About-to-Start-Hormones Group
Comments
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Merry Christmas and Happy Holidays all!
I finished rads on 11-28-08 and will start Tamox this weekend - a little apprehensive as menopause or the SE's of it were not even a thought in my head yet at 38. Oh well - I will just hope I don't have to go through it twice - not likely but it is possible. Chat with y'all later!
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Welcome, Starwish624! This is a geat bunch of courageous women, with more d*mned compassion and kindness than you could ever imagine.
This is a love/hate kind of place...love the members - hate having to be in the club!
Happy New Year and let's hope for the best for all of us!
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Hello, KAK and friends. I'm sorry I've been out of touch for a while. I think I needed a break from BC. Had to go off my beloved Wellbutrin to start the Tamox. Switched to Lexapro. Today was my last Wellbutrin and I'll be starting Tamoxifen tomorrow night. I was prescribed 20mg but maybe I'll start with half a dose after reading some of your posts. And it sounds like taking the 20 in two separate doses helps. I'm nervous. Switching antidepressants was hard. I hope the Tamox doesn't make me feel even wackier. I've also started having a lot of pain in my breast, over two months after rads are finished. I guess that happens, but it's scary. There was no pain for about a month, and then all of a sudden I feel pain and fullness and aching. Oh, well, going to the surgeon for a followup on the 12th. She'll check me out.
I know that I was "lucky" to have only DCIS, but I'm still ready to put 2008 behind me and start a fresh year. Here's hoping that 2009 is our best year so far, with plenty of healing and happiness.
Cheers,
Ace
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Ace, pain after any surgery is kind of normal. Your nerves have been disturbed and sometimes they take a while to recover. I'm five months past my mastectomies and I still get occasional pains...nothing too serious, though.
I also remember, after another surgery about 16 years ago, that I had numbness in the area because the nerves were cut, and then developed some pain as they regenerated. That was many months after the surgery. So, mention it to your surgeon as a precaution, but I'll bet they say it's normal recovery.
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Ace,
I was dx'd with IDC and had my lumpectomy the same time you did. I started tamoxifen a few weeks after finishing rads in October at 20 mg and have not had unbearable SEs from it. I'm on the low-dose Effexor as well (started last month to control the night flashes) and that has helped immensely. You're already on the anti-d's, although switching to a new one. These ladies recommended taking the tamoxifen at night, and that's been good for me. It did take about a month after starting the Effexor for my body to fully adjust to both meds.
I too have some twinges and pain after finishing rads in October. From what I understand, we could have this for years. I work out a few times a week,(new since the bc) and always feel better after stretching. Yoga has been a godsend also.
I agree with Nancy. Talk to your doc, but it sounds normal as normal can be for us.

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NancyD and Bluegems, thanks for the reassurance. I was going to start the Tamoxifen tonight, but I I just went up another 5 mg on the Lexapro, so I want to see how that feels before I add in Tamox. I'll probably start the Tamox after the first week in January, after my period, since there's a teeny (extremely teeny, teeny, teeny) chance I could be preggers.
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Hello All,
I hope everyone had a nice Holiday and are feeling well.
I wanted to check in with others regarding the Tamox. I have been on it since 10-20-08 and am doing OK. Beside weight gain( I workout EVERY day and it doesn't help), my hot flashes and night sweats have seemed to calm down. The first month was the worst, but now they are managable. I got my period after starting tamox and was due for it again on the 18th and have not gotten it. I am not preggie! I am 42 so I'm guessing it's either really late ir I'm in Tamoxopause. Any one else have this.
Redheadace1 - preggers!!! Becareful with the meds if you are pregnant. Check with you doctors and best of luck to you. Do you have other children?
Hope everyone is feeling well.
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Redheadace 1 - Glad to know someone is haveing sex!!
How do you feel about the possibility of being pregnant? If you are, think of all the "grandmas" and "aunties" you'll have!!

