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Topic: FEMARA

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 31, 2008 01:22PM - edited Nov 15, 2017 02:04PM by Moderators

nanna wrote:

I STARTED TAKING FEMARA ABOUT 2 WKS AGO. WHEN DOES THE SIDE EFFECTS START TO KICK IN

Edited by Mods to add content from the main Breastcancer.org site on Femara: Benefits, Side Effects and More

Dx 6/27/2008, ILC, 1cm, Stage I, Grade 1, 0/1 nodes, HER2+
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Jun 12, 2018 10:20PM gkbuser wrote:

Okay ladies I'm needing some help/ dvice figuring things out. Anyone been on letrozole and zoladex? I've been having bone and joint pain so bad various areas of my body. I finally called and made an appointment with my oncologist yesterday. She wants me to trial off the letrozole and then see if things get better. But I can't help but think that it is the zoladex shot that's causing at all. She seems less willing to trial me off of that. She thinks it's more the letrozole that's the problem. The only reason I think it's the zoladex is I started the zoladex two months sooner than the pills and joint pain started with the shots.. I am going to be 53 in July so I'm thinking I'm probably a natural menopause. Anybody out there had this situation? Can you talk me through how the doctors decided when it was okay to trial off the zoladex and how you did that? What did that look like? timing of blood tests Etc? thank you all

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 12, 2018 10:35PM Lula73 wrote:

it may just be the lack of estrogen causing it, and not the drug, per se. It’s worth seeing if discontinuing the letrozole at least temporarily helps at all. If so, then you could maybe try one of the other AIs. Have you tried taking curcumin/turmeric for the pain?

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 12, 2018 11:19PM gkbuser wrote:

no havent tried tumeric. How much is recommended? I am willing to try anything.

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 13, 2018 05:38AM 2FUN wrote:

when I first started having joint /muscle pain on letrozole my octo told me to.take glucosamine and chondroiton and that helped for a while

Hormonal Therapy Surgery
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Jun 13, 2018 08:20AM gkbuser wrote:

just wondering if anyone was on letrozole & zoladex and found that joint pain got better after finally getting off the zoladex and taking letrozole only. I just can't buy it that it's the lack of estrogen and menopausal symptoms. I know so many women that have been menopausal for years and they don't suffer like this. 101 year old lady that can get up and down, and rake leaves. Doesn't suffer near like I do.

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 13, 2018 08:42AM Lula73 wrote:

Gkbuser- it really can be the lack of estrogen. The post menopausal ladies you’re referring to still have what amounts to 20% of their pre-menopausal estrogen still being made by the aromatization of androgens that are released from their adrenal glands and converted to estrogen in their body fat. We on the other hand do not. The zoladex shits down your ovaries eliminating that source of estrogen. The letrozole prevents the aromatization process from happening. So you effectively have 0 estrogen. Not everyone has the muscle/joint pain (but it seems like most have some degree of it), everyone’s level of muscle/joint pain is different with a range of debilitating down to very minor. If you come off the zoladex, the letrozole won’t offer any measurable protection for you as it’s only addressing approximately 20% of your overall estrogen production while your ovaries will begin pumping out the 80% like normal. Your only option then is tamoxifen which has a higher recurrence rate than your current regimen. If I remember right the difference is 13% less chance of recurrence someone please correct me if I’m wrong)

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 13, 2018 10:54AM Nancy618 wrote:

Letrozole caused me to be jittery and made my sleeping issues worse so I take it in the morning.

The Fem-dophilus is a very small tablet.

I haven't had reflux from the letrozole, but I take one tums at night both for the calcium and because I take ibuprofen.

I tried the CBD oil and it made me hyper, which I read afterward can happen with small dosages. I now put it in lotion and use on my achy legs and hips. It was working but the last 2 nights I've had leg cramps and hip pain again

Oncotype 14 Philippians 4:13 Supplements: 500mg calcium, 500mg magnesium, 3000IU Vit D3, , 800mg Turmeric, Multi-Vitamin, Femdophlius, Align Dx 3/6/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/16/2017 Lumpectomy: Right Hormonal Therapy 5/5/2017 Femara (letrozole) Radiation Therapy 5/24/2017 Whole-breast: Breast Hormonal Therapy 6/20/2017 Arimidex (anastrozole) Hormonal Therapy 12/25/2017 Aromasin (exemestane) Hormonal Therapy 4/24/2018 Femara (letrozole)
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Jun 13, 2018 11:28AM gkbuser wrote:

Oh ok, I get what you are saying Lula. So, my estrogen level could in fact be lower than the 101 year old woman? LOL Do you know, would that include if I am indeed post menopausal without the zoladex? I mean does zoladex provide any extra protection for post menopausal women? maybe there are "stages" of menopause? I have a hunch that I could be naturally post menopausal as I am going to be 53 in July. Maybe I could safely come off the zoladex is what I am thinking. But, I would stay on it and tough it out if it was better for keeping the cancer away. It was unclear when I was diagnosed at 51 if I was naturally post menopausal or not due to being on continuous hormones (birth control that I took continously without doing the placebo week) since 2002 to treat sever endometriosis. wondering if I could come off zoladex. She seems more welling to do a break from the letrozole for about 4 weeks and see if my body will reset than talk about going off the zoladex. She would like to see me stay on the zoladex until I am 55. I find that very daunting as I feel like I barely have handled the last 1 1/2 years on it.

