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Femara-to continue or not...

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24

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  • maureenb
    maureenb Member Posts: 47
    edited October 2019
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    Sherayne- I don't think Femara will affect your hair.

    Jessie- Yes, I am so glad I've started with the pills and so far so good. Today is day 10. So far, all I have noticed is a few headaches which could be cured by 2 advil, and a little bit of hip/lower back pain.

    Does anyone know when the SEs are supposed to really kick in for Femara? I guess it's different for everyone, but if it stays like this, I can stick with it.

  • wintersocks
    wintersocks Member Posts: 434
    edited October 2019
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    Femara has affected my hair and can cause hair thinning in some people. It is now very thin on top for me and I have been on this drug for 7 years now.

  • limnogal
    limnogal Member Posts: 100
    edited October 2019
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    RatherBeSailing-thanks for the info! I am talking to my MO about changing AIs, but mYbe switching to name brand femara would be another option to try.

  • Stepxstep
    Stepxstep Member Posts: 1
    edited October 2019
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    I am suppose to start letrozole this week as well...and from what I have read, I am terrified!!! I have had so much back pain these last two years that had been radiating under my left ribs to the point that I was thinking that I will be needing a cane to walk with soon. I had been back and forth to my doctor and tried every kind of pain meds and nothing worked ..but then I was diagnosed with breast cancer via mammogram ( left breast) in july this year. After I had my lumpectomy the pain that I have been suffering with had gone !! I have been pain free since my lumpectomy!!! I have no idea why or how it happened buy its so good to feel pain free and now I am suppose to start this pill with all its bone, joint pain etc side effects. I just dont know what to do.

  • April0315
    April0315 Member Posts: 167
    edited October 2019
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    stepxstep...I started 2 days ago. I think trying to prevent bone loss is our best defense. I’m loaded up on calcium and Vit d. I keep telling myself, I’ve come this far, why would I take a shortcut now? I have to at least try.

    Good luck!

  • jessie123
    jessie123 Member Posts: 134
    edited October 2019
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    April -- you are right -- why take a shortcut now. Don't forget to take vitamin K with the calcium and D. You may want to research that on google --


  • rrshannon
    rrshannon Member Posts: 59
    edited October 2019
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    For those just starting I wish you the best, i have been on letrozole for a little over 6 month. I had my first cholesterol check and my levels have gone up. I have also been taking other meds that can affect the cholesterol. Otherwise no other side effects so far. I have other friends not on this board that have taken it for year and had slight bone loss on their scans but no other side effects. Good luck.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited October 2019
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    Welcome to this group! You will find a lot of sisters and support here.I suggest you start a list of questions and concerns to discuss with your doc at your visit---treatment decisions may change depending on your pet scan results--do trust your care team -they are the experts and are trying to do their best by you-I am approaching 2 years on femara /letrozole----some joint stiffness and pain the first few months--exercise helps immensely- and have had mild hair shedding since about 5 months in-mostly when I wash my hair--only do every 4 days--use wide toothed comb and comb gently in sections- is very tolerable-I went into femara with an optimistic outlook as it is my best chance at warding off a recurrence..most people do fine with it with only mild.sometimes annoying side effects but a 40-50 percent reduction in recurrence risk is well worth it--good luck to you and stay with us!--hugs,Kaylie

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
    edited October 2019
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    Kaylie - it was great to read your post. I took my first femara today was miserably anxious but it didn't kill me yet so yay for today. Its nice to here from somebody who hasn't had horrible side effects - fingers crossed for all of us.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited October 2019
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    thank you Giddyup yes it good to hear from those farther along the path-there is a forum on here for those who are doing well on antihormonals--do join that one too-lots of encouragement and good news there from those tolerating these meds and benefiting from their purpose----hugs,kaylie-Candace

  • twolutzjo
    twolutzjo Member Posts: 18
    edited October 2019
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    To all of these comments thank you, thank you, thank you. I started Letrozole yesterday, October 23. I was and am scared but am thinking positive and I am keeping a journal of side effects. I like nothing about it as I have osteoporosis, and high cholesterol already.......but I am still staying positive. My MO will see me in a month to check on side effects. I walk and had been walking before being diagnosed in July. I am 74 years old. I realize I make the final decision as to whether I take the Als and taking it is what I want to do right now. Will be starting back to yoga in a couple of weeks. It is good to know we are all in this together. Hugs to all of you.


