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Topic: Doing Well on Aromatase Inhibitors (AIs)

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

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Apr 22, 2017 06:51AM - edited Nov 15, 2017 11:09AM by Moderators

Butterfly1234 wrote:

I read a suggestion that someone should start a topic for women who are NOT experiencing severe SEs while taking Arimidex, Femara, or Aromasin. I'm about to start taking Arimidex and when I read about the potential SEs I get discouraged. Maybe others would also like to hear about positive experiences. We would love to hear from you!

Edited by Mods to add content from the main Breastcancer.org site on:

Aromatase Inhibitors

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Aug 4, 2017 01:11PM Tappermom383 wrote:

Scrafgal - sounds like you're approaching AIs with a great attitude! I've avoided reading a lot of the negative comments. I started on anastrozole on July 17. So far, so good! I had read that the Teva brand of the generic Arimidex produces fewer SEs so I asked my pharmacist to get that for me, which she did. I also read that Claritin helps with some of the aches and pain. Since I had some (Costco brand) in the cupboard, I've been taking that. Don't know if it's making a difference or not but I figure it can't hurt!

Best of luck as you finish your chemo and get started on the next leg of this unasked-for adventure!

MJ

Diagnosed at 70 after four excisional biopsies over the course of 47 years. MammaPrint came back Low Risk. DexaScan: osteopenia. Cancer removed was 1.8 cm. Dx 3/23/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/31/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 5/22/2017 Whole-breast: Breast Hormonal Therapy 7/17/2017 Arimidex (anastrozole)
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Aug 4, 2017 01:22PM Butterfly1234 wrote:

Scrafgal - welcome to our thread. As I posted above I've been taking Armidex name brand since May 9. My worse side effects are a sore right toe and achy right thumb. All manageable and I'm not complaining. I exercise regularly and some of the achiness is from that.

Take it one day and pill at a time, we are here to provide support. Gentle hugs all.

Medicating

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Aug 4, 2017 01:35PM 2FUN wrote:

My BS said she has a number of patients that took glucosamine to help with joint aches, so I am going to try that.

Hormonal Therapy Surgery
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Aug 4, 2017 02:15PM Butterfly1234 wrote:

what dosage of glucosamine?

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Aug 4, 2017 10:47PM ReginaZ wrote:

Just wanted to chime in to say 'so far so good' on the Anastrozole. I've been taking it for over 4 months and no side effects. The first month I had some PMS-type mood swings, but they went away. I take a generic (not Teva). Keeping my fingers crossed that this continues, as my MO tells me it cuts the risk of recurrence by 30-40 percent

We are not human beings having a spiritual experience, we are spiritual beings having a human experience Dx 2/2/2017, IDC, Right, 1cm, Stage IA, Grade 2, 1/7 nodes, ER+/PR+, HER2- Surgery 2/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Hormonal Therapy 3/23/2017 Arimidex (anastrozole) Radiation Therapy 4/13/2017 Whole-breast: Breast
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Aug 5, 2017 12:35AM ChiSandy wrote:

I have a whole bunch of Alegrias. I do have to be careful to pad any sharp edges with molefoam, as I have very sensitive feet and blister at the drop of a…shoe. I’ve also found Vionic shoes to be comfy and affordable. But I’ve gotten five to seven years out of my Finn Comforts without needing a resole.

Been 18 mos. on letrozole, and the SEs have remained level. Developed triggering in another finger, but it doesn’t affect me so I’m not going to risk an LE flare with another cortisone shot, much less surgery. Hard to distinguish OA from AI-induced joint pain, but regardless of the cause, I treat it the same. I have developed mild anemia, detected by my PCP as a pattern of declining hemoglobin over the past two years (my last normal result was my pre-lumpectomy bloodwork), for which they still haven’t found a cause. Had an EGD yesterday, but it showed only the hiatal hernia I already knew I had (and the erosive lesions from four years ago, likely from overusing NSAIDs after my knee replacements, are gone so NSAIDs are no longer verboten). They’ll 'scope the other end (ugh) in a few weeks, but since my RBC & WBC are normal despite low ferritin levels, whatever the cause the treatment is the same: iron & vitamin C. Oddly, it’s asymptomatic—no fatigue or shortness of breath. LDL-C spiked, but a statin reversed that. So I’m chugging along, working out and trying to resist sugar (easier said than done) to keep from gaining more weight (I lost 5 lbs. since joining the gym, but I still wince in shock at my reflection in store windows—why do we always seem to look thinner in mirrors)?

