femara

jphilpo
jphilpo Member Posts: 177
edited March 2014 in Breast Cancer #1
Hi everyone,

I have not posted lately as I have been recovering from a DIEP flap reconstruction and bi- lateral mastectomy. I am doing much better with that. My problem is with femara. I have been on it since February and today I called my onc. and told the nurse that I can't take the side effects anymore. I hobble in the morning because my feet hurt so bad and my knees are so painful. He said since I have my next appt. Sept.28th, just to stop taking it and we will discuss it then. I tried my best , but I am suffering so much. It's really funny. I've had a double mastectomy, chemo, radiation and recontruction and one tiny pill is doing me in.

Anyhoo............... I just wanted to share.

Jean

Comments

  • lizziejane
    lizziejane Member Posts: 69
    #2
    FEMARA
    LET US KNOW WHAT HE PUTS YOU ON AND HOW IT AFFECTS YOU. I AM ON FEMARA AND WALK LIKE A BOARD WHEN I GET UP IN THE MORNINGS, AND ALSO HAVE PAIN IN KNEES ARMS, FEET, HANDS, SHOULDERS----AND ALSO LEG CRAMPS AT NIGHT.....
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #3
    Hi Jean,
    Tht one little pill
    Hi Jean,
    Tht one little pill did me in as well. Your symptoms and an extra one of horrible mood swings.
    I changed to Arimidex about 2 months ago and the last 2 weeks have been awful with pain in hands, feet and legs. No mood swings though, so I tried to stay on it.
    Last week I tried to walk Newbury Strret in Boston to celebrate my granddaughters' 18th birthday and my legs felt like weights under me. I am now off for 5 days and already am on the upswing. I was told to stay off for 2 more weeks to get back to my baseline then we will try something else. I'm so afraid that the last one Aromisin will cause this same problem. Then what? I have to be on something to fight this beast!
    Sorry for the long post and I hope that all works out for you.
    All the best,
    Wanda
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #4
    Have you checked your
    Have you checked your vitamin d level lately? Before you give up on femara, please check your vitamin d, 25-hydroxy total (simple blood test). Low vitamin d levels really exacerbate the aches and pains.

    See: http://www.breastcancer.org/treatment/hormonal/new_research/20091215.jsp
  • jphilpo
    jphilpo Member Posts: 177
    #5
    CypressCynthia said:

    Have you checked your
    Have you checked your vitamin d level lately? Before you give up on femara, please check your vitamin d, 25-hydroxy total (simple blood test). Low vitamin d levels really exacerbate the aches and pains.

    See: http://www.breastcancer.org/treatment/hormonal/new_research/20091215.jsp

    femara
    It helps to know I am not alone. As far as the vitamin D is concerned, I take 5000mgs. a day so ,.... mood swings are an issue as well. I know that is because I am in pain all the time.
  • jphilpo
    jphilpo Member Posts: 177
    #6
    Lighthouse_7 said:

    Hi Jean,
    Tht one little pill
    Hi Jean,
    Tht one little pill did me in as well. Your symptoms and an extra one of horrible mood swings.
    I changed to Arimidex about 2 months ago and the last 2 weeks have been awful with pain in hands, feet and legs. No mood swings though, so I tried to stay on it.
    Last week I tried to walk Newbury Strret in Boston to celebrate my granddaughters' 18th birthday and my legs felt like weights under me. I am now off for 5 days and already am on the upswing. I was told to stay off for 2 more weeks to get back to my baseline then we will try something else. I'm so afraid that the last one Aromisin will cause this same problem. Then what? I have to be on something to fight this beast!
    Sorry for the long post and I hope that all works out for you.
    All the best,
    Wanda

    femara
    Thanks for responding. I am so interested to hear what my dr. says. The nurse told me I have other options, so we will see.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #7
    jphilpo said:

    femara
    It helps to know I am not alone. As far as the vitamin D is concerned, I take 5000mgs. a day so ,.... mood swings are an issue as well. I know that is because I am in pain all the time.

    I am also on daily vitamin D
    I am also on daily vitamin D and it didn't help.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #8
    Lighthouse_7 said:

    I am also on daily vitamin D
    I am also on daily vitamin D and it didn't help.

    sorry forgot
    to tell you the 3 choices for me were Femara, Arimidex and Aromisin. Tamoxifen wouldn't work for me, I was told by my Onc.
    Hugs,
    Wanda
  • jphilpo
    jphilpo Member Posts: 177
    #9
    Lighthouse_7 said:

    sorry forgot
    to tell you the 3 choices for me were Femara, Arimidex and Aromisin. Tamoxifen wouldn't work for me, I was told by my Onc.
    Hugs,
    Wanda

    femara
    I was told the same about tamoxifen. Please let me know about the Aromison. I pray that it works for you.

