Bottle o Tamoxifen
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Are fish oil and Omega3 supplements the same thing? Just took my last fish oil pill, need to buy more.
Rachel, let's see 8:05 a.m. here...so 11:05 a.m. there...repair guy show yet? Jealous of that long pretty hair! But hey, mine is growing back pretty fast now!
Helena, Hi! Sounds like you got some stuff accomplished during the 'blast from the past' with no electricity, since you said girls were due home from school, I take it your little one is all better?
At the checkout line in Walmart last night, a coworker came up to me in line, she said her DD has what they think is the Swine Flu. Since kids are back in school, here it comes!!!!!!
Lisa, I love hearing the dating stories!
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Oh, onc just emailed me back...asked her about the zometa and about exercise (someone posted on another thread that feeling the burn was bad:
Dear Kari,
Some preliminary studies suggest that Zometa may be protective but we don't really know yet-which is why we are doing this study. We are not routinely giving it for that reason. There is no problem with "feeling the burn" You may produce lactic acid in your muscles but it does not change the pH of your body-that is something very difficult to do. So, exercise away! Julie0 -
OK he showed at like 1130, ran the self test, confirmed it was what I told him- but they didn't order the parts I told them to... so it will probably be Monday or Tuesday again before I have a dryer...
meg- on the osteonecrosis, I was really worried, with a long history of dental work (I had a tooth coming out by my nose when I was a kid) and an implant and crowns and stuff, so I asked my DDS, who is also head of U of P Dental School. He said that as long as your mouth is "stable" in good health, that it should not be a problem, and even so, there are ways to deal with problems. I think its a really good idea to ask your dentist before you start Zometa.
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Lisa- a bunch of us made those cartoon avatars of ourselves on http://www.madmenyourself.com
Its fun! Then I made some composites you can see later when images come up:
Helena and Me:
Me and Meg:
Mary and Me:
I did not do chemo thanks to a low enough OncotypeDX score - just squeaked in under the wire.
kari- if you wanted to do the zometa would she let you? aside from the VERY rare osteonecrosis problem, its pretty much without SEs (if you do the slow infusions). Your call but I am glad you got your ONC to confirm! I figure it can't hurt! and may help!
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Oh and Lisa for me the only good thing cancer brought me was friends I have made here and understanding and consideration for other cancer patients.
I was happier than I had ever been, I had worked hard for that joy in my lift and my great health when I got the DX and all i wanted was to spend time with my baby boy, lose weight and publish my book (oh yeah and get back into my home after the fire, win the court case etc). Not a damn thing to credit cancer for, it only set me back, nothing good about it, nothing good comes from it, my greatest joy would be never having to deal with it again, never having a friend deal with it again, save it for Osama Bin Laden.
In my daily pill dispenser box is Iron, B&L Preservision, Antacid and soon, Tamoxifen
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Hi you lovelies,
Do any of you Tamoxifen ladies have "eye side effects"? I looked it up on the Web, and it seems it would be very rare. However, I am noticing recently that my eyes are a little "goopy feeling". That was not listed as a SE. LOL. I have been on Tam. for 5 months now. Just checking. (Maybe it's just allergies, tis becoming the season after all...)
About Zometa, I was found to be osteopenic with a bone density scan, so I as approved for Zometa infustions (by insurance) for it's bone building qualities. I was really wanting it, though, b/c of that study where it was shown to prevent bone mets. I believe it is actually used for this for pt's with more advanced breast cancer... But they infustion nurse told me they get it more frequently (maybe monthly?). I am getting a 15 min infusion once every 6 months. It was like a total NOTHING infusion if you've had chemo....
Spring.
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Hi ladies...
I started Tamox about a week ago...so far so good...I've been trying to do catch-up reading on this thread but can't seem to make any headway...anyway, sounds like you're all wonderful ladies and won't mind if I just come right out and ask a question that's probably been answered somewhere in this thread...anybody knows if it's OK to take Prevacid with Tamox?
