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Topic: FEMARA

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

Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.

There are several hormonal therapy medicines, including, tamoxifen (Nolvadex, Soltamox), Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole).

Hormonal therapy is usually prescribed for multiple years. Common side effects include hot flashes, joint pain, fatigue, and bone thinning.

Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

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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Aug 12, 2019 08:25AM - edited Aug 12, 2019 08:28AM by gingerstx

I am in my 8th year on Femara/Letrozole. Although I'd continued taking it after my 5th year, last year I decided I wanted to stop taking any meds I didn't really need. To see if this med fit in that group, my MO suggested I take the Prosigna assay. It is performed on preserved tissue that was removed during the original biopsy or surgery and looks at the activity of 58 genes (called the PAM50 gene signature) to estimate the risk of distant recurrence of hormone-receptor-positive breast cancer from 5 to 10 years after diagnosis after 5 years of hormonal therapy treatment in postmenopausal women. Based on these activity levels, Prosigna assay results are reported as a risk of recurrence (ROR) score from 0 to 100 in two ways:

  • node-negative cancers are classified as low (0-40), intermediate (41-60), or high (61-100) risk
  • node-positive cancers are classified as low (0-40) or high (41-100) risk

My test showed a score of 67 out of 100 which placed me in the high risk category with an estimated 16% (range 11-22%) 10 year risk of distant recurrence outside of the breast and/or armpit area (eg lung, liver, bone etc). This estimate is different from that of the Oncotype DX score (7%) because the test's characteristics (it tests 50 genes) and the validation population are quite different. The Prosigna essay evaluates outcomes of endocrine therapy whereas the Oncotype DX tests the utility of chemotherapy (which I'd not had to have). Since I seemed to be tolerating letrozole well, and given these results, my doctor suggested that I remain on letrozole for 10 years. He also recommended continuing calcium and vitamin D supplements and that we monitor my bone density closely.


Ginger Dx 1/2011, IDC, Left, 3cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2- (FISH)
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Aug 12, 2019 05:11PM Simbobby wrote:

Hey Mavericksmom,

I have been on Femara for 1 1/2 years. I felt so fortunate not to have side effects that I too wondered if it was working. In fact, I asked my Oncologist if he had given me a placebo.

About two months ago, I noticed my hair thinning, a lack of energy, occasional UTIs, and what feels like arthritis. I can only attribute this to the letrozole.

I have an appointment coming with my oncologist coming up. Guess we’ll have to talk

Dx 9/15/2017, IDC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2+ Chemotherapy 10/9/2017 AC + T (Taxol) Surgery 3/29/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Dx 4/3/2018, Right, 24/26 nodes Hormonal Therapy 4/10/2018 Femara (letrozole) Surgery 3/12/2019 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 17, 2019 12:54AM - edited Aug 17, 2019 01:17AM by Jujibean

Help. I have been on letrozole for 8 months. My hot flashes and sweats have worsened over time. I think I can count on having at least 6 hot flashes and sweats per day, starting by noon, and always at bedtime. Does this ever go away? Or does it continue as long as I am on femara?

Treatment: Letrozole and Zometa (now have osteopenia)

Dx 8/8/2018, DCIS/IDC, Right, 3cm, Stage IIB, Grade 3, 2/9 nodes, ER+/PR+, HER2- Surgery 10/29/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy 12/26/2018 Femara (letrozole)
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Aug 17, 2019 05:23PM IDartist wrote:

kkayet:

I took Tamoxifen for 5 years and suffered terrible hot flashes, but overall, felt pretty food. 2 years ago, my Oncologist switched me over to Letrozole. The first year and a half wasn't too bad, though I was more tired than normal. Not exhausted, but where I felt I could sit and rest for a bit.

The past year I've developed joint/bone pains in fingers, wrists, knees, ankles, feet, etc. ,which my Oncologist said was typical of this drug. I try to manage with exercise and Advil, but it feels so difficult to move at times and she said most of the AI's have the same SE's.

The past week I started having discomfort in my right hip and lower back. Not pain, but tightness, aches. Thought it could be from lifting a few heavy items. I find it feels better when im walking, sitting/lying down seems worse. I slipped and fell on my backside 1.5 mons ago and havent had any pain in my back from that fall. Dont know if that can show up later or not.

