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Femara-to continue or not...

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limnogal
limnogal Member Posts: 100

I am trying to end a month long, MO-approved vacation from Femara. I am having a hard time making myself go back on it, and would like to hear from others who have taken a vacation from their AI and either went back on it or quit.

My case: I had a papillary carcinoma-stage 1, grade 3. By IHC my tumor was weakly ER+/PR- and HER-. By oncotype it was triple negative. My oncotype score was a stunning 49. I did LX, mammosite radiation, and TCx4. I have completed a little over 3 years of femara.

The reasons I am having a hard time going back on femara are all quality of life: joint pain, weight gain, changes in body odor (which my husband says is "repellent").

The reason to go back on it is preventing a recurrence or progression. However, with my wacky stats, I'm not sure how effective AIs are...I have been searching for literature to help nudge me off the fence, but I haven't found much relevant to my particular situation. The joys of being a less common type!!

I have an appointment with my MO in about 6 weeks, and will discuss this with him. In the meantime, I would like to hear thoughts, experiences and input that you may have.

Thanks!

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Comments

  • canadaliz
    canadaliz Member Posts: 12
    edited October 2019
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    Hi LimnoGal,

    Let me start with Letrozole is a bastard plain and simple. I thought getting breast cancer was the worst of it. Then, once acceptance settled in I thought the surgery would be the worst bit. Then I thought the rads would finish me off. Then the stage 4 cirrhosis from a hepatotoxic response to Tamoxifen would finish me off (a month in ICU--fun times) but no, nothing compares to the bastard that is Letrozole. There is not a minute of the day that the pain that that drug induces is not on my mind. I hurt. Everything I try and do hurts. I make tea--it hurts. I get out of bed, it hurts, I get out of a chair, it hurts. I can't make a fist as it hurts. My muscles and bones ache so bad I could cry...and sometimes do just out of frustration. I want to put breast cancer behind me but it's hard when my body is wracked with pain. I'm no wimp. Mum and Dad were from England and I have the whole stiff upper lip thing ingrained in my psyche but Letrozole has brought me to my breaking point. I can handle that I was obese and had a mildly fatty liver which Tamoxifen just raced to NAFLD/cirrhosis. That's non-alcoholic fatty liver disease induced cirrhosis due to the hepatotoxic nature of Tamox. I can handle that I will need a transplant (thankfully both of my sons are a match). 2.9% of women have a toxic response to Tamox and I was one of the lucky ones. What I can't handle is my quality of life being so compromised. I have difficulty pegging out the laundry. My 1/4 acre veggie garden once my pride and joy--I can barely grip a trowel. Now, that all being said am I prepared to go off of it......that's a tough one. I have sat with two dear friends as breast cancer marched through them and ultimately stole them from me. I don't fear dying but I hate breast cancer like my worst enemy. I feel that by shouldering the pain of Letrozole I might be battle weary but I am keeping up the fight. For me it has only been a year come November but I am committed to doing anything I can to piss of my breast cancer. I'm not sure if going off of it is a viable option as I want to do everything I can to avoid recurrence. I look forward to the 5 year mark. I'll be 59 and hopefully still able to embrace my full life and pick up where I left off. Good luck on your journey, you are not alone in your frustration. Cheers, Canada Liz

  • meow13
    meow13 Member Posts: 1,363
    edited October 2019
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    Did a total of 4 years on anastrozole and then exemestane. Not looking back, done with it.

  • SarasotaLady
    SarasotaLady Member Posts: 11
    edited October 2019
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    Hi Canadaliz,

    Your post expressed the chronic pain that I feel as well, along with the leg muscle weakness that has left me wobbly and using a cane or walker. Just wanted to say that I know too well where you're coming from.

    Key difference between us is that I'm 77, and you're 59. I've already had 7 months of debilitating chemo for non hodgkins lymphoma, and can't see spending my remaining years in pain and difficulty walking. So your post has helped me focus my thoughts . No final decision yet, but I'll have to have a heart to heart with my MO.

  • April0315
    April0315 Member Posts: 167
    edited October 2019
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    I"m supposed to start this next week. Does anyone do ok on it? I keep reading about horrible side effects and I'm getting nervous to start.


  • Yuuki
    Yuuki Member Posts: 17
    edited October 2019
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    LimnoGal,

    I took what was supposed to be a ten-day holiday from Arimidex for surgery, and it turned into 24 days. Even in the hospital, the joint pain evaporated so fast I was turning down the painkillers and cavorting around the floor with my iv pole in utter amazement telling the nurses "you have no idea how good I feel!" So I truly, truly do understand how hard it is to swallow that first pill. But I did it. And yes, the SEs came back (and the weight gain stayed put, unfortunately).

