Bottle o Tamoxifen
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Thanks good to know I am not the only one thats feezes and sweats all in the same hour lol
On the pink things... I actually love getting the "pink stuff" For me it reminds me I am a survivor and that is hard work as you all know, so I am proud to be a survivor " thats just me though....
It is sleeting like crazy here... kids hoping for a snow day lol... me not so much
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I don't mind the pink things either. I have always loved pink anyway....and have alot of pink things, scarves, sweaters, etc....and even pink ugg boots. (I know hahah but they're cute and I got them out of frozen toe desperation while in NYC for my daughter's 16th bday (December! COLD) a couple years ago....pink was on sale....so I got pink! LOL Now I love them and wear them all the time. Even though I love pink I would have never picked them out under normal circumstances, go figure!
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Love the pink Uggs!!!
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I don't think about what could have caused my BC, either. There are just too many theories, and I am not going to blame myself. And I'm not going to drive myself crazy trying to eat "perfect" foods, either. But I agree we can all make little changes in our lives that don't drive us crazy, and for all we know they just might be what makes the difference down the road. So far the main change I have made is to have spring water delivered to my house, rather than drinking home-filtered water. The home stuff still has flouride in it and since we consume more water than anything I decided that would be the first change I would make.
Pennythoughts - I was having severe ovary pain, too. It started about 2 weeks into tamoxifen and lasted about 4-5 days but it has already stopped.
tinkertude - I seem to be freezing a LOT, but I think it's the weather! It's just been too cold here lately, and lasting longer than usual. Can't believe I'm saying it, but I can't wait til summer!
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valgal---I had ruptured ovarian cysts after a year and a half on tamoxifen (but gyn said it wasn't related)--ended up with a TAH/BSO; but my mom took tamox for 5 years and never had any gyn issues at all. It is a good idea to have a yearly transvaginal US to monitorboth the uterine lining and the ovaries.
Anne
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surfette, I understand about the pink. It's never been a favorite color of mine--I was never the "girlie" type--so I hope I don't get too much of that.
I talked to a woman at church who said she has been on Tamoxifen for 15 years with no side effects. I know 5 years is the usual length, but she said her doctor believed longer would be better (and told her about a recent study that seemed to confirm it). So I hope I will take after her and have few or no problems. I plan to start next Saturday.
My only risk factors for BC were having kids fairly late (30's) and having late menopause (57-58). And I couldn't do much about those--especially the menopause!-so I guess it's just one of those things.
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Re the pink issue: it's not the color that bothers me, I actually liked pink, until now. But when people give me pink items it seems like they are defining me by my cancer and that is what I object to. They way I see it, I had it cut out of me, then I went through radiation to remove any traces, and now I am taking a pill to prevent it from coming back. It is OVER. I don't want to go around wearing my cancer like a badge of honor. One girl gave me earrings in the shape of the breast cancer ribbons. Is it selfish of me not to want to jump on the advocacy bandwagon? I'm still paying astronomical medical bills; so no I will not be giving money to the Komen walk this year, I can barely pay my own expenses. Sorry, just venting again...
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I know surf! I completely understand. It's just that it DOES take so much money, to put on this huge walk, that spending this money on treatment, & new ideas would be a lot more useful, to us....I know so many women are just happy they survived, but to see so many people celebrating what we have gone through, just seemed back-wards to me. Maybe it's just because it was too soon for me to "go back" to all those feelings.
So I went to Super Walmart...and yes, I DID it....I just had to pick up a couple pink grape-fruit. I have also read the articles about it inter-acting with Tamoxifen, and I know you should NOT do a lot of things, but I did it. I will only eat 1/2 for the next 4 days....So that shouldn't throw me out of whack. I asked my Oncologist about grapefruit a long time ago, and she didn't know anything about the controversy...She MUST have been born under a rock...Therefore, I'm rebelling, & going to commence & eat that grapefruit... because I can.
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NO Surfette, that does make sense. I never looked at it that way,, but I understand what you are saying! It is not selfish, there is so much we have to deal with that comes after the diagnosis. It is a time in our lives I feel anyway where we HAVE to be a little selfish anyway. You vent anytime... thats why we are here
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I don't like the pink stuff either. I read a recent study that indicated the pupose of raising the issue isn't working. 50% of women who have insurance are not getting mamograms like they should, just think what the stats are for the under or uninsured! So raising awareness related for the need of yearly mamograms insn't working! If the money raised is going toward true research and support efforts for women then at least that is postive but I hate Oct with the pink blitz on everything. I think it is more profit making for the companies. Just my own opinion though
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OK, well the hot flash came in handy this morning. Had to take my husband to the airport very early and was debating about stopping to gas up on the way home, when HEAT happened. So, I stood out in the cold and gassed up and cooled off - a 2-fer. haha
I don't think anybody understands what a cancer diagnosis does to a person until they get one. I have several friends who've had it over the years and I never understood what they went through, really, until now. One of them I even took her to the hospital for her surgery, she's a widow, and took her to many rad appts, grocery shopped for her, etc. but I never understood what she went through until now. I can't fault anybody for showing their support in whatever way they do. If Pink Ribbons = more $ for research and care, paint me pink and I'll run around nekkid.
