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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 01:02PM - edited Nov 15, 2017 11:59AM 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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Aug 3, 2020 05:19PM - edited Aug 3, 2020 05:20PM by CarolS-60532

Hi Lumpykins I have very similar time frame and diagnosis as you -- DCIS and micro-invasive cancer, zero node involvement, stage 1A, My surgery was March. I delayed radiation that was supposed to begin in May due to Covid-19 concern here (numbers were ramping up here in Chicago-land) so oncologist put me on tamoxifen to 'tide me over' even though she would have preferred to wait to prescribe until after radiation was done as the normal course of treatment. After 60 days of tamoxifen, I could no longer endure the surging hot flashes -- very severe for me, so she halted me taking tamoxifen. I have since finished my radiation treatment on July 24. I meet with doctor later this week to discuss alternatives or lower does or something. Not sure why some of we ladies have such hot flashes and others not so much. My tumor was 100% ER+ positive so perhaps my severe reaction is due to the 100%. Will learn more.

Dx 1/8/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/3/2020
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Aug 4, 2020 09:39AM Salamandra wrote:

Hey CarolS,

My ER was also 100 or very close to it and I don't think I got a single hot flash. I got a couple of 'cold flashes', but then those stopped too. My big side effect was sedation, basically.

I don't think they understand or have ways to predict how these drugs impact individuals. It's the same like with hormonal birth control. You just got to keep trying until you find something that works for you.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Aug 4, 2020 11:28AM LB13 wrote:

Hi all,

I started tamoxifen on 6/24 - lumpectomy Feb 25th and finished 30 radiation treatments on 6/9. My tumor was 95% ER and 95% PR positive. I am on 20mg daily that I take around 8:30 am. I have added tumeric/curcumin (500 mg) to my supplements. I take Co-Enzyme Q-10, Fish oil, Vitamins B, C, D - thyroid medicine, blood pressure medicine and an allergy pill daily. I have also been on low dose Effexor for years for anxiety. So far, I don't think I have had horrible SEs. I have noticed some intermittent hot flashes - kind of feel like I am on fire when they happen- these are much worse if I have had some wine. (Although, i will say my radiated breast is still very warm to the touch and still slightly pink) At first, I had joint pain in my right hand, but that seems to have subsided. I have also had a mild headache off and on - but that could be from many things, I guess. Anyhow, I refer to Tamoxifen as my "anti-cancer" pill and have embraced it as opposed to fearing it. Hope that helps someone a little - hang in there girls - this sure is a life altering process, isn't it?

Dx 1/28/2020, IDC, Right, 1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 4/28/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/11/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 4, 2020 12:31PM Lumpykins wrote:

Beaverntx, oh, wow, I didn't know that about Benadryl (not that I typically take it) so thanks for that heads up. LIkewise about the dehydration. I need to step up my water intake anyway, so this is a good reminder. Which side effects does Claritin help you with?

CarolS, that's extremely similar dx/timing. I also delayed radiation due to the pandemic (and in fact, realized that the pandemic made the other option of bilateral mastectomy a practical impossibility). And likewise my oncologist offered to put me on tamoxifen before radiation but didn't push it, so I opted to wait and have a break. How early on did you start experiencing the side effects of tamoxifen.

LB13, we are also on similar timing.

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Aug 4, 2020 12:53PM CarolS-60532 wrote:

About timing of my tamoxifen side effects. The first month, from mid April to mid May, I got dry eye which I had suffered years before and knew what eye drops to take to help. (fyi -- try Oasis single serve drop vials, purchased through Amazon...). So I thought this is pretty reasonable so far. Some minor joint pain and some vaginal dryness, but nothing I could not work through with ease. Then starting about the 60th day, the hot flashes started. And they got worse and worse until the first week of July I could not take it anymore. I would have to strip off my shirt and lie on a large therapy cold pack against my upper back and neck for 15 minutes on the floor about 4 times a day. Not something I could even think about doing while having Zoom meetings with my clients. I stopped taking the drug about 24 days ago and just in the last two days, I have had much lesser surging. Has taken a long time to work out of my system. I still have some minor flashes but they are bearable and I do not have to strip down and ice up to survive. Will work with oncologist this thursday on some alternatives.

Dx 1/8/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/3/2020
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Aug 4, 2020 01:45PM Beaverntx wrote:

Lumpykins, can't really say which SEs the antihistamine helps with. I have seasonal allergies and was already taking it when I started Tamoxifen and was advised to continue doing so.

CarolS, Tamoxifen has a very long half life. I took a 30 day respite from it earlier this year and calculated that there was probably some still in my system when I started back on it. Hope you find something that works for you; being able to function is important.

