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Topic: Bottle 'o Tamoxifen

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Nov 26, 2007 12:02PM - edited Nov 15, 2017 10:59AM by Moderators

ashaby wrote:

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

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Jan 20, 2020 09:48AM Lomlin wrote:

I don't find that hot flashes are a good sign, a good sign of what? Decreased estrogen, I still got breast cancer anyway. Here is a quote I found online about hot flashes:

'The exact cause of hot flashes is unknown. They may be caused by decreased estrogen or even a change in other hormone levels. During a hot flash, the part of your brain that controls body temperature is affected.'

Runor, yes the middle is growing on me as well, hate it. I am so obsessed with my weight, that what the scale says determines what I eat and how hard I walk, not that it flattens the gut any, but just minimally, and I will take that!

So my hair has been falling out a lot for a good year now. I need advise, I really don't want a wig, I hate anything that touches my head, I rarely wear hats. When I have gone to the salon, I get headaches when they wash my hair, especially putting pressure on the temples. I have tried the color powder stuff, I'm sure you all know what I am talking about, and quit, it is too much work and obvious that you do it. I even tried batiste dry shampoo for brunettes, and really didn't like how it turned out. I am losing hair evenly though. Any thoughts, anyone wearing a wig? And where did you go to get one. Is it fake hair or did you go real hair? I would be afraid of a clip, since I don't have much I would be concerned it would fall out.TIA!!

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Jan 21, 2020 12:02PM rljes wrote:

Hi All -Worry The Pooh - hate to be the bearer of bad news - but I never started Tamoxifen because I have SEVERE Hot Flashes - debilitating to the point I have panic attacks. I have them all day long, along with night sweats that require changing bedding. I have a Dr appt to see about a nerve block in a few weeks called (SGB) (Google it under Mayo clinic). If the article is true that Hot Flashes are a sign that Hormone Therapy is working - then I'm good to go without taking Tamoxifen.


Finished Chemo March 2018, No reconstruction "Going Flat" Dx 6/26/2017, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+ Dx 8/22/2017, 1/7 nodes, HER2+ Surgery 8/22/2017 Mastectomy: Left, Right Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy
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Jan 28, 2020 04:45PM runor wrote:

Time to whine (which is different than time for wine). This tamoxifen..I really do think it's responsible for some miseries that I am experiencing lately. Miseries that have crept up slowly, so you don't notice them. But then they reach a point where ignoring them isn't possible. Like this awkward, clunky, painful body thing. I used to get out of bed. Just...get out of bed. Now? Now I peel open an eye and judge how far away the edge of the bed is. Can I slither out? Do I have to make a roll to get closer? I move a leg slowly and with caution lest I trigger  some spastic and unwarranted leg cramp that flings me, staggering and screaming, onto the floor. But getting out of bed now is pain in the shoulders, pain in the elbow joints, pain in the back. It's like I'm a zombie rising from the grave. I should have been a dancer in the Micheal Jackson Thriller video, all jerky and limbs falling off. Sure, I've gained weight (mostly this grotesque Jaba The Hut gut) but this weight gain cannot account for the inability to simply rise from my bed like I did two years ago. I cannot believe that my physical abilities have been so eroded by age in the last two years.

No. It's not age. It's tamoxifen. And lately my inability to function is REALLY picking my ass. 

And then someone says to me, "Why don't you go off it and replace it with medical marijuana?" Because, as much as being constantly stoned might be a better mental place to be, marijuana does nothing, NOTHING, to help keep me alive! Marijuana does nothing to block the estrogen that feeds my 100% estrogen and 100% progesterone fueled cancer. Marijuana might make it so I don't care if I get mets. But right now, I stagger through this damn drug because it is my best bet to make it 5 years without a recurrence. Take marijuana. For fuck sake. (feeling really grumpy)

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 29, 2020 07:21PM molliefish wrote:

