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Topic: Starting/declining hormone therapy Nov, Dec, Jan 2018

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: Dec 15, 2018 10:48AM - edited Dec 15, 2018 10:50AM by Wised

Wised wrote:

Hi, this is for people who had active bc treatment in the fall and winter of 2018/19 to discuss further hormone treatment and to support one another in this journey regardless of treatment choices. This is also for ANYONE who would like to participate in a friendly, supportive manner. This is also the place to get as silly as you're capable of. Let it all out here!

I'll start. Most of my info is in my signature, but to recap, dx September 18, lumpectomy October 18, started Anastrazole right after lumpectomy, radiation November/December 18. Since I have started anastrozole, I have experienced a great deal of peripheral neuropathy in my fingertips. I was on chemotherapy three years ago and had neuropathy from that treatment, however it had abated. I am now taking gabapentin for that side effect. I also have really horrible hot flashes, and increasing joint pain. The problem with starting anastrozole before I started radiation is that I don't know if the horrible hot flashes are super horrible because of radiation or because of the drug. I wanted to start soon because both my estrogen and progesterone were in the highest category. When I go to my oncologist next week I'm going to ask to maybe switch medications to see if that helps.

Stage 3 colon cancer treated in 2015/16. Factor 13 bleeding disorder. OncotypeDX 8. Lymphedema dx 3/19. Dx 9/12/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 10/18/2018 Arimidex (anastrozole) Radiation Therapy 11/19/2018 Whole-breast: Breast
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Mar 3, 2019 12:24PM HPFULL wrote:

interesting about the magnesium being absorbed by the skin! I just love all the things I learn from all of you :) I am taking 200mg of magnesium.

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 12/11/2018 Reconstruction (right) Hormonal Therapy 1/15/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Mar 3, 2019 05:14PM PebblesV wrote:

For bennybear and others who asked me to post the articles on locoregional recurrence from the breast cancer symposium, I finally got around to it! Started it in a separate thread here just for easier access in case someone wanted a quicker shortcut to these (could get more lost in our very active thread here!):

https://community.breastcancer.org/forum/78/topics/870153?page=1&post_creation=true#post_5365188

I also posted a few more links and studies I found here regarding lower doses of tamoxifen. If anyone finds any more, let’s gather them on the thread I started! I need every ounce of info I can find to present to my oncologist and hopefully stay on the 10mg dose! I have a feeling he will want me to just try it at 20mg which I might, but also if I could just stay at this 10mg dose and it’s effective with minimal SEs that’s a best case scenario.

Domino and Tucker say hello.


Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 3, 2019 05:23PM Salamandra wrote:

I may have spoken too soon on the heartburn. It seems to have come back with a vengeance I have no idea what's going on with my body right now :( I'm going to give it another week and then turn back to the doctor...

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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Mar 3, 2019 05:29PM GreenHarbor wrote:

Oh no, Salamandra! I was hoping the new meds were going to continue to help. Fingers are crossed for you...

Dx 7/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/22/2018 Lumpectomy: Left Hormonal Therapy 9/14/2018 Radiation Therapy 9/30/2018
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Mar 3, 2019 09:37PM bennybear wrote:

thank you!

Dx 3/25/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 6/6/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 4, 2019 12:16AM JaBoo wrote:

The article is very interesting and may be easier to read here

http://www.ascopost.com/issues/january-25-2019/preventing-locoregional-recurrence-of-breast-cancer-should-not-deter-efforts-to-decelerate-therapy/

dx at 38 Dx 5/22/2018, IDC, Left, 2cm, Grade 3, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/14/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 6/19/2018 Lumpectomy: Left Hormonal Therapy 7/16/2018 Zoladex (goserelin) Chemotherapy 7/16/2018 AC + T (Taxol) Targeted Therapy 9/13/2018 Herceptin (trastuzumab) Hormonal Therapy 1/11/2019 Aromasin (exemestane) Surgery 1/21/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/27/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 4, 2019 07:07AM Salamandra wrote:

Thank you GreenHarbor!

