I will want to delete this post after I submit it but I guess it is important for me to be genuine and real here as I am always posting about no side fx from tamoxifen. I so want to be little miss sunshine and have you all think I am strong and bullet proof
Terri - don't you even dare not take your pill because of this !!!!!!!!!!!!!!!!!!!!!!!!!!!
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Mary - I have noticed that several years ago before bc I would confuse words usually the word is the same number of syllables and begins with the right letter, but somehow my mouth says this different word in the sentence. This would happen occassionally. Now, PFC, it definitely happens more often and I do stop mid sentence and go totally blank. It is referred to as chemofog. So, I am definitely using the chemo as my excuse for my brain functioning differently.
Terri - the 1st pill is the hardest to swallow. For me, so far so good, just hot flashes and sleeplessness. I take my pill in the evening.
Rachel - my sleeplessness is in the form of waking about every 1hour20minutes, give or take, all night long. Talk to NP about it, she upped the mg's on my Ambien precription. Once DD is back at college (1 week), I will know if the sleeplessness is totally BC related or DD related.
Have a great weekend all!
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PattiB, I have the same chemofog stuff with my words....my nurse said 'you've been out of chemo since Jan, you can't use the chemobrain excuse any longer' and laughed. Great, I'm just an idiot then! LOL! shoot, not saying we're idiots...just saying I swear chemo jacked us up!!!
I also have the sleeplessness, just can't stay asleep! SFBC!!!!!!!!!!
Helena, you sweetie...we understand and am glad you can be real here. So important to get all this crap off our minds, part of the healing. Last night after work I was talking to my DH and he teared up, he said he still gets teary eyed when he thinks about the past year dealing with this SFBC!! The same thing happened to me yesterday. I was in the ladies room and looked in the mirror before exiting and froze and started crying. I got scared! Then I pulled myself together and walked out. What the heck was that about???!!! Hugs
Mary, hope you can keep up the pace, you sure have your hands full.
Rachel, love the pics!
Terry, take the pill! I was so scared to take the first one as I had heard horror stories from 2 ladies, before I had any dealings with BC...they both stopped taking it early after 3 yrs. So far I'm dealing with the se's...I wasn't even sure if the se's I was dealing with was from the Tamox until I started putting 2 and 2 together and realized the aches started when I started Tamox (although I started Tamox and Rads at the same time).
Make it a great night!
Lisa, can't wait for the dish on the guy! Thinking of you! Hugs
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Mary..you can do it!! I have tried 2 different AI's...and was on tamox for 1 year...tamox is much, much easier. It has it's s/e's...but they are definately tolerable!
Helena..none of us are bullet proof. I think your feelings are very "normal" for us survivors. It will change, I think I went through allot of what I thought were "strange" feelings the first year.
Ok...finishing up here at work...then hopefully going out on my date!! wooohoo!!
xoxo
Lisa
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Meg, HelenaJ, Patti, Kari and Lisa! - OK, OK, I'm going to take the pill tonight before bed. I pray I don't drop dead in my sleep from some strange side effect that would only happen to me!..just kidding. As far as b%&@$#ness goes, I don't know how I could be any worse than I am already some days. My husband took one look at me this afternoon and took a deep breath. He said I guess I'm going to have to learn to just suck it up from now on right? I just smiled. Poor guy, he's such a dear man - I hope I don't get too bad!
Kari: My SIL had BC last summer and she was on Tamox for about 3 months and swore she would never take it again. She's told me all of the horror stories and that's partly why I'm scared to death. Gotta keep a positive attitude, gotta keep a positive attitude .................................
Lisa: Have a great evening and good luck with your new guy
! Terri
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Terri- we have a LOT in common. And we have a LOT of Miata owners in our Z3 group. Here I organized a ride with a Miata group:
I showed em some of my best roads... 
Here's me in the background... and I don't know how that Boxster snuck in to our group... 
One nice thing, Miata tanks are on the left side and Z3's on the right side so it made it easy to gas up side by side ...