    In my case, I have had two rounds of BC and was 99% ER+ when I recurred (also Grade 3), so the cost/benefit proposition was a no-brainer for me. With an unclear benefit, it would be much harder. Still, there are the options of trying anastrozole or exemestane, or even tamoxifen, before you decide you've had enough. Given that you are already off the Femara, it might be a good opportunity to switch (and your MO may be supportive enough of trying something different to change up your prescription and let you try something else before your appointment 6 weeks out). It certainly can't hurt to ask, and it might make that first pill a lot easier to take.

    It's hard to predict what will work for one person versus another. I hope you find something that works for you that you can tolerate.

    All the best to you,

    Yuuki

  • maureenb
    maureenb Member Posts: 47
    edited October 2019
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    April- I would also like to hear from people who do ok on Femara. I am sitting here looking at a bottle and I am so scared to take it. I feel like it's poison. But I've already had one recurrence and don't want another one so...

  • April0315
    April0315 Member Posts: 167
    edited October 2019
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    MaureenB

    Same here. it's sitting on my shelf. i asked if I could wait a few weeks after my last chemo and MO said fine, no longer than 3 weeks. THat's the 15th. He said to take calcium and vit d. I have also read fish oil to ease/avoid joint pain. When will you start? Maybe we can do this together?

  • jessie123
    jessie123 Member Posts: 134
    edited October 2019
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    April and Maureen --- wait for me -- I want to start with you -- my pills have been sitting in the cabinet since June 1st. Just can't bring myself to swallow. On a side note I have two friends on the pills -- they have absolutely no SE's --- one on Femara and one on the other pill.

  • meow13
    meow13 Member Posts: 1,363
    edited October 2019
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    My joint pain is gone. It took along time for it to happen. Night time is when the problems were nagging pain during the day I was fine.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited October 2019
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    i did a total of 8 years. Three years of tamoxifen and ovarian suppression followed by 5 years of an AI. Only issue was the simmering heat that I started feeling in the beginning and hasn’t eased up in the almost two years since I finished...I have adapted. I put a Frogg Togg around my neck to stay cool and treated myself to a wardrobe of layered clothes....Ceiling fan and air conditioning help, as well.

    The literature tells us that too many patients discontinue treatment before advised. I think there needs to be a better conversation between doctor and patient so it doesn’t get to that point. Reading comments here can certainly scare newbies. What patients have to remember is that all kinds of patients come to this message board with problems. Those who don’t have problems often don’t feel the need to find support here....


    So, please try to keep a healthy perspective and try not to think dark thoughts before beginning the medication. Also, try to keep a diary of how you feel. You might spot a pattern. That info should be shared with your team. Once I was told to take my med in the evening rather than the morning, I felt much better. Bottom line for me....it was doable with small changes...and my new wardrobe was a plus!

    Carpe Diem

  • April0315
    April0315 Member Posts: 167
    edited October 2019
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    Voracious Thank you for the reminder that folks that don't have issues don't post on message boards, Hey! I'm on this med and I feel great!!!

    Jessie... I'm starting the 15th as i told my MO I would. I'd love the company for the next 5 yrs! I have my calcium and vit d ready, just looking for a fish oil that has a good reputation for not burping up. Haven't looked too hard yet.

    Keeping a log of symptoms is a great idea.

    THanks!



  • Nanomom11
    Nanomom11 Member Posts: 27
    edited October 2019
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    For the ladies waiting to start your AI, I was in your exact place 2 months ago. I had gone thru surgery, chemo and radiation but that little pill terrified me. I held on to it for two weeks and finally convinced myself to take. I’ve been on it for about two months and am happy to say I have had minimal side effects. My biggest complaint is the joints in my hands are stiff now, but not horrible. I’m 41 so I wasn’t prepared for joint pain of any kind. A little stretching in the morning and I feel pretty good. I am taking Femara

  • windingshores
    windingshores Member Posts: 160
    edited October 2019
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    Please don't be scared of Femara or other AI's. I do have some pain but find that exercise makes it better. These meds supposedly halve our risk. It certainly makes sense to at least try it. I have been on for 5 years now. Hoping to continue for a couple more.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
    edited October 2019
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    HI April and Jessie

    Right there with you. I was supposed to start Femara last week - have the prescription filled but am scared to death to take it. I have a very physical lifestyle and being crippled with pain doesn't sound like it will work for me. But I have promised myself that I will start this week. So maybe all of us will luck out and not have any side effects. Agree that its scary though. Let me know how it goes for you.