I think I'll also have to get a lot stricter on my diet :( It's tough to go from having a stomach that could handle anything I threw at it to one I seem to have to coddle.

I've already cut citrus, but I think it's time to go more drastic. I guess I should try a full elimination diet for a couple of weeks, and if it helps, then do tests to check what I can consume without consequences. But oh it seems like a lot of the foods are mainstays of my diet, and I am not a motivated cook! Rice with egg, pasta with tomato sauce and tuna, rice with milk and cinnamon, coffee, toast and cheese, clementines, snack bars, would probably all have to go!

Trying to steel myself for 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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Mar 4, 2019 07:16AM RobinLT wrote:

Hi all, my first time in this particular topic. I am two years in. Was on Anastrozole . Also took a Statin for cholesterol, and Wellbutrin to combat all the side effects.

After two years of insomnia, significant joint pain, fatigue, I figured I was just going to hunker down and get through it. Then the mental fog set in. Big time. I was on the verge of quitting my job, and giving up driving. Scary.

Then one day I simply read the labels on my drugs and realized that any and all of them could be responsible. I approached my Oncologist who agreed I should take a break from Anastrozole and see how I feel. Then we would evaluate. I stopped for 5 weeks, felt MUCH better. Then I stopped my statins which have also been problematic for me. And I stopped Wellbutrin.

I feel reborn.

Oncologist put me on Tamoxifen to see how I respond. Although my brain still seems okay, I’m back to insomnia, joint pain, etc.

I am considering jumping off this dang ride. But I just read here that half dose is perhaps an option. I’ll look into it. Thanks for all the info, ladies.

Dx 3/8/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 3/27/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast
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Mar 4, 2019 07:44AM - edited Mar 4, 2019 07:52AM by PebblesV

RobinLT - I just posted what I could find re: smaller doses of tamoxifen here - hope it helps!

https://community.breastcancer.org/forum/78/topics/870153?page=1#top

Jaboo thx for the link! Would have saved me a lot of time lol. Oh well I already posted the original transcript.

Salamandra - I'm still discovering the healthy diet too (trying to push past current weight loss plateau) so although for different reasons, maybe I will diet with you! Some recommended things to help heartburn are very similar to what's recommended to help reduce breast cancer risk and also lose weight.

https://m.forkly.com/food/15-foods-to-help-treat-gerd/?utm_medium=cpc&utm_source=google&utm_campaign=FO_GGL_US_MOBI-SearchMarketing&utm_content=g_m_272293954022&cus_widget=kwd-13527133&utm_term=acid%20reflux%20diet&cus_teaser=&gclid=EAIaIQobChMIwoH57ejo4AIVWR-tBh2xFA4WEAAYAyAAEgKRSfD_BwE

bennybear you're welcome!

For GreenHarbor, HPFULL, Dani, LPlibrary, purplecat, michelle and others...

Morning smiles from Domino and Tucker to help us get our week started.


Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 4, 2019 09:36AM Michelle_in_cornland wrote:

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Mar 4, 2019 09:43AM OTMom wrote:

Officially on this train now. First lupron shot was this morning. Going to give my body some time before throwing arimidex at it. Probably good that mine starts with a scheduled injection because I'd probably keep chickening out about taking a pill.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/5/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/13/2019 Whole-breast: Breast Hormonal Therapy 3/3/2019 Arimidex (anastrozole)
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Mar 4, 2019 12:28PM rljes wrote:

Thanks Appyfan and kdrake and all others who responded Re:  port information.  I don't do well under local - but I'll suck it up and get it over with in a few months.   During insertion of my port I kept a running commentary during the procedure hoping they would knock me out - It really hurt and Versed does nothing for me. 