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 5, 2017 05:32AM MickeyB17 wrote:

Hi, I'm starting AI after radiation finishes this month - apx 9/1. So appreciate these posts because women in need of support reach out when having difficulties (understandably) - but can be unsettling to those of us at the start. I can be a master at anticipating worst case - oddly - it's how I prepare myself. I've found with BC - this is not a good strategy... What a journey we are all on. Bless us!

Dx 4/10/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (IHC) Surgery 5/22/2017 Lumpectomy: Right Surgery 6/22/2017 Radiation Therapy 8/1/2017 Hormonal Therapy 9/1/2017
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Aug 5, 2017 05:50AM - edited Aug 5, 2017 05:51AM by ruthbru

Do NOT spend time reading the negative 'worse case scenario' threads!!! Be glad it's an option (our triple negative friends would be thrilled if there was something they could take after the initial treatments to lower the risk of recurrence!!!!); go in expecting that you will be fine, and deal with SE when and IF they occur. Also remember, you are starting an AI right as you finish 'active treatment', so some of the problems ladies attribute an AI are actually post-treatment issues they would be dealing with whether they were taking an AI or not.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Aug 5, 2017 06:07AM MickeyB17 wrote:

ruthbru, you are correct. My MO said more or less the same thing. One other thing I started doing was to notice the normal aches and pains every day before I start, so I will not attribute everything to BC or tx's. Some of this stuff is gonna happen anyhow! And you are right about gratitude for this treatment. Thank you for the reminder.

Dx 4/10/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (IHC) Surgery 5/22/2017 Lumpectomy: Right Surgery 6/22/2017 Radiation Therapy 8/1/2017 Hormonal Therapy 9/1/2017
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Aug 5, 2017 06:30AM ElaineTherese wrote:

Well, I'm still feeling pretty good on my AI (Aromasin). I'm still working on my sleeping, and have reduced my alcohol in-take. But, I did my biannual dexascan, and it said I have full-blown osteoporosis. I was osteopenic when I started Aromasin, and osteoporosis runs in my family, but...... So, now I'm on Fosamax (my 6th prescription drug!). My MO says I will have to wait for my next dexascan to see whether the Fosamax is working unless I want to pay for another dexascan out-of-pocket.

Still, it could be worse. Happy to be feeling good and able to exercise daily. Yes, I'm grateful that we have all these treatment options!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Aug 5, 2017 06:52AM Scrafgal wrote:


Ladies,

Thank you for the warm welcome and for the encouraging posts!   I am really feeling better about the AIs and the possibility for a decent experience.  I really needed this thread.  Thank you, Butterfly1234, for starting this discussion. 

When I start AIs (in late September) I will have to let you ladies know how it goes!

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/5/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/21/2017 Taxol (paclitaxel) Chemotherapy 6/14/2017 FAC Hormonal Therapy 9/24/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/12/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/15/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/22/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
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Aug 5, 2017 07:42AM Tappermom383 wrote:

Great advice from Ruthbru! I wholeheartedly second it. It's all too easy to fill our heads with the negative and dwell on it. Thank goodness for Butterfly and her urging folks to share their positive experiences. I only have three weeks of Arimidex (Teva anastrozole) under my belt but so far, so good. I'm actually sleeping better; take it at night. I still wake up to pee but, instead of sitting up and reading for an hour, I go right back to sleep. I'm still feeling fatigued from my rads; my RO told me that could last six weeks and I'm not there yet.

Best of luck to you, soon2bretired, as you complete your rads and take this next step. We're all walking right beside you!

MJ

Diagnosed at 70 after four excisional biopsies over the course of 47 years. MammaPrint came back Low Risk. DexaScan: osteopenia. Cancer removed was 1.8 cm. Dx 3/23/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/31/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 5/22/2017 Whole-breast: Breast Hormonal Therapy 7/17/2017 Arimidex (anastrozole)
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Aug 5, 2017 08:17AM Goincrzy8 wrote:

I have been on Anastrozole since Feb. I take at night because it seems I get sleepy about half hour later. Like Tapper I wake up to pee, but go right back to bed. I was having some hip pain, I now take Glucosamine/chondroitin and a calcium-magnesium-d3. No joint pain. I still have some fatigue from end of Radiation which finished on July 13.