  • simonerc
    simonerc Member Posts: 154
    edited October 2019
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    I too was super scared of the dreaded AI. I have been taking Anastrozole for 17 months. The first few weeks, I had lower leg pain, like shin splints. That went completely away after about 2 weeks. I do get the stiff fingers overnight. It takes about 5 minutes when I wake up for my fingers to loosen up. My knees are a bit sore, but they were before the AI! I had warm flashes, not hot, a few times a day for the first few months, not bad or unmanageable. I noticed in the beginning that drinking any alcohol made them worse. I really limit alcohol now. No problems with intimacy with my husband. Hair is just fine. I try to get really good exercise at least 5 or 6 days per week. Was a bit brain foggy at the beginning but I also had a ton going on so who knows if it was AI, but that is not an issue anymore. Hydrate, hydrate and hydrate again. I was 51 when I started. My oncologist reminds me there are other AI’s to try if the side effects of Anastrozole become undoable. I get how scary it is. Now I look at the pill every evening and say “Thank You”! Hopefully it will help keep me out of trouble! Good luck to each of you who are starting. I hope your experience is ok!

  • limnogal
    limnogal Member Posts: 100
    edited October 2019
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    I didn't mean to scare anyone off of taking their AIs with my post. They are effective at preventing a recurrence or progression for the right group of individuals. That's a great reason to take them, even if you have side effects. I know that there are women who have debilitating side effects, and my heart goes out to them. I took femara for 2 years with no real side effects to speak of (except for the body odor thing and the weight gain). The joint issues really started during year 3. I know plenty of women who have no real side effects and are happily taking their AIs for 10 years (or longer if their MO/insurance companies would let them). So, hold hands, support each other, and take your AIs, if they will help you!

    My issue is really the risk/benefit of taking AIs when there isn't a lot of research out there to show that they are effective for individuals with my stats - weakly ER+ at best (possibly ER-), totally PR-.

    Yuuki - excellent suggestion. I have a call in to my MO to see if he will prescribe me a couple of months of another AI.

    Best wishes to all of us on this cruddy road!

  • bravepoint
    bravepoint Member Posts: 232
    edited October 2019
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    LimnoGal - I am in a similar situation being very weakly ER+ (3%) and PR-. My MO feels that anything over 0% should be treated as positive. I started out on Letrozole and within 2 weeks was developing numbness in my right hand as well as lots of aches in my bones. It was diagnosed as carpal tunnel so my MO felt it was unrelated. Coincidence, I think not! I switched to Exemestane and gradually over 2 years my right hand is pretty much back to normal.It seems strange to me if I was diagnosed with carpal tunnel, didn't do anything other than physio that it got better. I'm not complaining as I am thrilled that it did! I do have some other SEs, a very dry mouth and tongue, insomnia, hot flashes and general achiness but all are manageable. I have 3 more years to go so I will try to stick it out. I am scared to stop....

  • maureenb
    maureenb Member Posts: 47
    edited October 2019
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    April and Jessie- did you start Femara yet?

    I made myself swallow that first pill on Monday. So I have taken 4 so far this week. I had a couple of headaches, which Advil fixed but that's about it. And the headaches may have nothing to do with Femara. Go take your pills and we'll do this together. We can report back here how we are feeling and any SEs.

    Can any of you experienced ladies let us know when SEs kicked in for you? Would I be feeling anything on day 4, or does it take a few weeks?

    I am supposed to take Ibrance too, but I have to wait and see how I do with this one first and then add it later.

  • limnogal
    limnogal Member Posts: 100
    edited October 2019
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    Bravepoint-I have requested that my MO switch me to one of the other AIs for a trial. I really did OK on femara for the first couple of years. I started having knee and hip issues during the third year. And while they say “anything over 0 is positive” I haven’t seen much in the way of data to back that up for treatment processes. Ugh.

    Maureen, April and Jessie - while I had some side effects from femara during the first two years, they were really pretty tolerable. It is within the third year that the bigger quality of life side effects kicked in.

    Please remember that many people successsfully take AIs

  • bravepoint
    bravepoint Member Posts: 232
    edited October 2019
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    LimnoGal- Agreed. I debated with myself whether to take an AI or not as the ultimate decision is mine of course. At the end of the day, I decided that if I didn't take it and I had a recurrence within the first 5 years, I would be kicking myself. I'm heading into my third and hoping things don't get worse based on your experience!