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 13, 2018 12:53PM marijen wrote:

gkbuser, try to check drugs.com and Ask A Patient on Zoladex. Drugs.com lists bone, joint, muscle pain as rare side effect but you may be one of the rare ones. There is also the Professional Tab you can check. It may just be overkill for you to take both drugs. Ask a Patient gives you personal experience by others on Zoladex. Or you can find that here. I believe our normal levels of hormones are unique, therefore cutting them back may put you at lower levels.

I had to quit Letrozole because it affected my eyes and the pain became unbearable. That was after I couldn’t get Roxane Labs and had to go to Breckenridge ( made in India ) or Accord. Also tried Teva, it was no better for me. Good luck.


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Jun 13, 2018 01:49PM Lula73 wrote:

gkbuser-yes, I’d bet $100K that your estrogen level is lower than that 101 year old woman’s level. Just a thought...have you considered just removing your ovaries and taking them out of the equation altogether? If you were to take a break from one of the two meds, I’d do the letrozole first too. You’ve got 3 other AIs you could try as well. Have you tried different brands of letrozole like marijen mentions at the end of her post above? The fillers are different manufacturer to manufacturer and can cause SEs all on their own.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 13, 2018 02:10PM marijen wrote:

Non-active ingredients for any medicines are listed at https://dailymed.nlm.nih.gov/dailymed/



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Jun 13, 2018 04:14PM gkbuser wrote:

marijen, funny you should mention that. My pharmacy just got bought out and will be switching from accord to breckenridge. I haven't done so well on the Accord brand. How did you find out they were made in India? When I tried to look them up I thought it said they were made in America? lula, I thought about it briefly. Wasn't really crazy about more surgery at that point. So I let that idea go then decided to just do the zoladex for a few years. Bone pain is clearly listed under the side effects side effects for zoladex. Which is why I'm so confused as to where my uncle thinks that it's probably more the pills. My Gynecology doctor said they also use it quite a bit too and get a lot of complaints of joint pain from it.

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 13, 2018 04:31PM - edited Jun 13, 2018 04:36PM by marijen

India - CP418 posted this article:


https://in.reuters.com/article/usa-india-genericdr...

Here is the BCO topic


https://community.breastcancer.org/forum/73/topics/819275?page=1#post_3948189


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Jun 13, 2018 04:42PM marijen wrote:

Something I didn’t think about was asking for the Femara Brand instead of generic. But I’m fine not being on it at all. It’s interesting to me that we are supposed to take it for five years and at five years is when the possibilityof ER positive recurrence increases. There is also a point where for some of us it becomes ineffective anyways. Taking a break is not a bad thing.

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Jun 13, 2018 08:45PM gkbuser wrote:

marijen, do you know where the brand Femera is made?

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 14, 2018 12:06AM Nancy618 wrote:

My MO said it's fine to take a 2 week break if the side effects are bad or when changing from one AI to another. I figure it's better than not taking it at all. And that 2 weeks seems to do a kind of reset for all the SEs. I'm thinking of doing it on vacation because I'm not very active. I do a lot of sitting... In the pontoon, on the pier reading or on the couch crocheting. My pain is the worst when I'm inactive and stiff.

Oncotype 14 Philippians 4:13 Supplements: 500mg calcium, 500mg magnesium, 3000IU Vit D3, , 800mg Turmeric, Multi-Vitamin, Femdophlius, Align Dx 3/6/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/16/2017 Lumpectomy: Right Hormonal Therapy 5/5/2017 Femara (letrozole) Radiation Therapy 5/24/2017 Whole-breast: Breast Hormonal Therapy 6/20/2017 Arimidex (anastrozole) Hormonal Therapy 12/25/2017 Aromasin (exemestane) Hormonal Therapy 4/24/2018 Femara (letrozole)
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Jun 14, 2018 01:13AM marijen wrote:

Brand Femara is manufactured by Novartis. I don’t know if they farm out production.

Located in East Hanover, NJ, Novartis Pharmaceuticals Corporation is an affiliate of Novartis which provides innovative healthcare solutions that address the evolving needs of patients and societies.

Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, cost-saving generic and biosimilar pharmaceuticals and eye care. Novartis Group companies employ approximately 118,000 full-time-equivalent associates and its products are sold in approximately 155 countries around the world. For more information, please visit http://www.novartis.com.

