Bottle 'o Tamoxifen
Dear All, (and Layne are you there?)
Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha
Edited by Mods to add content from the main Breastcancer.org site's section on Tamoxifen in Pill Form (Brand Name: Nolvadex): Benefits, Side Effects and More
Comments
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Save me a seat on this tamoxifen train !! Glad to be sharing with all of you. I've been on it for 8 months. I take it at nite and haven't been too bothered by hot flashes. I too read the pamphlet that said weight loss (I think it's a misprint LOL) Can side effects start at any time??because recently I know I've gained some weight without eating differently and it's frustrating!! My other question is about muscle aches because also only recently have I been getting some leg and back pains. I always thought if you got side effects they happened right away now I think I attribute everything to the meds.
How do you know when it's a true side effeect?
Sometimes it's a good excuse to my family for bad moods and crankiness too. Must be the meds !!
Michele
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What an awesome group we have on our T train. I'm so glad we'll have each other to lean on and learn from.
Harley - sorry to hear about the RLS and insomnia with the higher Effexor dose. I'm glad you can handle the lower dose. I don't know what I would do if the Ativan didn't help me sleep at night. My children are not very sympathetic when I don't want to get out of bed in the morning. lol
Layne - loved your ovulating story. Congrats on finishing rads! How is your skin doing?
MOTC - how long did the bleeding last? I really don't want to have a period that lasts forever, not that I have any choice in the matter. I guess anything is possible with Tamoxifen.
Lisa - I spent my childhood in Youngstown, Ohio. My dad was born and raised there. I'm glad your hot flashes come in handy with the weather. It would be nice if we could at least control when we have a hot flash, then we'd never be cold again. You're running???!!! Wow, I feel tired just thinking about running. I guess I should push myself more.
Basha - your cupcakes sound so good! I told a friend about them and she said she'd have to put a peanut butter cup on top. lol Sorry, probably tmi.
lisettemac - welcome to our group. That's awful about the nausea, but I'm glad it eventually went away. I so did not want to have that particular side effect - it was one of the worst parts of being pregnant for me. And, I don't eat when I'm nauseous, so not eating for a couple of months would be bad. lol
Is anyone's white count still low? Mine was 2.3 a couple of weeks ago and I still have a mouth sore. I wonder how long before my body starts to recover from chemo/rads. It's funny, but my rad onc said my low wt count is from chemo, and my med onc says it's from rads. I say it's from both of them, thank you very much.
Have a good evening, all!
Cynthia
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Hi, ladies--
Is there room in the club car for me? I took my first dose of T on Nov. 3. So far, I've had more "power surges" than true hot flashes...and almost no night sweats (knock wood). My arthritic hip has been bothering me the last couple of days after a long period of little to no pain...could it be an SE? It's tempting to blame every ache, pain, mood swing, headache, hunger pang, hangnail, etc., etc. on tamoxifen, but...
I have a hankering for a cupcake with a raspberry nipple on top...another SE?!
Lynn
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Welcome Lynn! Always room! I too wonder about arthritic pain with the Tamox. I have had knee problems for awhile, but they seem to be worse with the tamox. I spoke to my oc about my knee..she didnt seem to think it was related. I would have to say my hunger is much less since on this...of course it's not causing me to lose weight! Darn!
Cynthia...funny you mention Youngstown...my mother was born and raised there! I too visited my Baba (Grandmother) there all the time. In fact, I still go there often, my mother has passed, but all of ther siblings still live in that area. Small world! Yes..I am running...I had been walking 3 miles, 3-4 times a week during all this..well..not on my tx weeks!! So now that I feel better..I got back into running. It feels good!
I am one of 7 children...I have a sister in California and Arizona..my sisters were smart..the left the cold!! haha. Well...I have nice places to go for vacation!
Harley...I hope you get some help with the rls. and your dosage.
Michelle...I too get allot of muscle pains. I am not sure that it is the meds...because I seem to have it allot...and did before starting this 5 wks ago. Hard to say??
Well ladies..enjoy your day...I am at work...so I will be checking back to see how you all are doing!