Can't really speak to hot flashes as I have had only occasional mild ones, similar to my menopause experience. However, like Salamandra, I have had cold flashes when I literally felt chilled to the bone. Also highly ER and PR positive.


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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Aug 4, 2020 02:33PM BlueGirlRedState wrote:

Lumpykins - I was already menopausal when I took Tamoxifen for 5 years (2009-2014) after lumpectomy and radiation. As I read other posts, there does seem to be a difference in SEs for those already menopausal and those who had "instant" menopause with Tamoxifen. I had occasional very painful cramps in calf. Could happen anytime, relaxing, stretching, hiking, swiming (the lifeguard almost jumped in when he saw me suddenly grab the lane dividers and "crawl" back to the pool edge). Magnesium and staying hydrated really helped. I talked to one woman recently who said she had never been warned about blood clots - some women get them, others not. She was in for imaging after returning from Europe for a tennis tournament and bike trip.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Turned out to be tumor in R-axilla. Pet scan showed no metastasis. Started Ibrance and Arimidex Sept 2019. Tumor has shrunk from 2.5 cm to 7 mm (April 2020). Hoping CT this week shows more shrinking.

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Aug 4, 2020 09:09PM grdngrl505 wrote:

Hi, I joined the tamoxifen club about a week ago. Thanks for all of the posts on SEs. I'm waiting for them to start. I'm taking 200 mg of gabapentin so I'm hoping it might mitigate the hot flashes and I've been going to acupuncture. Does anyone have any insight on how long it takes for periods to stop?

Thanks in advance!

Dx 12/10/2019, IDC, Left, 3cm, Grade 1, 1/2 nodes, ER+/PR+, HER2- (FISH) Surgery 2/5/2020 Lumpectomy: Right; Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy 6/5/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 7/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 6, 2020 09:52PM - edited Aug 6, 2020 10:36PM by Mom2bill

This Post was deleted by Mom2bill.
Dx 11/9/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/19/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/24/2020 Whole-breast: Breast Hormonal Therapy 4/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 11, 2020 05:30PM lala1 wrote:

runor--I just wanted to mention to you that when I was about half way through my 5 years on Tamoxifen I had to have a total hysterectomy due to thickened lining, cysts and enlarged uterus caused by the Tamoxifen. Afterwards I was told I had the option of swapping to an AI. So I went to my BS and asked his opinion. He said he actually recommended that I stay on Tamoxifen. He felt that out of his thousands of BC patients, most found AI to be more difficult than Tamoxifen. And he said that since I was able to more or less live my life on T that I shouldn't "rock the boat". And he said if you calculate the difference in recurrence risk of the two, that it probably wasn't worth the increased SEs of an AI. So I stuck out my 5 years.

As to taking a month off of the med, when I stopped my Tamoxifen I swear it was months before I saw a difference! It probably took about 3 or 4 months before the joint pain went away. And it was damn close to a year before I started to actually lose weight again. I'd lost 20 pounds right before diagnosis and gained back about 12 during my 5 years on T. I joined a gym right after treatment but never could lose any weight. I really just managed to keep from gaining a LOT of weight! And it took a long time to see my hair thicken back up too! So I just wanted to say that I don't really think you'd see much of a difference taking just a month off. Anyway, don't know what you've decided to do but just thought I'd share my experiences with you.

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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Aug 11, 2020 05:39PM Beaverntx wrote:

lala, thank you for the information about your hair thickening again post Tamoxifen! I have been wondering, especially since my hair has started to thin again after several months of having the thinning slowed. It is now thin enough on the top that I must wear a hat if out on the sun for any length of time. You have given me hope ☺

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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Aug 11, 2020 10:01PM runor wrote:

Lala1, thank you. I think we see things the same way. I  decided not to change. I like the idea that I get a bit of protection from bone density loss with tamoxifen. I am not having a great time on tamox but I realize  it could be worse and I am just not willing to go there. I mean, it might be better too but... I rolled the dice and decided to stay the course on tamox. My doc also feels any gains in survival I might get are almost non existent. 

This weight gain - oh my god - all in the middle! I'm shaped like a rain barrel. Can't keep my pants on cause my gut is bigger than my ass and my pants literally slide off. Or I have to wear them so tight they cut me in half and a blub over the top and blub under the waistband. Oh my lord, the sexy is off the scale! I can't, I just can't. 

I struggled going on tamox. I worry now that when the 5 years are up I'll feel utterly exposed and vulnerable, Like a big cancer cell waiting to spring into life. Damn this disease.

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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Aug 12, 2020 11:00AM Jen2Mom wrote:

Do any of you take tamoxifen and tumeric? I recently had my ovaries removed and I think the lack of estrogen is really doing a number on my joints. I've read that tumeric may affect the potency of tamoxifen was wondering what you guys have heard.