Runor I feel your frustration. My focus is my hair loss. I've lost 20 lbs after much effort and concentration but if I keep shedding like this I'm gonna be bald by the fall. I'm seriously considering throwing in the towel while I still have hair on my head. My eye lashes and brows never came back so I've become adept at drawing in the brows (so much so I got a compliment the other day) but in can't pencil in the hair in the head. What a shite situation to be in. We are at risk and suffer the consequences or feel like better but at 'less risk'. Grrrrr
Dx 5/24/2015, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 6/8/2015 Lumpectomy: Left Chemotherapy 8/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/9/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Jan 30, 2020 11:43AM runor wrote:

Molliefish, this hair thing! My hair has become a household hazard. It's in all our food. I try to stir and cook at arm's length otherwise I'm dropping hair in the soup. I announce at the start of every meal that if someone finds a hair, just pick it out, it's mine, I'm clean.  It's on all my clothes. All over my sheets. Fills the lint trap in the dryer. The headrests in all the trucks are coated in my hair. The plumbing has taken a serious hit. I make little pipe cleaner curlicues to drop over the drains to collect the hair. Otherwise a wad of hair the size of a goat builds up in the drain until the drain doesn't drain anymore. The bathroom floor...I gave up trying to keep it clean. Hair is EVERYWHERE. And then there's the whole trying to look decent while you have male pattern baldness going on, a forehead that gets bigger and bigger.

I will be really mad, REALLY MAD, if when I finally go off this damn drug, having stuck it out for 5 years, and get a recurrence in year six. Just my luck. There is no good choice here it seems. At least not an easy one. And I have all this on HALF the prescribed dose. Blah. 

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 30, 2020 12:39PM Veeder14 wrote:

Anyone out there finished 5 years/10 years on Tamoxifen? Did your hair stop thinning/grow back? Just wondering if this side effect reverses itself after treatment.

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Jan 30, 2020 08:26PM molliefish wrote:

Runor and I sure as heck hope so. Oy vAy with the hair thing.! I have 11 months to go if I Stand for it that long but I can't see it. The benefit with all my other tx wasn't that great. I am of course like every one else. 'What if'? What if I never checked on that blessed lump in the first place.... I feel like I'm living on borrowed time. But then again, aren't we all???? Blessings to all....xoxox
Dx 5/24/2015, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 6/8/2015 Lumpectomy: Left Chemotherapy 8/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/9/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Jan 30, 2020 09:06PM PrincessButtercup wrote:

Just confirmed that I am done with tamoxifen after 18 months. I became post-menopausal during tamoxifen treatment, but then had uterine bleeding. A biopsy said no cancer, but am now discussing a hysterectomy and moving to an AI. Onward!

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole-breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 31, 2020 08:07AM Lomlin wrote:

Wow runor you and I sound a lot alike. There are days that are good and then out of no where, BAM, you're down. Unexplained pain out of no where, oh wait, no it is the tamoxifen. I am on year two on the T, can't wait to see what it'll be like later down the road. I try to stay upbeat, but some days it just doesn't work out that way. I'm also a bit antsy/anxious. Xanax to the rescue!! Plus I have dogs, they help. :)

Hair everywhere including inside my shirts and pants. I wear mine long, I refuse to go short and refuse a wig. My head is so sensitive than ANYTHING that comes in contact with it, hurts. I get headaches wearing hats, so I imagine I would get headaches if I wore a wig. I wear mine hair back and pin it with 2 bobby pins and strategically place each hair strand so you don't see my scalp. I used to color my scalp using those color sprays and just gave up, too much work. I just decided to own the thinness. I had at one time about 25 bottles of shampoo trying to figure out which was good. I just use Aveeno. Tried Nioxin and made my head even more sensitive, I couldn't put the bobby pins in at all. Nothing I have tried reduced the amount of hair loss, so now owning that too. One thing, my hair is not totally grey, I still have brown hair at 65, yay.

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Jan 31, 2020 02:02PM Beaverntx wrote:

Oh, the ups and downs of Tamoxifen!! I'm starting a month off of it in the hope I can better distinguish what is Tamoxifen and what is aging. Lately it has been the brain fog, lassitude, fatigue combination that has been really getting me down.