Are we getting our halls decked for Christmas??
xoxo
Lisa
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Harley---the risk of endometrial cancer from tamoxifen is very low--reportedly less than 1%-- and it does NOT cause ovarian cancer. I've been taking tamox for over 4 years--initially with very mild hot flashes. I did have a total hysterectomy 2.5 years ago (not by choice--had large ovarian cysts which ruputred), so now I have increased SEs but they are now due to the loss of my ovaries rather than the tamox itself. But from personal experience, I would recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries for any changes. I haven't gained any significant weight, but have noticed increased "belly fat" and can't seem to lose an ounce despite diet and exercise. Weight loss on tamox?--what's that???? -
awb..haha...no kidding on the weight loss. I will lose my belly fat when I have my surgery (tram flap) this winter. Bad way to have to lose it. I don't have much...but more than I ever did! I started sit ups..Ill see if that helps!
Good luck to all!
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my girls---I have a lot of achiness/stiffness too--particularly my left hip recently--my oncologist doesn't feel it is tamoxifen related, but my gyn and pcp feels it is. With me, I think it is a combination of no estrogen from lack of ovaries (estrogen lubricates your joints), tamox, and just getting older/menopausal (50).
Anne
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awb,
Thanks for the encouraging info. about Tamoxifen and these other types of cancers... Even if I know in my head that the risk is very low, I still fear this se SO VERY MUCH!
Just like with the chemo... I had a tremendous fear of developing leukemia from the chemo txs...
I will probably get the u/s yearly, since I also have fibroid tumors, and I worry that they will grow, and I may have trouble with bleeding from that... scary to me!
So sorry to hear about your hyst. for ovarian cysts!
I am postmenopausal due to a condition called Premature Ovarian Failure, and the drs think it is auto immune related. So, I really don't want to think about having bleeding again.
Sounds as if you are just about finished with the Tamoxifen! I am glad that you didn't have too many se's from it. Will you be taking an AI afterwards?
Best Wishes,
Harley
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Harley--I have one more year to go on the tamox. My oncologist originally said maybe arimidex afterwards, but now he's not sure he will be putting me on anything. I have LCIS and the AIs haven't been studied much with that yet enough to give definitive results. He says we will keep revisiting that subject over time. At one point he said no to Evista as well, but my pcp thinks it's likely he may put me on that because of all the new studies coming out. I don't really like the idea of taking another medication for another 5 years, but I don't like the idea of taking nothing preventatively either. A least I would get some protection from osteoporosis from Evista.
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AWB,
I wanted to take Evista in addition to an AI, but I guess that hasn't been tested yet...
Good Luck!
Harley
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Hi, sorry I am late joining you all...I just started with the Tamoxifen therapy Nov 26th and my literature said "weight loss" too...oh well, the thought of not watching the diet was nice for a short time!!!!
Harley, I haven't heard from you in awhile as I have been on the rad thread for the most part! I hope yo are doing well and that you are happy with your surgery results.
I too am getting a small amt of hair back...weird thing though is that 4 weeks after chemo I am missing eyelashes on the bottom of one eye and about half on the other! I wonder why the delay...how long does it take to grow lashes back?
Barb -
Barb,
My eyelashes are still very short and VERY sparse! When they occasionally fall out, they are very short, and I often wonder if I will ever get full, long eyelashes again. Probably not, since they were short and sparse from the thyroid condition I have... oh, well!
My hair is VERY SHORT, but it seems longer and thicker in the middle, where I would sport a mohawk, if I had had the nerve to cut that style when I lost my hair! lol
I am doing great! It's 7 weeks post chemo, and 3 weeks post surgery. The reconstruction is starting to look good! At first, they didn't look AT ALL like breasts, just two lumps! Now, though they are starting to look like breasts. My dh told me that the ps told him that they will be 'molded' into breasts by me wearing a bra almost all the time for about a month or two. I am just now finding a way to sleep on my side, because I just can not sleep on my back!
I guess you haven't heard much from me, since I didn't get rads. I guess we will hear more from each other now that we are both taking the Tamoxifen train! I started Tamoxifen on Nov 18th.
Good Luck!
Harley
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Good morning Tamox-ladies!
I've been on the Tamoxifen-train since 5 November, and initially there were no SE's. I almost thought that I might not be metabolizing it, and would have to stop (I can dream, can't I?).