I'm scheduled for my annual follow up with my Oncologist next month, so will ask her about it. It's so difficult to know what is normal to hurt and what isn't and when you should worry and when not to. I have aches all over, it's so hard to tell.

I'm trying to not let my mind freak out that its cancer, or anything serious.

I hope you are doing well!!




Dx 7/2012, IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/29/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/9/2012 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/17/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/20/2013 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/12/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/14/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 18, 2019 03:36PM - edited Aug 18, 2019 03:38PM by notarobot

Hello all I have a few questions I hope you might be able to answer, I just started taking femera 2 and a 1/2 weeks ago and the SE ,I think are definitely rearing their ugly heads. first some background.

diagnosed in feb 2019 ,was finanly able to get a double mastectomy done the end of may, prior to all of this my normally, very good blood pressure ( usually 114 ish over 70 my whole life) started to go wildly out of control 170 over 100 , i was placed on micardis bp meds and even with that it only dropped to about 140 over 80 .

then i had the surgery and my BP went really low. then stabilized to my former GOOD BP ,no medication needed.it just stayed normal.

now 2 and a half weeks into taking femera and I am getting headaches..so I started watching my BP again.. its reading 190 0ver 99, sat still for 5 minutes it only dropped to 149 over 89, this was just todays readings , ive been monitoring it for a few days now. anyone else had issues with BP while taking the drug?

also my last REAL period was in august of 2018.. then I had a very light one in feb 2019. am I even supposed to be taking femera? am I not premenopausal? I started spotting last week since I started taking the femera. I had a uterine ablation a few years back, but I still have my ovaries. Im afraid I am taking the wrong medication and also afraid I will stroke out. I also feel like Ive been hit by a mack truck, muscle aches and bone aches.I feel 90 not 53.Im tired all the time too.

sorry for running on, just wanted to put it all out there and hope that I can get some answers. I dont want to take a pill that might be harming me more than helping me. Thanks for your input!

Dx 2/3/2019, IDC, Left, 4cm, Stage IIA, 0/1 nodes, ER+/PR+, HER2- Surgery 4/14/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 5/30/2019 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/2/2019
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Aug 18, 2019 11:05PM IDartist wrote:

Has anyone here taking Letrozole experienced back and hip aches and pains? I'm not sure I would call it pain, but it is uncomfortable and worrisome, praying BC hasn't gone to my bones. What did they feel like and did you discuss it with your Oncologist?

I already experience joint and bone pain in every part of my body and now this. I've only been on Letrozole for 2 years, with 3 more to go and it feels like it will never be over.

Blessings

Dx 7/2012, IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/29/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/9/2012 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/17/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/20/2013 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/12/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/14/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 21, 2019 01:16AM - edited Aug 21, 2019 01:23AM by Jujibean

Notarobot: run don't walk to your dr. Yr bp is dangerously high. Femara is for postmenopausal women.

Dx 8/8/2018, DCIS/IDC, Right, 3cm, Stage IIB, Grade 3, 2/9 nodes, ER+/PR+, HER2- Surgery 10/29/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy 12/26/2018 Femara (letrozole)
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Aug 21, 2019 04:33AM Traii wrote:

IDartist

I've been on Letrozole only since Feb 19 due to Stage IV Dx to bone.

I didn't have any bone pain prior only sciatica but I was riddled with bone mets.

When I started taking Letrozole I had every bone pain I could think of and felt 90 not 41!!

If you've never had this kind of pain in these spots in the 2 years you've been taking Letrozole and its only recently started, I'd be having a discussion with your doctor to perhaps do a bone scan. It could be due to lots of different things. But put your mind at ease and speak with your doctor.

Stage IV 2nd Jan 2019 age 40 Dx 8/2012, IDC, 1cm, Grade 3, 2/10 nodes, ER+/PR+, HER2- Surgery 9/5/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 9/23/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 10/30/2012 Taxotere (docetaxel) Chemotherapy 1/1/2013 CMF Surgery 7/4/2013 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Hormonal Therapy 2/24/2019 Femara (letrozole) Targeted Therapy Kisqali
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Aug 21, 2019 01:39PM IDartist wrote:

Traii,

Thank you for your input and experience. I've told my doctor about my joint aches, etc, before and she told me unfortunately, most of these drugs all have the same side effects. So, I continued on.

