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Comments

  • LindaBusEd
    LindaBusEd Member Posts: 20

    Femara users,

    I guess interrupted sleep is going to be our way of life for awhile. Luckily, I am retired so I sleep whenever I get tired during the day. Has anyone had any problem with swelling in your lower extremities? 

    Have a great day!  Linda

  • mmliv
    mmliv Member Posts: 7

    mmm5, gaynore, linda, - interesting about sleep.... I am sleeping OK but now I remember my dreams. Odd. As far as aches and pains - I had shoulder pain, but with lifting weights that pain has almost disappeared. I am experiencing other minor aches, but much better than what I had with chemo. 

    linda - I still am having some swelling, but it started about 5-6 weeks post chemo. Rad doc said it wasn't radiation and I hadn't started Femara at that time. I still have some swelling but it is much better. I think it takes awhile for chemo SEs to disappear. Still am losing eyebrows!!!! Eyelashes are starting to grow...... unfortunately the hair on my head is growing the slowest!!!! I even had to shave my legs this week.

    Mary L 

  • golfer779
    golfer779 Member Posts: 410

    Hi Ladies, I was one to moan and groan about my Femara aches and pains a few months ago. 

    Started Femara in September .... had a rough go of it for quite a while.  Started massage therapy in January (about every 10 days), then added accupuncture in Feb.  Have done 6 appts of the pin doctor.  Taking D3, Magnesium, Calcium w/D, Fish Oil and Gluocasomine.  Long story short, still have the achies (mainly for me in my upper extremeties and feet), but once I get moving throughout the day they subside dramatically.  I'm finally coming to realize that yes, I may look like an old lady after I sit for a while and then get up to move, and the mornings are ugly, but in the long run once I'm up and moving I do pretty well.   I swear if I we're put in a machine that kept my limbs moving while I sleep I would wake in the morning feeling much better than after being imobolized and then wanting to bounch out of bed.

    On the sleep front ... hate to say it but I've added to my arsenol of vitamins and continued to take .5mg of Lorazepam for sleep since my date of diagnosis back in Oct 07.  My thought, no sleep .... when working full time and enjoying being a very active person doesn't go hand in hand.

    I did try to switch from Femara to Arimidex for a short period of time ... no significant improvement so went back on Femara.

     Good luck ladies ... Carol 

  • artsee
    artsee Member Posts: 701

    mmm5....Yes, I've had interrupted sleep for a long time. The one drug I was on, turned out to be the culprit that  was raising my liver enzymes too.  So now I take Melatonin 3mg. a night.It works for me but my sleep is pretty much over by 4:30. Eventually I would go back to sleep but the return of my heart palpitations keep me from going back to sleep most of the time. It's annoying and the more you think of your heart stopping the harder it is to sleep.(sigh) I think chemo just wrecked everything that was good.

    Pleasant dreams sisters, Artsee

  • Monty
    Monty Member Posts: 146

    Hi Ladies,

    Sounds like we all have interrupted sleep then!  Melatonin is not available in Canada so that's not an option I can look at.  Guess I'll have to ask for more sleeping pills fromthe doc instead.  Carol, I agree working full time and keeping an hectic schedule does not go hand in hand with no sleep.  The aches & pains etc are insignificant to me if only I could get a full nights sleep.

    At least for now the stomach problem seems to have subsided, just have to watch what I eat and when.  I haven't considered switching to another AI as  the things I have read make the others sound far worse.  Femara is my onc's drug of choice and for now I'll stick with it.  I did mention to my husband about stopping the meds altogether as I had my ovaries removed so there should be very little estrogen being produced in my body now but he didn't seem too keen on the idea.  He suffers with arthritis, having a 2nd hip replacement in June (first one done at age 44) so I don't like to talk about my little aches & pains etc when I know how much pain he suffers from on a daily basis, mine pale in comparison.  I guess I am just not used to taking meds on a regular basis, and because I was never ill with this disease I wonder why I put my body through these side effects, maybe if I had suffered either with the disease or the chemo & rads I would be thinking differently. Who knows .... for now I'll keep taking the pills.

    Well the phones are ringing here at work so I had better get some work done, at least with this typing it loosens up my stiff fingers.