Now the "power-surges", as Lynn calls them, have started, but not too hectic. What really gets up my nose though, are those night sweats. I really, really love my sleep, and never had a problem. I could even sleep standing up! But now, I wake up drenced, and bothered. Anyone with some advice on how to curb it?
Another thing, I've been having some lower-abdominal pain. I don't know if I'm just blaming everything on the Tamoxifen, or if I should be worried about it. I'm seeing my onc. on 14 Dec. so will have to mention it to her.
And weight-loss on Tamox.? I can do with some of that...
Have a great weekend ladies!
Janine
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Hi All,
I started taking tamoxifen two weeks ago. My oncologist told me that pre-menopausal women usually have fewer side-effects (I'm 33). I have joint pain, especially in my knees. No hot flashes yet, hooray!
Everyone I have talked to warns of weight gain, especially around the belly. I already am overweight and tend to gain in my abdomen, so I'm not excited about this. Yet here I am sitting on the couch when I could be exercising ;-)
Anyone doing tamoxifen without having gone through chemo? It's hard to tell which side effects people might be having chemo drugs vs tamoxifen.
Karen -
Just a short note to say Hello again. I'm sitting here with my bottle o' tamox... I will begin tomorrow morning, December 1. I'm okay with having hot flashes but don't want hair thinning or weight gain. Of course, I'll also pass on that risk of blood clots and strokes. Can I pick and choose my side effects?
Have a good one.
Debbie
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Good morning from southern Japan, ladies--
I've been reading on these boards about not taking prozac and tamox together...I've been on prozac for about 4 years, first for mild depression and now to help w/ menopause symptoms. During BC treatment, I saw a million doctors and filled out a million health surveys...can't honestly remember whether I told my onc. about the prozac. I stopped taking it a couple of days ago and faxed a letter to my onc. for advice on whether to make it a permanent holiday. We will have a fax and/or phone relationship while I'm here, and I'll see him next summer.
I know a lot of people are on effexor along w/ tamox.; we'll see what he says. Maybe I could try going without an antidepressant--the idea appeals to me, but if my period decides to make another (increasingly rare) appearance, I'm in danger of losing all my friends due to mood swing scariness. Stay tuned...we'll see.
Question: How often do you stage I and II ladies see your onc.? Just curious since my situation is different.
Enjoy your Friday evening...I'll be doing laundry and cleaning house on Saturday while you sleep. Take care...
Lynn
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txgirl - good job on the weight loss though!! I know it's slow, but at least your making headway, which is more than I can say.
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Layne - I'm doing good sleep wise. I'm back on the Ativan, but half a tablet is usually enough to get me to sleep. I've started taking the Toprol earlier in the evening because it was causing me extreme acid reflux (guess that's why they say to take it with food). I had an echocardiogram today, but I don't see my dr until the 20th so I'll have to wait to hear what the results are.
I hope you don't have an issue with the coumadin. My girlfriend who is on coumadin says she bruises so easily because of it.
I'm sure you'd rather have been sleeping, but Skyline Drive in the morning sounds like a beautiful experience. My husband and I drove from CA to MA via I-40, and I wanted to do the Skyline Drive when we got to VA but by then my husband just wanted to hurry to MA. We both regret that we didn't do it. If you have to be driving around in the morning, it's wonderful that you have such a beautiful park near by.
Karen - I have joint pain, but I had it before I started on the Tamoxifen so you're right about it being hard to tell what's from chemo and what's from Tamoxifen. I haven't gained weight, but I do have belly fat now. It developed when I was on Taxotere, I think. I'm assuming it's from chemopause and the lack of estrogen.
Debbie - oh, to be able to choose our side effects. lol I don't have any sign of hair thinning so I hope it's not a late side effect. My hair isn't thick to begin with.
Lynn - my onc considers me advanced Stage 2 and I see him every 3 months.
txgrl01 - I'm sorry to hear about your endometrial issues. Please let us know what you find out.
Layne & Debbie - welcome aboard the T Train tomorrow! Wish we could meet for some chocolate and cocktails in the lounge car.
Cynthia
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Hi to my tamox friends!
Harley...be patient with the eyelash and eyebrow return. I too wondered if they would ever come back. I had my last tx on 8/29 and they still continued to fall out after that. But now 3 months post tx..and they are back!! My eyelashes still have a little longer to grow..but they are full, just like before!! So happy...so yours will be too!