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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Mar 4, 2019 01:43PM rljes wrote:

Wow - Just got a call back from Pharm Oncologist, I had requested 10mg x2 of Tamoxifen instead of 20mg to start out with and she said my MO said NO!   I told her to tell him that I was starting out at 10 mg no matter what he said, and it would be irresponsible for me to have a 20mg pill and try to cut it in half when the pharmacist at the drugstore says there is no score, and it crumbles when it cuts. She finally said she would call in the 10mg x2 for one month.  Everyone Must Stand Up For Themselves! 

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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Mar 4, 2019 03:11PM HPFULL wrote:

Nice job standing up for yourself rljes

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 12/11/2018 Reconstruction (right) Hormonal Therapy 1/15/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Mar 4, 2019 03:11PM PebblesV wrote:

OMG rljes I can't believe that! Thank goodness you stood up for yourself and insisted. So glad this thread is helpful and you knew there was the 10mg dose from it.

BTW on tamoxifen, I'm glad your RO finally switched you to that. Here are some screen grabs from my past posts... just saying, I called it before the RO ha ha. Don't know if you ever noticed because I never saw you respond every time I made that suggestion, but remember these?

On Feb. 4, 2019:

On Feb. 12, 2019:


Michelle... ADORABLE pup pups!!!

In other news, I have my follow-up with my RO this week and I don't know if I'm looking forward to or dreading it. I have not switched from the 10mg dose and he might insist that I do... so we'll see...

One more for the road - I forget if I posted this one, but here are Domino and Tucker helping me work out (Dani they are excellent incentive for yoga LOL!):


Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 4, 2019 05:38PM rljes wrote:

Thx you all for helping me out.  :) 

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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Mar 5, 2019 01:18AM Dani444 wrote:

rljes- Holy cow! So glad you finally got the 10 mg!

Pebbles- Thanks for the cute Domino/ Tucker pics! They would be all the incentive I would need if they were helping me out with youga😂.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 5, 2019 05:31AM Michelle_in_cornland wrote:

rljes, there is no reason that you cannot have the 10mgs x 2 per day in a close interval. Your MO can prescribe it like that the full length of time that you take it. I take mine at 8pm, and again at 11pm, a very short interval that work for me.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Mar 5, 2019 06:02AM PurpleCat wrote:

Good for you, rjles!

Pebbles, please assure Domino and Tucker that I am going to yoga tomorrow, and thank them for the reminder!

Salamandra, sorry about the continuing stomach issues. Mine isn't feeling so great either. I've cut out coffee and am experimenting with eliminating some other possible triggers.

Dani, I've had some fatigue again too, the crashing kind where I need to just go collapse on the couch. So hard to pin down the cause, but it reminded me of those radiation days.

Hi to everyone else ... I just responded to a few people with similar symptoms to mine, but am glad everyone is here sharing experiences.

Almost six weeks in and the side effects are catching up to me. I guess that makes sense, as they say it takes time for the stuff to build up in our systems. Nothing that would drive me to stop taking it, just a lot of stuff going on. Muscle cramps and twitches I've experienced for my entire life have gotten worse; I'd say the magnesium isn't helping except that it's all EVEN worse when I don't take it. That's always worse in the winter, so I'm hoping for warmer weather. Some stomachaches and reflux sensations I'm trying to manage with diet changes. Some chest/armpit pain and discomfort that my left brain tells me is related to surgery/radiation (I posted about it in the December radiation thread) but my amygdala insists is either spread to to the chest wall or a pulmonary embolism. Occasional woozy/dizzy spells and weird sensations in my vision. BUT! My migraines (so far!!!) have not gotten worse, and that's what I most feared. And it's SO curl-up-in-a-fetal-position-and-pray-for-spring cold here right now that I'm actually welcoming the hot flashes on the rare occasions I get them.

I'm holding on to all the posts in this and other forums that the side effects do settle down in time, and hoping that spring will help both my body and my mood.




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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Mar 5, 2019 10:29AM rljes wrote:

Hi Everyone - How much Magnesium should be taken?  