Have not been losing as much hair since taking Biotin and using a Biotin shampoo. Lomlin, I also decided to just own my balding spots, particularly after looking around in a restaurant one day and noticing several people of all ages with about as much thinning as I have. Had hoped Biotin might help my nails but no go on that so far.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 2, 2020 06:33AM Lomlin wrote:

I did try biotin too, both the pills and the shampoo, they didn't work, like you, am owning it. I, too, looked around in the grocery store and the athletic club and see the same.

I get heavily fatigued when I excert myself too much, for instance, shoveling snow. The next day I felt like a truck ran over me. I would like to stop Tamoxifen to see what is the SE from the pill and aging. I think it is both, the Tamoxifen just puts us in advance mode for aging. I had brain fog as well, but that comes and goes, mostly goes. I force myself to stay focused and let this pill take over me.

And boy do I drink a lot of water!! This pill is making me dehydrated! Another SE. My oconoligist says to drink 64 ounces a day.

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Feb 2, 2020 06:47PM 2FUN wrote:

I’m starting tamoxifen...is there a best/better time of day to start? Any immediate side effects like dizziness etc I should be concerned about/pay attention to

Hormonal Therapy Surgery
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Feb 3, 2020 03:00PM lala1 wrote:

2FUN---I found mornings best because I took it with my other vitamins and that way I wouldn't forget. The most important thing I discovered is that Tamoxifen can be very dehydrating so drink lots of water....and I do mean lots! I spent about a year dealing with nausea and dizziness till someone pointed out how much it can dehydrate you. Once i upped my water those SEs went away. Otherwise you can just see if you get any other SEs and come back for advice. Hope you have none!!

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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Feb 3, 2020 09:04PM runor wrote:

I take mine at night, not because it's better, but that's when I take my blood pressure pill so I group all my pills, so I don't forget. Because I'd forget my own head if it wasn't screwed on!   One of the first side effects I noticed was whacked out dreams. I have no idea if they were anxiety related or tamoxifen related. But I'd wake up from some utterly bizarre and disturbing dream and think, what the hell was that ?!  Luckily that passed after a few weeks. Also, yes to the water. Constipation was and continues to be a SE I struggle with. Water should help some in this department. 

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 4, 2020 11:08AM cassiecanada wrote:

Post menopausal women have an easier time i understand ( i cant take letrozole)- I started 20mg in june 2019 at nite- no symptoms yet- touch wood

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Feb 5, 2020 03:45AM - edited Feb 5, 2020 03:46AM by BCat34

Just refilled my Tamoxifen prescription (Feb. 2020) and was given 2x10mg instead of 1x20mg daily, because of the Tamoxifen shortage, which appears to be over everywhere but Ontario.

Only a few days into the switch, just like when I went from the Calgary version of Novaldex D to the very bitter tasting version I get here from Shoppers, I've got a number side-effects back from the minor differences between drugs.

Just reached my 7th year on Tamoxifen, and just gotta keep going and pushing through this. Can't wait for the weekend so I can get the extra rest to manage better.

Dx 6/30/2012, IDC, Left, 6cm+, Stage IIB, Grade 3, ER+/PR-, HER2- Chemotherapy 7/14/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 1/23/2013 Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 5, 2020 11:52PM 2FUN wrote:

thanks all for your answers. I’ve had all the side effects from all the AIs,so here’s hoping there are none with tamoxifen

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Feb 6, 2020 05:15AM ChaClarey wrote:

Hello Bcat34,

I’m also in Ottawa Ontario and I had opposite issue. Pharmacy said they could not get 10mg dose. So I’ve had to cut 20mg pills in half. I originally started in Dec 2019 on 20mg and had severe hip pain and 12-13 hot flashes a day after only being on for 2 weeks. I had some additional tests to rule out metastatic disease in bones and after all clear my oncologist said let’s start with 10 and then see what happens in six weeks. So far on 10mg(2 weeks) only very minor hot flashes a da if any. I still have hip pain but oncologist said Not tamoxifen as it didn’t go away the month I was off it.