  • kaylie57410
    kaylie57410 Member Posts: 117
    edited October 2019
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    thumbs up girls-we are all thru the tough part-think positive-take your little pill every day ,make plans and move on with your life--a good life--go after it--,Kaylie

  • mavericksmom
    mavericksmom Member Posts: 1,203
    edited October 2019
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    I decided enough is enough and stopped taking Letrozole yesterday. Six months was enough, I actually wish I never started. I will tell my MO in a few weeks when I see her.

    My decision is based on facts and MY body. My Breast surgeons exact words to me in August were “You are free of cancer!” I didn’t actually believe him, thought he was just trying to make me feel better, but after reading multiple medical journal articles, he is right!

    One thing to keep in mind is that all specialists are only focused on their specific body part, not your body as a whole. That is our job and that of our PC.

    I triaged my health and breast cancer isn’t even one of my top three health priorities. My heart is first, then my joint replacements, then my colon and then my breast. My biggest health concern is stroke, not breast cancer.

    I had IDC in 2003 and ILC in Dec of 2018 and both were tiny. I was cured of both. I know people will argue there is a possibility of cells going elsewhere and they aren’t wrong. There is probably a bigger chance I will get shot by an active shooter or die in a car accident.

    I am more about actions than words. My breast surgeon refused to allow me a prophylactic mastectomy in January. I wanted a BMX with no reconstruction and he refused the BMX and pressured me into reconstruction. I was still bleeding from wounds caused by previous radiation, seven months after surgery! Obviously he is not a malicious man, he said no to BMX because my risk of co-lateral breast cancer is low.

    None of us know what our future holds, but I am going with my gut feelings on Letrozole. It is harmful to your body. Those who chose to take t do so because the harm from the AI is less than the benefit for them.

    I’m not against taking an AI, I don’t feel the benefit outweighs the harm in MY situation. I want others who chose to stop their AI to know they aren’t alone!


  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited October 2019
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    Mavericksmom, we are of the same mindset. I have few reservations about not taking an AI and feel like I’m making an informed decision. The support I get is a mixed bag but ultimately we have to decide which risks we are willing to take..... and every decision has its risks. My best to you

  • limnogal
    limnogal Member Posts: 100
    edited October 2019
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    Thanks for your insights, yogatyme and mavericksmom! I’m still on the fence about continuing letrozole. I’m a biologist by training, I keep trying to find evidence in the literature that letrozole, or any other AI, is effective in preventing a recurrence or progression in someone who has a low to negative ER/ no PR tumor, or at least effective enough to warrant tolerating the quality of life issues. I just can’t find it.

    My situation is different from anyone with a high ER+ percentage. AIs have been shown to be an effective treatment/prevention in those cases.

    In the end, we all make our own decisions, based on our own situations.

    I wish us all the best

  • bjb01
    bjb01 Member Posts: 46
    edited October 2019
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    interesting discussion for sure! I managed 4 years on Femara. I'm a tough broad. 4 rounds of chemo and 33 rads. NEVER missed a day of work. NEVER!! work is good for my sole and staying focused was important for me. I will admit however, that at this point in time, I've decided to stop the AI. it's about quality of life. the AI induced osteoporosis, the muscle and joint pain (fingers and knees by far the most affected), the hair loss, crying at everything (which makes me appear weak, AND I AM NOT) and the continual hot flashes (even with a blood pressure pill at night to help reduce them) , I just can't do it any longer. in the beginning I though it was work anything to avoid cancer again. I don't feel that way any longer. I take the chance on cancer again. my issue is that it's only been 60 days off and there's no reduction in SE's. anyone have insight here??? I power walk now anywhere from 2.5 to 4 miles, about 5 days a week. mostly to clear my mind, but also to fight the osteo. it makes my knees SO much worse. I've resigned myself to knowing that with every risk, there is not only a benefit, but a downside. I accept that. I would LOVE to hear from anyone who has stopped the AI and what there experience may have been once that medication was discontinued. I appreciate the opportunity to chat about these most important issues in our lives.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited October 2019
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    The first time around I was told I was high risk for reoccurrence. 4 years on Arimidex put me on a walker, wondering about a wheelchair. Stopped it. Then 7 months on tamoxifen. Same. Stopped it. Then in January this year, it’s back.