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Makraz, exact same period story for me, been on tamox since 11/4, and first period was normal and on time Now I'm a week overdue, seemed to have PMS and spotting symptoms last week, but looks like I'm skipping a month. My Dr. said not to worry if lighter, heavier, shorter or longer..it is bleeding in the middle of your cycle that could be a problem. I'm a little nervous about keeping track of what's right and wrong.
kle
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I started tamox on Dec 1, and for almost a month felt no side effects at all. I was due for my period on Dec 26, so about 5 days before I my due date I started getting night sweats, and over the holidays I think I had a couple hot flashes at gatherings and definitely trouble sleeping due to the night sweats. I also had forgot about three doses of tamox & blood pressure meds between Christmas Eve, Day and the day after and had been drinking alcohol more than normal so I'm not really sure what to blame it on. I got myself back to exercising yesterday. Still didn't sleep all that great last night. I feel better today, but haven't got my period yet. Feels like a battle going on in my body. I hope it's just temporary. Maybe I'll just get my period and it will all stop. Weird how it affects everyone differently.
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I started Tamoxifen on Dec. 1st as well. My first period after starting it showed up at about day 31 - which is, interestingly, the length my cycle used to be back when it ran itself. With the BCP's and then in the five months off BCP's, prior to Tamoxifen, I was running at 28/29 days. So how are we to know what is "bleeding in the middle of the cycle" if we might sort-of miss a cycle or have it run late? I'm continuing to track my cycle and see what happens. I miss the magic of BCP's - the ability to just look at a calendar and my watch and know EXACTLY when my period would show up and then leave. I suppose I traded that magic for my cancer...
Took my 13 1/2 year old to the dermotologist today for mild acne. I'm sure the dermotologist thinks I'm a nut. She happened to mention that sometimes she'll put teens on BCP's (this was mentioned as something to do in a few years - certainly not now, as my daughter hasn't even gotten her period yet) since it helps so much with their skin. I was very calm, but I said that I had done that - started the pill by about 18 years of age, ostensibly for my skin - and ended up taking it for over 20 years (longer, but I'll take out the few years of pregnancy/nursing). Allegedly, it is not a known cause of breast cancer, but I can't help but look at that 20 years of monkeying with my hormones (in an estrogen-heavy way, since that's what keeps the skin clear) and then at my very hormone-receptive breast cancer and WONDERING. So I said I'd be hesitant to recommend the same thing to my daughter, after what I was currently going through. She was good about it - there are other options for the future - but I'm sure there's a note in the file "mom is paranoid about meds." There's just no way to know. I'm hoping I get to keep a dialogue open with my daughter through the dangerous teen years, so that if she does opt to take birth control pills for her skin or other reasons, she'll consider limiting how long she does that.
I'm still not having "night SWEATS" per se - but I wake up to "night WARMTH," where I feel sort of hot and uncomfortable. It doesn't get to the point of sweating, and it will go away in a couple of minutes if I move the blankets (we keep the bedroom cool at night). It's happening three or four times a night. Kind of annoying, but I'm not feeling like it's turning me into an axe-murderer or anything from sleep deprivation just yet. Hopefully, once my girls are back in school and I can get to the gym more reliably and my body gets used to the Tamox., this might taper off...
nancy258 - I know exactly what you mean about the "battle going on in my body." And I'm hoping it's temporary, too. I just feel sort of weird. Not dangerously weird, but weird.
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What is Armidex? I took Tamoxifen and now I am taking Herceptin. then will take Tamoxifen. I have not had a period since May 2008. I started chemo in April, 2008. I have not had sex in I do n't know how long... OUCH I sure do miss it!!!
I am scheduled for nipple reconstruction in Feb. I have 6 months left of Herceptin. I take it every three weeks. Anybody else on here taking Herceptin?
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Arimidex is an amarotase inhibitor. It's given to post menopausal breast cancer patients with ER+ receptors. Even after the ovaries shut down, some estrogen is produced, mostly in the adrenal glands. AI's (there are a few on the market...Arimidex is only one brand) prevent the manufacture of estrogen pretty completely so there's one less factor to feed the cancer.
Tamoxifen works by making the ER receptor on breast cancer cells not recognize the estrogen. So the pre-meopausal women who receive it still have estrogen in their system and are better able to withstand the process of weaning estrogen from their bodies if they start with Tamoxifen, first.
