Bottle o Tamoxifen
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Virginia, do you mean cramping in the calves or soreness, as after you exercise? I read somewhere that a glass of tonic water could help with that. I wonder if it still works mix with gin? After all, it is Summer and the living is easy... not!
Yellowrose, thanks for the warning.
It is day 14, I hope that all the SE have kicked in, at this point. Somehow I have the feeling that there will still be some changes after day 19, if not from the tamox, maybe from being in my 40's.
Murph, maybe we should stay away from %, that was depressing. One person was counting refills, as per month, then I am 0.5/60, how's that, more manageable?
I love the tamoxifen excuse. I have been making good use of it, especially with dh who is so supportive...
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Ok, the new format has me a little dis-com-boob-a-lated... (I'm easily confused).
Murph- you are a riot...I am almost at 1 year...what's my percentage???
larousse- leg cramps usually in the middle of the night...like when you get them in your calves. I never used to get them in my feet, and once in a while I get them so bad that my toes curl. SO painful... Have the slight vaginal discharge, but can live with that... No joint pain really... Hot flashes in the very beginning that were "flushes" and disappeared after a couple of months. I am encroaching my 1 year anniversary of Tamox...started in July of last year... 4 more years to go!!
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As far as SE's from the Tamox, is anyone else incredibly thirsty? It's almost as much as when I was on chemo. I'm also just having the flushes, not flashes, and some leg cramping. Also, the constipation I had on chemo has returned, only not to the degree it was then. I pulled out my basket of supplies from chemo to see what tricks I had in there.
I have to have a colonoscopy in two weeks at the insistence of the the radiologist and the onc. I guess with bc your risk is higher for colon cancer, too. I think I have a dr. appt. of some type almost every week the rest of the summer.
Is alcohol bothering anyone else? It seems to bring on more hot flashes and mess with my sleeping. It really makes me consider whether I want a glass of wine or a margarita with those se's. It seems everything has some string attached, soy, dairy, alcohol ...
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I just finished up with chemo and will be going you ladies in about a month or so.
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Over a year now on tamoxifen, no side effects except maybe some water retention. Sure, got chemo-induced into menopause, so hot flashes/night sweats very common. Onco is keeping me on tamoxifen as I was pre-menopausal before IDC 5/06, and I have bone issues with hyper-parathyroidism. (Looking into getting Zometa approved by insurance company). I think I've been very lucky with not having s/e's from tamox. Good Luck northern...and WOW, you had aLOT of nodes removed! (For chemo, I had ac/taxol-gemzar) I don't drink alcohol, as I have daily migraines...so don't know about the alcohol factor? ALL my best to all you lovely ladies! ~juli
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Juli- I have the water retention too!! I have a script for a diuretic that I have just been too lazy to pick up at the pharmacy...
Sue- haven't noticed anything unusual about being thirsty. I work for a packaged goods company and our food has a lot of salt in it, so I blame it on my job...not the tamox.
For the newcomers who are just starting, welcome aboard the train! I've lately been in the Nintendo Wii Guitar Hero Car....I am obsessed...and am now becoming obsessed with getting Rock Band so I can sing, play the drums, and play the bass guitar. I think I need some help....
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Murphmort,
Enjoy your 25th celebration and yes, may the SE discussed earlier kick in!!
Northern,
Congratulations on being done with chemo!!! That is one huge thing now behind you. We look forward to having you on the Tamox train.
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Murph - As the person who has "those" side effects, I hope you will experience them as well - Happy Anniversary.
Virginia - I can just imagine you rockin' out on the Wii. We have guitar hero here at work and every once in a while someone picks it up. we stink though. I shouldn't say "we" because I haven't tried it yet myself. Too many deadlines for playtime.
I've had my second accupuncture treatment and I have to say, so far, no real relief. I'm going to give it 4 or 5 treatments before I make judgement. I have an MRI of my liver in July as a follow up to scans and a liver biopsy I had in February, so I'll see my onc soon and we can discuss these nasty side effects then.
I am very thirsty too.
Welcome to all the newbies! Keep up the good fight ladies.
Barbie
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Dear Tamoxibodies, I've been on for 7 months now, and my se's are minimal. I get a kinda cycling series of hot flashes, maybe monthly?I also get more foot and calf cramps than before. I seem to sleep better, go figure. Little vag discharge. That's it. Overall, I feel splendid and hope you all will too.
