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Femara-to continue or not...

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13

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  • ingerp
    ingerp Member Posts: 1,514
    edited November 2019
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    Hopeful--wish I had a gold star for you and congratulations on sticking with it. I'm only a year in, my MO has not mentioned going beyond five years, but if she does, I figure I'll give myself a break like you're on. That's something, anyway. . .

  • 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

    Not sure why this "deleted" on my prior post.

    If Femara isn't working for you, try one of the other AIs. Each of us has different SEs with each, which may vary over time.

  • kamboka
    kamboka Member Posts: 1,057
    edited November 2019
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    Thanks to all with your words of encouragement about possibly not having any or many side effects. I guess the short term side effects don't really bother me as much as those that have longer term effects that we might not know about until it's too late. I'm sure I'll start and give it a try. My concern is that I do a lot of overseas travel to developing countries and most of them are very hot places. I can just feel the hot flashes mixed with the climate and limited air conditioning. I can't afford to quit my job and I'm too old to get a new career with a decent salary.

  • 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

    Copy/paste was obviously not working!

  • bcincolorado
    bcincolorado Member Posts: 4,702
    edited November 2019
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    I know there is a thread for people on it with no side effects thread as well. Everyone is different how they react to meds.

    I did 5 on Tamoxifen and then went on Femara. When Breast Cancer Index came out though my MO ordered it last year (it was covered) and it showed benefit of staying on it only reduced recurrance by 3% so she took me off it since it was zapping my bones (I did shrink 2" while on it) and start Prolia.

    Now also off Prollia as well.

    Good luck! Just remember---even achy bones/joints are better than getting cancer again!!!!!!!

  • mavericksmom
    mavericksmom Member Posts: 1,200
    edited November 2019
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    Looking at some who posted here with grade 3 tumors, no matter how small, I would definitely give the AI a try!

    It doesn’t matter how many do fine on the AI or how many don’t. AI’s do good and harm and where the direction goes is different foe everyone. It should not be taken lightly, but it shouldn’t be refused lightly either.

    Grade 3 is nothing to mess around with. I feel I am pushing my luck refusing it with grade 2. Again, there are other health reasons why I am refusing it.

    It totally sucks that we don’t have a better measure of how the AI will benefit us or harm us. I used results of my Oncotype score to help in my decision, but factored in other health issues.

    It took time but I know I made the right choice going off of it given the information I have to work with

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited November 2019
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    Ingerp, thanks for the gold star!

    I will admit that I feel a sense of accomplishment in finishing the first five years with a perfect track record. My previous MO used to talk about all the time she had to spend just to get her patients to stick with their endocrine therapy or even to start on it, and yet she never acknowledged the fact that I was hitting the three and four year marks, which seems pretty poor psychology to me. My current MO was pretty blasé about it, too.

    BcinColorado’s point about the side effects being better than cancer is one to keep in mind, at least it works for me.

    Kamboka, I’ve never had a single hot flash with femara. Maybe you’ll be lucky in that regard also. I hope so

    Happy Thanksgiving week to everyone!


  • kaylie57410
    kaylie57410 Member Posts: 117
    edited November 2019
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    hi- I have not had even 1 hotflash on femara and am about at the 2 years mark-you may not- either----K

  • kamboka
    kamboka Member Posts: 1,057
    edited November 2019
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    Hopeful82014 and kaylie57410: I decided to keep trying Femara so I've been on it for five days. I do seem to be having more hot flashes/night sweats but not too bad or too often. I actually don't worry too much about the short term minor issues but I do worry about the long term major ones like osteoporosis. My MO is not one that likes to do scans. I've got a second opinion next week to see what the other MO recommends. I'd like to know sooner rather than later is I'm having a problem so we can switch or end the drug.

    Hopeful: I think it's always "the squeeky wheel gets the oil". What a shame there is not as much attention to positive behavior.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited November 2019
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    hi everyone and happy day of gratitude!

    I have been on femera/letrozole since April 2017 (just turned 40 yrs old)...so over 2.5 years...I am currently on a three week break to see if some of my pain issues are related to this drug or not.

