Bottle o Tamoxifen
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Beautifully said Rachel - and another beautiful photo!!! Ps. Perhaps I should change my member name!!!!?
YOTH - there is just no understanding of what we are going through, unless you are going through it as well - I had a laugh with a friend who I met at my breast cancer support group who is a triple neg girl and she was told the other day from a well meaning person that she should try and stay positive - her response was "No I really want to give this negative thing a go for a while" - well she didn't actually say it to the person but DOH!!! You tell someone you're having a bad day and that is what you get. I have opened all the windows down here for you.
Here you tell someone and you get understanding, empathy, cyber hugs and just a great big warm fuzzy feeling, not to mention some damn good advice. Hope the hot flashes calm down but they are to be welcomed - in moderation that is - the stuff is working!!
Hi Florbo - no lupron shots for me but welcome aboard, hope the trip is smooth.
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Catherine- Well, some days it seems like we get to the station to board the train to Hogwarts, and run smack into the wall...
I am sorry if I didn't make it clear that I appreciated you referencing the source with my smartass remarks. And it does pique my interest that they would even mention that. I mean... that is the ONLY reference I have ever found to any official medical type source giving a rat's nanny about what part of the cycle the Tamoxifen begins... and i have been really looking. I was thinking.... where did they get that? But they don't tell ya. Just the cryptic "may".
But yes, I think Helena really nailed the whole scenario.
Meanwhile, I'd also like to see the stats on what qualities a woman has who loses weight on Tamox vs gaining (even though those studies showed no difference in the weight gain between placebo and Tamox). Like, do fat women (like me) more often lose or gain? Or does it make any statistical difference if we are pre, peri or post menopausal, or is it body shape, or is it... but... no such studies and I think no one here has the time or patience to collect the data.
I went to my high school reunion and was totally freakin anxious- but my old dress fit me and i felt really "pretty" and I gotta tell ya it has lifted my spirits like nothing else. I admit- it's vanity. But i get it now what they mean by "Look Good Feel Better". They aint kiddin. That's my current picture- from the reunion. Never mind that my radiation rash and blisters came back, and you can kinda see I had some cotton cloth shoved under my bra in the pic- I felt that I LOOKED good. (today I saw a complete idiot dermatologist abotu the rash, oy). That's the flip side of how I would feel if I gained weight on Tamoxifen and got stuck with it for 5 years. So that and the mood swings are my greatest fear on Tamoxifen. I am trying hard to lose some weight now over the summer before I start in september, and i am sucking at this royally. Trying not to take the pressure to heart, just keeping on as best I can.
Again, wishing you a full pullman sleeper car with all the comforts of home on your ride...
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Rachel, you know I have thought long and hard about this weight gain thing. I am a runner and fairly slim and absolutely dreaded and I really mean was totally nuts about putting on weight through Tamoxifen. I am convinced now that by the time you get to take Tamoxifen you have been through so much and are pretty much coming out the other end (with a bit of luck anyway). Along the way you are struggling just to get through treatments, surgeries, staying positive, working, looking after the family etc. it just makes sense that you are generally more fatigued and have less energy. I know I have. I also tend to eat differently. I no longer say no to a piece of cake when I'm having a tea (no more coffee for me) with friends. I eat chips with my wine on a Friday nite - god damn it I deserve it. I still eat healthily but "treat" myself more.
I don't think it is the tamoxifen I think it is the timing - we're all pooped.
I only work Thursdays and Fridays and get dressed up on those days, and I have to say it is a tonic to put on some lippy and nice clothes. You look gorgeous in your dress, you must have wowed them all.
Going to get the girls off the school bus - I'm hopping off at the next station.
see ya
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Rachel--LOL at the Hogarts wall reference. Girl, you know there are no walls for you to hit as far as I'm concerned. I already told the conductor that I wanted the best accomodations and that they would probably be near the ones you've reserved.