Basha
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Layne, I heart you...
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Layne,
Hooray, on your upcoming one year bc dx anniversary!!
I just had my lipid profile done, and Tamoxifen isn't helping my cholesterol levels ONE bit... My total cholesterol was 217 and my HDL (the good one) is 58, which is pretty good. The funny thing is that whenever I DO watch my diet, and try to step up the exercise, my cholesterol is HIGHER, but last year, I was not doing anything, and my levels were LOWER... I think it doesn't matter what I do...
cholesterol challenged,
Harley
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Wow, you girls are sure chatty this morning, I did manage to read the whole novel that laynel57 just wrote despit being in a complete fog, the dog next door woke me up at 5 am. grrr... I can't wait to get my puppy and get revenge... So excited, we are getting a jack-russell at the end of August!
Well it is good to hear from the ones without too much SE. I don't have the hots yet but I am afraid that I am getting the vagi stuff... nice... with a little leg cramping at night, just enough to wake me and remind me about all of this. Can't you tell, I had a sucky sleep.
Murph, congrats, 25, that is a lot. I am getting up there with my hubby, 16 + 5 years before marriage, that is a lot of sleeping with the same guy! but I still love him...
Barbie, what is the acupuncture for? did some on my old dog for arthritis (Boulder CO ya know). It helped a little.
Hot and dry today... no outside exercise
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japanlynn: I also am having *new* hip bone pain (right side), just had a bone scan today, so we'll see what it shows, am on tamoxifen since Feb. 2007, chemo-induced menopause, so don't know what to blame on tamox, but so far (cross fingers), the hot flashes/night sweats YEPPER! And, now a tooth also broke off on the right side, so the bone scan will note that also. I also have parathyroid issues though, and that ALSO affects bone issues...are you getting your hip pain checked out? ALWAYS do when you've had cancer...my onco insists on that, as you NEVER know...once you have cancer, not to be worrisome (I do not worry, I adapt)...you have to get things checked out! I have NO doubts the scan will come back 'clean'....all my best~~juli
(Onco will have me on tamoxifen for probably full 5 years, as chemo-induced menopause, and it's better for bones than the AI's)
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japanlynn: I also am having *new* hip bone pain (right side), just had a bone scan today, so we'll see what it shows, am on tamoxifen since Feb. 2007, chemo-induced menopause, so don't know what to blame on tamox, but so far (cross fingers), the hot flashes/night sweats YEPPER! And, now a tooth also broke off on the right side, so the bone scan will note that also. I also have parathyroid issues though, and that ALSO affects bone issues...are you getting your hip pain checked out? ALWAYS do when you've had cancer...my onco insists on that, as you NEVER know...once you have cancer, not to be worrisome (I do not worry, I adapt)...you have to get things checked out! I have NO doubts the scan will come back 'clean'....all my best~~juli
(Onco will have me on tamoxifen for probably full 5 years, as chemo-induced menopause, and it's better for bones than the AI's)
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japanlynn: I also am having *new* hip bone pain (right side), just had a bone scan today, so we'll see what it shows, am on tamoxifen since Feb. 2007, chemo-induced menopause, so don't know what to blame on tamox, but so far (cross fingers), the hot flashes/night sweats YEPPER! And, now a tooth also broke off on the right side, so the bone scan will note that also. I also have parathyroid issues though, and that ALSO affects bone issues...are you getting your hip pain checked out? ALWAYS do when you've had cancer...my onco insists on that, as you NEVER know...once you have cancer, not to be worrisome (I do not worry, I adapt)...you have to get things checked out! I have NO doubts the scan will come back 'clean'....all my best~~juli
(Onco will have me on tamoxifen for probably full 5 years, as chemo-induced menopause, and it's better for bones than the AI's)
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japanlynn: I also am having *new* hip bone pain (right side), just had a bone scan today, so we'll see what it shows, am on tamoxifen since Feb. 2007, chemo-induced menopause, so don't know what to blame on tamox, but so far (cross fingers), the hot flashes/night sweats YEPPER! And, now a tooth also broke off on the right side, so the bone scan will note that also. I also have parathyroid issues though, and that ALSO affects bone issues...are you getting your hip pain checked out? ALWAYS do when you've had cancer...my onco insists on that, as you NEVER know...once you have cancer, not to be worrisome (I do not worry, I adapt)...you have to get things checked out! I have NO doubts the scan will come back 'clean'....all my best~~juli
(Onco will have me on tamoxifen for probably full 5 years, as chemo-induced menopause, and it's better for bones than the AI's)
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japanlynn: I also am having *new* hip bone pain (right side), just had a bone scan today, so we'll see what it shows, am on tamoxifen since Feb. 2007, chemo-induced menopause, so don't know what to blame on tamox, but so far (cross fingers), the hot flashes/night sweats YEPPER! And, now a tooth also broke off on the right side, so the bone scan will note that also. I also have parathyroid issues though, and that ALSO affects bone issues...are you getting your hip pain checked out? ALWAYS do when you've had cancer...my onco insists on that, as you NEVER know...once you have cancer, not to be worrisome (I do not worry, I adapt)...you have to get things checked out! I have NO doubts the scan will come back 'clean'....all my best~~juli
(Onco will have me on tamoxifen for probably full 5 years, as chemo-induced menopause, and it's better for bones than the AI's)
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(WOW, I apologize, something in my system posted my response a gazillion times!) ~juli
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I do enjoy reading everyone's thoughts. I wonder if we can blame the tomax for choc cravings. I have been on tomax since Jan 2008 and have so many SE I am scared of the future.
