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Topic: When did your Tamoxifen side effects start?

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: Apr 29, 2020 08:03PM

minarchist wrote:

i have only been taking it for two months, so far nothing. does it take a while to kick in? thanks!

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/3/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Apr 29, 2020 08:15PM Georgia1 wrote:

Hi there. Side effects depend a lot on whether you've been through menopause or not. I'm 61, and about a month in got leg cramps at night, which then subsided. But all pretty minor for me.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/9/2017 Lumpectomy; Lymph node removal: Right, Sentinel Dx 10/10/2017, LCIS, Right, 0/1 nodes Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 29, 2020 08:20PM - edited Apr 29, 2020 08:22PM by minarchist

Georgia1 looks like we had almost the same Dx!

thanks for the response and good to hear. i keep waiting for the side effects shoe to drop after reading 1000s of horror stories. i havent been through meno yet, so i guess we'll see!


Cancer touched my breast so I kicked its ass. LOL :)



Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/3/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Apr 29, 2020 09:18PM Moderators wrote:

Welcome, minarchist! We're glad you've joined our community here, and we hope you find this to be a supportive place. And we're also happy to hear that your side effects haven't been as bad as you were expecting! We hope you continue to respond well to your treatment and are able to manage any side effects, should they appear.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 29, 2020 09:21PM bcincolorado wrote:

I started Tamox when I was 49 and I went into instant menopause actually so the only side effect I could say I ever had was hot flashes which I managed fine with ice packs I kept in the freezer if it got bad and knew it was me and not temp outside because it was winter. Always felt better than cancer no matter what.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
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Apr 29, 2020 10:15PM - edited Apr 29, 2020 11:30PM by minarchist

thank you bcincolorado, its so nice to read some non horror stories, the internet had me tied in knots before i started taking it. I guess ill ask my onc if its ok that i still got my period twice, like is it working? Lol

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/3/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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Apr 30, 2020 05:05AM gb2115 wrote:

I have been on tamoxifen x 3 years. I'm 41 and premenopausal. Periods got further apart a few months in, and hot flashes started around the same time. Periods are still weird but I rarely get hot flashes now.

My other side effects, dry mouth (with gum irritation), dry everything really (eyes, vagina, etc), muscle/tendon pain, and now possible ligament laxity took a bit to show themselves. It's not a horror show or deal breaker but I do look forward to stopping the medicine in 7 years!!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Apr 30, 2020 12:54PM Kikki wrote:

Hi everybody! I too was wondering how long side effects start kicking in after starting Tamoxifen. I started 2-3 weeks ago and so far I have a couple episodes of hot flashingBawlingin the middle of the night that last a minute or so then go away! WakeS me up out of a dead sleep though, which sucks. The other thing I noticed is a dry, itchy scalp, breast and itching a little bit all over. I also noticed I feel kind of unmotivated at times to do things. Not depressed, just kind of there, lol. I take my pill at 10am everyday. I have been making myself get on the treadmill for an hour 4-5 days a week. I’m going to start adding lightweights in the next day or so.

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Apr 30, 2020 01:58PM Georgia1 wrote:

Minarchist, I totally get it - I was expecting awful side effects but mine were mild and temporary. And yes, irreverent me loves some of the sayings people share here. Another favorite of mine is: "Cancer is a bitch, but I'm a bigger one with more practice!" Hang in there.

Happy

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/9/2017 Lumpectomy; Lymph node removal: Right, Sentinel Dx 10/10/2017, LCIS, Right, 0/1 nodes Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2020 11:03AM minarchist wrote:

kiki i take mine at night instead of morning, but maybe that would mean youd have your hot flashes in the day instead i dont know if thats better LOL

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/3/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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May 4, 2020 06:59PM annoyingboob wrote:

ive been on it 2-3 weeks as well - in the mornings. i cant fall asleep easily and i wake up earlier than usual, whereas normally, im a great sleeper. ive been tired during the day, which may just be from the sleep loss. some achey joints, but i havent been moving as much - just a 1-2 hr walk each day. i dont have clearance to do any upper arm things until after exchange. not depressed, but tired feeling - little motivation to do anything. but who knows - its also covid pandemic and you are supposed to stay home. its hard to know what is tamoxifen, what is breast cancer stress, what is covid, and what is just being 50yo. ugh...good luck to us all!!

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/5/2017 Lumpectomy: Left, Right Radiation Therapy 2/21/2017 3DCRT: Breast Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/2020, IDC, Right, <1cm, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Surgery 3/19/2020 Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy 4/15/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery
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May 5, 2020 09:07AM deweygirl19 wrote:

gb2115 LIGAMENT LAXITY! That has been happening to me but I didn't know the words for it, I just knew my tendons and/or ligaments were loosening so much so that I am injuring myself when I try to exercise. On the plus side, my plantar fasciitis completely went away.