The weight issue...ugh... I lost weight after chemo, but it was not a pleasant experience, so I made a concerted effort to make sure I ate enough during rads. The month between finishing rads and starting tamox, it was on my mind that I should try to not gain weight...but I couldn't help it. As my energy levels increased, so did my appetite. I continued to make sure my diet stayed as organic as it was before, but I did allow myself things like cupcakes or potato chips...okay, and pudding. So, now that I've officially started tamox, I'm about 5 lbs more than I would have wanted...but so what? That's how I'm handling that issue!
And I think you look adorable in your dress, Rachel. I'm especially glad you could wear it knowing how much crap your skin went through with rads.
Catherine
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Rachel, that's me, don't know because even though my Onc still thinks Im cycling, I'm not having periods, no help to you guys wondering about when to start
Year of the hat: I need a lot more sleep then I used to and I'm not getting it except on the weekend, it is a struggle. Kudos to you for not stangling that lay
Catherine: would it help to take two pills once a day?
Rachel, I didn't gain on chemo, but ho boy, weight has shot up like a rocket on the Tamox. No mood swings. I agree with the others, you look gorgeous
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Well i have lost 10lbs since starting tamox. Also in the very beginning I did have mood swing and irritability(not sure if tamox or haiving IUD removed or just BC depression) However Effexor XR 75 mg has helped tremendously. Best of luck to all of you just starting. I will be startin on my 4th month on July 12. I have had very few hotflashes and very few night sweats.
Rachel you are too funny, I really enjoy your posts and your no nonsense attitude, say it like it is and who gives a flying f*ck what others think!!!! LOL
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Catherine ~ Oh heck yes, this train should go to Hogwarts. I'm not an HP fan per se, but I do have a big crush on Severus Snape. (Well, the crush is more on Alan Rickman than Book!Snape.)
RachelIBC ~ I'm overweight and am losing on Tamox; I ain't complaining! I'm premenopausal. No hot flashes yet, but my word the vaginal discharge!!! I've been on it for two weeks now.
HelenaJ ~ that is funny about your friend. I think I'll try that line next time someone gives me the "stay positive" speech. "Nah, I'm just gonna stay negative."
Hugs to all,
Artemis0 -
Artemis--Just have to say that I LOVE Alan Rickman. His one line in Galaxy Quest ("By Grabthar's hammer...what a savings...") never fails to crack me up. But then you look at all of his other roles and how varied and excellent he is in all of them...
Totally OT, I know...but yeah, I'm a huge fan.
Kmmd--I suppose I could take the two pills at the same time, but since I take calcium citrate in the morning and benicar for blood pressure at night, for now it's not such an isssue. But I am working on getting off of the benicar, so it would have been nice to just be on the tamox. Also, I got a bit of heartburn from the first tamox last night. This morning...no problems (jeez...why would there be at this stage?)
Catherine
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Hi Fellow Tamox Queens -
I board the Tamox Train tomorrow - and here's a question:
Can one drink while taking Tamox? Like a glass of two of wine with dinner once in a while, say several times per week?
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Britt, so made me smile, once in a while--several times a week. I've never heard anything about not drinking on Tamox. Drinking and breast cancer its own story, but shouldn't be any interaction with tamox that I've ever read about. Maybe someone else has seen something different and will chime in.
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Just finished first 2 weeks and all is still GR8!!! Btw..I love wine and no prob's so far!! I feel wonderful...thanks to all the positive support here and at home...love ya Ladies...jules
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Hello Everyone-
I'm also joining you on the Tamox train - took my first one last night and waiting for those hot flashes to start up again (they went away when I was doing rads).
I also haven't heard anything about drinking and Tamox. I'd like to think I can still have a drink occasionally (or several times a week).
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Hi all -
Thanks for the feedback!
What can I say - someone's "occasionally" can mean someone else's "several times a week!"
Glad to hear that so many of the Tamox Tsarinas are doing so well! (I wanted some alliteration, hence "Tsarinas!")
Cheers!