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I too am in the TailorX trial, my Onco score was 21 and was chosen for the rads and tamox arm, almost done with rads, 3 more to go and weepy, peeling and down right sore. Tamox SE's are few had night sweats and HF before, seem to sweat more and easier which is complicating the peeling boob, but sit with the fan on and my shirt up or off a lot lately, probably not a turn on for hubby but oh well. I feel the Tamox is worth the "possible" side effects. By the way here it comes CANCER SUCKS
Love gardening too, trimmed roses, pulled weeds, picked apricots, racked apricot wine today. Hubby went to the woods and picked some yummy wild blackberries.All have a great weekend.
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Mary, great taste. 1964 Mustang mmmmmmm Of course I am up front, I lead the drives!
Terri, the pictures have to be posted somewhere online, like on your web site. Then you use the little "tree" picture icon above the posting box- where the fonts are and the link thing is- and put the web address of the picture is...
Helena my Queen, I wish you would stop apologizing!!!! Let it all hang out baby
PattiB and the non-sleepers, man that scares me. Just waking up for no reason every hour and a half? Is it easy to go back to sleep?
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Rachel: Great photos - touring's so much fun!!! Oh, if only I could figure out how to post a few pics of my own on here! We have alot more in common - we also have a black Boxster that snuck in on a few of our runs!
Carollyn: Getting a visual on you and the fan...poor you! I'm SURE the Tamox is worth the SE's - hang in there. BOY, look at me giving out advice on Tamox and I haven't even taken my first pill yet...lol
Terri
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Rachel: Great photos - touring's so much fun!!! Oh, if only I could figure out how to post a few pics of my own on here! We have alot more in common - we also have a black Boxster that snuck in on a few of our runs!
Carollyn: Getting a visual on you and the fan...poor you! I'm SURE the Tamox is worth the SE's - hang in there. BOY, look at me giving out advice on Tamox and I haven't even taken my first pill yet...lol
Terri
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Rachel: Great photos - touring's so much fun!!! Oh, if only I could figure out how to post a few pics of my own on here! We have alot more in common - we also have a black Boxster that snuck in on a few of our runs!
Carollyn: Getting a visual on you and the fan...poor you! I'm SURE the Tamox is worth the SE's - hang in there. BOY, look at me giving out advice on Tamox and I haven't even taken my first pill yet...lol
Terri
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Kari I am going to punch that ignorant nurse right in the mouth. What an incredibly stupid and completely incorrect thing for her to say.
Terri- on your SIL's horror stories, well I don't know her experience but its safe to say that problems aside from hot flashes and vaginal discharge are not the norm. Maybe she had some other issues, that can make a big difference. And maybe for some reason she didn't try Effexor. And EVERYONE here on BC org that had big time problems tried a Tamoxibreak- 2-5 weeks (or Rose who went 6 weeks) got major relief from their biggest issues. I read also ALL the posts of the September 2008 RADS group, who stuck together for their hormone treatments. The thread hasn't even had a post in the last couple months, everyone has sorted it out and moved on.
Trying to think of a proper car analogy... like you know how one person joins the group and they seem to have a car that has all sorts of problems that no one else has... and the group offers solutions... I forget but there was some Miata issue in the beginning of Miatadom that was later sorted out. But for Z3s we have the "dancing gas gauge". It pops up when it should be empty, looks empty when it should be full, not a nice at all... like SURPRISE you are out of gas. My car has it. Someone figured out that if you don't top off your tank it doesn't happen. Later techs said it could be solved with a gas additive. Whatever, I just don't top off my tank and I always reset the trip odometer. I ain't giving up the car and I ain't bitchin about it. So that's my Tamoxifen analogy
Oh and one more thing... if you were going to be the ONLY person with some RARE deadly unknown Tamoxiproblem, that would be like as possible as being the ONLY person with some rare deadly unknown Miata problem.Carollyn, I got my Carols from BC org mixed up on FB, I don't know if that's you there or here...!!! Yeah I was worried about HF +RADS. End of RADS is often bittersweet, because you stop getting radiated but the effects continue. Hang in babe!
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Terri- ya think it's the same black boxster?
I had a LOT of fun with the Boxsters in Malibu... and one here :::sigh::: big crush....But that's enough pics from me today...
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