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited October 2019
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    good morning- there is a thread on here for those doing well on aromatase inhibitors-and most people do find it tolerable-really- --most common side effects are joint stiffness/pain, insomnia, and for some- shedding hair- I have been on letrozole for almost 2 years and have had all 3 but over many months the joint stiffness-mostly knees has all but leveled off-- keeping moving is huge--the insomnia managed with lifestyle changes-like dont let 4 dogs sleep with me- lol-and the hair shedding is mild-mostly after washing so only wash every 4 days.

    I also tried hard and succeeded in going into it with a positive attitude and looked at femara as my friend/guardian--giving me far better odds at warding off a recurrence---the alternative is far worse----I sat the bottle next to my coffee maker and taking it has become a routine--

    You can do this--you can--you got a lot of life left to protect--good luck,kaylie

  • April0315
    April0315 Member Posts: 167
    edited October 2019
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    MaureenB.. I have my bone density scan today, I will start the meds on Tues (I'm going away for the weekend). Glad you started and are just having a HA so far for a possible SE. I'll be joining you soon! Proud of you for starting!

  • maureenb
    maureenb Member Posts: 47
    edited October 2019
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    April- i never had a bone density scan. Wonder why? Have a fun mini vacation and don't think about BC for one second!

  • meow13
    meow13 Member Posts: 1,363
    edited October 2019
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    Getting my bone density scan next week. Last one was 2014.

  • jessie123
    jessie123 Member Posts: 134
    edited October 2019
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    Maureen -- so glad you've taken the pill --- I'm getting close. I want to get the flu shot first as this is supposed to be a very bad flu season --- then the next week I'll take the pill. Since the AI's can cause osteoporosis it's important to get a baseline DEXA to check your bone density. I have osteopenia which is one reason I don't want to take the pill. Aren't you glad that you've finally started -- one less thing to worry about.

  • ratherbesailing
    ratherbesailing Member Posts: 129
    edited October 2019
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    Just wanted to support the idea of possibly switching drugs to see if one works better for you than another. I had terrible joint pain on anastrozole. Switched to letrozole and, two years later, side effects are still minimal - maybe a little more stiffness in the morning of late. But I haven't been exercising as much, so that could be a contributing factor.

    Also, I had a much worse time with the generic versions of both AIs. My pharmacist tried several brands. He said I might be reacting to the binders used in the generics.

    While the published costs of both brand names are astronomically high (and insurance won't cover them) manufacturers AstraZeneca (Arimidex) and Novartis (Femara) have programs to help subsidize the cost.

    Arimidex runs $60/month out-of-pocket. You don't need insurance:
    https://arimidexdirectenrollment.eaglepharmacy.com...

    I get the Femara at no cost, but I think they only take commercial insurance, not Medicare or Medicaid:
    https://www.copay.novartisoncology.com/?name=kisqa...

    Of course, not certain this would help. But if you're struggling it might be worth a try.

    I believe my oncologist did say vitamin D helps with pain. And one other thought: A low carb diet finally helped me shed the ten pounds I gained on treatment and thought would never come off while on AIs. And I swear it also helped with joint pain. Other women who have tried low carb have told me the same thing.


  • G1973
    G1973 Member Posts: 49
    edited October 2019
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    hello all. I just started to follow this thread. I will start meds this week. I am also getting the lupron injection. Is anyone else

  • Sherayne
    Sherayne Member Posts: 1
    edited October 2019
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    Hi,

    I am new to this group and really to this forum and supposed to start Femara, I am waiting on my chemo side effects from my last chemo to lessen first. I am already having joint and bone pain.

    I am starting to grow my hair back and do not want it thinning or to lose it again.

    I have pre op for reconstruction on Wed (today) I am getting a PET scan on Thursday

    Next week I see Oncologist to get PET results and am supposed to have a bone infusion ( Zoledronic acid)

    I am not sure if I should get that until I start the Femara (if i bring myself to start it!)


    I see some of you are in the same boat.


    I tried to make my timeline but it is showing up all out of order!

  • moderators
    moderators Posts: 8,285
    edited October 2019
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    Sherayne - Welcome to Breastcancer.org! We're sorry that you have to be here, but glad you found us! We hope you're finding support and information from the community here. We're all here to support you!

    Please let us know if we can be of any assistance!

    The Mods

  • April0315
    April0315 Member Posts: 167
    edited October 2019
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    Sherayne.. I'm starting today. I did ask my MO if I could have a few weeks to get rid of some chemo effects, he agreed, but check with yours to see how long you can wait to start. I'm 3 weeks out now. I feel pretty good (not pre-chemo good, but so much better). I'm adding Vit D and Calcium supplements, so I took that this morning and will take my femara tonight. Fingers crossed all goes well!