Maria
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There aren't any contraindications for alcohol while on tamoxifen that I know of (I completed my 5 years last fall), but I generally limit myself to 2 or 3 glasses of wine a week at the most as any alcohol will increase breast cancer risk and that is what I'm trying to lower with the tamox. (now with the Evista).
Anne
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awb -
I am very much aware of the connection that many in the medical profession believe that alcohol increases one's breast cancer risk, particularly when one is ER+ - but there are some who state there is not that much of a connection. Ditto with soy. There is an ongoing debate about soy. Until that is resolved, I am avoiding soy products (used to adore them and ate a lot of it!) - but then there are studies that Japanese women, whose diets are composed predominantly of soy products, have very little occurrences of breast cancer. I truly believe it's in the environment and also in one's DNA - it is all a "crap shoot."
No one really knows. Until then, we all do the best we can, without compromising our Quality of Life, if at all possible!
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Britt, I told DH I'll exercise more learn to like brussel sprouts etc,, but I'm not giving up sex or alcohol. Now I'm not saying which of those last 2 I plan to do more frequently....
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kmmd -
I totally agree with you! I despise brussel sprouts, however, but I do like spinach and broccoli - and I am starting to get into Pilates again (even though since I ended rads a month ago I am still a little sore, but it's getting better) - but, out of the two you mentioned, one in moderation, the other more frequently!
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Good morning everyone - I asked my Onc about drinking wine - as I love a drink especially when I am feeling frisky and happy!!! He was supportive, didn't ask how much, didn't even say in moderation. He could see I was healthy, irrespective of the stupid BC. One day they may link breast cancer with alcohol but until that day I will continue to imbibe. Mostly twice a week sometimes 1 glass sometimes 3-4. I really enjoy sitting with my friends or my DH de-stressing or going out for a dance or pub raffle. Stress is more of a worry for me. My Onc also didn't mention any interaction with Tamoxifen. Would be g8 to have a glass or two with all of you
PS. unfortunately the wine bottle looks more enticing to me these days ... sorry DH.Good luck to all you ladies starting tamoxifen - take it easy.
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Hi girls - I am one year into my train ride. I started back on June 17th, 2008. The side effects for me have been hot flashes, especially the ones at night. They do stop as I get closer to my period, and then resume a week after my period.
I just read a study about alcohol and bc. I enjoy having a beer or two (and hell, even more sometimes!) on the weekends. It started me thinking that I should give up the beer. I also avoid soy if it is one of the first four ingredients listed (90% ER/PR+).
As far as weight gain while on Tamaxofin, I have put on about 5 pounds in the last year. But, I think that's from the beer - I didn't drink at all while during the treatments. I do exercise daily, walking 3 miles and lifting weights for my upper body.
So, we have two July 4th parties to attend on Saturday ... now I'm not sure if I should raise my glass to celebrate. My next med onc appt isn't until mid-July, I'm going to ask about the beer. Some of you mentioned that you drink wine, would that be better than beer???
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Catherine ~ "I used to be an actor and now look at me. Look at me!!" Haha, I love Galaxy Quest. Someone here has "Never give up, never surrender" as her sig line.
Welcome all new Tamoxi Tsarinas! (I like that name, Maria!)
Hugs to all,
Artemis0 -
I emailed my Onc. and told him how much he's ref. to bone cancer bothered me, and was making me crazier, than I already am. I also reminded him my rib and back pain, is still bothering me and if he has a concern let me hear it, I'm ready. Well, he emailed me back and said if my pain, continues, we should look into having a bone scan. Now I know, these tests can be inconclusive, and will just freak me out, so I'm back to feeling like, "No news is good news".
Still waiting on the CYP2D6 test, which will determine, if I'll still be taking Tamoxifen. I had stopped having periods a few months, prior to dx, but then had one just before surgery (fear), and none since (chemo/rads),,,so we'll see. I called my onc.'s nurse today, about the test, since it's been about 3wks. I get lost in the system, all the time. She's checking on it, and thought it was taking a long time.
