We are 182,869 members in 80 forums discussing 138,995 topics.

Help with Abbreviations

All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Letrozole

Topic: Letrozole

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: Feb 9, 2017 08:40PM

Artista928 wrote:

Well, today my labs showed I'm officially in menopause and onc wants to switch me off Tamox and on this. Scared because of joint issues so many get. Already have it. Anyone here on this and care to share experience? I have 2 weeks of Tamox left in my bottle so I'm going to finish it before taking the plunge. Ugh.

Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole)
Log in to post a reply

Page 1 of 1 (11 results)

Posts 1 - 11 (11 total)

Log in to post a reply

Feb 9, 2017 09:57PM Kicks wrote:

I've been on Femara/letrozole for 7 yr. When I started Femara, it was not available in the generic form - letrozole - so it was Femara until it became available in generic form - letrozole - and have been on it since it became available. Since then, it's been letrozole (different brands at different times).

I was 63 when DXd and started Femara. I had gone through natural menopause at 44, so was 19 yrs post menopause when I started Femara. Except for a few weeks when my PA wanted me to try HRT because of a huge family HX of osteoporosis, I didn't 'do' it. I didn't like HRT SEs, so quickly stopped it.

Do I have 'aches and pains' - 'ya betcha I do'. They have gotten worse over the yrs on Femara/letrozole BUT were there before (thanks to being a very active horsewoman all my life and active in a lot of different outdoor activities) and would have progressed anyway. So now at 70 - the more active I keep myself, the less 'aches and pains' I feel. Of course, 'they' would have progressed over the yrs anyway, even without Femara/letrozole.

A lot comment on 'hot flashes' on Femara/letrozole. I didn't/haven't had any - but then I never had any when I went through menopause.

Others will have different experiences to pass on to you. My experiences are mine - others are theirs. We are each so unique that there is no way to 'predict' what any of us will individually experience because someone else did. Get all the input/insight you can get, but always remember that you are the unique woman you are - just as each of us are.

Winyan - The Power Within

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
Log in to post a reply

Feb 9, 2017 10:29PM KB870 wrote:

Good to know. I also had a natural menopause at 45 and didn't realise because I had no symptoms! Periods just stopped. No HRT or anything. Really hoping I get no SEs when I go on letrozole around March/April. Just diagnosed t 62.

Surgery 9/19/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/31/2016 Lymph node removal: Sentinel Targeted Therapy 11/29/2016 Herceptin (trastuzumab) Chemotherapy 11/29/2016 Taxol (paclitaxel)
Log in to post a reply

Feb 9, 2017 10:56PM mustlovepoodles wrote:

I started letrozole last year at age 59. I have noticed stiffness and pain in my hands and knees. However, I have had psoriatic arthritis in my hands and feet, and osteoarthritis in my knees for many years ,so it's hard to say how much of the stiffness and pain is the original arthritic pain and how much is the letrozole. I have had no hot flashes and I have no more trouble sleeping than usual (I have chronic insomnia, so I take medication to make me sleep.)

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/20/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
Log in to post a reply

Feb 10, 2017 09:17PM CidneyI wrote:

I stopped taking Letrozole this past Christmas because of the side effects. My feet, hands and knees hurt so bad to the point if being miserable. Hot flashes - you betcha. What really made me stopped taking Letrozole was how it made me feel mentally. I have never experienced depression but I now know what it feels like to be depressed. I wasn't sad, I didn't have self pity, I just no longer cared about anything anymore. I had no feelings about anything, I no longer wanted to do the things I loved or be around loved ones or people. I didn't care if I lived or died. I was content with just sitting someplace and starring off at nothing. I have been off of that damn pill for about a month and a half now and I am just now starting to feel slightly better. I go see my onco at the end of this month and I know he is not going to be happy with me but I can not live my life like that. I would rather tolerate the physical issues any day over how it makes me feel mentally.

Dx 9/11/2014, DCIS, 2cm, Stage IIA, 0/5 nodes, PR- Surgery 9/12/2014 Lumpectomy: Right Surgery 9/19/2014 Lymph node removal: Right, Sentinel Radiation Therapy 9/25/2014 3DCRT: Breast Hormonal Therapy 10/24/2014
Log in to post a reply

Feb 10, 2017 11:49PM - edited Feb 10, 2017 11:52PM by ChiSandy

My experience with Letrozole thus far (13 months) has been the same as Kicks' (except for the horsewoman part—I am a congenital klutz and dedicated non-athlete). I have “startup" joint aches (immediately after getting out of bed or up after a long session of sitting, I hobble…but 20-30 steps later I'm fine), and that's about it. In fact, I hurt much worse from knee OA, years pre-cancer, before I had my knees replaced. I got a trigger thumb (R) that eventually disappeared, but had a L one a decade ago (again, long before cancer). The closest I get to a hot flash is either sleeping with the ceiling fan on (low speed) or suddenly feeling comfortable in a very cold room. Never had them during menopause (11 yrs ago). I do have a slower metabolism and have gained about 10 lbs. since starting Letrozole…or maybe it's the carb cravings I'm finding harder to resist (the “YOLO" mantra has been playing on an endless loop in my brain). And my hair was thin-ish before cancer too. My cholesterol (mostly LDL) has increased, but my total cholesterol-to-HDL is still in the “ok” range. And both my parents had sky-high cholesterol (like me, my mom’s HDL was in freak-of-nature territory and she might still be with us instead of dying at 85 had she not smoked) until they took statins.

Maybe what's helping with my joints is that I take both my letrozole and a couple of 8-hr acetaminophen at bedtime and a Celebrex in the morning. And my Fitbit keeps guilt-tripping me into walking more.

I'd say that being very strongly PR+ might explain the mildness of my symptoms, but Kicks was PR-. Go figure. Everyone is unique.

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- (FISH) Surgery 9/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 1/1/2016 Femara (letrozole)
Log in to post a reply

Feb 11, 2017 12:37AM Artista928 wrote:

Thanks--

Chi- What was your PR? Mine is 50.

Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole)
Log in to post a reply

Feb 11, 2017 01:08AM ChiSandy wrote:

My PR was 97%. ER was 75% (the reverse of most ER/PR+ patients).

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- (FISH) Surgery 9/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 1/1/2016 Femara (letrozole)
Log in to post a reply

Feb 11, 2017 01:17AM Artista928 wrote:

My ER was 95. Ki67 was 75.

Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole)
Log in to post a reply

Feb 11, 2017 01:43AM ChiSandy wrote:

My path report & ODX results didn’t mention my Ki67. My MO says it’s not as predictive as ER & PR %ages, grade, node status and ODX score—especially in Stage IA patients.

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- (FISH) Surgery 9/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 1/1/2016 Femara (letrozole)
Log in to post a reply

Feb 11, 2017 03:13AM Artista928 wrote:

They didn't do an oncotype on me. I was basically told if you don't do chemo, very large chance I'd be stage IV at some point. That was enough to scare me as I was hoping to avoid that and just do rads after my mxs.

Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole)
Log in to post a reply

Feb 11, 2017 12:49PM KBeee wrote:

They only do oncotype if they are on the fence about chemo. They do not do it for stage III because they know the benefits outweigh the risks. I had tamoxifen and now am on Letrozole. I think for me, the Letrozole is easier. I do get frustrated having to take it since 10 years will be the minimum for me, but I know that my triple negative friends would do anything to have a pill to take that would decrease their recurrence risk, so I try hard to be grateful for it.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

Page 1 of 1 (11 results)