Starting Femara

mgm42
mgm42 Member Posts: 491 Member
edited March 2014 in Breast Cancer #1
First let me say that I'm of those 1 - 5% of breast cancer patients who experiences most all of the side effects in the book. Whether it's chemo, radiation, or aromatase inhibitors, I have serious side effects. I'm known to a few of my girlfriends as the side effects kid - or should I say, "senior." So, please don't read what I'm about to say and think that all of this will happen to you.

I've been on Arimidex, Aromasin, then back on Arimidex. I could tolerate most of the common side effects like stiffness in the joints, feeling arthritic when getting up after sitting for a while, slight depression, etc. But, the most serioulsy debilitating side effects of these two drugs for me were the severe muscles spasms (charlie horses) in my neck, throat, torso and forearms. When they hit in my neck and throat, I would panic and when they hit in my forearms, it felt like my arms were painfully paralyzed. This happened several times throughout the day. Prescribed muscle relaxants didn't help. I was tested for lupus, rheumatoid arthritis, heart disease, stroke, you name it. All tests showed up negative which led to the conclusion that medications were causing my problems.

Being the eternal optimist that I am and determined to stay on AI's, today I started on Femara, the third and last drug in AI arsenal. I don't know if I'll make it for another 3 1/2 years, but I'm going to try.

Hope I didn't bore anyone, but I just had to tell people who would understand where I'm coming from. Thanks. Hugs, Marilynn

Comments

  • m_azingrace
    m_azingrace Member Posts: 399
    Femara
    My dr started me on Femara a month ago. This is the only drug I've been on. So far, the most noticable side effect for me has been hot flashes (like having menapause all over again). Not a bad tradeoff in my opinion. I can tolerate them, especially now that winter is coming. Marilyn, I hope that is your only problem too. I do also have to get Zometa once a month to keep my bones strong. I didn't fare so well with the first treatment, but I'm optimistic that it won't be so severe each time, based on what I've heard from others.
  • mimivac
    mimivac Member Posts: 2,143
    Good luck, Marilynn!
    I am keeping my fingers crossed that this is the right one for you and that you sail through with minimal side effects this time. Those muscle spasms sound scary and painful. Whatever happens, you know you've done your absolute best to stay on these medications. I am betting this is the one, Marilynn.

    Mimi
  • HillBillyNana
    HillBillyNana Member Posts: 107
    Thank you, Marilyn, for posting
    I am going to start taking Femara in December. I took Tamoxifen for 5 years which ended in July of this year. I am going in November for a baseline bone scan. I want to stay in touch with you about the Femara. I posted on one of the threads asking about it, but my thoughts are sometimes not very put together. :) I wanted to be completely off any medication for 6 months. I am only taking the ativan to help me get a good night's sleep. So I am trying to notice if my hot flashes have decreased in frequency as well as intensity. I am 64 and would think I am through menopause. I think I have fewer of the hot flashes. I don't wake up with them (probably because of taking the ativan). But I am still having them. I did have pretty bad charlie horses but never connected them to the tamoxifen. Hmmmmmmm? I take quinine for the charlie horses. I will have to talk to the oncologist about that. Please keep me posted about your side effects. I happen to be one of those people who rarely suffer side effects from anything. But I wanted to be 'drug free' when I start the Femara. You certainly did not bore me. Thanks for the post. Inez
  • m_azingrace
    m_azingrace Member Posts: 399

    Thank you, Marilyn, for posting
    I am going to start taking Femara in December. I took Tamoxifen for 5 years which ended in July of this year. I am going in November for a baseline bone scan. I want to stay in touch with you about the Femara. I posted on one of the threads asking about it, but my thoughts are sometimes not very put together. :) I wanted to be completely off any medication for 6 months. I am only taking the ativan to help me get a good night's sleep. So I am trying to notice if my hot flashes have decreased in frequency as well as intensity. I am 64 and would think I am through menopause. I think I have fewer of the hot flashes. I don't wake up with them (probably because of taking the ativan). But I am still having them. I did have pretty bad charlie horses but never connected them to the tamoxifen. Hmmmmmmm? I take quinine for the charlie horses. I will have to talk to the oncologist about that. Please keep me posted about your side effects. I happen to be one of those people who rarely suffer side effects from anything. But I wanted to be 'drug free' when I start the Femara. You certainly did not bore me. Thanks for the post. Inez

    "drug free"
    Inez, I am curious for the reason you want to be 'drug free' to start the Femara? Does it interact adversely with other treatments or what? Unless you are dancing with NED, 6 months seems to me a long time to go without treatment. My journey is just beginning, so I'm still learning how many different ways there are to attack this beast. Hugs, Gracie
  • HillBillyNana
    HillBillyNana Member Posts: 107

    "drug free"
    Inez, I am curious for the reason you want to be 'drug free' to start the Femara? Does it interact adversely with other treatments or what? Unless you are dancing with NED, 6 months seems to me a long time to go without treatment. My journey is just beginning, so I'm still learning how many different ways there are to attack this beast. Hugs, Gracie

    Dancing with NED!!!
    By all means 'attack the beast'!!! Your journey will not be easy but is certainly doable. Learn! Learn! And make your decisions based on knowledge. That is what I am trying to do. I was diagnosed in October of 2003. Just weeks before my second anniversary!! My husband and my daughter went with me to every appointment. We all three listened and we all three asked questions. The doctors were wonderful. They listened and answered. This is a great place to find answers also. I did not come here when I was in chemo and radiation. I don't really know why. I signed up but stayed away. I think I was afraid I would hear 'bad stories' but of course that is not the case. These are all wonderful, strong, loving women. I wish I had come here earlier.