Dx 9/28/2018, IDC, Right, <1cm, Stage IB, Grade 1, 1/12 nodes, ER+/PR+, HER2- (FISH) Surgery 11/16/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 1/21/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/11/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 12, 2020 12:06PM CarolS-60532 wrote:

Oh I would like to hear about turmeric implications as well. I have taken it since uterine cancer back in 2014 and never even thought it might interfere with tamoxifen...

Dx 1/8/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/3/2020
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Aug 12, 2020 12:43PM CarolS-60532 wrote:

Lala, you are so right The month off has not made much of an improvement in the hot flashes. I was given a prescription, maybe a smidgen and less frequent.... two days ago to offset the hot flashes (Effexor? something like that...) and it is too soon to see if it will work....Still want to complete the 5 years of tamoxifen if I can. The AI sound like too many other types of SEs that will impact me. Since I already broke my leg in a freak fall after my chemo egimen for uteirne cancer, I want to avoid bone issues if at all possible....

Dx 1/8/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/3/2020
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Aug 12, 2020 05:39PM lala1 wrote:

CarolS--I just posted a whole thing about turmeric in the "Doing Well on Aromatase Inhibitors" thread (I think this is it.... community.breastcancer.org/for... ). I posted yesterday. At first my MO was against me taking it, but I told him I'd found some new studies showing it's ok to take with Tamoxifen. He's a "research" guy like myself and once he did his own research, he told me he was totally ok with me taking it. He said it's much like soy....newer studies show it's actually ok to take in certain forms and certain amounts. Let me know if you can't find the post and I'll repost it here.

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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Aug 13, 2020 09:29AM BlueGirlRedState wrote:

lala1 - could you repost what you said about hair thickening? Oncologist says it is the Arimidex, not the Ibrance. I had been taking Tamoxifen before the AI. I can't blame all the hair I find around the house on the dog and cat. Hair definitley getting a lot thinnner, seems to have ebbed slightly, but does not seem to be coming back.

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Aug 13, 2020 09:54AM - edited Aug 13, 2020 09:54AM by lala1

BlueGirlRedState--Not really sure what I said about hair thickening. I know about a year into Tamoxifen my totally straight, baby fine hair suddenly developed a "swirl/curl" on one side! No chemo or rads for me so pretty sure it was the Tamoxifen. And my hairdresser noted that is was also thinning a bit. Once I finished Tamoxifen it took a long time for it to thicken back up, if you can call my baby fine hair actually thick. LOL. I would say it was at least 9 months before I started to see a difference. And I'm now about a year and a half from finishing and I still have the damn swirl!!

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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Aug 13, 2020 11:03AM Tinkthetonk wrote:

I have been taking Tamoxifen for about three weeks now, after trying Letrozale and Anastrozale. The joint pain grew to be too much. I've started Biotin shampoo for my hair, but I've had a lot of insomnia the past couple of weeks and wondered if the Tam could be causing it? Also having Irritable Bowel Symptoms too. Is Tam the problem or could it be something else, because I don't remember seeing the things I've listed as SEs. Thanks, T

Dx 7/17/2018, ILC, Left, 6cm+, Stage IA, Grade 1, ER+/PR+, HER2+ Chemotherapy 7/30/2018 Other Surgery 1/31/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 3/12/2019 Whole-breast: Chest wall Hormonal Therapy 5/13/2019 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 13, 2020 11:13AM Cricketdog wrote:

Hello, ladies!

I haven't posted in a while. I think I have settled into the longer-term side effects of Tamoxifen now. I've been taking it for over two months and haven't seen changes in the last month or so, except for not having the dry eyes that I was experiencing initially. I met with my MO a few weeks ago and confessed to only taking the 10 mg instead of the full dose. My rationale is that the insomnia is absolutely horrible with the lower dose and that I can't imagine how impactful it would be on daily living with a full dose. My MO bought into it but suggested I try a higher dose at some point. I've been prescribed an anti-depressant in a very low dose which has the side effect of drowsiness. But, the SEs from that appear to be absolutely horrible and I'm not adding to my misery. So, I take 10 mg of melatonin and sleep between 1-6 hours a night. And then I drink a giant cold brew each morning. I am hypothyroid and have never had sleeping issues -- ever. I'm a 9 hour a night person under normal conditions. I have been playing tennis like a mad lady with the hopes of tiring my body out and not gaining the weight that comes with the drug. The heat index was 105 last weekend and I played in four matches during a tournament. It was physically exhausting but didn't impact my sleep pattern at all. :( If only this drug could be used for college kids during finals week!!!


