Bottle o Tamoxifen
Comments
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Kelly
I have a thyroid condition also. I didn't notice any change while I was taking Tamoxifen, but I did have a dose change (lower dose) after I finished chemo. Well, I did have another change last year... after 1 1/2 yrs on Tamoxifen... an increase, and then, just in December, before switching to Femara, I had to lower my dose again. I don't think it was from Tamoxifen, though... I am very sensitive to thyroid hormone, and I am in between doses... 75 mcg is not enough but 88, which is the next dose, it's too much...
Good luck!
Harley
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OK, so went to onc. today, got my new meds (yipee) and figured rather than drive myself crazy, just dive right in and take them. So I did. PLEASE FOR THE LOVE OF GOD TELL ME I AM NOT HAVING MOOD SWINGS ALREADY! OMG I feel like I have ragging PMS. I cant believe it to be from the tomoxifen. It couldnt be already, right? Please tell me it is just a freak thing and I am just a B today.
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Hi Everyone
This is my first time on the site,I have learned alot.I just finished chemo and just did my fifth radiation and then tamoifen,I'm a little nervous because I am estrogen -,progesterone+,her+ and I was told by a nurse it probably won"t respond as well and this is a rare and progressive bc and I guess I'm a little nervous and plus I gained quite a bit of weight on chemo and wicked side effects.If there is anyone out there in the same boat ,I would love to hear from you.
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Hello everyone. I thought that Tamoxifen stopped the ovaries working, but I have noticed that a lot of ladies still have their periods. I had a partial hysterectomy when my daughter was 6mths(now 15yrs) but still get the achy ovary pain each month. This month (first on Tamoxifen) the cramping was a lot worse, so much so I had to take pain relief(don't normally). If this is due to the Tamoxifen then this will be first se since starting(jan 2). Has this happened to other ladies.
Hi Sheaves I can't help re the her+ issue but I also am trying to lose weight. Prior to chemo I had lost 20kgs but once chemo started I stopped exercising and regained 5kgs. I am back on track now and although the weight loss is slow it is shifting. I have heard that Tamoxifen can cause weight loss as well as weight gain (go figure) so it could be luck of the draw which se you get, if any. There is a lot of support on this thread from ladies who know a lot about Tamoxifen I am sure someone will be able to give you advice re the her+.
Take care
Jennie
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Cherneski, I think that you are just having a bad day. The Tamoxifen takes time to build up in your system. I haven't heard of anyone having instant side effects. Maybe it is just the stress of thinking about starting something that will last for 5 or more years. Five years sounds like forever, but it flies by, or at least the last 21 months has for me.
Welcome Sheaves, that is a less common pathology configuration, but since you did chemo, are you continuing with Herceptin? That is supposed to be very effective for her+ tumors, and that is a front of BC research on which progress is being made. The nurse may have been referring to Tamoxifen being a less vitally important part of the treatment plan for you than for someone who is highly ER+ & PR+. Since her remark obviously upset you, bring the subject up with your Oncologist and let him/her reassure you.
Anytime is a good time to start following a healthier diet, and start exercising. Getting the extra weight that you gained during chem off will help you start feeling more like yourself, and is apparently one of the best things in our control that we can do to prevent recurrence.
You may not find someone with the same experience, diagnosis and side effects here, but you will find support and friendship.
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Patmom, thanks I am a bit calmer now. WOW what a day~lol.
Welcome Sheaves, you found the right place to be.
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Well, I am back amongst the living! Kind of..lol I have really been sick.
I have missed all of you so much and will never be able to catch up with all of it. So, please just bear with me my tamoxibeauties!
I had bronchitis and the meds made me sleep pretty much most of the time, which reminds me, I need to take some more now.
So, hope to be posting again and finding out what all of my friends have been up to.
Missed you and love you!
Susie
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Welcome back, Susie. WE didn't talk too much behind your back. Hope your bronchitis clears up quickly!
AND welcome, newbies.... We are a pretty friendly, supportive bunch!
The Olympic torch just passed through my city tonight on its way to Vancouver. Any Olympics fans out there???
Have a good week all.