The current belief is that these hormonal drugs will only be effective for about five years. At that point most women who were pre menopausal and on Tamoxifen will be close to menopause. If you go into menopause, or are surgically put into menopause by having your ovaries removed, an AI would be the drug you are put on after tamoxifen.
After you are on Arimidex for five years, your oncologist might prescribe another AI such as Aromasin which might have another five years of effectiveness.
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Nancy D,
I did not know you could do one AI and then move to another AI potentially.... interesting...
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Since their chemical properties are slightly different, oncologists believe they might continue to work consecutively, although I suspect (no proof, just my gut feeling) that they might be less effective or work for a shorter period of time.
I seem to remember a few discussions on here about the efficacy of a period longer than five years for Arimidex, too. A long term study for that would probably still be ongoing since it hasn't been around much longer than ten years. The AI's are just too new to have much info about real long term efficacy.
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Hi, all. Just was reading the "I Quit" thread about the horrors of Tamoxifen and Arimidex. Scary. After reading about women with more advanced cancers who are foregoing these drugs due to SEs, I wonder if I'm crazy to be thinking about taking Tamox for low-grade DCIS. I wonder if docs recommend Tamox for people like me just because if they didn't, and we had recurrence, we would blame them for not having us take it. Or do we really need it?
So nerve wracking, these decisions. Well, I'm just going to keep an eye on my QOL. If that goes down too far, I'll quit.
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RedheadAce1 - I have a friend who had the same Dx as you, DCIS. They took out the lump, did some radiation inside her boob (new thing with a baloon!) and then tried her on Tamoxifen. She didn't like it, (had some troublesome SEs - I think like period would not stop..) So they took her off and gave her a break but didn't want her to stop. Now she gets shots to put her in menopause (Lupron shots I think) and will try one of the AIs. Her Mom also had cancer. It seems like the thing they do even for DCIS with ER+/PR+....
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Hi, everyone. Hope you all had a decent holiday. Mine was lovely, I have to say. Let's hope we all get through 2009 with no more bad news.
Ace, people who experience bad side effects are still in the minority with hormone therapies, but they are justifiably going to have probably a lot more to say than those of us who are doing okay. I've got a bunch of friends & acquaintances who took Tamoxifen for the full 5 years & had no problems & fairly minor SE's. They were, however, mostly post-menopausal. It's important to keep things in perspective, though. Plus, quality of life does matter & if you just can't stand how Tamoxifen makes you feel after a decent try, I think with DCIS, you shouldn't lose too much sleep if you go off it, as long as you get your mamm's & ultrasounds & MRI's regularly. For me, my risk of recurrent BC after my own DCIS surgery & radiation is around 15% & it's worth it to cut that in half with Tamoxifen. But so far, I feel fine & I'm 54 & the Effexor is doing a splendid job with the SE's. So, that's just me. If that changes, I'll have to think again.
Susan, you are too hilarious with your "Glad to know someone is having sex"!!!! LOL I hear that, girlfriend. OTOH, I just can't contend with what I'd have to go through to get some myself these days!
Love to all.
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Oh, a P.S., Ace. I'm having a bit of boob pain again myself. You gotta figure, anything that can continue shrinking our tissue for up to two years (i.e., rads) might cause some twinges now & then. Plus, my BS said it takes several months for all the tissue to calm down after surgery.
I got a lot of relief from doing some diligent massage on the breast & i'm going to do some more with these new twinges.
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Springtime,
I am having my ovaries out and hysterectomy next week (Jan 8)- I was peri-menopausal before chemo, post menopausal at the end of chemo. Onc wanted me on Tamox but a blood test revealed that I did not metabolize it so ovaries out was next option. My Gynecologist said he actualy thinks the ooph and arimidex is better than tamox for some reason- I didnt ask a lot of questions since tamox is not an option for me!
Kristy
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Hi Kristy,
I wonder why you had to have OOph? given you were fully in menopause? Could you not get Arimedex or another AI vs. Tamoxafin? But perhaps this is the safest bet.... My onc said something like, "We would know for sure you were in menopause if your ovaries are out". Hmmm. Don't they know that from blood tests? (( I am new to all this. ))
I am thinking about having shots to shut the ovaries down, and keeping them, (at least for now) and doing an AI. But I keep going back and forth. Ugh!!