    I can’t remember exactly but I think the aches and pains took a little while to start. I can recall laying in my bed and becoming aware of some pains...it took maybe 2 months? Maybe less? And from that point on, the pains fully settled in.

    My pains have shifted from place to place and have come and gone with some and stayed permanently in others. They are/have been:

    1) Carpal tunnel (reversed this with light weight lifting 3-5 days/week plus stretching out my wrists and pecs and arms

    2) trigger finger of the right thumb. Has gotten a little better but I wear a thumb jewelry splint to keep it from subluxation, which it does regularly.

    3) severe foot pain which is probably similar to plantar fasciitis. Worst in the morning when standing up out of bed, better with acupuncture, massage doesn’t touch it, it has pretty much resolved in left foot but right foot is still painful, yet better!

    4) lumbar/mid-back pain started more on right and then has switched to left and then became bilateral.

    5) creaky joints in general that start to hurt if I am in one position for too long, and too long means longer than 30 seconds..so for example if my legs are crossed, I have to uncross them and recross them over and over because joints start to ache.

    6) hot flashes have been real. I am also in medical menopause and get the Lupron injection every month. So this whole combo gave me industrial strength hot flashes. I have been taking lexapro for anxiety and depression and I think it has also helped calm down the hot flashes as an off-label use, and I am SO thrilled!!! Hot flashes are sooo much better. Still there, but better.

    I have been off the AI for 1.5 weeks now and my back pain has gotten a LOT better! I have a lumbar spine MRI on Tuesday just to make sure all is okay in there - being that I have had innumerable Mets to my spine...this is good to get checked out.

    Hope my share helps others! I realize I am stage 4 so I am supposed to be “in treatment” for life...I have had to decide which is worse, cancer progressing or dealing with some pains. Hopefully the upcoming scans will help better decide which direction I need to go.

  • Polly413
    Polly413 Member Posts: 31
    edited November 2019
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    I only took AIs one year. I began taking Femara in Feb of 2018. I had joint pain but it was tolerable. Dexascan prior to and one year after beginning Femara showed only normal bone loss. But I had severe hair loss from it. I had DD AC/T chemo and lost all my hair but it had started to grow back when I began Femara. In Feb of 2019 after one year on Femara, my hair began falling out. So I stopped taking Femara to see if the hair shedding would stop. It did but all these months later it has not regrown what was lost and I have to style carefully to cover bald spots. My theory (totally unproven) is that the loss of estrogen shocked my body into being like a 90 year old and triggered pattern baldness which for whatever reason is now permanent even though I have not resumed Femara. I am doing laser hair treatments and can only hope the loss will stabilize as I cannot see any regrowth.

    I would not have stopped the med if the only problem was the hair. But I am not convinced it was helping me due to the strange nature of my cancer. When I put my particulars into one of the diagnostic calculators AIs do not seem to make much difference. But a more important factor for me is that, although my surgical path report did not show this, a mammoprint showed my cancer to be BLBC (basal like breast cancer) which is cancer which is hormone positive like luminal A but basal in form like triple negative bc. For BLBC there is at least one study that says that ALs are ineffective just like they are for pure triple negative BC --that is, there is some property there that shuts down the AL effect. Asked my MO about it but because BLBC is very rare -- under 5% of BC -- he did not know the answer but did not press me to continue with AIs.

    Its confusing because obviously the Femara did something to the estrogen or I would not have had the side effects I did, yet the study showed it does not help patients with BLBC. Anyway I decided as a risk/benefit issue it wasn't worth it to take any AI and I do not plan to resume. My cancer was IDC stage IIA, grade 2. I will be 3 years out next April. Polly


  • windingshores
    windingshores Member Posts: 160
    edited December 2019
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    One of my docs suggested taking two years off after completing 5 years, building my bones, then going back on for an additional two years. I just asked her to order the Breast Cancer Index which will tell me what my risk for recurrence is in years 5-10 and also whether the meds are helping.

  • mavericksmom
    mavericksmom Member Posts: 1,200
    edited March 2020
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    Very sad and upsetting that this is our only choice, to be on medication that causes so many side effects or take the risk of recurrence or new primary.