    Love to all, take care

    Gaynor 

  • mmm5
    mmm5 Member Posts: 797

    Artsee-

    Which drug was elevation LE's, mine went higher when I began Arimidex and Bisphos trial, but last week they doubled with Femara and Melatonin. My Doc told me DONT TAKE MELATONIN it messes with your liver. I don't know what to believe is it the Femara, Melatonin, or combination of Herceptin, Melatonin, Supplements, AI, and Bisphos trial? (lots of drugs I never took before) also I had 2 glasses of red wine the night before blood work so I suppose that could contribute but really tired of scewed tests

  • crazy4carrots
    crazy4carrots Member Posts: 624

    Gaynor -- just wanted to let you know that Melatonin is now available.  I bought mine at Shoppers Drug Mart about 6 months ago.

    Estrogen continues to be produced by the adrenal glands, after ovaries are removed.  It's what keeps our joints from aching and our wrinkles at bay.  Since I started Femara last August, I feel at least 10 years older, and starting to look like it too.....<sigh>

    Cheers, Linda

  • Monty
    Monty Member Posts: 146

    Hi LInda,

    Thanks for the info, maybe I'll ask my onc about melatonin after all - are you finding it makes any difference?

    I wonder what percentage of estrogen our adrenal glands continue to produce?  Maybe I'll research that when I have a chance. 

    Cheers Gaynor

  • crazy4carrots
    crazy4carrots Member Posts: 624

    Gaynor, I bought the melatonin but haven't taken any yet!  I haven't talked to either my onc or my gp about it, and I'm still trying to research it as much as I can.  I did learn (here, as a matter of fact!) that you should purchase the synthetic (which mine is - Vivitas, 3mg, made by Purity Health Products in Acton, ON).  Fortunately, I haven't had sleep problems, other than waking up several times in early morning.  Melatonin may help that problem.  Guess I'll find out when I try it!

    Cheers, Linda

  • beargrass
    beargrass Member Posts: 5

    Hi,

    I wrote last week about back pain.  My onc's partner was on call and prescribed vicodin. It helped a lot.

    It's getting better. I think that I rushed to blame the Femara.  I think it is from moving four heavy bags of soil amendment on Weds.  I'm taking ibuprofin and wearing cold packs in addition to the vicodin. I am hoping for the best. 

    Best to all

  • artsee
    artsee Member Posts: 701

    mmm5.....I was on Ametryptiline and it does cause a rise in LE. But so does Aromasin. I'm off both and Femara may also do it. I'll find our in June when I get another blood test. Who knows...it could be all of the pills in the mix. I eliminated everything one by one and the Amitryptiline made them go up when it was the only thing I was on. I don't know what I'll do if they go up again. I'm so tired of these guessing games. I don't think it's a good idea to have wine before blood drawings. It is a tell tale sign. Who told you that Melatonin raises enzymes?

  • Mom_of_boys
    Mom_of_boys Member Posts: 101

    Okay.... question for everyone.  I will be starting Femara "soon" I guess.  Finishing my last chemo on Wednesday... starting rads 2-3 weeks after that... onc said I "could" (makes it sound like a prize) start Femara as soon as I start the rads. 

    Here's the question... WHY would my onc recommend Femara over Tamoxifen?  I trust her, but I just wanted some feedback from you ladies.

    Thanks in advance.

    ~Jan~

  • MsKarin
    MsKarin Member Posts: 105

    Jan I don't know your menopausal status but tamoxifin is for pre-menopause and Femara after menopause. Another factor is tamoxifin causes more heart problems.

    Edited to add: My onco had me wait to start Femara until rads were completed.

  • Mom_of_boys
    Mom_of_boys Member Posts: 101
    Thank you, Karin.  I was premenopausal but opted to have my ovaries/tubes removed prior to my lumpectomy.  I'm glad you said your onc had you wait... that is really what I want to do as well!
  • Ann2800
    Ann2800 Member Posts: 3

    Hi everyone!

    I had breast cancer 10 years ago.  Had cancer in all four quandrants of the breast.  I was 38.  I had radiation, chemo and took tamoxifen for 8 years  I just couldn't stop it.  It was keeping me in menapause.  I started to gain weight and stopped it two years ago.  Last month my hip started to hurt.  I had it x rayed.  I was a pending fracture the cancer had gone to my femur and was pretty bad.  They did a hip and part femur replacement.  I never knew the second place it sometimes go's is the spine or femur.  they have did a one scan and found it no where else.  The surgery was 6 weeks ago and I've kicked away my walker and now gave up my cane and i'm walking again. 

    She is putting me on Lupron, Femora and Zemeda.  hope spelled correctly.  They have found zameda not only strenthens the bones but is a protection from bone cancer in studies.

    Ladies anything you can tell me?  I'm back at work and I'm not going to let  this get me down.

    I was clean for 10 years......  I can do this again!!