I see her tomorrow for my yearly 6 mo follow up, blood work, etc., and will discuss it then. About 10 days ago I lifted our large table umbrella off of our patio table. 1-2 days later this ache started, so I could have strained my back, but wanted to let her know.

Blessings

Dx 7/2012, IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/29/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/9/2012 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/17/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/20/2013 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/12/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/14/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 21, 2019 10:08PM lala1 wrote:

MAM56--Yes, the BCI test is different from the Oncotype test. I believe the Oncotype is really geared toward the first 5 years after diagnosis and gives you the information on whether or not chemo would benefit. The BCI test is done on the original tissue (which is saved) and tells you if you would benefit from another 5 years of whichever hormonal treatment you are doing, i.e. Tamoxifen or an AI. My BCI test came back high risk of recurrence (but at the very low end) and no benefit from continuing Tamoxifen so I stopped. I had alot of trepidation about quitting but my MO and BS both pointed out that the POSSIBLE negligible benefit I'd get from continuing could be replicated if I would exercise regularly, eat decently (like a couple of serving of fruits and/or veggies a day and drop about 10 pounds. I've been exercising daily since my diagnosis so got that covered. I've dropped 15 pounds and am actively trying for another 10 so got that covered. I'm not a big fan of fruits and veggies so I'm struggling with that but doing ok all things considered. My doctors said those 3 things alone would lower my risk of recurrence by as much as 30-40% so I'm good with doing that instead of dealing with that stupid Tamoxifen!

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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Aug 21, 2019 11:32PM - edited Aug 21, 2019 11:34PM by MAM56

lala1 ~ Thanks for the info. My ONC never mentioned the BCI test. It is very frustrating because I tolerated Tamoxifen well for the 5 years I was on it. ONC switched me to letrozole one year ago and wants be in it for 4 more years. I've had a variety of unpleasant side effects. I'm going to ask for the BCI test so I can make some educated decisions.

The fact that your MO and BS feel diet and exercise play such a large role is interesting. It sounds like you have a good team, not just pill pushers!

Keep up the good work! I wish you well



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Aug 22, 2019 09:25AM lala1 wrote:

MAM56--I had a total hysterectomy 2 years into my Tamoxifen journey due to a thickened endo lining. I was totally ok with it because I don't have kids, won't have kids and was cool with not having periods anymore. When I asked my BS and MO if I would need to swap to an AI (I assumed I would which is why I'm on these threads), they both said "Heck no!" They said I was doing just fine on Tamoxifen which I what they all hope for and saw no reason to swap to something that most likely would cause me more problems with only a small amount of benefit. My BS said he has too many women drop therapy all together when he swaps them so unless they are getting a significant benefit he lets them stay on Tamoxifen, especially if they are doing ok on it like me. I had my issues but I found supplements, exericse and yoga to mitigate most of them. And yes, I have an awesome team! They have been nothing but helpful through this whole experience! I actually love going to see them!

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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Aug 22, 2019 12:25PM Nash54 wrote:

lala1...I too struggle with the fruit and veggies intake. I find that juicing veggies and making fruit smoothies is easier than trying to get my fruits and veggies in whole form. Good luck!

Dx @59 ...Memento Vivere (remember to live) Dx 8/27/2014, IDC, 1cm, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 9/24/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/23/2014 Multi-catheter: Breast Hormonal Therapy 11/17/2014 Femara (letrozole)
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Aug 25, 2019 08:35PM LillianGish wrote:

Lala thank you for the thoughts on exercise, weight loss and eating F&V’s to reduce recurrence chances by 30%-40%. Now that I’m through treatment...a nice reminder to put these on higher on the priority list. And so happy to see you are well! Our stats are similar and I have to be honest that this disease scares the hell out of me. You are well down the road though, so it can be done!i


Dx 9/18/2018, IDC, Right, 3cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/29/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 12/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/5/2019 Whole-breast Hormonal Therapy 5/1/2019 Femara (letrozole)
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Aug 28, 2019 04:59PM Auburngal wrote:

Hello All!

