Bottle o Tamoxifen
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Morning girls ... had lots and lots of postings to read.
This site was my ONLY support (other than family & freinds) while I was going thru surgery/treatment. My med onc offered to get me into a BC support group, but I didn't want it. It was very hard for me to face people after my dx and I found this site to be so supportive. Also, with a busy schedule it makes it really easy to connect with others.
I have referred others to this website as soon as they are diagnosed. And they all say the same as I .... so helpful and informative.
Did you girls hear how Nancy Brinker received the Medal of Freedom from the President? How awesome is that!! Nancy is the founder of the Susan G. Komen for the Cure.
Have a great day everyone.
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Yes this BCO is my support group. I could not go to a support group, because of the three young children, the hours my DH works and the fact that after working all day, all I want to do is put on comfy clothes and relax. Boy that is on long run on sentence, so much for grammar.
BCO has helped me thru Rads, surgery and now tamox. I can say what is on my mind whenever it comes to mind. I can vent when I need to, all I have to do is turn on my 'puter.
It is raining in the Poconos again big surprise.
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Only problem with this site is that I begin to think that being a wonderful, smart, funny, helpful, kind person is the cause of BC.
Diane, your MIL's story and experience is wild! 20 years ago treatment for BC was practically caveman style. (Doesn't explain why if she's been seeing ONC until now she still doesn't know).
Laugh- I love all these posts so much I don't know where to begin to say anything. (Really Rach? No long post? Yeah, really! You all said everything and mo' better than I wanted to say.) I do fear what would happen if I lost this site, and especially this thread at the moment. Oh well, more fear.
Brenda- I missed the part about you going for brain MRI- prayers for you. Meanwhile, I am waiting for you to tell me where you are so I can find you in-person support groups local.
Hugs and love and thanks all.
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It is nice to know I can bounce things off of you all.
Maybe I should post this on thread about dealing with heat, but it isn't really hot here. So here is the thing - since I have been taking tamoxifen my temperature controls are shot. I haven't had hot flashes per say, but I start sweating with the least bit of exertion. Last night I went to the gym - I had sweat dripping in my eyes. Today I had a pilates session - my instructor pointed out that even my forearms were sweating. I am so tired of feeling repulsive because my shirt is soaking wet and no one else around me has even broken a sweat.
I have been taking tamoxifen since last October and this has been happening to me for the last month. Does this happen to any one else? What do you do?
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lisa-e - welcome to my world
I am only half kidding, I haven't started Tamox yet but my whole life I have been sweating like you describe. If I even look at a silk shirt I start sweating. What I do? Wear cotton, sleeveless tops in summer, winter layers, wash my hair a lot. I'm a sweat ball. New trick from RADs, I used cut up cotton t shirts swatches to catch the bra sweat under boob. Mary- TMI alert all- I got my period the day before you went for oomph. That was like August 4, right? I STILL have my period. Sleep well tonight
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Rachel, I like your description - 'sweat ball.' Yep, I feel like that. . .
I do wear cotton (or wicking fabrics). Ah well, at least I don't have to worry about 'bra sweat'. Another advantage to not having boobs.
I think I may start carrying a hand towel with me so I can wipe some of the sweat away.
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lisa-e.....carry that towel with pride. people at the gym will think you are a work out maniac!!!! go girl ~ sweat it out! seriously sounds like hot flashes. SE's from tamox can start anytime and you may be in peri menopause now. effexor works for the hot flashes so I hear. i don't have them yet but my girlfriend (40 and peri when DX this year with SFBC) did and as soon as she started effexor...POOF they were gone. she was drenched day and night with them. rachel LOL to sweat ball....i sweat more than most, not perfusely but when it is hot out (over 80) i am sweating some. when i went through chemo i didn't sweat ONE bit. it was the weirdest sensation not sweating.
much luck to all the sweat balls
hugs
Diane
key SFBC is short for stupid f**king breast cancer
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Hello all, the rain stopped. i had to take my son to the dr. He has a very bad sunburn. He went to work w/dh and wnet in the lake. He did not use sunscreen, b/c he did not want to bother dad.
I go back to surgeon for c/u on my stitches. Then Tuesday it is back to work. I hope I start sleeping!!!!!
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Diane, I am actually official in menopause now - over one year since my last period. When I started taking tamoxifen, it had only been 4 months since my last period. As I had a long history of stop and start periods, my onc treated me as if I was in peri menopause, not menopause. In another year, we will consider switching to an AI. I don't want to though as I have the idea that tamoxifen se's are less severe.
Right after I had my mastectomy, I started having hot flashes. Too, too hot, flushed and sweating. They stopped after a week or so. What I am experienceing now is different - No flushing, just profuse sweating. At least profuse sweating won't hurt me. I'll see what my onc says next visit about effexor, although I think I'd rather sweat than take another medication.
Mary, I hope your son feels better soon.