Oncotype 16 Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 10/22/2019 Lymph node removal: Sentinel Radiation Therapy 12/14/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/22/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 6, 2020 09:20AM walkingmydestiny wrote:

Hello runor, I agree with you! I know I will only take 10mg of the tamoxifen. I have done a lot of research like you. The status quo is 20mg.

It seems the hole process has been pretty much status quo.........

I do not like the fact that they stick us all on the same 20mg from an OLD study. I would not be able to tolerate ANY side affects other than hot flashes and since I already have hot flashes that will be nothing new for me.

I go in for my Lumpectomy on monday the 10th and hopefully I will get clear margins and move on to my 3 weeks radiation and on to my 10mg of tamoxifen. I am so ready to move on.

I have found this site so helpful, its my support group. thanks ladies!

Dx 1/16/2020, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/10/2020 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 5/10/2020 Whole-breast: Breast Radiation Therapy
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Feb 6, 2020 08:56PM runor wrote:

Walkingmydestiny, I don't think they give us 20mg based on an old study, I think they give it to us based on NO study. As best as I was able to determine, and full disclosure here, I am no scientist or researcher, 20 mg was arrived at as the amount that the most women would continue to take, the dose they would tolerate and not quit. To this very day non-compliance (fancy word for when women say, to hell with this bullshit) continues to be a big problem with tamoxifen. It has a bad reputation. Rightly so. Yes it is the best chance some of us have, those of us for whom chemo would not do a lick of good. But despite many months of searching for the evidence that trials were done at differing doses of tamoxifen, I came up empty handed. They know at 80 and 60 and 40 mg, women quit. Women felt like hell continuously and said, screw this. 20mg seemed to keep the most followers, unhappily. So that's the number they settled on. Not the BEST dose, but the most tolerable dose they had tried so far. 

You would think that someone, the makers of tamoxifen, researchers, would be following women who self prescribe 10 mg (or whatever) to collect what data they can, even if it's anecdotal. But there is no money in knowing more about tamoxifen. Thus no one cares to know or wants to know. It just isn't profitable to know.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 7, 2020 12:17AM Skwashie wrote:

there is a worldwide shortage due to manufacturing disruptions as well as increased demand. Some limits have been placed on how much you can take out at any one time. I had to travel 160km today to get a repeat prescription

Dx 6/12/2018, DCIS/IDC, Left, 1cm, Stage IB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 7/1/2018 Lumpectomy: Left Radiation Therapy 8/13/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/25/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 7, 2020 12:30AM Skwashie wrote:

It's called female pattern baldness when women’s hair thins as the hair falling out is a result of lowered estrogen (testosterone causes this in men). I was really worried at the start when mine started falling out and then, when I read up about it I chilled a bit as the hair loss would have been on the cards with or without BC and tamoxifen. My mum's hair when she went through menopause thinned a lot. And a number of ladies at work younger than me complain about thinning hair and they are not on any treatment. It gives me a bit of relief as I then, feel like I'm experiencing something to be expected.

I have been using an infrared lamp and massager on the intense leg cramping (the smallest movement can set it off like one of the ladies in this thread). It helps a bit especially if I'm struggling to fall asleep. The twitching is still there but it does ease it. A standing desk at work has also helped. Getting out of bed is slow but you know it's good to be able to get out of bed even if it's slow. And the truth is that most middle aged people, and older, are mostly all in pain. Our bones age like most things. Muscles don't age so, maintaining those can be a big motivator. And it does help with pain management as it can reduce inflammation. But I get it that some days it just builds up on us and we have a rough time psycho-emotionally. I had one of those episodes just recently. I went easy on myself and had to say "no" to a few request for things that I knew would overwhelm me. And I had to ride out the low feelings ... I hope all of us find effective pain management strategies to give us some relief.