IVORYMOM and CHELEV...good to see you here...
Take care ladies...
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Hiya AmericanP- If Prevacid is like Nexium, which I was on, and now just any over the counter type deal, then its was OK with my ONC to take both. HTH and Welcome!
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Hello, waiting to go get DD from daycare and then will finish my errands for the day. I have an eye exam later today. I got much accomplished today, I made DH Va appt and GP appt for a skin tag. I made kids dental appt for Jan and I even made my first gyno and mammo appt, post bc. I even finished my house cleaning. I still have folded laundry to put away and last minute things to do when Auntie and sissy get here.
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Hi everyone - off to work today so can't post to everyone - hello all the new tamoxifen train riders!!!! And all the lovely regular passengers (((hugs))).
Spring just wanted to quickly post to you - I am 7 months now and have had eye problems from about 2 weeks in - first really dry eyes but also reduced vision (close up) - I use eye drops for lubrication and it was almost impossible for me the other day to thread a needle. I had 20/20 vision pre SFBC (I had laser corrective surgery years ago). I have also been suffering from goopy eyes and even had a few styes (sp??). Apparently the vision problems are only temporary and most return to normal after tam.
Got to run - love to everyone
big hugs
Helena
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Happy to report that have been on 10mg per day for one week and the bone-gnashing depression and despair has yet to return! Yes, hot flashes . . . yes, aches and pains . . . and yes, I am, after all, 52 (horrors!) and aches and pains are to be expected, despite feeling emotionally as if I am 17! My last period was June 10 . . . experiencing phantom cramps, but hell, it's about time for it to end (one would think!) - so there it is. Perhaps this shall be doable after all! Also, extremely pleased to share that "mojo" not affected in the least! I do hope this will last . . . we shall see!
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I still want my MOJO back! ARRGGHH!!!!!!!!!!!!!!!!!
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Hi to all. LISA, thanks for the reassurance about not keeping up with all the posts; I am typically a high functioning person and this chemofog has really set me back! CHELEV, I'll be interested to hear from you, since you started Tamox around the same time that I did. So far, I have noticed feeling warm all the time with just a couple of noticeable hot flashes, but also some eye dryness, vag discharge (ugh--something I have rarely had), and increased fatigue in the afternoon. SPRING, in addition the the dryness, I have experienced what I would call "sluggish" eyes but no goopiness. Hi, AMERICANPINAY, I'm happy to see that another newcomer is checking in here (sorry I am no help with your specific med question). BRITTt & KFINNIGAN, I have rollercoaster mojo--it shows up at inconvenient times and then seems to be elusive when the "time is right." I'm glad that it hasn't disappeared. MARY-I like your attitude about not being a victim--not letting self-pity get the best of you. I struggled with the "why me" issue when I was first diagnosed at the age of 38 and ultimately decided that I would not allow breast ca to "make me" feel like a victim. I was a passive person only briefly in my life, and I have been assertive since my early years, but still the victim issue reared its ugly head for a while. I have other issues to deal with now--the whole learning to live with uncertainty aspect of cancer after-life. (I'm sure I'll get that one worked out really soon....) And RACHEL, what's the topic of your book?
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Here goes!!
Lisa - you are a busy lady - have fun (as if you wouldn't!!)
Kari - yeah little one all better - boy they bounce back quick. Relief about the MUGA - normal range - and we all know how unrealiable the tumor marker test was for me. Hugs honey.
Britt - Yeeaahh no depression and I love the description of being emotionally 17 - that is so me girlfriend LOL.
Rose - hugs, sorry to hear that you are down. But a bitch with a sex drive - isn't that every man's fantasy????? LOL
Cinderella and Chelev - hello. Nice to meet some more train riders. Just squeeze in and have your say - you might have noticed we are a chatty bunch here, hope you are doing OK.
Diane - glad the side fx have gone after the break. Hugs.
Mary - lots of ups and downs in your life - the human spirit is an amazing thing isn't it. Life is so hard but it is soooo good.