Layne..Enjoy your visit with your mom! Where in Ohio? I am in NE OH. Thanks for the welcome to the tamoxi-train!
txgirl...Wow...good for you! 15lbs in 3 mos! I think those are great results! That is the healthy way to lose..slowly! Your calorie intake is really low...maybe that is what I need to do! Like you..I too gained some weight prior to dx...wonder if it had anything to do with the cancer being there?
Cynthia...I also got my belly fat on taxotere. Hardly had any before that tx. Darn!!
Have a great day ladies...it's Saturday...but I am working
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Hi everyone,
I started Tamoxifen about 2 weeks ago. I had trouble sleeping for a few days and very little appetite but it seems to have passed. I do have aches in my legs though, has anyone else experienced this? I finished chemo 5 weeks ago and am not sure if the aches are from Taxol or Tamox or something else.
Does anyone know how long the effects of chemo linger ... ?
Jackie -
Hello Ladies , I'd like to join the tamox train! I started in Sept. I have had alot of hot flashes. To the point of my head is dripping wet! Sometimes hourly. Not fun. Especially at work. I just started effexor two days ago. My onc wanted to see if the hotflashes would stop on their own , but they didn't. So I sure hope it helps. He also mention getting a transvaginal ultrasound done. I never heard of this. Doesn't sound to comfortable to me. Anyone that has had one and would like to share , I'd appreciate it.
Hope you're all having a great weekend. Melody
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Hey Layne,
I just swallowed my first Tamoxifen. Yum yum. How was yours?
Basha -
Hey Layne,
I just swallowed my first Tamoxifen. Yum yum. How was yours?
Basha -
Hi honeygirl. I have had 2 transvaginal ultrasounds.
The first wasn't so bad because they didn't give me the right instructions, and I drank my 2 liters of water about 15 minutes before the procedure.
For the second one, see http://community.breastcancer.org/topic/62/conversation/683827
I'd recommend cheating. (naughty me.) -
Hey Melody...welcome to the train ride!! I had several hot flashes last night!! Always seem to be worse when I am in bed!
Have a great day...talk with you ladies later!
awb...how are you doing?
lisa
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Is there room for one more??I started my tamoxifen 5 days ago. I had been having bad hot flashes since my second round of chemo and I haven't noticed any difference, but I don't know how long it takes for the side effects to start. I am 16 days past my bilateral mastectomy. I am really hoping to get my drains pulled tomorrow morning! I will be glad to have the support of all of you gals as we go through the medical ups and downs (hopefully more ups!!)
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Cynthia,
Did I read one of your posts that mentioned that you were having some achiness from the Tamoxifen?
I have started feeling achy, and am just wondering if it is from the Tamoxifen, or just usual aches and pains from getting older, and maybe because I have started to walk, and even run again. I like to walk fast... but I want to start running soon, even though I have never been able to run continuously for any length of time. Except for the 5 K I ran 2 years ago with my dh.I hope you are feeling great!
Harley -
Hello from England!!
Been on Tamoxifen since about May (memory shot since starting it!!), so I'll be joining you on that train ride if that's ok?
Suffer from aching joints (Ibuprofen helps me - high doses though) and I've put on weight, but possibly cos I can't move around quite as well as I could. Feel like an 80 yr old in a 46 yr old's body, especially in the morning and last evening!!
I've started having hot flashes (we call them 'hot flushes' in England -- whatever, they're nasty!!). I'm forever ripping my top off around the house and then can't find it again when I cool off! Luckily I show a bit more restraint when I'm out and about :-)
Nice to meet up with you all.
love,
Jacki x
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I started tamoxifen in October. I didn't have chemo(refused it), so any SE I develop will be from the tamoxifen. So far, no SE. NONE. I do also take prozac and neurontin (prozac for years, neurontin for LE pain) both of which have been used for tamox SE, so maybe any SE are just being masked. But I'm really, really scared the tamox isn't doing anything for me. I'm even more scared of changing from prozac to another antidepressant since I went through so many to find one that works. i've already decided that if I have to chose between treating the bc and treating the depression, I'll treat the depression. I see my onc early Jan and will find out about CYP2D6 and/or endoxifen level testing. To answer someone's question, the tumor removed was classified stage 2, and I will be seeing the onc every 3 months.
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