    Would it have come back anyway? I don’t know, haven’t asked. Now5 months on letrozole, foot pain is back. MO is getting me approved for faslodex.

    I did what was deemed necessary for my tx. I’ll deal with it as it comes, no crying why me. I intend to carry on as best I can, until I can’t.

    NOT TODAY CANCER.

  • Deborahatthebeach
    Deborahatthebeach Member Posts: 1
    edited November 2019
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    Hello, Canadaliz!

    Oh, am I ever glad to see your post! I have those problems with Femara, too. I finally went to my oncologist and requested

    help. She put me on Exemestane, been on it for four days now. I might not be as stiff but the pain in my legs, hands,

    parts of my back seem to remain. Playing it by ear right now. What I want to know is why in Hades there isn't a better drug

    with almost NO Side Effects? Hope you are doing better, any way you can.

    Deborah at the beach

  • moderators
    moderators Posts: 8,216
    edited November 2019
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    Dear Deborahatthebeach,

    Welcome to the BCO community. We are sorry for what brings you here but so glad that you reached out for support and information from our members. We do hope that you will stay active here, get connected and be helped by the shared experiences readily offered by others. Please let us know via private message if we can be of assistance in your navigation of the site. You also can use the private message feature to reach out to individual members with questions and concerns. We look forward to seing you around.

    The Mods

  • bluedrifter
    bluedrifter Member Posts: 1
    edited November 2019
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    LimnoGal - I am a biologist by degree and I agree with you -- no reason to take an estrogen blocker when you are hormone negative. My reading of literature says anything less than 20% starts to feel like "hormone negative."

    Not me, I am 100%/90% positive, but am considering not even starting.

    What I am still unsure about, is why folks don't seem to know their risk of recurrence, and determine if AI are worth it from that. I have an "easy" cancer. 21mm, Er100%Pr90%Her2neg, grade 1, clear nodes, clear margins. Lumpectomy plus radiation. I wasn't offered an OncotypeDx test because it seemed obvious that I wouldn't need chemo. But I know there are exceptions, and I now realize that it will be supporting data for what my theoretical risk is, and will be requesting it.

    From reading, with my stats, it seems that lumpectomy dropped the risk to ~30%, radiation to ~6% and AI would reduce risk by half, or 3%. I am not sure I want the potential side effects for just a 3% gain.

    I saw one study that suggested my stats still had a 13% risk, even with AI, but danged if I can find that one again, lol!

    Some of the issue with these recurrence rates are the survival times. I think the 3% risk might be at the 5 year mark, and maybe the 13% risk was over ten years.

    But I am surprised that I don't hear people talking about their particular risk. I know if my cancer were such that my risk was greater than 10%, I would consider it. And I went through a horrible natural menopause, and had terrific bone pain -- not anxious for that again -- but if it helped, I would give it a go with all the tricks: changing drugs, changing from generic to brand, changing time of day, intermittent dosing, etc..

  • moderators
    moderators Posts: 8,216
    edited November 2019
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    BlueDrifter, welcome to Breastcancer.org and thank your for your post, we're glad you found us! If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here.

    May we suggest that you fill out your diagnosis and treatment information on your profile so that other members can easily know your situation. To do this, click on 'My Profile on the top right of this page. Then click 'My diagnosis' and fill in your details. You can do the same for 'My treatments'.

    Wishing you well!