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kristinsmum,
the Tamox doesn't stop the ovaries from working. Tamoxefin blocks the estrogen from being absorbed in breast cancer cells that are ER+ or PR + because they thrive on the estrogen that continues to be produced in our bodies.
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You talked about me ...oh dear Was it bad? 0 -
Susie~ It would never be bad...we love you too much for that!!! I'm so glad you are on mend it is way to quiet without you!
Sheaves ~ Welcome to our group! I wish you all the best!
Jennie ~ That is strange...give your onc a call and see what he/she says.
Deborah ~ I'm glad your day got better. I think this whole situation can make us feel a little off kilter sometimes!
Caroline ~ Did you see it as it went by? I do love the winter olympics and will probably be watching it.
Bonnie~ I'm headed out to see my boys on Thursday, to soak up some warmth and wouldn't you know it, it is gonna rain all week here in Ca...sigh..good thing they are my sunshines! LOL!
Good night All!
Kelly
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Hi Beautiful gals! And cherneski .....about the Tamoxifen....just speaking for myself, I have been taking it just two weeks, & so far, I don't notice anything different! I still get mood swings once in awhile, like I did when I was a "girl" every month, but I keep waiting for just something to show up, so I will know "it's working!" I know that swab test, would show if we are metabolizing it properly, & I'll ask this new Oncologist when I see her on the 2nd.
The Doctor called with the results of the "Oncotype" test, & my score is "20"...and he said that is on the "low end of the intermediate group"....which means I shouldn't have to do chemo! Man, that was good news. I didn't want to have to do it anyway, especially at my age. I would have gone through it, if I had to, but I really dreaded it.....So now the Tamoxifen is all I have to do, Ha!
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Hi Everyone!
It's good to have our ornery Susie back again. I agree it was too quiet around here without her notes and pictures.
I've been off just a bit because my beloved doggie Paige is sick with Pancreatitus. She is today starting to wag her little stub of a tail and act a bit with it. Dr. said he thinks we caught it early. I researched on here and it can be bad and it makes them so very sick.
Jeannette: I found the aloe vera juice pronto at Walmart. You described its position perfectly. Thanks.
Kelly: I'm trying hard not to envy you with your warm weather....even with rain. I'm looking at 32 degrees and it's threatening rain any how. LOL
NOT...LOLHarley: I checked my Omega3 bottle and it doesn't say vegetable any where. Says lactose free and something else free....T brain here can't remember, but you know it's not soy. These are the enteric coated ones where you can't taste any fish. Yuk I've had the ones that talk back. LOL
Take Care All.
Bonnie
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YAY! Susie's back!
CatbirdC
I read somewhere that if it doesn't say on the bottle NO SOY, then there IS SOY in there! Don't know... I was thinking it maybe had something to do with the vegetable ... can't remember what it's called.... but, especially if you have capsules, they use some kind of vegetable... and maybe it's some kind of binder to hold them together...
I've been lucky, and my fish oil doesn't cause any issues...
Good luck...
Harley
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Harley ~~
I sort of doubt that all capsules use soy but like you say I don't think it's an issue unless it comes right out and says contains soy. I should ask my niece. She's a pharmacy student.
Gluten was the other thingie besides Lactose that was not in there.
Hope the Femara is treating you kindly.
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Bonnie
Oh, I thought it WAS an issue, unless it states NO SOY... otherwise there IS soy...
I hope you can check and find out... I get conflicting info...
Harley
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Jeannette~ Glad to hear your news!! I know that must have been a big relief for you.
Bonnie ~ I know, I have learned from you all in the frozen states to appreciate my weather, rain or shine!
Harley ~ This whole soy thing has me flumexed! As you say we get all this conflicting info. I really think that someone needs to come out with a line of vits and other supplements that are friendly for us gals! How are you doing on the femera?
Have a wonderful day all!
Kelly
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Kelly,
So far, so good.... I was feeling kinda achey and sore Sunday night, but I've increased my exercise and have been using the elliptical torture machine when it was colder, and am now outside running every day, when I don't have to work. So I guess I have overdone it. I took 3 Ibuprofen Sunday night, and woke up painfree Monday morning...