Brenda - you have a calmness (just like our Meg) to you that I hope we get to see often. I love your posts, my genuine and real friend.
Spring - your surgery must be real soon - you will be back better than ever motivating and inspiring us all - and that is such a cheeky photo.
Rachel - that is some info there woman!!! No washer or dryer - hey you are living in the dark ages like I did the other day!! Like to see you live without the computer for a day ...he he he he ...
My periods are making me bonkus - I feel so happy yet I could cry. I don't think this SFBC has bought good things to my life but I do believe it has made me see a lot of wonderful things for the first time in my life. Yep all this and sober.
Have a wonderful Thursday guys. I am off to have a decaf tea, watch a bit of telly then take my bloated, hormone ridden poor old body to bed.
big hugs
Helena
Ps. sorry if I missed anyone ....
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Have a good rest Helena...
Welcome to all the new "train riders"!
Kari....about the mojo thing. Mine isn't really back. I just have that little excited feeling now and then when talking to someone I may be interested in. I really doubt it will ever be the same. After they hysterectomy...very very different. Since we can't take any hormones to make it better...this is the way of my life!
I am on my 12th straight day of work. It's 7am my time (Ohio) and I have been here over 2 hrs...only 10 to go!! woohoo!
check back in with you all later!
xoxo
Lisa
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Americanpinay - I take prescription Omeprazole which I think is the generic for Prilosec in the morning and Tamox. at night. I would just ask your pharmacy if you are concerned but I don't have any problem mixing the two. Good luck with the Tamox. Hope the SE don't come your way!
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Hi ladies.....
I started on Tamox over a month ago. After about a week.......I started having horrible leg pain. The pain continued to get progressivly worse.....to the point I was taking pain pills to deal with the pain. I called my Drs office and they spoke to him and he told me to go off them until I could get in to see him. I saw him on Tues....and he put me back on them. He gave me prednisone to try to help with the inflammation and leg pain. I will see how it goes. I HAVE to stay on the Tamox........because I am ER+........and terrified my cancer will return if I don't. But this leg pain is the pits........any suggestions?
Genia
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Hi gang. Im jumping in, I hope you don't mind. My friend, a BC survivor just had to have a D/E because of the tamoxifen thickening her endometrial lining, she was on it for two years and this happened. She said it was fine and she was only out of work for a day but it still concerns me reading all of the above posts.
Besides Femara, is there another option out there? Just curious bc I really don't want to go on tamoxifen.
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Genia,
Next time you see your ONC, maybe ask him/her about Lupron shots to put you in menopause and then Femera or another AI. It may be trading one side effect for another, but you never know. One of those may be doable if you really can't tollerate the Tamoxifen.
PS73. There is only one Tamoxifen for pre-menopausal women, but 3 AI's for women who are post-menopausal. Femera is one, there are two others (starting with A's!)
Spring.
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Hi Spring thank you for the information. I just found this on the net. Looks promising... I need to read more and find some strong stats, as I wouldn't just jump into something w/o clincial data.
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Welcome to the train ladies. Enjoy the ride.
Genia, I have no ideas, except to keep on the tamoxifen and see if it happens again. I had a similar experience pre BC. I was DX w/ 5th disease( the 5th childhood disease, muscles, mumps etc) it is a rash and in adults it can cause joint pain. Okay i left dr w/dd who also had it. The next day I woke up and was swollen all over. I was in pain, back to dr, he gave prednisone for swelling and took blood tests for auto immune disorders, lyme disease, all were negative. I have never had anything like that happen again, but since then I have had more joint pain than previously. He said it could be hormonal, so I saw gyno, she found ovarian cysts and I asked for hyster and she said no. Just think maybe if I would have had that hyster I would not have gotten BC and I would not have met all you wonderful people. LOL, but I do believe all things that happen to us happen for a reason and our lives moves us where we need to be. Okay it is too early for philosophy 101. Sorry ladies. Not only are you my support group, but this site is like a journal to me.