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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Mar 5, 2019 09:46PM - edited Mar 5, 2019 09:47PM by PebblesV

Dani and Purplecat - I will let Domino and Tucker know! Maybe we should start a yoga with pups thread? LOL



Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 6, 2019 03:42AM GreenHarbor wrote:

Good morning, everyone! I’m writing this on my sofa, in my fleece bathrobe and with a fleece blanket on my lap and fuzzy slippers on my feet. I’m looking out to my deck at the almost 12” of snow that’s arrived since Saturday. Cold temps are expected for much of the week, so the snow isn’t going anywhere. It’s really affecting my mood. Kinda cranky, kinda gloomy. PurpleCat, I think my amygdala has been talking to your amygdala.... I sneezed 4-5 times in a row the other day, and was convinced it was cancer that spread to my nose. Your chest & armpit pain could absolutely be from rads. I had the same thing at Christmas, about 2 months after I finished treatments. I was getting random twinges, almost like the post op pain I had in August and was getting a lot of those nerve pain “zaps”. According to my breast surgeon, rads causes pectoral muscles to shrink. As they shrink, they pull on tissues that are still healing and cause pain. There’s a couple of spots in my chest/armpit that are REALLY tight. Yoga helps, and I also try to remember to stretch it each morning and night in bed. Here’s to the days getting longer, and Spring arriving not a moment too soon!
Dx 7/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/22/2018 Lumpectomy: Left Hormonal Therapy 9/14/2018 Radiation Therapy 9/30/2018
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Mar 6, 2019 04:54AM Ingerp wrote:

GH--the weather is making me cranky too, although allegedly once we're through this week, we're supposed to get warmer-than-average temps for the middle of the month. Fingers crossed winter doesn't return after that. (Although I'm the first to complain when it gets too hot. . . ;-) )

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Mar 6, 2019 06:25PM Dani444 wrote:

I took my first full dose just a few minutes ago. I have to be honest I have a lot of anxiety about it. And I am just generally pissed. I feel like this medicine is starting to affect my mood and demeanor. And this fatigue is sucking the life out of me. I have to force myself to get up and do anything, which is what I have been doing. But it is getting mentally exhausting. I will wait and see how this full dose plays out over the next few weeks. Is it going to be impossible to ever feel like myself again??? I barely made it out of the grocery store the other day before the random tears started, prompted by walking down an isle that contained a display of socks....covered in pink ribbons 🙄. Also I keep getting hit with random stomach issues and generally feeling unwell. I am sorry for being such a downer but I needed to share this. I feel some of the people around me just see that I am done with active treatment and expect that I should just be moving on. Maybe that’s what i should work on. I want to feel grateful there is a drug that can help decrease my risk of recurrence instead I Am just resentful that I need it. I will end my rant/meltdown now

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 6, 2019 06:48PM PurpleCat wrote:

Dani, I could have written this myself except for the pink sock moment, and that's not to say I haven't been hit by random tears, just that pink socks haven't been one of the things that prompted them, and that's probably only because I haven't actually seen any pinknoxiousness lately. So true about trying to be grateful for the drug while hating having to take it and wishing none of it had ever happened. And the moving on part ... yeah. Unless they've been through it themselves or know someone who has, a lot of people have absolutely no idea we're supposed to take these live-changing drugs for five years. Many of those I've told have responded with real shock. Even most of the women I've met who have had breast cancer have not taken tamoxifen. I know one person who's taking AIs, and that's it. So it's not something people generally understand and are aware of, like insulin or blood pressure meds, and it's scary to be at the beginning of something we know is going to be life-altering and we don't know exactly how. So, vent away! That's what this board is for! (And on a related note, to whoever it was who recently posted something I can't find back apologizing for sharing Too Much Information, I also think there is no such thing as TMI on this forum, because that's why it exists!)

rljes, the dosage on my version of magnesium glycinate is 400 mg per day.

I think a whole bunch of us will start feeling better when spring arrives. That's my hope, anyway!