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Hello ladies,
I was dx with DCIS 2cm and IDC 1mm microinvasion ER+ PR- HER2+++ in Jan 2009 and had Bilateral mastectomies in March 2009. No chemo, no rads and so far no Tamox not enough tissue to do the Ocotype DX. I was prescribed the Tamox when I saw him a few months ago but was so afraid of the side effects I never took it. Well I had my follow up with him today and he really wants me to at least try it so I can say I did all I could to prevent reccurance. I have the prescription in my hand and I just don't know if I can do it. Please give me some encouragement to get this sucker filled. I already burst into flames with hot flashes (still premenopausal) and have arthritis so that's why it scares me so much. Thanks in advance for any advise. Take care
Dee~
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Hi Dee,
Had similar diagnosis as you and also was 'lucky' to escape rads and chemo. I started Tamox on April this year and have had not too many difficulties. I do have hot flashes but not as extreme as some of my friends on this board, I have aches and pains that come and go. I was also really afraid to start the course of treatment as the se's freaked me out.
My advice is to you is try the treatment as it may not be as bad as you think. I now look and see what others have to go through and think I do not want this disease back and I definately don't want the other treatments that are available. Taking the tablet for me is now insurance,even though I do take it still with slight fear in my heart.
Be kind to yourself and do what you can to look after yourself
Big hugs
Viv
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My son is sleeping, so the silverdene must have worked somewhat. I also swtiched from ibuprofen to tylenol.
Dee, take the tamoxifen, if the se's are too bad you can try Effexor XR, it has worked wonders w/ my se's. I just had an ooph and have had very little se's for menopause. Yes I am in surgical menopause. I had hard about women waking up in recovery and having immediate symptoms, I still have not had many. I am a bit irritable, but I really just think that is because I am tired.
Good luck to all and Good night!
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dee, you're already getting the hot flashes, so you might as well take the Tamoxifen and get some protection while you're at it. If you find that the Tamoxifen makes things unbearable, you can always stop taking it, but you won't get any benefit at all from hanging onto the piece of paper that the prescription is written on.
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ya can't beat patmom's logic!
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Hi Dee - like the ladies have said, just give it a go. I had problems initially, went off it, got scared and now am back on it. Strangely enough the side fx went away as well. It really seems such a personal thing as far as reactions and side fx go with this little pill. The first one is the hardest one to swallow - some lady had counted out the number of pills for the whole 5 years and was doing a countdown. Try and focus on the positives not all the crappy stuff, there is already plenty of those with this SFBC (love it Diane!!)
hugs
Helena
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Thanks ladies I will get it filled this weekend. Now do you all take the whole thing or break in half? What time of day is best to take it? Maybe it's just trial and error and I will have to figure it out
Glad there is so much support here on this site, all the ladies are incredible and I am so grateful you are here. Kinda like one stop shop therapy..lol0 -
Surprised people are still awake!!! Just heading off to bed myself. Dee - like Meg (Ivorymom) I too take the split dosage, 10mg when I wake up and 10mg after dinner. I also started taking it at the lowest point in my cycle - after my periods had finished - about mid cycle when I wasn't feeling hormonal. It is working great so far and no debilitating side fx, I am also premenopausal.
I wish you luck Dee.
Good night everyone.
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Dee, you may have to experiment with when to take it. I take mine at 8 each night but my girlfriend takes hers at 8 in the AM. You will be relieved after you take pill #1. That was the hardest one to swallow for me
Hugs
Diane
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Hi ladies! Geez, so so so many posts, I've been busy at work this week with a coworker out on vacation. Just now got caught up on this thread. I tried a couple of times to peek at what's been up...but not enough time to read them all. SFBC!!!!!!!!! I LOVE IT!!!!!!!!!!!
Dee, glad you are filling that scrip...don't want you to look back and regret not taking it. We're all in this together and here's hoping for NO se's for you!!!!!!
Well can't remember now who said they were suffering from hip/neck 'stuff', but I am happy to say 'thank goodness its not just me'...you know to validate some of the se's I've been having since starting the 'happy little pill that keeps on giving'.
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I take my tamoxifen in the morning. It works for me. You will have to find out what works for you.
Thank goodness Effexor XR works fpr me on the se's and the menopause symptoms. The surgeon that did my ooph was surprised that I had not had any menopause symtoms. I have to call med onc b/c both surgeon and onc want me to take amiridex.
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OK so I am stoopid... may I assume that SFBC is SheetFookBreastCancer?
So... its HOT in NYC... as I am sweating profusely on the subway (and for the newbies, that's me PRE-Tamox, not even taking it yet) I am thinking about everyone who is swimming in sweat at night. Actually I am thinking about the big bear costume I got for me and my son (I am trying to go as Yogi Bear and Boo Boo) for Halloween. By then I will be on Tamox and I worry that I will wreck the outfit by being the big wet sweaty hotflash bear. Anyway... so being as I am usually a gear head car chick, I start thinking about the chamois we use when washing and drying our cars. Synthetic chamois are the best and often they come in HUGE sheets- I guess for people who have to dry off their monster trucks. They are nice and soft and machine washable.
Chamois work like this (for the non-car gals)... you have to get them wet for them to dry. You soak 'em, wring 'em out and then wipe down your car, and its dry instantly, no spots.