How are you doing?
Hope all are doing well on this Tamoxi train ride!
Hugs
Harley
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Hi tamoxiladies,
Well I survived my 1 year dx anniversary on 16th and mx anniversary today (and it was compounded by the fact that I had my first post mx mammo today in the same hospital and then a visit to my onc.) - did shed copious amounts of tears in the privacy of my home (kept it together at the hospital), DH was very understanding but I guess I just have to get on with it and not get so anxious about things.
And the train rolls on .......
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Yeah, (or should I say Yahoo!!) Jeanette - no chemo - YEAH again.
Hi everybody else ;-)
Yes, I joined my new grandson and his parents to see the torch go by - in fact, right in front of us, they changed runners. Maybe next month, we'll have some differences of opinion as to whose hockey team should win the gold. Listen to me - you'd think I was a sports' nut - but I almost never watch any of it. (Now the Olympic figure skating and final hockey game are something else.)
Re side effects - I have a sneaky suspicion I feel more (slight) SE when I inadvertently have someting with a phytoestrogen in it - like soybean oil, revesterol.... Increased hot flashes, red face.... but I am now almost 4 months in, and very littel SE
Cheers all
Caroline
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Oh, yes, Susie - it was ALL good stuff - mostly like we missed you....
Congrats Ainm - I have 4 and 5 months to go. Every day is a blessing!
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Sullykm: I had grave's disease 24 years ago & had a partial thyroidectomy. I've been on synthyroid for a year & a half. I was diagnosed w/ BC in March 09. My endocrinologist sees me every six months & does blood work. I started Tamox in June09. Everything has been status quo. Regular blood work is your best detective.
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Thank you everyone for missing me. That makes me feel good! I missed all of you too..a lot. I am laying off some of the drugs, so that I can be awake for awhile. lol I know it is good to sleep and rest when I have bronchitis, but, enough is enough.
It has been really foggy here everyday, especially in the morning and after dark. We had gotten a lot of snow and then with the temps warming up to the 30's, the snow was melting and making what they called freezing fog. I had never heard of that before. I am putting my mind in Spring mode! Warm days, flowers popping up, green grass..summer right behind it.
I have read some of the posts, and, the ones about soy are interesting. My oncologist, the one I fired, said no soy if I knew it was in the food. He said that it was impossible to totally eliminate it as it is hidden in so many foods. So, he said just do the best that I can. But then, an article came out and said it was ok. What are we to believe? So much is conflicting anymore that I don't know who or what to believe.
I haven't been to my cancer support group in awhile. I think I will go back once I start feeling better maybe. But, I have to admit, that sometimes it just upset me more, hearing some of the stories. Anyone else in a bc support group?
Well, just wanted to come on and say Hi to my tamoxibeauty friends and to hopefully catch up with all that is going on here someday. lol You all really keep this thread going and sometimes...too fast for me. lol
Hope everyone is doing well on tamox. I have been as far as I know so far. I have a few foot and leg cramps, but, nothing severe. I still have a few headaches, but, since I have been sleeping so much lately on the meds, I haven't had a one. lol
So, great to be back somewhat and I missed all of you. Have a great nite and an even better tomorrow. You all deserve it!
Love, Susie
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Ok, here's is another Awwwwwwwwwwwwwwww.....too cute!
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Oh Susie, you never disappoint with the cut pics!!
I never joined a cancer support group but I've been wondering if I should look into it at this point. I have wonderful support from family and friends and the great women on this board and I just didn't know how I would feel face to face delving into my situation and hearing about others. I know that only those who have been through it can really identify with the emotions we bc survivors have. I am one of those people that always cries easily (at movies,books,etc) and I didn't know if that is what it would end up being like for me--lots of crying. Does that make sense? I would be interested to hear of the experiences of those who have gone to a support group.