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Just wanted to say hi, I joined the train on Sunday right after finishing chemo this past Friday. I start radiation in a month. I've read lots of this board and just wanted to say I feel for all those who had to make the decision to take tamoxifen and thus not have anymore children. I'm 36 and was Dx in the 5th month of my pregnancy - I started chemo then had a beautiful baby boy right before a lumpectomy and lymph node removal. He was supposed to be the first child in our family and it was tough for me to buy off on 5 years of tamoxifen but I need to be around to raise our son. I'll look for you all in the chocolate car! Becki
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Hi, ladies--
Something miraculous to report--the skies are blue and there's been no rain for two days here in southern Japan! I was so sick of the endless rain...feeling pretty blah. Today, though, I got two bags of clothes together to take to the thrift store, plus some other stuff; and cleaned the corner of my balcony where I keep my gardening stuff, and threw out a bunch of junk from there. Now if I could just get in the mood to pack, since I leave for the states on Monday morning. All in good time...
Welcome to the new ladies...we'll have to add a few new cars, I'm afraid. These days I can be found in the salty junk car. I really need to find my way to the veggie car pronto.
Juli, my hip pain isn't really new...it was found on my post-diagnosis bone scan last fall; said it was arthritis. I think the tamox is just irritating it in some way, maybe. I don't know, but I'll tell my oncologist about it when I see him this summer.
My concern right now is my bad boob...swollen, hard around the nipple, and just not right. I went to my acupuncturist yesterday and he did a treatment on it, and will do another on Saturday. I'm wondering if it's related in some way to the cording I had back in the winter--like another case of that but not under my arm. Who knows...I'll get it checked out when I get to NY.
Wishing everyone a good day...hoping you're all sleeping as I write this. It's 5 p.m.--time for a glass of merlot. Take care...
Lynn
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Hi All, Welcome Tamoxinewcomers!
Layne, big WOOHOO for clean mammo! It's such a grand feeling.
Lynne, when I had foot pain it turned out to be plantar faciitis and arthritis. Never had it before Tamox. Even tho we're all virtual, it'll be fun having you back in the States.
My cancer show will be in another hospital in October! I'm thrilled.
Talk to y'all soon, Love, Basha
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Welcome Becky!! Wow, that is something that you were DX'd during pregnancy. That must have been sooooooooo scary. Did you start chemo WHILE you were pregnant or after the birth of the baby and the surgery? I was DX'd at 40 3/4 (and have no kids). EVERY doctor asked me if I wanted kids and I kind of put it out of my mind b/c I wasn't in a relationship. Anyhow, my surgeon said that if I DID want kids, she wanted me on the Tamox for at least 2 years minimum... That would have put my to 43 having my first kid...I don't think that I could do it now... Although, I could entertain the kid with the Wii....... HAHAHA
Lynn!! Great to hear from you!! You sound so motivated... I hired a landscaper, so I don't even remember the last time I even walked around my back yard. It's pretty bad.
My dad is acting kooky and is confused. It's been heartbreaking. I had a major meltdown yesterday...my brother was no help at all and I had to skip and important WORK meeting so he could go watch is 10 year old daughter play softball. I am so frustrated with him I was just sobbing on the phone to my sister...