About wine, I live in the Napa Valley and used to have a couple of glasses, with dinner every night. My Onc. was highly critical of that, when he asked me about my intake. Going through chemo., I couldn't eat much less drink, so I gave it up. Now, once in a while I have drink, when out with friends, s#$t you gotta live.
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I hardly ever drank...seriously maybe one mixer a year and a few beers and I still got BC. It is a crapshoot! We can't give up everything....now I think I should start drinking 0
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WOW! There are so many new faces here... I take a couple days off, and there are so many new riders on this train! Welcome to all the new Tamoxitrain riders.
I was just doing some calculations, and I have only 166 more pills to take... that is counting TONIGHT'S pill...The countdown continues...
Hugs to all,
Harley
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Hi Everyone! I hope there is room for another on the train - I'll even take the caboose! I started Tam two weeks ago today- so far, I'm just more tired than usual... I'm thinking that's my body adjusting to this stuff... could be? How long do you give it for any more side effects?
Glad to have company... sorry you have to be onboard, but thankful too.
Michele
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Helena, Catherine, Mary- ya'all make me happy and give me courage
Artemis- that's another one of those winning conundrums.... lose weight, and major vag discharge. Oooooh the fun just never stops. That would me with the "Never Give Up, Never Surrender", but I think someone else on this board somewhere had it before me. I wanted it but wasn't sure the reference would be obvious... so I saw it was!!! GO-RIG-NAK! Managed to get your shirt off again. La la la. Sad thing is, I have been to more than one ST Con, I had my own TNG uniform, my own phaser...
Britt- yeah I got all fired up about the soy thing too. Read all the research, and now they are finally doing a definitive study on whether its good or bad for us. You know the deal there, even if the study was ending tomorrow, we'd still need like 12 years to see if the results are valid. But like you, I can give up my soy toys... it's not like it's CHOCOLATE... perish the thought! And the deal with the Japanese women, and some parts of China women, it's like... sure, maybe its the soy, maybe it's that they rarely have meat, maybe it's because they breastfeed longer and maybe it's because they have large rural populations and that correlates to the fact that BC rates soar in "industrialized" countries and is rare in third world countries, now with Vitamin D3 being proven to be helpful in preventing both cancer and recurrence and someone maybe on this thread pointed out there's a latitudinal difference- is it because they all get more sun? So yeah... until they know something... all we have are statistics. And chocolate. No one is picking on chocolate. Thank G-d.
kmmd- SEX SEX SEX!!!!! Jeez girl if you got man for it please... have more sex. Why the hell not? Chocolate and Sex. Not together though, I don't care for that! I like brussel sprouts, spinach and broccoli. Its easier to list the foods I don't like than the ones I do. I don't like frog legs or jello because of t he way they move - and if it "tastes like chicken" why not eat chicken? Also, no tongue. Not liking the concept of it tasting me while I am tasting it. Same for stomach and intestines and brain. That's about it. I like everything else. Pilates... I keep thinking abotu doing it... must... put... ass... on floor. I bought a Wii Fit last week. Still in the box. Really, my problem for both the pilates and the wii is space. My apartment is super crammed. Long story I will spare you... for now.
murph- looks like you can make your beer decision based on how you feel about the 5 pounds instead of BC, and that's nice. I sure wanna see you enjoy your freakin holiday. How about you drink lite beer and/or put some (more) exercise in the day. If there are two parties, any chance they will have volleyball or some kind of sport? Does your party schedule continue throughout summer or can you have your day Saturday and then be good for the rest of the summer until like, Labor Day parties?
Leggy- as much as your ONC's bedside manner really leaves a lot to be desired (this is the European guy, right? btw my ex called me from frikin Rwanda Friday. At a restaurant with his 10 year old. wtf? He'll be in DC in 2 weeks, why call from Rwanda? So weird, I thought he was so gorgeous and now he makes me want to barf. ALL THE MEN I KNOW ARE UNF*CKABLE. This is why I am always asking people to have sex... for me. I am the Flying Dutchman of Sex.) the inconclusive part of the PET/CT scan is two things: 1) The other non- cancer stuff that shows up is usually inconclusive, misleading, false alarms etc 2) The cancer has to be at least 1 cm. But a bone scan may be different, more sensitive even than the PET/CT.