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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Mar 6, 2019 07:39PM Michelle_in_cornland wrote:

Reading through some of the comments, and lifting those up in thoughts and prayers that need it. We will get through this time in our lives, and enjoy every day along the way. The longer you take Tamoxifen, the more adjusted that your body will become. You will be amazed at what you can do, with a positive outlook. Hugs to all.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Mar 6, 2019 08:21PM - edited Mar 7, 2019 09:04AM by PebblesV

Dani / purplecat - I’ve had those random crying moments too. We are going through a LOT. We are all fighting for our lives and we try to stay so strong and soldier on that people forget sometimes. Totally OK for it to catch up to you and feel it!

All ladies - I had my first post-treatment follow-up with my oncologist today. I was so nervous on the drive over I had to call my husband who helped reassure / relax me. I know you ladies can understand, every little pang I got in my body on the drive over opened itself to 'what if' thoughts. Happy to say post-appointment though it all went well! Today is good, today the breasts are good, had the official examination and it's a thumbs up and nothing scary there. What a relief!

Also we had a good discussion re: 10mg vs. 20mg AND MY MO IS FINE WITH ME STAYING ON THE 10MG DOSE FOR THE NEXT FEW MONTHS - POSSIBLY FOR THE NEXT 5 YEARS IF I WANT TO.

That was the biggest deal to me because I was apprehensive that he might insist I go to the 20mg dose and stop prescribing me the 10mg option. But you know, he's logical and flexible, and I guess he'd prefer me on 10mg vs. nothing at all, especially since I seem to be tolerating it really well so far. He knew of the latest study on 5mg and other smaller studies on 10mg being just as effective, and was not against it if I wanted to stay on 10mg, but also expressed his feeling that because 20mg is the dosage that's been proven to work, his goal is to cure me with what he knows and not to experiment on me and 10mg is just an unknown right now. He had a lot of respect for my Dad's opinion however (they are both Kaiser doctors) so when he learned my Dad feels I should be on the 10mg dose (according to my Dad it's because I'm half the size of the average American women and so if he were treating me that's the dose he'd prescribe), he actually said he was OK if I wanted to do that based on my Dad's advise.

WAY more flexible and open to my opinions and thoughts than I anticipated, I feel so relieved and also happy to have a flexible MO. And he and I agreed to a plan as I'm not wholly opposed to 20 mg, if I'm tolerating 10mg well I might be fine on 20mg. But I still want to lose at least 10 more lbs (I've lost 30 lbs since starting this journey) and tamoxifen makes it much harder to lose weight, and I'd feel better starting 20mg if I needed to just maintain weight vs. lose. So we mutually agreed for me to stay on the 10mg dose for the next few months until I see him again which will be in June, where I also intend to lose those last 10-15 lbs over the next few months, and then we can discuss whether I should try 20mg or not!

I actually feel like celebrating! If you can, go in with a plan for yourself, always advocate for yourself, and good doctor's like this one will be on board. He was fine if I just wanted to stay on 10mg, but I think I might try 20mg based on what he said, so I value his opinion too. And he said if I try 20mg and can't tolerate it, we just go back to 10mg.

So there you have it! For all of us waiting for Spring, here's a throwback photo of Domino, Kit Kat and Tucker in the Springtime (PS it's raining hard today in CA so just going to enjoy the flashback photo to warmer weather).

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 7, 2019 03:33AM Ingerp wrote:

Dani et al.--I think part of it is how daunting the idea of five (or seven or ten) years is. I was thinking this week that I've been on the full dose for three months now. . . out of five years. It just sounds like forever compared to surgery/chemo/rads. We measured all of those in terms of days or weeks. It's also making me feel a little old because I was taking zero prescription medications until the AI. And I think many of us have a little SAD this time of year. We're allegedly in our last week of cold weather on the east coast--warmer weather/longer days/getting outside more has *got* to help, right??