Dx at 42 Dx 8/9/2019, IDC, Right, 1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2019 Lumpectomy: Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 12/15/2019 Whole-breast: Breast Hormonal Therapy 2/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 12, 2020 04:45AM Via wrote:

i one have one side effect and that is having hard tome sleeping or falling at sleep. But other than that am doing amazing with it!

Hormonal Therapy 3/15/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 16, 2020 11:28PM momof2winsplus wrote:

I have been on Tamoxifen for almost 3 months. I have not had any side effects. When I told my breast surgeon, she was not happy with that. She said I should be having at least some mild hot flashes by now if it is working. She is ordering a CYP2D6 test to find out if I am processing any of the tamoxifen into endoxifen. Otherwise, it is not preventing cancer from returning.

Dx 12/12/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 2/18 nodes, ER+/PR+, HER2- (FISH) Surgery 1/22/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/18/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Lymph nodes, Chest wall
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May 17, 2020 12:55AM - edited May 17, 2020 12:57AM by WC3

This Post was deleted by WC3.
Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 17, 2020 11:43AM T-Dahl wrote:

I can’t tell you how happy I am that I found this thread! I’ve been in Tamoxifen now for 3 months. A little hair thinning, non existent sex drive & a little sweaty sometimes (but I live in South Florida so it’s hard to tell). Oh.... and the weight gain although I’m not 100 convinced it’s all because of the medication l, but that’s what I’m telling myself right now

I definitely feel different, but like annoyningboob said, who knows why. It could be the fact I’m stuck in my expanders that should have been replaced at the beginning of May, the hormones, the lock down, working from home? IDK. 🤷🏻♀️

Deweygirl19- my planters fasciitis has seem to gone away too! But I haven’t had any other ligament issues (yet)

Reading all these posts just helped me know I am not alone or crazy. I have a great supportive family but in the back of my head I know they just don’t really understand what I am going through. I came on here to see if I could find some answers or at least something I could relate to! It means so much!!
Thank you!! ♥️

Dx 12/6/2019, DCIS/IDC, Both breasts, 5cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 1/16/2020 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/10/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 17, 2020 10:54PM - edited May 17, 2020 10:58PM by Momgr5

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May 17, 2020 11:00PM Momgr5 wrote:

I have same effects from tamoxifen. At 4 weeks my forehead broke out with ?acne or something similar. It was itchy. Now forehead improved but I head and face so itchy. I on 6th week of tamoxifen now. Any sugge

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May 18, 2020 07:52AM flashlight wrote:

Momgr5, Do you take any supplements? I started with fish oil due to Tamoxifen drying out my eyes and just recently switched to krill oil. It takes a good 3-4 weeks for any of the supplements to kick in. There are some good post on supplements. I now take a few and I was never a pill taker, but they seem to help me with the side effects. Via, I had a terrible time with insomnia last year. I tried taking the Tamoxifen at different times and nothing worked. I saw where it was posted to take it at 830-9Pm and I tried that. My primary was concerned about my insomnia and told me to take gabapentin 100mg nightly with the Tamoxifen. That has worked for me so far. I still have hot flashes and it has helped with that as well at night.



Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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May 18, 2020 01:15PM - edited May 18, 2020 01:20PM by TreUno

Hi everyone...I'm almost in tears bc I'm just finding this after being on Tamoxifen for three years. I wish it had been sooner so I could have someone to talk to ab our shared experiences. I'm 35 and here is what I've experienced:

Hot flashes but only at night when I go to bed. Those stopped eventually but I have found, if I take it within a couple hours of going to bed, I will wake up drenched in sweat. I sleep better if I take it during the day.

Tamoxifen immediately caused acne for me. My dermatologist put me on Doxycycline to combat the acne. However, both meds have a side effect of hair thinning. I find new plugs of hair missing often and it's heartbreaking. The front of my hair has thinned quite a bit, my hairline has receded somewhat, and the left side has had major breakage. I'm taking hair vitamins and doing proper hair regiments. Does anyone have any other advice?
I found an article that discussed patients with endocrine therapy experience alopecia. Rogaine was suggested by my dermatologist but Rogaine is something you can’t ever stop once you start bc you’ll lose your hair all over again. No thanks

I didn't experience vaginal dryness. I had quite the opposite experience in the beginning. My sex drive decreased but eventually came back.

I forget things often and find it difficult to really concentrate/comprehend sometimes. I spoke with onc and she mentioned Tamoxifen can have the side effect of foggy brain. I hate that.

I noticed “hard to lose" weight gain in my mid section and I've always been smaller. My onc thinks it's bc I'm getting older. I fully believe it's the tamoxifen. I know my body.

I hope to get off at 5 years even though studies now suggest taking it for 10 years. My onc said we will discuss at the 5 yr mark in 2022.

