Anyone else on Femara want to share

flopsy
flopsy Member Posts: 365
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was wondering if anyone else taking Femara would like to share experiences on this drug.  I have been taking it for about 7 wks now.  I finished rads treatment about 10 days ago and had chemo prior to that.  I am having a lot of problems with my eyes and mouth being very dry.  I wonder if others are experiencing this also.  I have been having a few hot flashes at night but really not too bad.   I take the Femara at night because it made me sick to take it in the a.m.  

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  • Gitane
    Gitane Member Posts: 1,885
    edited December 2010

    I have been taking Femara for almost 5 years.  My eyes are dry, so I use drops from time to time.  The only time it becomes a problem for me is when I want to wear my contacts.  I just have to keep them lubricated.  I also am getting cataracts.  I understand that is not unusual for someone my age who has had chemo and AI's.  I take mine when I get up in the morning.  My biggest SE is muscle and joint pain.  The hot flashes I had before I took Femara and the Femara has just kept them going.

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  • flopsy
    flopsy Member Posts: 365
    edited December 2010

    Gitane,  I first thought the eye thing was from rads but now I am thinking it is the Femara.  I have not had the joint pain much but have a lot of pain and burning in my feet but had some previously because I had a reaction to a drug that damaged my central nervous system and left me with some neuropathy in my feet.   I think the Femara may be making that worse because it had gotten better before I started taking Femara.   Have you taken any of the other hormone blockers or aromatase inhibitors?    This is the only one that I have taken.   Thanks for posting.  Ginny

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2010

    Interesting...I've been taking Femara since mid-August and I've been having trouble with my contacts for the last few weeks.  I thought it was just "winter dryness" but I guess maybe it's a side effect.  Fortunately, that seems to be the only side effect I've experienced. 

    Michelle

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  • Gitane
    Gitane Member Posts: 1,885
    edited December 2010

    Femara is the only endocrine therapy I've had. I haven't had any neuropathy so I don't know if that's an issue or not.  I plan to stay on it at the 5 year mark, hoping it's helping me and not hurting me.  

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2010

    Hi

    on femara since June'09.  Initially, the joint stiffness in hands and feet was really challenging.  I was concerned that I might not be able to exercise.  I am also on lupron because I am pre-menopausal.

    Worked out the stiffness with glucosomine chondriton, vitamin d--- it is really almost not noticable now and I am running again.  I think femara is hard on the bones, so be sure to have a bone density test--I have had 2--and the second one, although still in the normal range, showed some loss.

    The continued side effect for me- and it may be lupron, is vaginal dryness---so I have to work on that fairly regularly---

    I take it at night--- sleep like a baby--- and I found the se's really subsided when I started it at night.  my eyes are dry too--hadn't thought about the femara

    very few hot flashes

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  • flopsy
    flopsy Member Posts: 365
    edited December 2010

    A friend of mine just sent a post about chemo causing chronic dry eye also so it may be a combination of the two because I really had it bad during chemo but it got better a few weeks after chemo but started back after Femara and rads began so I am not sure what is affecting what but I do think the Femara is keeping it going.

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  • Survivor07
    Survivor07 Member Posts: 71
    edited December 2010

    I've been on Femara for about a year now. Had insomnia at first..but that eventually went away.  Also had relaly bad joint pain..but that was before I discovered Celebrex.  The Celebrex reduced the joint pain by about 75%. It was amazing!! Hot flashes are now under control as I have eliminated ALL processed surgar foods including sweets, candy, etc. That made a big difference. 

    I have to say, though, that the Femara SE's are nothing compared to the side effects I am now experiencing with Tykerb and Xeloda!

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  • flopsy
    flopsy Member Posts: 365
    edited December 2010

    I will try eliminating the processed sugar foods if I can.   Unfortunately, I love sweets but am learning to cook without sugar.   I am having some joint aches but nothing too terrible yet.  I hope I don't get that SE but I will try celebrex if I have to.  Thanks for sharing!     Ginny

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    I have been on Femara for six months now.  Joint and bone pain...mostly in the knees, hips (seems to rotate from one side to the other), wrists, fingers (especially my thumbs) and calves.  I have had arthritis for many years but the joint pain I am experiencing now is a lot more intense.  Hot flashes at night, constipation and yes dry eyes.  I just had my eyes checked a week ago and the dr said I have a mild case of cataracts. I don't know if that's from Femara or just old age (55).  So far, I've tolerated the SEs without any pain medication so they're not all that bad.  Marie