    The Mods


  • laurencl
    laurencl Member Posts: 203
    edited November 2019
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    Hi All

    Looks like I’m joining the ranks. If I can only make myself pick up my prescription from the pharmacy

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited November 2019
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    Welcome-you will find much support here. most do fine with Femara and the similar drugs--look at it as your friend and guardian-sitting right next to your coffee maker each morning-take that little pill each day- you have come so far and now it is your best defense against a recurrence-40-50 percent reduction in that risk- well worth some possible annoying side effects---good luck-as you move into the next phase of your treatment--hugs,

  • dtad
    dtad Member Posts: 771
    edited November 2019
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    Kaylie...I'm glad you are doing well on anti hormone therapy. I wish all did but that is just not the case. You are right that it reduces recurrence rates by 40-50 percent but so does weight loss and exercise. I think most people would tolerate annoying side effects as you mentioned. The problem is that some have devastating side effects and IMO they should be validated. Again I'm happy for those who tolerate the drug well and I do not dispute their effectiveness. We need to speak up for better treatment options. Good luck to all

  • kamboka
    kamboka Member Posts: 1,058
    edited November 2019
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    Laurencl: I had my script filled two weeks ago. Today was the first day to wade into the waters. I took it in the morning and had some dizziness and slight nausea. I might stop and try again after the holidays. I know it could help me but like dtad stated, losing weight and exercising (which I need to do) would also help. I re-read all the possible side effects and am thinking why do these drugs that are supposed to help us end up causing so many other problems. I'm older and am thinking about quality of life before quantity with long term crazy health issues.

  • April0315
    April0315 Member Posts: 167
    edited November 2019
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    I think I’m on week 6 and haven’t noticed anything different with my body. Just Incase anyone needed some reassurance to at least try them. I don’t know what the future holds, but for now I’m doing fine on it.

  • dtad
    dtad Member Posts: 771
    edited November 2019
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    Kamboka...the reason for the side effects is the lack of estrogen. Unfortunately we need estrogen for most of our vital organs, including our brains, bladder, joints, bones, skin and hair. So this why there are so many side effects. However remember not all women have side effects and not all that do have severe side effects. IMO its important to discuss with MOs to hopefully help with compliance. The compliance rate of completing recommended time is only 40-50 percent. Now that the recommended treatment time has been extended the compliance rate will probably go down. You mentioned you were older. So am I, 66. I also think age is a factor as well as QOL. Good luck to all navigating this complicated disease.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited November 2019
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    I do encourage you to give the anti hormonal drug a try-you may well be one who has minimal /mild side effects and the benefit could well outweigh that- you can always stop at any time--nothing is in stone--In my case -I was 69,normal weight,active-had- smallish tumor--2 cm, but 2 positive nodes and a high oncotype of 45-so after lumpectomy had 4 rounds of TC and 33 rad treatment of breast and nodes. it will be 2 years in January on Femara and other than some joint ,knee and finger stiffness in the am's that clears with moving around, and mild hair shedding that has tapered off ,and some insomnia issues- I can fall asleep- but wake in 2 hours and then toss and turn for a few hours-dropping back off in the wee am--of course having 4 dogs on the bed with me doesnt help--LOL--I have done ok with Femara and expect I will be one who will be recommended to continue beyond 5 years-yes the bone loss potential is concerning-so take calcum,vit D, stay active ,and have periodic dexascans- My Onc doesnt want to put me on Reclast/Zoledronic acid at this time-so will continue in monitoring mode going forward - best to you,Kaylie

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited November 2019
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    I've just finished my first five years of Femara (with 100% compliance - you'd think I'd at least get a gold star). I'm on an approved 3-month break before starting up again for another five, although I'll probably switch to tamoxifen for a while just for a change.

    I didn't really have any side effects for maybe the first year, and after that they varied. Overall, while I wish I felt I could safely bail on endocrine therapy, it hasn't been intensely annoying but it's gotten old over time. Count me as another one who's glad to have the drugs but wishes we had something better.

    I was told by the NP that Femara and others can sometimes cause dizziness, so taking it at bedtime was recommended and that's what I've always done.

    Because I took it neo-adjuvantly I had first hand knowledge of how effective it was on my tumor. In light of that I've been committed to taking it consistently and finding ways of dealing with most of the side effects as they arose. Don't go into expecting to have issues - you may do very well. Even if you quit after a couple of years, that's a couple years of protection against recurrence that can't be erased.

  • magari
    magari Member Posts: 335
    edited November 2019
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    Doing Well on AIs thread:

    https://community.breastcancer.org/forum/78/topics/854403?page=40#idx_1189

    Try a different AI if Femara isn't working well for you. Arimidex or Aromasin are good alternatives, and each of us experiences varying SEs on each.