It's so refreshing to find this thread as well as the website! I was diagnosed with Mucinous Carcinoma in July of 2017. I completed 8 rounds of chemotherapy (AC and Taxol) and had a bilateral mastectomy in January of 2018 and a preventative hysterectomy in May of 2018. The aggressive treatments were due to my tumor size which was 8cm. Surgeon felt he wouldn't get clear margins unless I completed chemotherapy to shrink the tumors.

Today I am 8 weeks out from a Diep flap procedure which, overall, has gone well. My PS told me to come off of the Femara while my wounds are healing. I have noticed I feel more like "me" again after coming off of the Femara....I have been on it a little over a year and suffered from brain fog, joint pain and stiffness and overall malaise and I was in a dark place. I assumed my side effects were from chemo, however, I realize it was due to the Femara. I am now questioning if I need the Femara since I had such aggressive treatments for this type of cancer. My oncologist is firm in regards to me staying on the Femara or trying Arimidex instead to see if the side effects are less noticeable. I'm having a difficult time remaining convinced on the hormone therapy as I feel so much better off of it.

Has your treatment plans included AI's? If I don't go back to taking the AI's what are my percentages of cancer returning? I appreciate your insight! Hugs to all!

Dx 7/28/2017, IDC: Mucinous, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 8/23/2017 AC + T (Taxol) Surgery 1/5/2018 Lymph node removal: Left; Mastectomy: Left, Right Surgery 5/23/2018 Prophylactic ovary removal Hormonal Therapy 7/5/2018 Femara (letrozole) Surgery 6/24/2019 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 29, 2019 11:30PM - edited Aug 29, 2019 11:39PM by LillianGish

Hi Auburngal, I'm on femara and have been for four months now. I live in fear of recurrence. Distant recurrence/stage 4 will not only shorten our life significantly..,the treatment makes femara seem like a cakewalk. My onc says take the drug, I take it. It may not stop recurrence, but if it goes to stage 4, it won't be because I didn't do everything I could. That's just me. I'm stage 1b, but the tumor was grade 3 and not small, so...I take the drug and pray that, the chemo, the radiation, the surgery, exercise, diet...everything I throw at it.....is enough.

Dx 9/18/2018, IDC, Right, 3cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/29/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 12/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/5/2019 Whole-breast Hormonal Therapy 5/1/2019 Femara (letrozole)
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Nov 4, 2019 05:27PM Tewks wrote:

Hi Everyone, I’m new to this thread but not new to Femara or BC or the whole drill...and I have one sort of general Femara question that I havent seen addressed anywhere. First, can side effects start after being on Femara for nearly three years? I started it on 12/26/16 and up till now thought I was breezing through with no side effects. But I’m beginning to add up my miseries and wondering if they’re all caused by the F. I have dry skin and my back itches like crazy...but 95% of the time it’s only in my own house. Go figure. Today I realized that my back was wet...sweaty. Which is really bizarre because I’m freezing cold and very sensitive to temperature. This is a fairly new development, just the last few years. I also have the less-than-zero energy level, total brain fog, I’m snarlier than usual, lower back and right hip ache sometimes, and really pronounced anxiety, as I. Watch out mom’s gonna have another panic attack. Plus the sugar cravings. My weight has dropped by 15 lbs(yea), but my TSH is up. And the chills!!!! I constantly have goosebumps. None of these things is life threatening, but just a royal PITA nuisance. Could this all be from this drug, this far into it? Or is it just my ornery and aging body? I’ll be 72 next June. Just had an outstanding 6 mo checkup with my MO. I did Femara, surgery, flap recon/single mastectomy, chemo but with really bad reactions to it and had to quit, then proton radiation, all since 10/2016. And I feel like I beat it, that it’s not coming back, until I start feeling like shit, then I think that every little pain means I’m gonna die next week. What say you all? Anyone else go through this nightmare roller coaster trippy pity party of whacked out emotions?? Sorry this go so long but I do feel better, thank you.