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Mar 7, 2019 03:43AM GreenHarbor wrote:

Dani, you're welcome to rant anytime. That's what we're here for! I hope I speak for everyone on this thread when I say it's OK (and even encouraged) to be honest about what you're feeling. There are days I feel like I don't know who the new “me" is anymore. Most of the time I'm grateful to take that small white tablet each morning. Some mornings I don't like being one of “those people" who take a daily prescription. Until I was diagnosed, I hadn't taken prescription anything for at least 10 years. Keep in mind that tamoxifen has brought you to the wonderful world of menopause. Some of your fatigue and emotional changes could be from that. And I think I remember you mentioning that you work in a hospital ER. That must be physically and emotionally demanding. I'm not minimizing anything you're experiencing at all, just trying to help you find an explanation. Sending you a hug!

Pebbles, I am so happy for you that the appointment with your onc went so well! Yahoo!! The doctors in our lives can give us recommendations based on their years of education and experience, but each of us have to do what we feel is best for us. As always, your canine crew brighten my day.

To everyone else, I send a friendly wave and my thanks for the friendship and support on this thread. I look forward to checking in with you all each morning!

Dx 7/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/22/2018 Lumpectomy: Left Hormonal Therapy 9/14/2018 Radiation Therapy 9/30/2018
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Mar 7, 2019 04:44AM - edited Mar 7, 2019 04:44AM by Salamandra

Pebbles I'm so glad!! I wish more doctors realized that if we felt like they were really listening to us, we'd be a lot more likely to listen to them too.

RobinLT - That mental fog sounds terrifying. I hope that you can find a therapy that works. I've noticed that my ADHD has gone off the chart in the last month or so. Like, forgetting to flip my time card at work, leaving something behind every time I change classrooms (like 5x per day), losing attendance sheets, forgetting whether I've already brushed my teeth or not, standing in the shower wondering whether I already shampoo-d, trying to show up for a meeting two weeks early, forgetting that I remembered to pack Advil, etc etc. I had been on wellbutrin for a while and went off of it to take tamoxifen. My mood has been good on the alternate antidepressant (lexapro) but now I'm wondering whether the Wellbutrin had more of a positive impact on the ADHD than I gave it credit for (I didn't get my diagnosis until after years on Wellbutrin for depression), and wondering if I should increase my Ritalin dose. But now I'm thinking maybe it's a side effect of the tamoxifen? I don't know. It's pretty disconcerting. Like, none of it is completely out of character for me, it's just amped up to a level that's practically caricature. Anyway, welcome to this great thread!

Pebbles - maybe we should diet together! That might help me stay on track! One hard thing for me is that I have a very hard time eating a real meal during the school day, so I've been tending to eat a big breakfast and a big (early) dinner, but just snacking through the day. Those big meals aren't great for heartburn. The article was helpful. I stocked up on ginger stuff and found a ginger drink that seems to actually help a lot. And today I'm eating three bananas for breakfast... To be honest I wouldn't mind at all losing some weight - I've gained about 30 pounds in the last 4 years. But I don't think I have the will power to focus on two eating goals at once and I have historically struggled with mild bulimia so I try to be very careful about dieting. And of course, Domino, Tucker, and KitKat are always a highlight. I had a dream last night I tried to take my cat for a walk but she was panicking and trying to run out of the mall on her leash. Dreams are so strange.

Michelle_in_cornland - what beautiful faces! They are lovely individually and such a sweet matched pair!! I feel like I should see them in a cartoon. Also what a good tip about the intervals for tamoxifen. Did you start out like that or did you switch to it? How do you think it's beneficial? I'm wondering if somehow splitting it up might help my stomach deal with the load. Unlike Pebbles I'm a fairly sturdy size woman, more like average American man size than woman size - 5'8 (ok maybe 5'7.5), almost 200 pounds, so I'm a bit more wary about just going down to 10mg, but splitting it sounds like maybe a promising way forward.