Springtime...
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Hi everyone! I am here to join your Tamoxifen group! Just got my prescription today and will take 10mg twice a day. I was supposed to start the SOFT trial, but my bloodwork was 'iffy'. It will be repeated next month. I am trying to NOT think abt all the SE's and pray that they are minimal. hat is what frightens me the most. My mom was on Tamoxifen and had to stop d/t SE's. I remember her saying how awful she felt and now I am scared! I was thinking of just starting 10mg once a day for a week.
D
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priz47 - Welcome! I wish there were some way to know how many SEs we'll have beforehand. That being said, I guess if the SEs are at all tolerable, we're very fortunate to have something that might prolong our lives.
We started talking about how many of us had minimal SEs - I think many more of us have manageable problems, but many don't post about them, because they aren't a big problem - if that makes sense.
Everytime I see another bc obit in our small daily newspaper, I wonder what her dx was, if she had been on AIs,etc.... will it be me sometime soon?
So, I guess, I'll try to stay on the AIs for as long as I can, and keep my fingers crossed.
Good luck with yours and Happy New Year!!
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Oy. Found this, ladies, on rock's blog. I've been waiting to hear something about this from the BC Dallas Conference that took place recently. I think I'd like to get tested to see if my body is even using this Tamoxifen I'm taking. So, here's another article on this issue. Interesting.
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I know they work differently, but it wouldn't surprise me to hear that the AI's also have some kind of genetic component that causes them to be more or less effective.
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Dear Friends,
HAPPY 2009 & MANY MORE YEARS TO ALL OF US!
Hope everybody had a good festive season. Thanks to GOD we did.
I am taking my Tam for about a month now. Have very little SEs. I had my first periode after six days of delay.
Kathi, the article you shared with us is interesting. Appreciate to hear on this if you have more info.
Best regards to All.
Hope
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HI Everyone,
Happy New Year! Just finished up my second period after being on Tamox. My period arived 11 days late, lasted 3 days and was on the light side (Yeah). I still have weight gain, can't seem to get over it. I hate it!! I have tried everything but nothing works. Time to go shopping! I also have been very emotional prior to my period. I cry for no reason?!?!?! Once my period came, I felt so much better.
I still have hot flashes and night sweats.....alot! Some nights it seems I never sleep. I am also tired alot and achey. My DH is awesome, doesn't notice the weight gain (yeah, right) and walks with me daily after work to in addition to my exercise routine to help boost my metabolism. He keeps reminding me that I am alive and a survivor, so who cares about gaining a little weight.
Thanks for the article Kathi. I save all these interesting articles and brng them to my doctors....they just love me!
Hope everyone else is doing well. Let's all have a happy and HEALTHY 2009! Thanks so much to all of you for supporting me and everyone else throughout the crappiest year of my life! It can only get better!
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Well, I am down to 25mg/day of Zoloft and hope to be off it by mid-week. I'll then start the Effexor and give that a go - make sure that I can tolerate it - and then it's on to Tamoxifen. I think the prescriptions are burning a hole in my pocket...I am so ready to move on to the next stage.
Reading about SEs and so forth is helping a lot. I've had night sweats off and on for a few years now. They are a SE of Zoloft and I am pre-menopausal, but they are more frequent just before my period. Probably somewhat hormone-driven. Not really looking forward to more than that, but that's the way it goes.
I'm starting a running program with a friend in a week and I exercise 4-5 days a week at the gym. If things go well, I'll start back in at weight watchers....I don't want to use Tamox as (another) excuse for being overweight.
My first med onc didn't want to prescribe Tamox, and since I had rads and good margins, it probably wasn't necessary. After LCIS/ALH in October, I don't want to take on any more risk. The new onc says that if it isn't working or if the SEs are insurmountable, I can stop.
a healthy new year to everyone.
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KAK,
Thanks for that link, that was very interesting. I had heard about the Tamoxifen "Metabolizer" test, but this was much more informative. I wonder if it's the same thing, i would assume so...
Spring (Beverly)
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First night of Tamox tonight. Here goes nothin'!
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