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Jun 14, 2018 06:43AM 2FUN wrote:

my MO recommended a 3-4 week break between AI s

Hormonal Therapy Surgery
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Jun 14, 2018 08:50PM lala1 wrote:

gkbuser--I took turmeric for 4 of the 5 years I was on Tamoxfen and I can say it changed my life! The first year was pure hell with the joint pain. Once I started turmeric, I never looked back. Did my T-time easy peasy. (mostly!) My holistic doctor told me to take Gaia Turmeric. It's sourced out of NC and he thinks it's more "pure". This is how he said to take it:

Buy Gaia Turmeric extra strength. I get it from Amazon but you can also get it from Vitamin Shoppe. The capsules are 500mg. He said take 1 a day for a month. If you get improvement, continue taking 1 a day. If you don't, up your dose to 2 a day for a month. If no improvement then it's not going to work for you. If you do get improvement, keep taking 2 a day for another month, then reduce down to 1 a day over the next month and stick with that unless pain comes back.

I put my dad on this when he was looking at knee surgery after he had to give up golfing, skiing, hunting and running. He's 82 and retired so he has lots of "activity" time! I checked in with him 2 months after he started it and asked him if it worked. His response was "It worked so well I played 5 straight days of golf last week!" He thinks it's a miracle drug! And he's a retired doctor who thinks supplements are "stupid"! Not anymore! He's a believer!

Sorry for going on so long. I am just a big believer in turmeric myself!

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 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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Jun 14, 2018 09:42PM - edited Jun 14, 2018 09:47PM by gkbuser

wow lala, thanks definately going to do that! Is this it?

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 14, 2018 10:04PM lala1 wrote:

gkbuser---That's it!!

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 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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Jun 15, 2018 01:52AM marijen wrote:

gkbuser someone just started a Zoladex/Femara thread except she spelt Femara wrong.


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Jun 15, 2018 07:21AM gkbuser wrote:

ok thanks

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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Jun 16, 2018 11:24PM HoneyBeaw wrote:

Lala

I though you have to take with pepper for it to be effective. You did not mention that. so guessing your just taking it as is and its working well for you . .

I have been a little worried to take to many supplements . I was also told B complex was good for the joints but can not find any information if it would interfear how effective the Letrozole is , Any advise would be appreciated

Surgery 11/27/2016 Lumpectomy: Left Dx 12/5/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 12/25/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 1/15/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 17, 2018 09:58AM lala1 wrote:

HoneyBeaw---the Gaia turmeric has the black pepper already in it. It's one of the reasons it was recommended to me. I asked my holistic doctor about B complex and he wasn't very keen on it. He said B vitamins in higher amounts can be detrimental and most people already get enough. As to joint pain, he didn't think B helped with that. I take turmeric, ginger, olive leaf extract, probiotic, magnesium, Vit D, fish oil and a multi vitamin. All these I do daily and then I take a baby aspirin 3 days a week....more than that I get too many bruises. I had a tough time when I started Tamoxifen and with this list I got through my 5 years pretty easily.

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 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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Jun 17, 2018 10:30AM nonomimi5 wrote:

Lala, that's a lot of supplements but it makes sense. What kind of multi vitamins do you take? Can you recommend one? I am only taking Vit D, and Calcium Mag Zinc b/c I am doing rads, but also can take multivitamins. When I am on AI, I'll take what you're taking.

Dx 3/23/2018, DCIS/IDC/IDC: Tubular, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 4/30/2018 Lumpectomy; Lymph node removal Radiation Therapy 5/28/2018 Breast Hormonal Therapy 7/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 17, 2018 12:02PM - edited Jun 17, 2018 12:09PM by Clynnejohn505

SoI'm just over a month on femara. Weird aches and pains in random places still. Just started with seconds of dizziness. Anyone else have this? If so, any tips? I know it's listed as a side effect but it's comforting to hear from others.

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Jun 17, 2018 01:47PM PatsyKB wrote:

I so appreciate this discussion...I'm only on day 6 of Letrozole, so too early for side effects. But waiting.

“I told her once I wasn’t good at anything. She told me survival is a talent.” - Susanna Kaysen, “Girl, Interrupted” Dx 4/10/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 5/7/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 5/23/2018 Multi-catheter: Breast Hormonal Therapy 6/12/2018 Femara (letrozole) Surgery
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Jun 17, 2018 04:38PM - edited Jun 17, 2018 04:40PM by Lanne2389

PatsyKB - my side effects started on day 2, here's hoping you are lucky and yours are mild or nonexistent ! Lanne

Lanne Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/3/2017 AC + T (Taxol) Surgery 6/14/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/8/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/15/2017 Femara (letrozole) Surgery 7/17/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jun 18, 2018 09:36AM gkbuser wrote:

Lala, got my gaia tumeric yesterday! Hoping it helps me.

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast

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