    Anne

  • Monty
    Monty Member Posts: 146

    Hi Ladies,

     Linda - I found Melatonin at the grocery store yesterday so I bought some and tried for the 1st time last night.  I only woke up once which was amazing however, this morning I woke with a huge headache, did you find the same?

    Last night I coudln't believe the aches and pains I had.  I was fine during the day but during the evening my hips, legs and ankles hurt, particulary my right ankle - it felt like I had twisted it or something.  This morning that had subsided but now my left ankle is feeling similar.  Oh well, maybe a bit of walking around the office today will make it wear off. Here's hoping.

    Anne, were you taking anything after you stopped the tamoxifen? It was sad to hear after 10 years clean that the cancer came back! I guess that's what we all fear. It seems that will always be with us all.  Having been with this thing so long did you find at any stage that the worry subsided.  It's a year tomorrow since I first visited my family doctor with THE LUMP, can't remember any previous doctors appointments being so significant - but then again never had symptons of cancer proior to that.  The last year has gone by so fast and yet it feels like cancer has been such a huge part of my life forever now, guess it's still early days. I just hope one day I'll wake up & not immediately think about it - hard with the body changes it's made though, the scar will always be a constant reminder for all of us I guess.

    Well time to go, moans and groans over, thanks everyone for listening.

    Have a great weekend.

    Love

    Gaynor

  • angie27
    angie27 Member Posts: 179

    Hi Ladies,

    Count me in for the lower back pain, I have being on Femara since November 2008, and there are days that I feel like 100 years old with the bone pain all over, but mostly lower back and joints.

    Does this ever get better........(lol)

  • mmm5
    mmm5 Member Posts: 797

    Artsee my Oncologist told me about Melatonin and the liver, she mentioned that several women have had issues with Melatonin and their livers! I had a doubled liver enzyme count last visit and I had just started Mel. and Femara, but also had 2 glasses of Red WIne night before. Should have known better as I have worked in Diagnostics for 16 years (LOL), I guess we will see which it was next week as I won't have any wine nor Melatonin.

    Gaynor we have the same anniversary date, one year ago this journey started. I can honestly say this week is the first week I have felt somewhat normal after all of this nightmare. I was able to walk 4 miles today and although I don't sleep well, my pain has subsided a little. Knock on wood!

  • HensonChi
    HensonChi Member Posts: 68

    Told my doctor that I had terrible back pain since I started Femara 3 months ago and she said she had never heard of anyone having back pain from it.   Hmmmmmmm...well I do.  LOL  Anyway I am 3 months into the femara and it is subsiding a bit.  Some days I feel almost normal.

  • Monty
    Monty Member Posts: 146

    Hi Girls,

     sorry if I sound a bit ignorant on this topic but what is the big deal with LEs?  I haven't been told anything about this by my onc, probably because none of my bloodwork has ever indicated a probem.  Perhaps you ladies can fill me in on this.  I don't see my onc for a few more weeks but I don't want to carry on taking Mel if it's going to cause me bigger problems down the line.  The first night I thought it worked but nothing since, early days I guess as I only started taking it Thursday and it's only Sunday now.  Please tell me what raised LEs can result in, I'd rather know and make an inofmred decision than just carry on regardless.  For those of you who take Mel regularly how long did it take before you noticed any significant results?

     Ok, got to go as we have friends arriving for dinner any minute.  Talk to you all soon, don't know what I'd do without your help and advice some days.  BIG THANKS to all

    Gaynor

  • beargrass
    beargrass Member Posts: 5

    Dear Anne,

    I'm so sorry to find you having to join us on this site. I know we all fear what has happened to you. I am heartened by your upbeat confidence, but please do use us as sounding boards when you need. I have only been on the Femara for three weeks.   I will be watching my bone density as I am osteopenic. I'm glad to know about Zometa

    A week ago,  I thought I had back pain as many on this site do, but I think it was only another gardening mishap. Much better now.

    Hugs and positive thoughts

    Mary Jo 

  • Jane_M
    Jane_M Member Posts: 932

    Boy, I'm glad I found this thread.  I thought I was going nuts!  My onc told me the SEs with Femara were minimal and that those few people who did have SEs had muscle pain, not bone pain.  MY FEET ARE KILLING ME.  My feet swell and I can't get my rings off either.  I took my one ring off and cannot/will not put it back on.  I got my wedding band off with a lot of effort and then I forced it back on.  I'm just going to leave it there.  We'll see how things go.  I''ve only been on the Femara for about a month.  I thought I was doing something wrong lifestyle-wise, i.e. too much sodium or something.  At least I know what is causing it.  Hopefully the feet thing will improve over time.  It's the one SE that bothers me the most.