    Hugs back,
    Jean
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #10
    jphilpo said:

    femara
    It helps to know I am not alone. As far as the vitamin D is concerned, I take 5000mgs. a day so ,.... mood swings are an issue as well. I know that is because I am in pain all the time.

    Levels?
    Not to harp on this, but my sister is a physician and often has to put patients on more than 5000IU per day. If you haven't had your vit d level checked, you can not possibly know what your level really is. You are treating yourself in the dark.

    Check your level and if it is low, I recommend seeing a reputable endocrinologist until your levels are normal and stable. I WAS taking vit d and my level was critically low.
  • jphilpo
    jphilpo Member Posts: 177
    #11
    CypressCynthia said:

    Levels?
    Not to harp on this, but my sister is a physician and often has to put patients on more than 5000IU per day. If you haven't had your vit d level checked, you can not possibly know what your level really is. You are treating yourself in the dark.

    Check your level and if it is low, I recommend seeing a reputable endocrinologist until your levels are normal and stable. I WAS taking vit d and my level was critically low.

    levels
    Thanks for the input. I will definitely ask my onc about it.

    Jean
  • myturn
    myturn Member Posts: 11
    #12
    Maybe this will help
    I have not posted on here for a very long time, but I check here every day and I have learned alot and it has helped me very much. I have been on femara since Feb also. I had the same problem. Went to see my onc. and I asked him about taking glucosamine/chondroitin. Someone suggested it to me. He said to go ahead and give it a try.(He didn't seem very enthusiastic about it) I have been taking it for 3 weeks now and it seems to be helping some. I still have some pain in my knees and feet in the morning, but compared to the way it was this is wonderful. I almost quit taking it because I didn't think it was doing any good, but after about 2 and half weeks I have seen an improvement. Maybe it is all in my mind but I will take what I can get. I look funny walking like a duck.
  • myturn
    myturn Member Posts: 11
    #13
    Maybe this will help
    I have not posted on here for a very long time, but I check here every day and I have learned alot and it has helped me very much. I have been on femara since Feb also. I had the same problem. Went to see my onc. and I asked him about taking glucosamine/chondroitin. Someone suggested it to me. He said to go ahead and give it a try.(He didn't seem very enthusiastic about it) I have been taking it for 3 weeks now and it seems to be helping some. I still have some pain in my knees and feet in the morning, but compared to the way it was this is wonderful. I almost quit taking it because I didn't think it was doing any good, but after about 2 and half weeks I have seen an improvement. Maybe it is all in my mind but I will take what I can get. I look funny walking like a duck.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #14
    jphilpo said:

    femara
    I was told the same about tamoxifen. Please let me know about the Aromison. I pray that it works for you.

    Hugs back,
    Jean

    I will let you know Jean.
    I will let you know Jean. Won't be doing anything until September 8th but I will let you know.
    Wanda
  • mwallace1325
    mwallace1325 Member Posts: 806
    #15
    I stopped taking femera on my own
    and about two weeks later the joint pain and mood swings have subsided. What a great relief since depending on my mood I'd either hate the femera or be convinced it was bone mets.

    Now that I know, I'll go back on it. It's good to know the effects will clear up.
  • Kiantae
    Kiantae Member Posts: 29
    #16
    Femara and Vitamin D
    I have been on Femara since May and have had some joint pain, but the last couple of weeks it seems like it has been getting worse. My feet feel like stumps most of the time and it takes a few steps to be able to stand walking. I generally just feel achy. Just before I was diagnosed with BC in Dec '09, my doctor informed me at my annual physical that my Vitamin D level was low. Vit D levels should be around 50 and mine was 16. I started doing prescription supplements around that time which helped. My levels were on their way up and then the whole surgery, radiation and associated fun took place. Before finding out about the Vitamin D and BC issue, my immune system was shot. In Oct '09 I got the H1N1 flu, followed by my first UTI, then BC diagnosis. I just did a blood test to check Vit D again last week and again I am low (27). I also had my second UTI about 3 weeks ago. Have prescription Vit D to take 3 times a week this time to see if I can get back to 'normal', whatever that is. Feels like deja vu. I meet with my Oncologist on 9/19 so I am hoping I will be able to tell whether the pain is Vitamin D or the femara.
  • filimu
    filimu Member Posts: 74
    #17
    Kiantae said:

    Femara and Vitamin D
    I have been on Femara since May and have had some joint pain, but the last couple of weeks it seems like it has been getting worse. My feet feel like stumps most of the time and it takes a few steps to be able to stand walking. I generally just feel achy. Just before I was diagnosed with BC in Dec '09, my doctor informed me at my annual physical that my Vitamin D level was low. Vit D levels should be around 50 and mine was 16. I started doing prescription supplements around that time which helped. My levels were on their way up and then the whole surgery, radiation and associated fun took place. Before finding out about the Vitamin D and BC issue, my immune system was shot. In Oct '09 I got the H1N1 flu, followed by my first UTI, then BC diagnosis. I just did a blood test to check Vit D again last week and again I am low (27). I also had my second UTI about 3 weeks ago. Have prescription Vit D to take 3 times a week this time to see if I can get back to 'normal', whatever that is. Feels like deja vu. I meet with my Oncologist on 9/19 so I am hoping I will be able to tell whether the pain is Vitamin D or the femara.