    Yes, I am sure in my own mind that I have no cancer in me. BUT: the cancer doctor wants me to take the Femara. For 5 years. I have already taken Tamoxifen for 5 years. I took Premarin up till the day of my diagnosis. I started taking it to control hot flashes. I probably took it for 10 years. And my tumor turned out to be ER. So I have never been without something in my system since I started having hot flashes. I want them to end. Was the Tamoxifen causing them? I don't know. So I asked the cancer doctor if it would be ok if I go 6 months with no medication to see if the hot flashes stopped. She said "that is a fine option". So here I am and I am still having hot flashes. I will have a bone scan in November for a baseline and start the Femara in December. Two months to go to see if the hot flashes are related to medication or just my lot in life. I do take ativan at night so I can sleep through the hot flashes. I have taken it so long I can't go to sleep without it. Any suggestions for that? I do beleive a good night's sleep is worth what it takes to get it.

    Stay positive. Keep asking questions.
    Inez
  • HillBillyNana
    HillBillyNana Member Posts: 107
    How is it going with the Femara?
    Hi Marilyn, I hope you are doing well. How are you doing on the Femara? Any side effects? I love your profile picture. Your smiling face makes me want to know you.
  • m_azingrace
    m_azingrace Member Posts: 399

    Dancing with NED!!!
    By all means 'attack the beast'!!! Your journey will not be easy but is certainly doable. Learn! Learn! And make your decisions based on knowledge. That is what I am trying to do. I was diagnosed in October of 2003. Just weeks before my second anniversary!! My husband and my daughter went with me to every appointment. We all three listened and we all three asked questions. The doctors were wonderful. They listened and answered. This is a great place to find answers also. I did not come here when I was in chemo and radiation. I don't really know why. I signed up but stayed away. I think I was afraid I would hear 'bad stories' but of course that is not the case. These are all wonderful, strong, loving women. I wish I had come here earlier.

    Yes, I am sure in my own mind that I have no cancer in me. BUT: the cancer doctor wants me to take the Femara. For 5 years. I have already taken Tamoxifen for 5 years. I took Premarin up till the day of my diagnosis. I started taking it to control hot flashes. I probably took it for 10 years. And my tumor turned out to be ER. So I have never been without something in my system since I started having hot flashes. I want them to end. Was the Tamoxifen causing them? I don't know. So I asked the cancer doctor if it would be ok if I go 6 months with no medication to see if the hot flashes stopped. She said "that is a fine option". So here I am and I am still having hot flashes. I will have a bone scan in November for a baseline and start the Femara in December. Two months to go to see if the hot flashes are related to medication or just my lot in life. I do take ativan at night so I can sleep through the hot flashes. I have taken it so long I can't go to sleep without it. Any suggestions for that? I do beleive a good night's sleep is worth what it takes to get it.

    Stay positive. Keep asking questions.
    Inez

    Hot flashes...
    Inez, thanks for the detailed response. Congratulations on "Dancing with NED". My journey is just beginning, so I'm only flirting with NED right now. He's avoiding me for the moment. One day at a time.

    I have been taking Femara since August 31 this year, and have noticed an increase in the hot flashes, both in frequency & intensity. However it's nothing I can't tolerate. Whatever it takes.

    I have found that regular light exercise has helped with the flashes. I use a mini-trampoline (not a cheapie...been there, done that...suffered for it). Walking is good, but our neighborhood has a number of not-so-friendly dogs and even though they are confined or chained, they scare me. What if one got loose? I don't want to risk it.

    I wish you continued success in your journey toward complete health. Hugs, Gracie
  • mgm42
    mgm42 Member Posts: 491 Member

    How is it going with the Femara?
    Hi Marilyn, I hope you are doing well. How are you doing on the Femara? Any side effects? I love your profile picture. Your smiling face makes me want to know you.

    Day 5
    Thanks for asking. It's only day 5 and probably too soon to tell, but so far, so good. I attended a breast cancer symposium at Northwestern University Hostpial yesterday and learned so much, including that side effects have everything to do with the way your body metabolizes medications. That's why there is such a difference from one person to the next when taking the same drug like Arimidex, Femara, etc. Somehow, that little piece of knowledge made me feel a whole lot better. Guess now I know that I'm not a baby nor am I nuts. LOL. Take care. Hugs, Marilynn