    I chose to quit after six months but I had just refilled a 90 day prescription. Every time I look at those bottles I get upset. Not ready to get rid of them, but hate this feeling of fear. For what it's worth, if I went back on it, I would still feel fear.

    When are researchers going to care enough to develop something better? Doctors seem so impersonal when it comes to AIs.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited December 2019
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    Kamboka, good for you for starting in on the femara. Good luck with it.

    Re: scans - DEXAs usually are only ordered every 2 years, sometimes 12-18 months, as changes in bone density don’t show up very quickly. If your MO won’t order one for, say, 18 months on, your PCP might be more helpful.

  • pingpong1953
    pingpong1953 Member Posts: 274
    edited December 2019
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    I took myself off Femara about 2 weeks ago, and I haven't shared that news with anyone. I started it about 2 years ago and initially I had terrible hot flashes - worse than when I went through menopause at 51 (I'm 66 now.) My MO prescribed Effexor, which helped a bit, but I still get them. I live in a cold climate and I swear, every 5 minutes I go from freezing to needing a fan blowing directly on me. This hasn't changed since I quit the Femara, but I hope it'll settle down eventually.

    I'm one of the "lucky' ones whose hair is thinning. I had lost it due to chemo but it had started growing back, but in the past year or so it's been getting thin again. This is really frustrating, since I used to have VERY thick hair. Now I can see my scalp. My joints have been a problem, too, and I can't stay in one position for very long or I can't straighten my limbs. I can't live on ibuprofen or Tylenol. I do warm water exercises but they don't give long-lasting relief. I also was tired all the time and couldn't get through the day without a nap. That's starting to get better, at least. My dizzy spells are a lot better, too. There were days that I was afraid to drive because my head was swimming so badly.

    I want to stay off them until after March, which is when I'm going to be checking an item off my "bucket list" - my sister and I are going to the World Figure Skating Championships in Montreal. We have all-event passes, which means practice sessions, competition, gala, the whole enchilada. Very busy days! I don't want to miss anything and I certainly don't want to slow down my sister when we're there, so I'm going to do whatever it takes to get myself into shape to handle my trip. After that, I'll reconsider the Femara.

  • kamboka
    kamboka Member Posts: 1,057
    edited December 2019
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    Hopeful82014: I guess I've survived a little over a week on the letrozole. The hot flashes come and go and I've noticed the joint stiffness. At the moment, it's something I can deal with. I have a second opinion with another MO on Friday. I'll hear from her what she would do as far as scans.

  • Wereflyn
    Wereflyn Member Posts: 27
    edited December 2019
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    Good Morning Ladies,


    I have been on Letrozole since February 2019 at first I had little to no side effects since my MO gave me Effexor which manages the hot flashes. In the last 2 months I have gained over 10lbs and have noticed more and more joint and muscle pain. Whenever I get up after sitting for a half of an hour I walk like a little old lady.Has anyone noticed the side effect increase over time?

    Thank you

  • magari
    magari Member Posts: 335
    edited December 2019
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    Some women find that SEs increase over time, others that they decrease. Others that they change....

    If you're having issues with Femara, remember that Arimidex and Aromasin are other AIs that may result in fewer side effects for you. Talk to your MO about your options; don't just give up.

  • wintersocks
    wintersocks Member Posts: 434
    edited December 2019
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    Oh it's depressing to hear of no re growth following stopping Femara. have been on it now 7 years few side effects but hair loss is the biggie, I don't know whether to stop it, but was told when it is stopped that;s when the cancer can return fast. It's so upsetting as I too had massive thick hair.

    Really don't know what to do.


  • mavericksmom
    mavericksmom Member Posts: 1,200
    edited March 2020
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    Winter socks, who told you that when you stop it can come back fast? Sounds like a scare tactic to me. I never heard that but it seems that so much would factor into a recurrence that it can’t be a real.