So, I'm wondering if it would be helpful and convenient to lay a big synthetic chamois down on the bed sheet, and or make a pillow case of it. Its soft and clean and will dry up sweat so maybe we wont have to change the sheets every day, and maybe it will save us from sleeping on a head-to-toe wet spot, and make life easier for any companions in the bed?
Then we can just take the chamois off in the morning if its gross, put in the washer and that's that?
I am also thinking of making some kind of garment of this chamois I can wear inside the bear costume.
Does this sound at all helpful????
Here's one site that sells them, they are everywhere:
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Rach - yep, you got it in one. Seems stupid BC, and stupid test etc. just won't cut it here. And let's face it - it seems to sum it up pretty nicely. SFBC! I looked at your chamois site, just cos I thought you were kiddin but olympic swimmers use them - I can remember seeing these small towels with the divers - mmmmm divers!! Hey maybe my mojo is coming back. Nah, false alarm! Make sure you get some snaps of yogi and booboo, sweaty or not..but you won't be ....
Kari, bummer about your hip and neck stuff - makes you even more of a hero with all the exercise you are doing
It is the most beautiful day here in paradise - just been for a run and very red in the face.
Ainm - how are you doing?
have a great weekend everyone
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Ok Rachel, you had me ROFL, and it hurt my inners(only kidding) . You should market a line of Menopause Clothing and bed sheets out of Chamois. Instead of LA Gear you could call it HF Gear or MP Gear.
My mojo was coming back, but then I remembered no "fun" for 2 more weeks. I am not sore by any of my incisions, but by my pelvic bone. TMI ALERT`~~~~~ I even have a bruise from my pubic line all the way down, and it is sore, which turned off my mojo thoughts.
I have been feeling really good. Very few yet manageable hotflashes, no moodiness and maybe a sense of calmness; not quite sure how to word it, amybe a sense of relief????
Yes we will actually have summer weather this weekend WOOOOOHOOOOOO!!!!!!
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That is my youngest in the bathtub. She is 4yrs old.
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I have lost weight, and I just started 1/2/09 with Tamoxifen. This sent me into menopause although it hasn't been a year. I am 51, and my MD said no more periods. Nice. I have some hot flashes, and dry vaginal area.
Denise
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Denis, me too, same all the way.
All, maybe this has already been discussed here, but thought I would add, since I am not sure!
I am having a big recon. surgery Sept 3, and my ONC said to stop Tamox. 1 week prior and 1 week after. (Some surgeons require 3 weeks prior and 3 weeks after). Just mentioning, as I almost missed this. It is due to the blood clot possibility.
Spring.
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I had an ooph on Aug 4th and my surgeon did not stop Tamox. I had to stay overnight in hospital and they gave me Tamoxifen the next day. The did give me TEDS socks and a leg massagers to help w/ circulation. When released surgeon told me to make sure I walk aorund to prevent clots.
IMHO~~~~I think that dr. are too afraid of malpractice lawsuits. FYI, I personal think I would have been at higher risk for blood clots, since grandfather had a stroke and heart disease runs in my family. Also dad passed away one year ago from a PE. Again this is just MHO
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Spring, I didn't realize you had a recon surgery coming up!!!!!!!!!!!!! What have you had done thus far? Interesting about stopping the tamox for the surgery.
Helena, way to go with the running! and so happy its gorgeous weather right now for you!
Spending a wonderful day with younger DD and DH today, they are out cruising in DH's convertible right now! so thought I'd peek in!
Rachel, you are always full of ideas and love them! You should be a writer!
Mary, Ouch! hugs.
Ok, gotta run for now! Keep cool all!
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Hi, all--I just read all the posts since I last posted--you all are a busy bunch! My head is spinning, but I think that's primarily from the chemofog that makes it hard for me to track who said what and when. Anyway, thanks for all the support.
Several comments: 1) Rachel, you are so generous with your offer of finding a support group for me! Rest assured, I am assertive, knowledgeable, and willing to pursue all avenues and resources, and I am aware of what my limited options are. I think, for the time being, that I will continue to pursue support from BCO and when I have more energy I may be willing to travel a bit of a distance for a support group. 2) When sharing my comment about not being able to join a particular support group, I was talking about one in my local area, not through BCO. 3) Don't worry about offending me with "colorful" language! I am well known for my energetic use of, um, shall we say, certain words and expressions. I am more likely to get offended by comments that reflect no empathy whatsoever for what we go through in coping with breast cancer/treatment/after-life (you all know the ones I'm talking about...). 4) My Brain MRI is now complete, and I should know the results early next week, at which time I hope to give a big SIGH of relief. 5) I really, really will start the Tamox tomorrow! It's official-- no more excuses, avoidance, rewards, etc.6) I'm not going to use this thread to focus on me, me, me! I look forward to getting to know you all and have a better sense of "who is who"!
Take care all------
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http://www.youtube.com/watch?v=3catMhgCmcE&feature=PlayList&p=4D4BC92B42956C24&playnext=1&playnext_from=PL&index=3