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  • Elisimo
    Elisimo Member Posts: 1,601
    edited December 2010

    Hi ladies,

    I started taking Femara in July '10 and I have found out a few things from trial and error. One is that I have fewer night sweats if I lower the amount of sugar I eat during the day, like sugar in tea or coffee, on cereal, candy, etc.  This past Monday I started taking it a night and then last night I did not have any night sweats and slept all night for the first time in a long time.   I have bone mets and arthritis so I have a lot of bone pain.  I have found that moderate exercise, bike riding, helps with some of the pain and drugs manage the rest.  I do have problems with my vision, sometimes it is okay and sometimes everything is a little out of focus.  Sometimes I need my glasses to drive and sometimes I see better to drive without them.  I had not heard about the cataracts connection to Femara so I will be watching out for that.  

    MW943 - 55 is not old ;-) 

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  • flopsy
    flopsy Member Posts: 365
    edited December 2010

    Marie and Amyjo,  Thanks so much for your response to my post.  I think we need to all try to help each other with these meds as much as we can because I know the Dr's can and will only do so much.  I am having a lot of spasms in my feet lately and my hands go to sleep a lot more these days so I guess that is probably coming from the femara also.  My eyes wake me at night sometimes because they feel like I have sand in them.

    BTW,  55 is not old because that is my age also!!!!  HA-HA   There are times that I do feel older than I am but I try not to let that get me down.

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  • cd1234
    cd1234 Member Posts: 169
    edited December 2010

    Hi Everyone,

    I just started Femara last Tuesday. I was terrified to take it, but too scared not to take it. So far I feel really good. Hope it lasts!

     Take Care! 

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  • kira1234
    kira1234 Member Posts: 3,091
    edited December 2010

    I've been on Femara a month. I have nightly sweats, but to be honist the most disturbing side effect for me is the memmory loss.

    On another note, how often does ILC present as a solid tumor? Mine was a solid tumor very small in size. My BS even had his people rerun the path report from the biopsy thinking there had been a mistake.

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  • flopsy
    flopsy Member Posts: 365
    edited December 2010

    Kira,  I had a solid tumor also of about 3.5 cms but it was not obvious on mammogram but showed on ultrasound and MRI.  I felt it first before imaging found but was a change in feel of tissue more like a thickening and then slight dimpling of skin.  It was tender also.  ILC is a solid tumor but more resembles the normal breast tissue on mammogram than ductal does.  I hope that answers your question.

    Still having problems with eyes on Femara.  They are getting really dry and hurt at night like I have sand in them.   Femara also causing me to be tired and hands fall asleep at night really bad while I am sleeping that wakes me up with discomfort in them.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited December 2010

    gin2ca, have you tried L-glutimate for the hands? If I miss my dose in the evening I wake with the hands falling asleep too. Have you tried eye drops for the dry eyes? My eyes are tearing, but my eye Dr. says the tearing is a sign of dry eyes as well. He has me using drops 3 times a day. I agree I am tired all the time as well. I think the hot flashes keep me awake which is causing the tiredness.

    As far as the tumor mine was seen on the mammagram. It was a very small round lump. That led to the ultrasound and the MRI. I feel very lucky it was found so small. It was only 6mm in size.

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  • flopsy
    flopsy Member Posts: 365
    edited December 2010

    I think the Femara is causing me to have bad muscle cramps in my feet and legs now.  Will the unending list of SE's never stop>>>>I don't think so!!!!!!   I sometimes feel like a little old lady with my bad feet, stiffness in getting up and going, and my short curly gray hair post chemo.

    I have been using the Dry relief eye drops but they only help minimally.   Now I have had a sty that did not totally heal that the Dr may have to cut off my eyelid.  I hate the thought of that.  Oh well, the joys of a BC patient.

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  • sunset1959
    sunset1959 Member Posts: 2
    edited April 2011

    I  had peripheral neuropathy caused by chemo drugs 5 years ago. In the 5 years I was on Tamoxifen this had virtually gone - just a hint of numbness in my feet. After 6 weeks on Femara it triggered off again in my feet and within 2 days was starting in my hands. I stopped taking it at that point as life was ceasing to be worth living. 5 weeks later I am still suffering with numb feet and numbness in my lower body but feel generaly better. I wouldn't recommend this drug to my worse enemy.

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