  • kamboka
    kamboka Member Posts: 1,057
    edited December 2019
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    Wereflyn: I've been on letrozole for two weeks. My night sweats have increased and I have the same problem as you with the stiff joints. At work, I'm so embarrassed and hope no one is looking at me when I stand up. It takes a minute to stretch enough to be able to walk. I do feel like a really old lady then. It doesn't help that I had chronic low back pain before cancer. After my last dose of chemo in mid September, I've managed to gain back 25 of the 38 lost in my first round of chemo in the spring. Now sure how much more I'll gain with letrozole.

  • wintersocks
    wintersocks Member Posts: 434
    edited December 2019
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    Mavericks mo

    I was told that by my onc who is a Professor of Oncology here in the UK; perhaps it is because I am 100% er and pr - which is a bit unusual and ups my risk further because it tends to be a bit more aggressive . I also had a large tumour. He told me that when the Letrozole is stopped the cancer can return and often does and that can be quite quick. That is why I decided to stay on it. I don't think he was trying to scare me; it was his opinion about my cancer.

  • lillyishere
    lillyishere Member Posts: 773
    edited December 2019
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    ladies, I am on my 4th day taking Letrozole. I am feeling very dizzy, is it normal? Will it go away? What is your experience?

    I'm afraid to drive to work and take kids to after school activities.

    Thank you so much!

  • limnogal
    limnogal Member Posts: 100
    edited December 2019
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    LilyWasHere - Try taking your letrozole at night. I did that and had no dizziness issues.

  • lillyishere
    lillyishere Member Posts: 773
    edited December 2019
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    I do take it at night with full stomach and I was fine the first and second day but started the 3rd day and today I'm stuck at work scared of driving home.

  • kamboka
    kamboka Member Posts: 1,057
    edited December 2019
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    Lillywashere: I had dizziness the first day but after that it went away. I take mine at about 5 or 6 pm. I've been on it for about two weeks and am having the stiff joints. I'm like a really old lady every time I get up for sitting more than 30 minutes.

    I've heard some people talk about taking the med every other day for awhile to get used to it. Could you do that and see how it works?

  • dtad
    dtad Member Posts: 771
    edited December 2019
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    Mavericksmom....You hit the nail on the head! Why do we still not have any other treatment options and why are most MOs oblivious to the side effects. IMO if they would listen and validate the side effects maybe more women would complete the recommended time on them. I've said it many times before but how can they consider anti hormone treatment an acceptable form of treatment when the compliance rate is so low. I'm happy for anyone who does well on it but too many have serious side effects. I always wonder if things would be different if BC was a male dominated disease. I mean not only do men have Viagra but they now have a prescription drug for crooked erections! Really? This is where the research and money goes? Just not right! Also just want to remind everyone that weight loss and exercise has been shown to lower recurrence rates by 40-50 percent. Good luck to all navigating this complicated disease.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited December 2019
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    dtad, I couldn’t agree with you more. I know there are people who have few side effects from AI’s but enough do that compliance is poor. I have decided that exercise will be my treatment. I have significantly bumped up exercise and feel great! My friends who take an AI tell me they don’t have the energy to exercise.....one has hand pain so bad she can’t even cook anymore. Ultimately, there are no guarantees. Recurrence happens with and without AI’s. What bothers me most is the judgment I get for refusing an AI. I am not afraid to die, but I want whatever time I have left to be the best it can be.

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited December 2019
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    Hey hey I'm Cazzy 32 and I'm lethrzole got breast cancer stage four secondary to bones and spine. Im from the UK and I was originally on the accord brand. I used to read about ladies found different brands to others and thought hmm I was bit achey in joints etc from accord brand but tbh in last few years I don't know any different I'm on morphine and pre gablin for my crushed vertebrae. Anyway they changed my brand to Glen Mark and my god the aches in joints was rediclous I could barely bend it was aching everywhere in it doesn't seem too bad it's either calmed down or because in having shcb bad time with crushed vertebrae my mind on that. My oncologist basically didn't give me time frame I'm on it for only till it stops working so let's look what ct shows next week week nervous xccc


  • dtad
    dtad Member Posts: 771
    edited December 2019
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    Daylightdancer666...I'm so sorry you are dealing with stage 4 BC. My post was NOT directed towards anyone in your situation. I would never recommend stopping anti hormone therapy or anything else that was helping you. Best of luck. We are all here for you.