Dx 10/26/2016, ILC, Left, <1cm, Stage IIIB, Grade 1, 3/3 nodes, ER+/PR+, HER2- Surgery 6/13/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy; Reconstruction (left): Free TRAM flap Chemotherapy 9/8/2017 AC + T (Taxol) Radiation Therapy 2/5/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 4, 2019 09:36PM JoE777 wrote:

Hi Tweks, I have all of your symptoms with Femara, but I had them from the beginning. That's why I only took F for two years and got off it. I'm metastatic now and been back on femara for two years. Talk with your onc about help with some of the worst side effects. Hang in there

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/7/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Other Radiation Therapy External: Bone Targeted Therapy Kisqali
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Nov 4, 2019 10:27PM Yogatyme wrote:

Tweks, I have not taken Femara, but have been treated for thyroid issues for 20 yrs. Some of your sx could be due to your TSH levels. When my thyroid is out of whack I have some of these same sx. Once regulated, I’m fine again.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Nov 8, 2019 07:15PM Betrayal wrote:

I started on Arimidex in 2016 but could only tolerate the side effects for 10 months. After a one month reprieve I was started on Femara (letrozole generic) and still have side effects that are mostly joint pain. I have had to see a rheumatologist because the pain is really bad and I have a resurgence of bilateral carpal tunnel syndrome(already had surgery on both hands) which comes and goes. I have slept with a splint but it then causes finger issues. Right now I feel 100 and walk like I am. If I sit for any period of time, I experience difficulty standing and then walking for the first few minutes. My hands currently are so bad I sometimes have difficulty using a knife and holding a pen to write my name. My penmanship has taken a hit as a result. It would be easier to list the joints with no pain than those with pain. Since starting femara I have had to add a plethora of over the counter or prescription drugs to deal with the side effects. I went from 3 prescription drugs (4 pills) per day to nearly 20 per day.

I saw my MO today and she keeps pushing for me to try tamoxifen or aromasin. Given that my odds with BC so far have resulted in 2 lumpectomies for the same mass; increased number of "boost" radiation doses for slim margins (0.3 mm), breast lymphedema, a franken boob from the lumpectomies, etc. I have never once been in a BC related situation where I was in the majority. So she said my risk of clotting with tamoxifen would be ~2% but given my track record, I will most likely be in this 2% that develops clots or endometrial ca. I have not been able to lose weight on this drug and her description of aromasin as "not a steroid but steroid based" made no sense to me and was not the least bit reassuring. From what I have read on other sites here, the side effects don't always relent with a change in drugs. While I want to believe her, I have had so many lies told to me by my BC physicians (surgeon, RO, radiologist) and support staff (radiation RN and social worker) that trust is an issue. I am tired of being in pain, losing my hair, having hot flashes, and feeling like I am 100. My appearance has aged and that plus the hair loss that no one wants to deal with is upsetting. Today I was told once off femara, my hair will stop thinning but there was no reassurance it will grow back. I am sure she thinks I am a broken record but I do not feel like I am being heard nor taken seriously. I would stop the drug but do not want the ugly beast to return. If anyone can provide some help, I would appreciate it.

Surgery 1/31/2016 Lumpectomy: Left Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 3/3/2016 Lumpectomy: Left Radiation Therapy 3/31/2016 Whole-breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole) Hormonal Therapy 6/16/2020 Aromasin (exemestane)
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Nov 14, 2019 01:40PM Faith-840 wrote:

Hi again, I have a question about anxiety drugs. I’ve been on Letrozole since February of 2016, also with Ibrance for the first 18 months. Letrozole only since August ‘17. My anxiety is getting worse all the time and I wonder if the symptoms get worse over time.

Has anyone taken Paxil for anxiety and did it help with that and also with the muscle and joint pains ? When I look at the side effects, I’m reluctant to start another drug unless I know it will work. Is there any thing else that has helped you. My PCP has suggested therapy but that’s not covered by insurance although it might be worth it.

Any ideas?