I am not sick, I have a few bad cells Dx 10/18/2016, IDC, Left, Grade 2, 12/12 nodes, ER+/PR+, HER2- Surgery 12/9/2016 Mastectomy: Left
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Aug 5, 2017 06:57PM Butterfly1234 wrote:

All very encouraging words and great advice. A heartfelt thank you to all with love.HeartMedicating

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Aug 5, 2017 08:17PM 2FUN wrote:

She said :what ever the OTC dosage is". Not too.much info!

Hormonal Therapy Surgery
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Aug 5, 2017 10:27PM Msjackiefan wrote:

I am on anastrazole for just over 4 years. I would say a few more joint aches and some memory loss I also attribute to being post- menopausal.


Dx 4/9/2013, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-
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Aug 6, 2017 05:10AM SusanGA wrote:

I am on Arimidex for 3 weeks and so far no problem. I take the brand. I take it in the morning and actually sleep better now. Good luck to al

Dx 4/14/2017, IDC, Right, <1cm, Grade 2, ER+/PR-, HER2- Surgery 6/14/2017 Lymph node removal: Sentinel; Mastectomy: Right Surgery 6/14/2017 Mastectomy Chemotherapy 8/24/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 6, 2017 08:03AM - edited Aug 7, 2017 05:48AM by JuliaJazz

Thanks everyone for your posts.  I will start Arimidex in mid-September and this thread really helps me to know what questions to ask my MO.

Dx 4/11/2017, ILC, Right, 2cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 5/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 5/16/2017 Lymph node removal: Right Chemotherapy 6/22/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/22/2017 Arimidex (anastrozole)
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Aug 6, 2017 08:36AM JuliaJazz wrote:

Thanks BosumBlues.  I appreciate the insight.  I guess I will give it a try and see what develops.

Dx 4/11/2017, ILC, Right, 2cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 5/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 5/16/2017 Lymph node removal: Right Chemotherapy 6/22/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/22/2017 Arimidex (anastrozole)
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Aug 6, 2017 09:20PM hippiegirl wrote:

Hi Everyone,

I too, am very glad that Butterfly started this! Reading how you guys are doing is giving me hope for when I try my own.

Hoping to hear more positivity from us!

HeartHippie Girl

Dx 2/2017, IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/27/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy
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Aug 7, 2017 07:08AM JuliaJazz wrote:

On the topic of hormonal therapy, one of the gals on another thread shared this link. It is an article about Dr Angela Brody who passed away last month.  She discovered the Aromatase inhibitor.  Her dedication & perseverance helped save many women lives. 

https://www.washingtonpost.com/local/obituaries/angela-brodie-scientist-who-helped-make-major-advances-in-breast-cancer-treatment-dies-at-82/2017/06/08/b3729a48-4c4e-11e7-a186-60c031eab644_story.html?utm_term=.cbe67526b64a


Dx 4/11/2017, ILC, Right, 2cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 5/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 5/16/2017 Lymph node removal: Right Chemotherapy 6/22/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/22/2017 Arimidex (anastrozole)
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Aug 7, 2017 08:32AM ruthbru wrote:

Thank goodness for people like Dr, Brody!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Aug 7, 2017 09:12AM NancyD wrote:

I started Arimidex almost nine years ago. I was switched to a generic version when they came out. Neither one has caused unbearable side effects.

I have arthritis in my hips that may have ben exacerbated by the AI, but since I haven't stopped taking it, I don't really know. Having been staged as 3A and highly er+, I don't think I'll chance it. A dose of ibuprofen takes care of the pain. That's been the worst of it for me, with a relatively easy fix



Life is good. It's not perfect. but it's good. Dx 2/22/2008, IDC, Left, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Chemotherapy 3/22/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/11/2008 Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 9/1/2008 Arimidex (anastrozole) Radiation Therapy 9/5/2008 Breast, Lymph nodes Surgery 1/28/2010 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 7, 2017 09:16AM coachvicky wrote:

Well ... I have been handling the brand name Arimidex very well.