  • LindaBusEd
    LindaBusEd Member Posts: 20

    Jane_M, I am having more swelling on my left foot; some on my right; My GP gave me a dietetic(spelling); it has helped some but not entirely.

    I am having muscle/bone pain(don't know which) on my left leg. It was mainly from the knee down, but today it has risen to above my knee--mainly when I am laying down. I finally took 2 Advils; been on Femara for a month. I go see the oncologist on Wednesday. This is a bummer.  Linda

  • artsee
    artsee Member Posts: 701

    Hi all.....The reason I had the EL is from a side effect from one drug I was taking. My onco also watched for the same s/e from Aromasin. Don't know if it came from that one too, but he took me off of that. I worry about Femara because I went on the web and it indicated that Femara can cause EL too.

    Gaynor....It seems I must have a very sensitive liver and that doesn't mean you will be effected. If all is well so far you'll probably be good.

    I researched Melatonin but I could not find any hard evidence that it causes a raise in LE. If anyone can find this please include it on here for us to look at.I hope not because it helps me sleep and am thankful I have it. It's more natural so I can't believe it would have this s/e.

    Artsee

  • Monty
    Monty Member Posts: 146

    Artsee,

    Sorry to ask again but what exactly does raised LEs cause?  I don't mean to sound stupid but I have not had anything mentioned about watching out for this.

    Jane M - I'm also starting to see swelling in my feet and fingers.  On Saturday I had to struggle to take rings off my right hand and now cannot get them back on and my right hand is going the same, I don't want to take my wedding ring off but may not have a choice for much longer.  My rings used to swivel around on my fingers they were so loose but not anymore!  Last night I noticed that my lower legs had started to swell also, this morning they don't seem so bad.

    OK girls got to go as I have my herceptin thing this morning.

    Thanks

    Gaynor

  • apple
    apple Member Posts: 1,466

    soon to be a Femara gal (hopefully (have you ever heard that?))... starting in July.

    i've read this thread several times already.

  • Ann2800
    Ann2800 Member Posts: 3

     I stayed on the tamoxifen for 8 years and mistakenly felt I was  safe.  WRONG  (:  Yes you do put the cancer behind you.  I only thought about it when I read somthing or October of the year or hearing someone pass on then it struck me but only for a little while.  It gets better!!  I think she has a good plan now....Zameda for my bones.....Femora for post men and Lupron to put me into

    menapause.  I should have it all covered.  don't you think?  Are we missing anything.  Oh and ofcourse I am having radiation of the hip now.

  • Ann2800
    Ann2800 Member Posts: 3

    Thank you so much Mary Jo.  I know I'm returning back to my support sites but I have met so many wonderful people there 10 years ago its a pleasure to join back and learn from everyone.

    Has anyone known anyone that it returned to the femur?

  • fleecewood
    fleecewood Member Posts: 7

    This is a great thread.  I just started Femara about a week ago.  So, its really informative to see how others are reacting. I certainly don't want to take any medication for 5 years tho. I heard that it can cause weight gain? I don't know if its the drug or the rads (I'm on week 4) but I am actually not hungry at all now- and have lost 3 pounds. And yet my dh just told me yesterday that I'm gaining weight. Left me feeling pretty bad.

    Have any of you heard about Niacinamide?  I read about it in an alternative medicine newsletter. I am taking about 250 mg 3x per day- its' good for joint pain and arthritis- also alzeheimers and balance (but only if you break up the doseage- otherwise too hard on your liver)  Cod liver oil is also very good.  We used to have a dog who had arthritis and joint pain and after many drugs was given cod liver oil- which alleviated it where he would no longer limp.  Our chiropracter said he recommended it for people but most wouldn't take it because they didn't like the taste. But there is a product from Norway that has a slight hint of lemon and tastes great- and might help and not interfere with the other medications. Just a thought.  I'll be the guinea pig for you if I start getting the pain.

      

  • mmliv
    mmliv Member Posts: 7

    Appears that a lot of us are Femara Gals. 

    I haven't posted much because I didn't have much to say...... then I realized, that is why I do need to post! I've been on Femara for about a month and though I have twinges, I am doing fine. My feet are a little funky yet but I am convinced that is from chemo since I had some problem before I started the Femara.

    I had shoulder pain, but started lifting weights and pain is now gone. I need to get back into running - need someone to kick me out the door! I am still shy though about going out with peach fuzz hair..... and no way am I running with a wig! I guess I am just silly.....

    Mary L 

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