Faith (in the future)

Faith Dx 1/1991, Left, Stage IIIB, 8/26 nodes, ER+/PR+, HER2- Surgery 1/4/1991 Lumpectomy: Left Surgery 2/4/1991 Mastectomy: Left Dx 1/2016, ILC, Left, 6cm+, Stage IV, metastasized to lungs, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/22/2016 Femara (letrozole) Targeted Therapy 1/23/2016 Ibrance (palbociclib) Surgery Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 14, 2019 05:46PM Yogatyme wrote:

Faith, you might want to call your insurance company about therapy. There is supposed to be mental health parity since passage of HIPPA. At least that’s how I understand it, but I certainly could have this wrong.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Nov 14, 2019 08:37PM Betrayal wrote:

Hi: I had no response to my first request for help, so I will try again. I am having difficulty with the AI's and side effects. My MO told me that if I finished 5 years on Femara that the beneficial effects of Femara would persist for another 5 years as protection from recurrence. I do like her and feel she has been the most honest of all my MD's but am having difficulty accepting this as the truth. I would love to believe this is true but I have not been able to find any evidence to support this. My concern is that I had a mixed BC with DCIS/IDC and ILC. ILC is know to recur at about 7 years and I do not want to go through this again. Can anyone offer some evidence that this is protective beyond the stop date? I would really appreciate it. Thanks.

Surgery 1/31/2016 Lumpectomy: Left Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 3/3/2016 Lumpectomy: Left Radiation Therapy 3/31/2016 Whole-breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole) Hormonal Therapy 6/16/2020 Aromasin (exemestane)
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Nov 14, 2019 09:18PM Faith-840 wrote:

yogatyme, I’m on Medicare and I don’t think they cover any type of psychological counseling unless I go to a psychiatrist but I will check.

Betrayal, I have no evidence for you but I do have a suggestion. I’ve also had lots of side effects and I just talked to my MO. and he agreed to let me try an every other day dosing of Letrozole. It has a fairly long half life so will stay in your system for at least two days so it might help alleviate some of the symptoms. I’ve only been doing it for a few days now so I can’t say it helps yet but I think it might. Just a thought.

Faith (in the future)

Faith Dx 1/1991, Left, Stage IIIB, 8/26 nodes, ER+/PR+, HER2- Surgery 1/4/1991 Lumpectomy: Left Surgery 2/4/1991 Mastectomy: Left Dx 1/2016, ILC, Left, 6cm+, Stage IV, metastasized to lungs, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/22/2016 Femara (letrozole) Targeted Therapy 1/23/2016 Ibrance (palbociclib) Surgery Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 15, 2019 08:45AM - edited Nov 15, 2019 10:03AM by Yogatyme

Faith, I am a retired clinical social worker and had a number of Medicare patients. Medicare actually blazes the trail w coverage, reimbursement rates, etc. You can also check with therapists directly to see if they accept Medicare. Most large practices do and some solo practitioners as well. The only caveat is the provider has to be MD, PhD or licensedclinical social worker. They do not reimburse MA/MS level counselors. Unfortunately, with the new electronic records requirements, many solo folks are opting out b/c the cost for setting this up is quite prohibiting. You might want to ask your bc team if they refer to particular mental health providers. I hope this is helpful and that you are able to find someone you can connect with.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Nov 15, 2019 11:19AM LimnoGal wrote:

Tewks- I started letrozole a few months before you did. I tolerated it well for the first few years. Around 2.5 years into letrozole, I started noticing a lot more joint/foot/hand issues (along with some other issues). I took a 6 week break from letrozole to take a hiking vacation. I felt so much better during the break...I am back on letrozole now, but intend to have a really frank discussion with my MO about the real benefit of this drug for me.

But the short answer to your question is yes, you can tolerate letrozole well for a time, then start noticing side effects.

Moving on.... Dx 11/2016, DCIS/IDC: Papillary, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Balloon-catheter: Breast
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Nov 15, 2019 02:32PM - edited Nov 15, 2019 02:36PM by GrandmaV

Betrayal - I have not heard that the beneficial effects of Femara would persist for another 5 years as protection from recurrence. In fact, I've done lots of research on aromatase inhibitors over the years and I've never read that anywhere. It would be nice if that is true, but from the way my onco talks it's not. I did 7 years on them and stopped because of side effects and because of the two studies that came out that said there is no added benefit beyond 7. The ASCO still recommends up to 10 years, because some of the first studies finished were for 10.

Here is the link:

https://www.asco.org/practice-guidelines/quality-g.../9326

there are some links on the right side of the page on the asco site where you can read the full text and view the 6 trials charts.