I know it's unorthodox but I quite like the hot flashes ... but at the same time mine are mild and at 52 I was due them anyhow. I was quite relieved to get them as I had a sign my estrogen was decreasing and that's what I want in my circumstance. My mum and sister both had a terrible time with hot flashes (my sister used to have up to 50 a day) and they both had intense sweats. Neither of them have had breast cancer. So, again with or without tamoxifen women can have a terrible time with hot flashes and myriad other menopausal symptoms.

With or without tamoxifen treatment we are experiencing a uniquely female phenomenon. I do feel for the chaps with breast cancer getting hot flashes on tamoxifen that must be quite confronting for them. And yet in the same vein my dad used to get hot flashes after his prostate was removed from prostate cancer ... the body ... such a wonderful, curious, complex set of systems ...


And of course young women ... it’s really unfair on them getting menopausal symptoms and I know of ladies who get two menopause(s) once during BC treatment, when they are young and then, again when it’s time for menopause.

Good luck everyone and I hope your choices bring you peace of mind.


Dx 6/12/2018, DCIS/IDC, Left, 1cm, Stage IB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 7/1/2018 Lumpectomy: Left Radiation Therapy 8/13/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/25/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2020 09:20PM Artista928 wrote:

Anyone on T get involuntary random twiches? Seems to be becoming more frequent. Sometimes it actually moves that body part like a little jerk.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Feb 12, 2020 06:33AM PurpleCat wrote:

Yes, I do. I've always been a little twitchy but it seems to have gotten worse since starting T. Leg cramps too. I figure it's all sort of the same issue.

Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Surgery Prophylactic ovary removal Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 12, 2020 11:38AM Artista928 wrote:

no cramps other than sometimes uterine, but everwhere else, yup. Sometimes my limb moves!

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Feb 16, 2020 11:04PM Paloma1211 wrote:

Hey Ladies! I’ll be starting day one (of 5000 years) of Tamoxifen. I’m also still getting Kadcyla infusions every 3 weeks, till end of July. Feeling nervous. Sounds like I should:

- take it at night

- increase my water intake

- increase my exercise

Any other advice for a Tamoxifen newb? Any and all advice and experiences shared are welcome and appreciated!

Dx 2/1/2019, IDC, Right, 3cm, Stage IIB, ER+/PR+, HER2+ Chemotherapy 2/25/2019 Chemotherapy 2/25/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/25/2019 Perjeta (pertuzumab) Surgery 7/2/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 8/5/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/16/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Feb 17, 2020 03:13AM FTM wrote:

Hi Paloma1211

I too am starting tamoxifen this week and feeling rather apprehensive about it. Let me know how it goes..

Dx 6/10/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Surgery 8/1/2019 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 9/6/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/6/2019 Herceptin (trastuzumab) Hormonal Therapy 2/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 17, 2020 08:19AM TrmTab wrote:

I eased into it. 1/2 pill every other day, then 1/2 pill every day, then full pill MWF half pill other days...each step for 1-2 weeks...this helped with the side effects for me. I take it in the morning. TT

Dx 9/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 12/21/2015 Lumpectomy: Left Surgery 1/11/2016 Lumpectomy: Left Hormonal Therapy 2/5/2016 Arimidex (anastrozole) Surgery 6/3/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 1/1/2017 Arimidex (anastrozole) Surgery 9/8/2017 Reconstruction (left): Silicone implant Surgery 12/17/2018 Reconstruction (left): Silicone implant Hormonal Therapy 5/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 17, 2020 02:59PM cassiecanada wrote:

Hi Paloma- those 3 things you listed are

what i have done since june and no

side effects yet- good luck

( post menopausal women have an easier time

tho, I have been told

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Feb 17, 2020 03:02PM Artista928 wrote:

Many don't have ses and don't post.The ones here seem to. Night is best. Ses can kick in right at the start, midway or layer. Ses can go away or change. So best to go in without fear. It's like an other rx, no different.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant

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