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"I don't think anybody understands what a cancer diagnosis does to a person until they get one."
That is the truth. I didn't get it before either. So I don't fault anyone but yes it is true. I had my vaginal ultrasound yesterday (to check before starting the T) and I had something on my ovaries that looks like blah blah, normal, follicle, blah blah, and she wouldn't even think twice about it because she's pretty sure it's this other thing, BUT because of my cancer diagnosis she needs to be over precautious and took many pictures of it and is having my dr look at it. She said I will most likely have to do another US in about a month to make sure it has gone away. Nice.
I had a flashback laying there, as soon as she mentioned it, heart started racing, PTSD, I swear, of the day I went in for my mammo/US thinking, oh, all is fine....and it wasn't. No, no one has a clue what kind of ongoing things we go through. And what it does to us each and every time. I was going to start my mini starting dose of T today (2.5mg to start) but chickened out.
Maybe tomorrow...... 0 -
TInkertudeHappy birthday to your son....18, how wonderful and you are so young as well.....I too suffer from extremely bone cold and I have only had 1 hot flash and I am 9 months into Tamox.....My husband laughs at me all the time when I wear my robe to bed and mummify myself with all the covers so not even a small draft can get me.....lol 4 years and 3 months left and maybe I will find some warmth when the little white pill is all done......0
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phxsunshineI have to say I agree with you.....no-one really knows unless they have experienced it themselves. I remember my best friend having children many many years before me and when I finally had my own I paid her a phone call and apologized for not being the most wonderful friend as I really never understood what it took to be a Mom and how much your life changes and how crazy busy you get and yet it is all for the good......I know there are so many people in my life who think I AM ALL DONE when in fact this is just the beginning.......0
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Can't remember if this is the thread but......... we've been talking about avoiding parabens which is in makeup. Aveda since 2010 made the decision that they will not put any of them in any of their products!!!!! Yeah I am going to get Aveda this week so I don't worry.
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Thank you June!!! cant believe he is 18! Yes I go to bed with layers on at times and my robe and peel them off as the night goes on and then out them back on as the night goes on lol...
You said it very well, so many people think I am done but I absolutley agree it truley has just begun, in so many different ways, gone are the days of a headache is just a headache a cough a cough etc....
I guess this is what they call our "new normal"
Eastcoast Girl Hope all goes with with your next ultrasound !!!
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Hi Everyone!
I am going to join the club now. I have been reading this thread for a couple of weeks, to see what I am in for, but this is my first post. I finished chemo in October and radiation right before Christmas. Met with my oncologist today and just dropped off the prescription for Tamoxifen at the pharmacy. Going back to pick it up in a little while. I guess I will take my first one tomo morning. Any advice?
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SPTMM62... welcome aboard!!!...
The best thing I could say was splitting the dose really helped me alot. I started really slow 5mg a week 10mg 2nd week etc.... when I got to 20 my onc gave me a prescription for the 10mg so I could do one in the am and one in the pm......Good luck!
We are here for you!
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Ok, Effexor ladies. I received by rx today, think I will start it this weekend. Did have Pristiq but tried it two different times and was extremely nausea that nite and all the next day which is why they switched.
Of course the Effexor says nausea as well....Anyone have severe nausea with this medication? Also, side effects say brief feelings similiar to electric shock.....what the heck is this about? Makes me nervous to take it now.
Anyone have mood swings before taking tamoxifen which are now MUCH worse? Mine have been awful for the last couple of weeks. Like I thought I had bad mood swings before but nothing compared to now....my poor husband...LOL
By the way, this is my second time around with breast cancer....so wonder I need some type of mood/hot flash drug....gotta keep the humor going around!
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Sptmm62I started my pill on the last day of Radiation and believe me you I was scared out of mind thinking the absolute worst. The only thing in the very beginning months that bothered me was constipation and besides that I feel like I am very lucky as NO side effects YET.....well I feel more stupid and forgetful but I would think that being on this little white pill for 9 months there would have been more......I am basically allergic to everything and have reactions to all meds and to be able to take this and nothing major, I feel so blessed that something in my life will work out for me....YAY!!!
Try not to think about it....easier said than done, I know!!! Good luck and keep posting! June
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Chevyboy you took the words right out of my mouth!
Welcome Sptmm33 I was worried and as it turns out all for nothing. I feel for those who are having se's but so far I've done pretty good. One thing to keep in mind is that if you do have any se's definitely keep your onc posted you don't have to suffer through there maybe something to help you tolerate them and my onc said most se's go away in 6-8 months.
Good luck!!