I hope this helps someone else and if anyone has any advice ab how to stop losing my hair, please send it my way. Thank you.

God bless you all!

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May 18, 2020 08:49PM Moderators wrote:

Hi TreUno! Thank you so much for joining our community, and for so thoughtfully and thoroughly detailing your personal experience on Tamoxifen. We know each person's experience is different, but this kind of information can be invaluable for the next person getting ready to go down this road.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 18, 2020 08:55PM bcincolorado wrote:

Weight gain can happen with meds unfortunately. I ate salad and very low fat diet and exercised and nothing. My oncologist basically told me as long as on meds keep doing it and it is not the end of the world. Yes, I gained a lot over the years as a result not matter what I did. I was still doing ok and keeping cancer away though which was the point. Keep that in mind and not the scale.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
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May 19, 2020 12:36AM Momgr5 wrote:

flashlight, I do take supplements. I take more of those then any prescribed med. I take magnesium, biotin, vit D. Zinc, vit E, vit B it sure seems to be a lot of supplements to take daily. I tried getting into a dermatologist but no appointments available till August. With the forehead acne and all the scalp itching I will be in trouble by then. I see my oncologist next week. That is the only side effect I have noticed from the tamoxifen. I really would prefer not to switch to something else.

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May 19, 2020 12:45AM Momgr5 wrote:

Treuno, I so far don’t have hair issues but having a terrible time with acne on my forehead into my scalp. My scalp just crazy itches. I probably will end of with hair issues if the scratching continued. I tried to see a dermatologist but they booked out till August. One Dr did prescribe doxycycline but it made me do sick to my stomach that I was told to stop taking it. Next week I see my oncologist. Maybe a referral will get me into dermatologist sooner

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May 19, 2020 04:51AM gb2115 wrote:

Deweygirl19...just saw your reply from awhile ago...yeah the laxity is crazy. Anything but the most gentle exercise just doesn't work out. And now I get to add pelvic organ prolapse to the list. Doctor said that can happen with tamoxifen induced ligament laxity... everything holding the organs in place down there stops playing nice. I guess it makes sense but man, starting to really face some quality of life issues here. I can't pick stuff up off the floor without feeling like my bladder is falling out. It's not (yet) but it sure feels like it.

Being a woman is hard!!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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May 19, 2020 08:07AM - edited May 19, 2020 09:02AM by flashlight

Momgr5, My daughter couldn't tolerate doxycycline for acne and had swallowing issues from it. Her dermatologist put her on Minocycline and she was able to tolerate that without any problems. Both have side effects, but this one is supposed to be milder. It can take a couple of months to work. Before she was married she broke out again and she was put on a prescription form of benzoyl peroxide and a topical retinoid. They also can prescribe a topical antibiotic like Clindamycin. I hope you can get in with the dermatologist sooner. They are always booked! Would a dandruff like shampoo help with the itchy scalp? I remember my mom having to use a shampoo for seborrheic dermatitis. She didn't break out, but her forehead was red and it itched like crazy into her scalp.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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May 19, 2020 12:37PM deweygirl19 wrote:

gb2115.... I didn't even think of pelvic organ prolapse! Geez louise! I have a lot of pelvic pain right now but I also have a lot of ovarian cysts that can cause pain too (which I think is because of the tamoxifen). Being a woman IS hard!

Dx at 42 Dx 8/9/2019, IDC, Right, 1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2019 Lumpectomy: Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 12/15/2019 Whole-breast: Breast Hormonal Therapy 2/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 21, 2020 01:09PM TreUno wrote:

@flashlight @momgr5

If I take doxycycline on an empty stomach, I am done-zo!! I switched to minocycline for a very short period of time. It started turning my toenails and fingernails black and I also developed the side effect of formication which only happens to about 1% of ppl who take it. It’s where you feel like your skin is crawling. That was a crazy experience.

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May 24, 2020 09:22AM minarchist wrote:

May 16, 2020 10:28PM momof2winsplus wrote:

I have been on Tamoxifen for almost 3 months. I have not had any side effects. When I told my breast surgeon, she was not happy with that. She said I should be having at least some mild hot flashes by now if it is working. She is ordering a CYP2D6 test to find out if I am processing any of the tamoxifen into endoxifen. Otherwise, it is not preventing cancer from returning.


this is what im worried about :(

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/3/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+
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May 24, 2020 10:49AM Salamandra wrote:

My oncologist told me there was no correlation between side effects and whether it was working. I wish there were more consistent information about this.

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 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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May 24, 2020 05:37PM minarchist wrote:

to update, after 2 normal periods since starting march 7th, this seems to be it--no period this month. i guess its starting to work?

Dx 10/24/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/3/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx DCIS, Right, 4cm, Stage 0, Grade 2, 0/1 nodes, ER+

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