    I've been on Femara
    for about 10 months so far, and at first the hot flashes were the worst, along with the mood swings, but then I was going straight from high dose estrogen to being taken off that and put on the Femara - so it was like hitting a cement wall at 120 mph. I mean they wiped me out, to the point I couldn't stand up, just felt like somebody pulled the plug on me and I had no insides to hold me vertical. My body would heat up, but I never sweated profusely, and eventually, after several months, they've ended, or at least have gone to a low roar. I get a flash now and then, but it's a small one, and I just kinda hold my breath and know it will pass in a minute or so, and it does.

    Joint aches haven't been a problem of this med, but it has TOTALLY dried me up. It's ended my sex life, because it's too painful because of the dryness, and nothing alleviates it. Thank God I've already had a hysterectomy, cause I'd probably kill any gynocologist who tried to examine me now, just cause of the pain it would cause. I haven't seen anybody else mention this. Am I an anomoly?? Thank God my sweetie thinks it's better I'm alive no matter what, but it drives me up a wall! The onc doc says when I'm off this med, things might be better, but who knows That old "whatever the new Normal will be"..and nothing he's suggested so far helps. He won't let me even THINK about anything that's got estrogen or acts as an estrogen substitute - I'm beginning to feel like Mother Inferior....(that's supposed to be a joke-I'm laughing at myself.) But I'm REAL tired of it~
  • survives
    survives Member Posts: 254 Member
    #18
    filimu said:

    I've been on Femara
    for about 10 months so far, and at first the hot flashes were the worst, along with the mood swings, but then I was going straight from high dose estrogen to being taken off that and put on the Femara - so it was like hitting a cement wall at 120 mph. I mean they wiped me out, to the point I couldn't stand up, just felt like somebody pulled the plug on me and I had no insides to hold me vertical. My body would heat up, but I never sweated profusely, and eventually, after several months, they've ended, or at least have gone to a low roar. I get a flash now and then, but it's a small one, and I just kinda hold my breath and know it will pass in a minute or so, and it does.

    Joint aches haven't been a problem of this med, but it has TOTALLY dried me up. It's ended my sex life, because it's too painful because of the dryness, and nothing alleviates it. Thank God I've already had a hysterectomy, cause I'd probably kill any gynocologist who tried to examine me now, just cause of the pain it would cause. I haven't seen anybody else mention this. Am I an anomoly?? Thank God my sweetie thinks it's better I'm alive no matter what, but it drives me up a wall! The onc doc says when I'm off this med, things might be better, but who knows That old "whatever the new Normal will be"..and nothing he's suggested so far helps. He won't let me even THINK about anything that's got estrogen or acts as an estrogen substitute - I'm beginning to feel like Mother Inferior....(that's supposed to be a joke-I'm laughing at myself.) But I'm REAL tired of it~

    Long time Femara survivor
    I've been on Femara 4 years now. Everyone of you has my sympathy, and if you can hang in, the se's may lessen. If not, there are other ai's out there if you can't tolerate Femara. I was lucky in that my se's were few and far between. At first, it caused sleeplessness, but taking it in the morning has straightened that out. As far as aches and pains...oh, ouch!! I've had my share of those. Before you get out of bed, do some flexes of your feet, and stretch gently. That will help. You may still hobble around, but it doesn't last as long. Also, Aleve at night helps. I think because we're still, Femara just tightens everything up. I don't have to take it anymore, but I would take it in the morning, then at night. It did make a difference. CHECK WITH YOUR DOCTOR FIRST. I'm just saying that this is what worked for ME. Also, I did yoga. That helped more than anything, and finally was able to quit Aleve. Glucosamin chondrontin may help. It takes awhile to get into your system. Good call on the Vitamin D....my doctor has me taking that along with calcium, as I do have osteopenia.

    No, Filimu, you are not alone when it comes to dryness. There are, however, lubricants that we can use that don't contain estrogen, and are helpful there. Again, speak to your doctor for advise.

    Keep your dialog going with those doctors......if we don't tell them what's happening, they can't help us. AND, with most of my se's, my pcp was the best source! Don't know why, but she was.

    Hope this helps a little.

    Jennifer

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