Diane
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ok, been reading for a few weeks. I've been on Tamoxifen for 6 mos. 1 month ago I woke up with a bright red rash all over my chest. Took Benadryl - didn't know it interfered with Tamox. The rash got a bit better then a week after the 1st rash it came back under my breasts and moved down my torso. Then yesterday I woke up and had the bright red rash on my forearms. Drs look and aren't sure what it is. I see my onc next week. Afraid he's going to take me of Tamox and put me on something else. I've had no SE's with it and am afraid I'll have issues with something else. Seems strange to have allergic reaction 5 mos after being on it. Anyone else have this?
I had hysterectomy/1ooph removed 6 weeks ago.Drs. wante dme to keep 1 ovary. Feel tons better after that - except for rash.
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sptmm33 - Welcome to the group - good place to hang out. But at the same time, sorry you have to be with us. I am been on Tamox 2 weeks now and the only SE is joint pain in the toes - not too bad but there. I was worried my hot flashes would get worse when in fact they are almost gone. When I got my script for Tamox, I also got a script for Effexor to combat the hot flashes but have not had to take any yet. Seems to be working good for me. I had tried Arimidex and Femara - both had severe nausea.
I do the split dose and it seems to be working for me. My onc had me take 10mg the first week then the full dose.
Just decide how you are going to take it - full or split dose - sit back and relax. It will be okay.
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sptmm62 - I started off the tmox slowly with increasing partial doses over 3 weeks. I figured it was going to be a jolt to my system and wanted to ease into it. Don't have any scientific evidence to back this up, but I had my Onc's approval to do so. The day after I took the first dose and any increased dose, I could have ripped somebody's head off for looking at me wrong, but it only lasted one day. I have a friend who is a pre-school teacher and she could never take more than 10 mgs a day for the entire 5 years because then she wanted to kill the kids - and that would not be good. I'm thankful the tmox isn't bothering me more than I can stand. Very minor SEs to this point. Good luck to you.
sabregirl10 - sorry to hear about the rash and wish I had something constructive to tell you, but I don't so I'll just keep you in my prayers for some resolution and relief.
Eastcoast Girl - good luck to you and Determined - thanks for sharing the Aveda news.
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(((East Coast)))) The fear really is the hardest part.
No new SEs to report - every now & then my thumb gets really sore, but I've been double-jointed there all my life. My mother used to fuss at me and tell me it would get stuck if I kept moving it
:) I still get one big hot flash at 4am every morning - but that happened before Tamox too. The only difference is now it starts on my face instead of torso. I'm drinking enough water to displace a battleship because I read the excess is eliminated through urine - I want only the minimum required amount in me as possible! 0 -
sptmm62- Hi!! I started tamoxifen in November two days after I started radiation...didn't want to start something new. I did have hot flashes for the first month and then, on this dialogue, I read about and tried splitting my dose. it has been working beautifully. 1/2 in am with breakfast and plenty of water and half at dinner time with more water. I accidentally forgot to take it Sunday am and took the whole thing Sunday pm and had a super hotflash Monday night so...I am sticking to my theory.
pink discussion: I am not a light pink person...never have been...(although I do have hot pink plastic flowers from the antenna of my car soIi can find it in parking lots!) . I was not enoyjing the whole pink ribbon event..was given a pink ribbon pin from a workpal and appreciated her sentiment but not the pink ribbon....then started to think about what it means and i began to notice how many people have pink ribbon magnets on the back of their cars here in Nova Scotia. Started running into women who are joining the Bust a Move breast cancer fundraiser in March and decided to join a team.
I too am confused about my feelings about it ...I have gone from ; I am no twearing pink!" o " Where am I going to put my ribbon tatoo> A discreet place for me to mark another milestone in my life...)...weird transition. As with all transitinos though, I plan on waiting abit for the tattoo as ift could simply be a reaction....I believe (untold otherwise) that I no longer have cancer..that the free floaters, if there were any, have been radiated and zapped to hell where they came from and that tamoxifen is keeping the little cancer warriors at bay or eliminate them forever...forever is a long time when you are only 48
So to pink tattoo or not to pink tattoo? Might use my body as a canvas or opportunity for others to question it and to encourage them to get mammograms!
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love it!!!! goodnight!
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Just back from Vegas.
The trip was a hoot, however, the hot flashes were a pain. I carried a fan around with me everywhere. Waited in the security line for an hour. Honestly thought they would have pulled me aside and given me a full search I was sweating so much.
One lady in line kept looking at my arm/hand sleeve and asked if I had been in a fire. When I told her I had bc and it was a sleeve for lymphadema prevention she looked totally embarrassed and looked away. Well that's what ya get for asking. She was even more embarrassed when we sat next to each other on the flight. Small world.
Meeting with P/T tomorrow to talk about my sleeve. It was excruiating to wear on the plane and my fingers were going numb. Can't imagine what a 10 hour flight will be like.
As for Tamox, I hate it. This is going to be a very long 5 years. Sigh!!!
Jules
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