Dx 10/2019, ILC/IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/11/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 2/12/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 13, 2020 11:22AM Beaverntx wrote:

TinktheTonk, insomnia can be a side effect of Tamoxifen. The most usual GI SE is constipation, due to how dehydrating Tamoxifen is. If you are having symptoms of IBS-C, it may be the Tamoxifen and not IBS. The usual advice for the constipation associated with Tamoxifen is to drink lots of water (I drink about 10 glasses of water plus my AM 3 to 4cups of coffee daily) and get enough fiber in your diet (getting 6 to 7 servings of fruits and vegetables, some cooked, some dried, and some raw is working for me).

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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Aug 13, 2020 11:46AM Mom2bill wrote:

lala1

I have been on Tamoxifen for about 4.5 months now. Around the end of the second month I noticed strands of hair caught in my fingers every time I washed my hair, which is still happening. I also have very fine, straight hair, and interestingly enough, I also developed a weird curl on one side of my head! This drug causes such an odd array of side effects. I'm managing them, 4 months in, but the thought of dealing with this for 5 to 10 years is kind of a drag.

Hope everyone is staying safe.

Dx 11/9/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/19/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/24/2020 Whole-breast: Breast Hormonal Therapy 4/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 14, 2020 06:52AM lala1 wrote:

TinktheTonk--I also had sleeping issues with Tamoxifen. I ended up ordering a very low dose of melatonin from Amazon. It was 0.3mg which sounds crazy since most people take as much as 10mg often but my holistic doctor told me that too much melatonin can have the opposite effect. I would take it every night till I was sleeping well and then slowly taper off till I my sleep pattern was good and then go without. Eventually my sleep would get bad again and I'd go back on it but mostly it was just to get over a hump. I've actually started taking it again with all this coronavirus/election crap going on because I tend to lay awake arguing in my head about stuff! Lol. Now I'm back to sleeping my usual 8-9 hours a night.

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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Aug 14, 2020 08:10AM Rebalilly wrote:

I posted elsewhere and think its better here.

Have been on tamoxifen over a week and the last three days are awful. Stomach cramping day and night. Started out with no problem

Can I hope this will get better?

Dx 5/18/2020, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 6/3/2020 Lumpectomy: Left Hormonal Therapy 8/5/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Radiation Therapy
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Aug 14, 2020 08:24AM Beaverntx wrote:

Rebalilly, I have not had the stomach issues but several people have posted reports that theirs did get better. Not to give false assurance, others did not. Getting personal, could the cramping be from constipation, a very common side effect of Tamoxifen? Since Tamoxifen is dehydrating, drink lots of water and other fluids every day. I also eat some dried fruit mid afternoon with some of the water and, in addition, I pay more attention to getting 5 to 7 servings of fruits and vegetables each day. I tend to notice a difference if I slack off on getting enough fluids.

Hope you feel better soon.

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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Aug 14, 2020 09:32AM BlueGirlRedState wrote:

Rebalilly - I took tamoxifen for 5 years after lumpectomy and radiation 2009-2014. When you take it might make a difference. I found that my tummy tended to gurgle less and I slept better if I took at bedtime vs with breakfast. I was already in menopause. As I read the various posts, it seems like Tamoxifen is harder on those who are premenopause.

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Aug 14, 2020 12:37PM - edited Aug 14, 2020 12:39PM by Rebalilly

thanks Beaverntx and BlueGirl

I have been feeling constipated and bought some Ducloex and prune today. Also, I take it in the morning and going to try bedtime. I appreciate you gals! I am postmenopausal and was hoping Tamoxifen would be easy on me I have osteoporosis so I can’t do AI’s

Dx 5/18/2020, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 6/3/2020 Lumpectomy: Left Hormonal Therapy 8/5/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Radiation Therapy
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Aug 14, 2020 01:35PM runor wrote:

Rebalily, I second what Beaver and BGR said. I never had issues with constipation until I started tamox. That was one of the first issues! So make sure you are taking in plenty of fluids (so you can pee all night, hooray!) And up your fiber game. Good luck!

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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Aug 28, 2020 11:30AM PetuniasNanny wrote:

Hi there, I’ve been in Tamoxifen a year now and believe me, I haven’t seen any weight loss! Lol. What I do have is terrible leg cramps that get to me at night. Then all day, my calves are killing me. Anyone else

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Aug 28, 2020 11:40AM Mom2bill wrote:

PetuniasNanny: I have been on Tamoxifen for 5 months and have been lucky to not have the leg cramps at night. I’ve been taking magnesium as some have suggested, so perhaps that is helping? I do, however, have stiff and painful calves all day. When I go for a walk, I’ll feel some cramping, but can usually walk it off. I also get a really tight feeling around one of my ankles, that I can also walk off. The side effects of this medication are truly weird

Dx 11/9/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/19/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/24/2020 Whole-breast: Breast Hormonal Therapy 4/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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