Here's some info about bone scans:
http://www.mayoclinic.com/health/bone-scan/MY00306
http://www.webmd.com/a-to-z-guides/bone-scan
I didn't see it say how big a cancer it can find, it does say that the bone scan itself can't determine if what it finds is cancer, but combined with other tests it can. And if it doesn't find anything, I guess you are in the clear! ? Remember to bring your favorite CD and/or ipod, everyone of these places that have you sitting in a machine for a long time sitting still that i have been to says you can, but they forget to tell you before you get there. I recommend Pig N Whistle Blues.
This goes under what I call the 2 things that suck about cancer - that we cant tell when we have it and we can't tell when it's gone. But you're doing as much as can be done, and that's all there is to do.
The CYP2D6 test is wrong about half the time, that's why they don't do them as part of something regular. But again, combined with other tests and observations it can be helpful.
Doctor's offices and test results... where's my frikin 2 x 4?
Hugs all
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RachelIBC ~ "Not minors...MINERS!!" I am glad you have an ST uniform. And I'm not jealous or anything. Really. I'm not. Oh, weeks ago my sister offered me her Wii Fit when I told her I needed to start some new excercise program. It's still at her house. I do, however, have chocolate and alcohol at MY house, heh...
penguin1 ~ no need to take the caboose unless you just want to. I'm sure more cars (luxury ones at that!) can be added as needed.
It's aggravating me to cut down on soy since I am not a meat eater. My onc said it'd be ok for me to have soy twice a week. I guess I'll have to eat chocolate instead.
Hugs to all,
Artemis0 -
Rachel - brussel sprouts, spinach and broccoli - with sex??!!! LOL And perhaps you should be getting it on with men you don't know.
Always been a particular fantasy of mine -- too much info!!!!!!!!!!!!!!!!!!!!!!!!Thought I'd add my 2 cents worth on the soy topic. The Japanese are brought up on soy, they don't add it to their diet when they get breast cancer - it is a wholistic approach from day one. Italian people apparently have less incident of heart attacks, the French women are all thin (yeah as if being beautiful and having that accent isn't enough) - down here in Australia we have too much sunshine that we have the worlds largest incidence of skin cancer. God give me a wine - it is too hard to figure. It's all so random.
Hi Michele, welcome aboard - grab a comfy seat and rest. SE's can kick in anytime - but they may also not kick in at all. I don't have any major ones (for now that is) and I am a Extensive metaboliser so my fingers are crossed for you.
Hi Harley - 166 - what a great number
Leggy - what to do??? I just hope the blo*#dy pain subsides for you. Enough already. The CYP2D6 is a tricky one - being pre-meno tamoxifen is the drug for me and luckily I am an extensive metaboliser (everyone sick of hearing that yet) - another damn decision to make if you are a low metaboliser .... goes on and on.
I'm back to work tomorrow after my 10 days off after my exchange surgery - I have the most beautiful new foobs, I can't stop looking at them - such a difference after my TE monsters. Will try and catch up when I can.
love you guys
Helena
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PS Jules - when are you getting that laptop fixed - we miss you!!
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Anne- thank you for posting having completed the 5 years on Tamox... I was wondering what happens next. So how was the ride?
Artemis... I HAD the shirt (red, with pips like Picard) but it was made of some weird material that didn't breathe and I looked awful in it so I got rid of it... my gal pal, seated on my right in my avatar today in the black dress, made ST uniforms for her whole family. Wine and Chocolate at your house? I'll be right over.
Hell yes Helena, I wish I could raise a glass with you.
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mmmmmmmmPicardmmmmmmm Uhm, yes I have wine, and I have Captain Morgan's Spicy Rum. Come on up to my berth!
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