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PS73-My ONC said there were 3 kinds of Tamoxifen (SERM)... can't remember all of them at the moment, they were like "cousins" he said. Oh, one was called Raloxifene, here's something abotu that one adn Tamoxifen:
Study of Tamoxifen and Raloxifene (STAR) Trial
Be careful of what you read here, some people attribute problems to Tamoxifen that are actually other problems, this has been the nature of Tamoxifen from the beginning, in the same drug trial that proved it's effectiveness, using 13K women, half on Tamoxifen and half on placebo, the same side effects were reported by both the Tamoxifen group AND THE PLACEBO GROUP. The only side effects really atttributable to Tamoxifen alone are hot flashes and vaginal discharge- as most of the women here also report. Silver lining there is that if you do get the hot flashes the recurrence rate is even lower
Tamoxifen does exacerbate existing problems, like if you already have a blood clotting problem.
I couldn't get anything on the link you provided- missing page for me. If you want to check out the site, here's a great help:
Deciding Whether a Source is Reliable
This is your life and future, be careful who you believe! As far as the uterine cancer, women not taking Tamoxifen have a 1/1000 chance of getting uterine cancer, women on Tamoxifen have a 2/1000 chance of developing uterine cancer.
Genia- izzat you YOTH? Very sorry to hear about the leg pain
I was thinking same as Springtime, about you doing the Lupron shots and/or the Gosserlin/Zometa combo in the study I posted for kari, here is it again:Endocrine Therapy plus Zoledronic Acid in Premenopausal Breast Cancer
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Genia...I was on tamoxifin for a year, before switching to an AI. I had leg cramps and some bone pain in my legs..but this started to lessen, and then was very mild. At night it seemed to be worse. Mine got better after a few months, so I hope yours does as well.
The AI"s from my experience...were much, much tougher to tolerate than tamox. That is why I am back on tamox. I tried Arimidex and Aromasin....HORRIBLE, at least for me! The pain, the total fatigue! My oc wanted me to try femara..and I said..no...2 were enough. I gave arimidex 8 months..and aromasin only 1...that's all I could take..I could barely stay awake..and I work full time.
The reason I went off tamox and on an AI, was the tamox did just what PS73 was talking about. I had cysts that formed on my ovaries and the lining of my uterus was thickened. I was having non-stop bleeding, so I had a total hysterectomy 1 year ago this month.
Tamox has been around, much longer, and more studies have been done on it compared to the AI's. They are newer drugs, which quite honestly...scare me! The things they do to your body..are so harsh. That's my opinion, and my experience though.
Lisa
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I've had some weird leg cramp/pains for months now and never knew where the heck they came from...Duh! Tamox! along with the back/hip/neck crap...my other bc friend the other day says she is in pain all over! Yikes. Went to a movie last night with DD and during the movie had one hot flash...I always seem to get one an hour or so after taking my pill. I don't get them too bad, just a warm/hot flush all over, but I didn't perspire, just felt clammy behind the neck.
Lisa, 12 days and long long hours!!!!!!! AARRGGHH!! What do you do? You always sound so upbeat!!!
Rachel, I think I'll wait til my in-person appt. with my onc to talk about the Zometa thing again. Good luck with the dryer mess. What a drag.
Hugs to all!
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I was checking out stuff about Tamoxifen and Leg Cramps and found some other information that was kinda interesting too... I haven't read the whole page yet but...
From this page on the American Cancer Society web site
"Another study that looked at tamoxifen for breast cancer risk reduction, the IBIS-I study, was an international clinical trial that began in 1992. It followed more than 7,000 women at increased risk. The study was designed much like the BCPT study described above. After an average of about 8 years, the women taking tamoxifen had about one-third (34%) fewer cases of estrogen receptor-positive breast cancer compared with those taking a placebo.
More recent findings from the IBIS-I study also have shown that the breast cancer risk reduction effect of tamoxifen continued, even after the 5 years the drug was actually taken. In fact, this study has shown that tamoxifen's risk-reducing effects lasted for at least 10 years. In contrast, most of the side effects stop when the drug is stopped."