Last couple of days, however, my knees have hurt. Then I remembered I ran at the YMCA Thursday for the first time in ages. The track just looked so appealing and challenging me to a brisk run. I usually just speed walk.

What was I thinking? I guess I wasn't thinking and I can't blame Arimidex! LOL

Coach Vicky

Dx 6/2016, DCIS/IDC, Both breasts, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH) Dx 6/7/2016, LCIS/DCIS/IDC, Right, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH) Surgery 7/11/2016 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/21/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/22/2016 Herceptin (trastuzumab) Surgery 1/20/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/22/2017 Prophylactic ovary removal Hormonal Therapy 4/4/2017 Arimidex (anastrozole) Surgery 10/19/2017 Targeted Therapy Surgery
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Aug 7, 2017 05:16PM JuliaJazz wrote:

Nancy and Vicky,  Nice to hear from both of you.  I have arthritis in my knees and hips so I imagine I will have some pain but glad to hear that it may be tolerable.  Have a great week.

Dx 4/11/2017, ILC, Right, 2cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 5/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 5/16/2017 Lymph node removal: Right Chemotherapy 6/22/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/22/2017 Arimidex (anastrozole)
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Aug 8, 2017 04:01AM 2FUN wrote:

I am almost a year on Femara, with a few episodes of not taking it, due to other health problems. I think one important thing to remember is ,as humans, we all need 60 min of physical activity a day. As women on AI meds, we really need that, including resistance activities, seeing as none of us are 20 years old.I feel so much better (maybe not any individual day. But cumulatively) when I am exercising at at least a moderate intensity, and consistently. I encourage you to just walk out your door snd back, especially if you have having AI difficulty. ( sorry, but not sorry for the soap box)

Hormonal Therapy Surgery
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Aug 8, 2017 06:08AM - edited Aug 8, 2017 06:08AM by ruthbru

I will enthusiastically jump up on the Exercise Soap Box with you 2FUN! Exercise is the absolute best thing we can be doing for ourselves, and for many reasons. It makes you look better, feel better (releasing the happy endorphins in your brain), makes every part of your body work better & decreases the risk of a long list of diseases and conditions, it can increase balance, slow down the effects of aging, it can help minimize the SEs of the AIs; and it is the number one non-medical thing we can do to reduce your risk of beast cancer recurrence.

If you want some exercise buddies, come over to The Lets Post Our Daily Exercise thread on the Fitness Forum and join us. A great group of ladies at all stages of treatment and beyond, and at all fitness levels too.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Aug 8, 2017 11:40AM - edited Aug 8, 2017 11:41AM by bareclaws

Um, it's getting crowded up here on this exercise soap box. No excuses. It's imperative for wellness and peace-of-mind...to know that I participated in my own treatment/recovery, whichever it turns out to be. No matter how awful I feel, it's always better after I spend some time sweating, heart pounding, gasping for breath. And knowing that cancer cells just hate it gives me vicious pleasure.

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Aug 8, 2017 12:43PM iatigger wrote:

Want to thank everyone for the not so negative side effect talk. After 4 1/2 years on Tamoxifen I was the lucky one to get the little mentioned side effect of endometrial cancer. Fortunately caught early and with the hysterectomy considered cured. But now that I am in forced menopause the onc wants me to go on Aromasin. But after the Tamox tried to kill me and reading the possible SEs with Aromasin just having a hard time making the jump. Have another few weeks of healing from surgery so will keep reading this post until I have to make a decision. Will start on the exercise parade with you all at that time as well. :)

Dx 9/17/2012, IDC, 1cm, Stage IB, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 10/15/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/30/2012
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Aug 8, 2017 12:46PM coachvicky wrote:

iatigger ... I am sorry about your other cancer and your recent struggle.

I struggled on 2 generics but with the brand name I can hardly that tell I take it.

Best wishes.

Coach Vicky


Dx 6/2016, DCIS/IDC, Both breasts, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH) Dx 6/7/2016, LCIS/DCIS/IDC, Right, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH) Surgery 7/11/2016 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/21/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/22/2016 Herceptin (trastuzumab) Surgery 1/20/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/22/2017 Prophylactic ovary removal Hormonal Therapy 4/4/2017 Arimidex (anastrozole) Surgery 10/19/2017 Targeted Therapy Surgery

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