Basha- that's so awesome that you are showing your lovely paintings in hospitals. They are so moving...it's nice that others can share and see your work!!
(((((((((Stefie))))))))) Hopefully your SE's mean the Tamox is working and they will die down... I've been on it for a year and had SE's in the beginning but have acclimated nicely after a year...
Harley- sent you an e- a while back...hope you are ok...think of you often...
Layne- your posts make my day...this i why I heart you... (I heart all of you girls....but that post just made me happy).
Juli- LOL with the gajillion posts...I've noticed a lag as well...could be the "new look" of the boards???
larousse, barbi, murph, cynthia, christianne, EVERYONE, hugs from gloomy rainy NJ!!
Virginia
ps I am STILL obsessed with Guitar Hero and have now completed 4 songs in "medium" Oh the little things in life that bring us simple minded pleasure...
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Virginia - I did start chemo while I was pregnant, 4 rounds of AC and stopped about a month before the birth. I was bald and my son had hair so we know he didn't get any of it! Then after birth and surgery I did 12 rounds of Taxol with Herceptin. We've decided to take the Tamoxifen for a minimum of two years, then re-evaluate how important it is to have another child (and if I even can have another one) or continue for the full 5 years. We can always look into alternatives as well, like adoption.
Everyone have a good day! Becki
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WOW Becki (with an i...sorry for mis-spelling before). That is AMAZING! I cannot believe that they can give you chemo while you are preggers... I can't even imagine how difficult your decisions have been given your circumstances... I had AC chemo too and felt really sick...I'm sure that must not have been easy pregnant on top of everything. Wow-wee... I didn't have to have the Taxol...but I too am Her2+ and will be finishing my Herceptin in 2 more treatments, one tomorrow and one in July... Almost there...
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Thank you for the uplifting stories. I needed them to balance the sad one.
Happy Anniversary to Murphmort!
Still no RX. My onc appt is on July 7.. guess I won't be leaving without that bottle of pills. Oh boy, can't wait.
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Hello ladies,
The Tamoxi-train picked me up and I'm on board. Sigh. Onc put me on Arimidex for 30 days - I didn't like it. Then Aromasin for 2 weeks - didn't work either. Now, Tamox for 30 days, we'll see what happens. I'll start tomorrow. I pray that I can handle this better.
Good night y'all.
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believer,
Welcome! Get a spot in either the bar car, the chocolate car, or the 'I gain weight without eating' car... that is the one I'm on now... GRRR...
I have heard that Tamoxifen is a little easier on us than the AI's, so here's hoping that you will tolerate it better!! I have been taking Tamox. for over 7 months now, and it isn't too bad, except for a period of depression that is finally getting better, the Hot Flashes seem to be easing up a bit, but the Insomnia is still going strong... I sleep for about 4 hours a night!
HugsHarley
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Thanks Harley! How are you feeling today?
Any other car choices? Waaaah. I don't like insomnia, nor hot flashes, don't even want to know what depression feels like, hate vaginal dryness, and please, no vision problems.
Lord, please bless this and every pill so it will heal us with minimal or no side effects. AMEN.
Have a woonderful, se-free weekend!!!!
Aurora
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I am not trying to scare anyone about taking Tamoxifen, but it isn't for everyone. I took Tamoxifen for 6 months after my chemo treatment. I had horrible side effects...weight gain, horrible hot flashes, and a skin rash that wouldn't go away. I was told it was acne and the doctor blew it off. Most people tolerate Tamoxifen well but I wasn't one of them. I am 37 and was diagnosed with hormone positive Stage II breast cancer at 35. After 6 months of arguing about the side effects with my oncologist and him not taking me off of it, I changed oncologists. First I tried Lupron with Arimidex. I was better than the tamoxifen, but still not right. My oncologist tried a different combination. Now I take a Lupron shot once a month and take Femara daily to suppress my hormones. It seems to be working very well. You just have to find the medication combination that is right for you. Sometimes we are the square peg that the doctors are trying to fit into a round hole. Standard of Care is great but it doesn't always work for everyone, no matter what kind of medication you are on. I am happy with my new meds. I have very few hot flashes now. I am working on losing the weight I gained. And my allergic-reaction rash that was diagnosed as acne magically disappeared when I stopped the Tamoxifen. Just know that there are other options out there if your body doesn't tolerate the Tamoxifen well. You have to be your own best advocate.
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