So that's nice
Take it for 5, benefit for 15, and if we can muster the SEs for those 5, the SEs should leave while the benefit remains.There's a lot about Raloxifene (Evista) how it differs from Tamoxifen, here's one:
"Major blood clots
As with tamoxifen, blood clots in the legs or lungs are a serious risk with raloxifene. In the MORE and RUTH trials, the number of blood clots in the lungs or legs in women taking raloxifene was slightly higher than in those getting the placebo.But in the STAR trial, the women taking raloxifene had 30% fewer blood clots than those taking tamoxifen (100 cases vs. 141 cases). So while raloxifene may raise this risk slightly, it doesn’t seem to raise it as much as tamoxifen.In most, but not all studies to date, tamoxifen therapy is linked to higher risk of stroke. In the STAR trial the risk of stroke was much the same in the raloxifene and tamoxifen groups."
and
"In clinical trials, other effects reported in some women taking raloxifene included:
hot flashesvaginal dryness or irritationleg crampsflu-like symptomsswelling in the hands or feet"and"Raloxifene is only used in women who have gone through menopause. (Tamoxifen can be used by women before or after menopause.)"then it goes on to discuss AIs. Interesting page, here's it's proper title:ACS :: Medicines to Reduce Breast Cancer Risk great links at the bottom too.0 -
My oc..is now saying a total of 10 yrs on tamox or AI's. When I first started this 2 plus years ago, it was 5 yrs..she said now studies show 10 is best.
Kari...I work for an airline. I work at the airport, ticket counter, but mostly baggage service..so I deal with all of the unhappy people who are missing luggage! Usually not too bad. I like the perks...I fly for free! I am not always upbeat...but thanks! My 12 days in a row..were my choice to make some extra money. But I am off tomorrow and Sat...thank goodness!
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Thanks for the info Rachel!
Lisa, ok makes sense, an airline! One of my girlfriends who lives in N.C. works for an airline (reservations), she flies all over the world!!!!!! We've met up before in Maui, Vegas and she and her DH and boys will be in Cancun with us next April! Wish I could afford to go everwhere she does, but its fun listening to her tales and seeing her pictures from abroad. Right on for the extra $$. I wish I could work OT sometimes. I watch that show Airline, that follows Southwest at the airport...some people are just jerks. Kudos to you my dear for dealing with all the crazies! I, of course, am very polite! LOL!!
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Thanks for all the info ladies.....I'm gonna see if I can stick out the Tamox along with the low dose predinisone for the leg pain. Just gotta keep tellin myself that I NEED this drug......no matter what! I am supposed to contact my Dr. for a phone consult next week. He wants to see how I'm feeling on them. To best describe the leg pain........it's like I need someone to pull them and pop them back into place. Very uncomfortable!
I'm going to start walking.......as much as I can to see if that possibly will help some. I would be willing to stand on my head to keep the nasty BEAST away!!!!!!!!!!!!! lol
hugsssss
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Genia,
I had a rocky start to Tamox and Ibandronate which I am also on......I feel much better now but the beginning of my train ride which started 7/10 was like traveling through the Rocky Mountains....UGH. I had neck, back, leg pain.....leg cramping which I still have but things are slowly getting better. I am excercising more and I think that is the big issue for me.
Good luck
Diane
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The kids are restless. Got a call from sister this am, had a tire blow out in Michigan, put spare on drove to sandusky and got 2 new tires. Car only has 35000 miles on it. My uncle called and said there was a black spot in his drive where my sister parked, like she peeled out, which she did not. Long story, had a brake job at 18000 miles and complained to dealer three times that something did not seem right, each time dealer said brakes were ok. When she stopped in Youngstown Ohio, tire smell hot and w/ infor from uncle, she took car to dealer, caliper is locked up. So they will not be here until 8 pm tonight. Sister is going back to dealer in Cali and giving them whatever little piece of mind she has left.!!!!!!
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