Well I'm off to bed--back to work in the morning for the first time in 6 weeks
. I'm ready to try to get back to my normal routine. Good night.TCK
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When I asked my ONC about avoiding soy and any other foods known to have high estrogen he shook his head back and forth and said, "that's what the Tamoxifen is for, you can eat soy." But being the type that wants to do all I can to keep cancer away I've made a point of avoiding it when I can. However, I can't imagine that a pill would contain very much soy so I've chosen not to toss out all my vitamins. I will be reading the labels closely the next time I have to buy new ones though.
Regarding support groups. I haven't sought any out in my area because what I've learned cruising around on this site is how nice it is to be able to jump to another thread when the one you're reading gets a little too scary and close to home. Being in a group face to face with someone doesn't leave you with much of an escape when the topic gets dicey. And anyway, I doubt there is a Tamox-A-Go-Go support group in my little town
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Hi echosalvaje,
I don't understand these onc's at all. It is MY understanding that phytoestrogens compete for the same spot as the T. There is no question - when I enter 'soy' into my data base in GeneMedRx (the software of the lab that tested my T metabolism), it shoots the T 'way up, thereby reducing the endoxifen. It is the endoxifen we need and it works like a teeter toter: if the T goes up (inhibited) the endoxifen goes down - BAD.
ALL my BC advisers here have said NO soy, in fact NO phytoestrogens if I can help it.
Check out:
maybe not as reliable, but states what my advisers have said:
http://vegweb.com/index.php?topic=12091.0
But there are lots of articles that suggest the opposite is true....
As I am only an intermediate metabolizer, I am totally paranoid about these. My one vise is a glass of red wine a week.
But you are right - we all have to make the best individual decision we can.
Good luck!
Caroline
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This whole confusion about soy is annoying, isn't it? I spoke to my oncologist, whom I actually really like by the way, and I asked him about the whole soy controversy. Basically he said to use common sense since the studies are currently confusing. He told me not to go nuts making sure that my diet was completely soy free, basically because that could be impossible to determine anyway. He said that a little here or there would not interfere with T, however he then went into stating the obvious telling me not to live on tofu and soymilk.
Since phytoestrogen can bind to the estrogen receptor in breast tissue it makes sense not to overwhelm our systems with it. But, the thing to keep in mind is that the pre-menopausal gals are still making estrogen. The T competes with natural and phytoestrogens for the estrogen receptors. That is what T is for and keep in miind that it works VERY well. It's very likely best not to ingest the phytoestrogens if possible, but I think that we should keep our heads about it and not worry ourselves too much if a little soy gets into our system. It's only one more thing to drive ourselves crazy about if we let it.
Ok, I probably didn't mention this before, but I'm a scientist. I've read studies and I understand how meds compete for receptor biinding. I used to do studies like that for a living, although not with T. Basically, be careful but don't drive yourself nuts! There's no reason to.
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Just a quickie on the SOY ~
I did ask my niece and she wrote:
Honestly, I am not completely sure. I did a little searching in journal articles and didn't find anything solid to back up soy being an inert ingredient or in most supplements. However, its suppossed to be beneficial to many areas of health, so it wouldn't suprise me if there was a little in almost all... I'll have to take that one to one of my professors! I had a couple TA's in pharmacology that probably would know
So on we go.
)Bonnie
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Susie~ Love, love, love the pic! Far too sweet! I'm so glad you are on the mend! As far as a support group...I haven't been to one. I'm a little bit like TCK and echosalvaje...I would either want to high tail it out of there and couldn't or I would start weeping and make whoever feel worse. Like TCK, I have a tremendous support structure and a couple of friends who are bc survivors and another friend whose mom had bc. My mom has a friend who is a 15 year survivor and she has battled it twice. And, of course you guys on the T train have been fantastic!! So I have people in my life who understand. Has it been a wonderful experience for you Susie?
Harley~ You go girl! All that excercise is wonderful! I'm wanting to lose some weight and have had the hardest time on the T, but if I add some exercise, it does seem to help...slow, but still coming off.
Kelly/Sully ~ Great advice!! It is amazing how many food products contain soy! Did you know it is in margarine...just found that out recently...anyhoooo, Earth Balance makes a soy free margarine. Whole foods carries it or one can go back to organic butter.
Well ladies got to get my day going, have an awesome day!
Hugs,
Kelly
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