Dx 9/1/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 10/11/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Targeted Therapy 11/4/2011 Herceptin (trastuzumab) Chemotherapy 11/4/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 2/13/2012 Hormonal Therapy 4/1/2012 Femara (letrozole) Dx 9/1/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery 9/29/2017 Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 11/22/2018 Arimidex (anastrozole)
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Nov 15, 2019 07:56PM Betrayal wrote:

GrandmaV : Thank you so much for your response. My MO caught me off guard with this comment and I was feeling pressed for time since her staff knock on the door when you are getting close to your appointment end. Yes, it is annoying and I do plan to say something about this but now I need to also ask her for the evidence to back her statement. I trusted her and now even that is shaken to say the least. She also told me that only the 10 years of AI's was reserved for those diagnosed younger. Thanks for the link. I will follow up on it and may print it to take to my next visit.

Faith: Thank you also for the suggestion to do every other day. I would need to clear this with the MO but she is pushing for me "to try Tamoxifen because it has no joint pain associated with it" and yet there are plenty who publish here that state it does. I would be concerned about the clotting and cardiac SE since I have always been the one in the group with "low risk for occurrence" but have developed the complication. Then I was offered exemestane but told "it is not really a steroid". Then why is it labeled as one? So I am on the horns of a dilemma; to suffer for 2 more years on this AI or to stop them altogether. The only thing that makes me swallow it daily is the fear of recurrence.

I am happy that so many have no side effects from AI's and hope it continues as long as they need to take the drug. I would have loved to have been one.

Surgery 1/31/2016 Lumpectomy: Left Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 3/3/2016 Lumpectomy: Left Radiation Therapy 3/31/2016 Whole-breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole) Hormonal Therapy 6/16/2020 Aromasin (exemestane)
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Nov 15, 2019 09:10PM Faith-840 wrote:

yogatyme, thanks for the info on Medicare coverage of counseling. I have a couple of names but they are not in a group so may not have done all the work involved for the government records requirements. I will check their credentials to see if they qualify.

Betrayal, I was on tamoxifen when I first had BC in 1991, it was no walk in the park either but I don’t think the fatigue was as bad as with Letrozole. I’m under the impression tamoxifen is only used for women who are still menopausal or just past it. Is that your situation?

It’s good to know, I’m not the only one for whom Letrozole side effects seem worse the longer I’m on it. At least I know I’m not crazy and it is better than a lot of other alternatives.

Faith

Faith Dx 1/1991, Left, Stage IIIB, 8/26 nodes, ER+/PR+, HER2- Surgery 1/4/1991 Lumpectomy: Left Surgery 2/4/1991 Mastectomy: Left Dx 1/2016, ILC, Left, 6cm+, Stage IV, metastasized to lungs, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/22/2016 Femara (letrozole) Targeted Therapy 1/23/2016 Ibrance (palbociclib) Surgery Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 18, 2019 08:11PM Moominmamma wrote:

Hi all,

I have heard continuing therapy for up to 10 years on tamoxifen is beneficial to help prevent recurrence in HR positive BC and this was recommendation was also made for AIs like Femara recently. See below

https://www.medpagetoday.com/hematologyoncology/br...

Some people say that taking claritin daily with femara can really help lower side effects. I have been happy with femara - except for my sorry hair situation! - and use estrace cream for vaginal dryness which has been my most noticeable side effect. Most importantly, it is holding my bone mets stable for one year now, (along with Ibrance), and the pain I had from mets years ago is gone.

I do wonder if I would have MBC now had I taken an AI after my prior bout with HR positive BC. I didnt because I have high clotting risk so tamoxifen was a 50/50 choice which was more risky and the research on other AIs was not conclusive at the time.

Dx 8/2007, DCIS, Left, Stage 0, ER+/PR+, HER2- (IHC) Surgery 9/9/2007 Lumpectomy: Left Surgery 9/16/2007 Lumpectomy: Left Dx 5/30/2012, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (FISH) Surgery 7/11/2012 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 9/15/2018, Left, Stage IV, metastasized to bone/other, Grade 3, 1/1 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 10/1/2018 Femara (letrozole) Targeted Therapy 10/5/2018 Ibrance (palbociclib) Hormonal Therapy 12/31/2020 Faslodex (fulvestrant) Targeted Therapy 1/10/2021 Verzenio Targeted Therapy Herceptin (trastuzumab) Radiation Therapy 3DCRT: Breast, Lymph nodes Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)

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