OTMom - good luck with the Lupron! Do you inject yourself or you have to go the doctor? Is it in the skin (like the little ones I did during egg freezing) or to a vein?

rjles - I'm sorry you have yet more toughing things through ahead of you. I keep thinking, 'so when do I get to the easy part?' I'm trying to be grateful for the ways that my life is already kind of simple (the benefits of being single with no kids, though I really want to try to be more proactive about dating) and secure (thank goodness for good health insurance and a job where I don't have to be pretty). And also. BOOOOOO to your pharm oncologist and YAY to you for asserting yourself. I hate when doctors want to use their power *on* us instead of *with* us. I think doctors really need to have a lot more support with human skills, and not just tons of praise thrown at them for being good at memorizing and tests.

PurpleCat - Thank you! I think coffee needs to go, or at least switch to cold brew, for me as well. But argh. I need to lay in on some headache meds first! I found this ginger drink (actually much much cheaper at a store in my local Chinese neighborhood than on Amazon) and I think it's helping a lot. It is somewhat caloric, but I think it's helping me get through the long morning and school day before I can eat my real meal in the late afternoon/early evening. I'm sorry about the additional symptoms, but glad that at least you're not having to deal with worse migraines now. I also had an experience of getting a hot flash and thinking, hey, I can just step outside into the glorious cold weather and feel great! We've had sunny cold the last couple of days in NYC which is my preferred type of winter weather. I don't mind 25 degrees F when the sun is shining and the sky is crisp, reminds me of home home (Montreal). I hate the rainy gray where you're always either too cold or sweating. For my mood, I really think that the lexapro and sam-e I'm taking are doing great things for me. I suspect that the sam-e is also helping with some of the joint aches. Also totally feel you on people not understanding that life doesn't snap 100% back to normal after radiation ends. I feel like even my breast surgeon gave me that impression. But I think my body and definitely my mind are still healing from the trauma of surgery and radiation, even apart from the ongoing adjustment to and impact of the tamoxifen that will be part of my life for probably/hopefully 10 years.

GreenHarbor - Oooh that's a cozy picture! Stay warm!! I've had the panic about mets too. For a couple of days in a row I woke up really achy in my arms and shoulders and started imagining things. I think then I just ran out of energy for dealing with my imagination or anything beyond real life. Work takes pretty much everything I've got now just to do 'good enough'. Luckily, when I can do good enough, it's also pretty fulfilling and stimulating. But I miss having energy for a full life.

Ingerp - Haha, I feel you. Too cold, too hot, why can't it just be right! The climate in my school (where I work) is like that. Either it's a sauna in the classroom or it's the arctic. How the hell do you dress for a day where you have like 8 micro climates randomly switching???

Dani - Congrats on your first full dose! I feel you on the fatigue. I feel like I have just enough energy for work but almost none for anything else. I'm trying to be easy on myself but it is frustrating. And I feel like people in my life mostly think, oh great, she's done with treatment now, she's fine. But in some ways, everyday life stuff is more difficult now than when I was doing radiation but on leave from work. Doing laundry feels like feat and a victory. Don't worry about being a downer! We're here to share and commiserate!! And it's ok to melt down sometimes! Even in public!! As long as we are not endangering ourselves or others, we don't have to sanitize our experiences and emotions for the comfort and convenience of others!! I think it's one of the most pernicious things we are taught as girls. What I'm telling myself now is that I'm going to try to address the tamoxifen symptoms as best I can, and give my body about a year and a bit before I make any decisions about coming off of it ( barring anything really debilitating). I've heard from a colleague that she felt like her body adjusted a lot after about a year. But now I'm thinking based on Michelle's post to try to ask my doc about splitting the dose. And if some of my stomach stuff doesn't ease up, *maybe* even trying the the half dose for a while. Trying to think of this as a marathon and not a sprint.

Wised - I know you said you were stepping away a bit. If/when you stop by, just know I am thinking about you and grateful for your participation and leadership here! And hope you are very well!

I could probably keep going even though this is a novella already, but darn it I have to go to work. I'm so tired :( I really hope I don't get observed today!!

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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