Arimidex + foor and ankle swelling

aussiejan
aussiejan Member Posts: 36

I started Arimidex in February and have developed the usual joint pains.  That's okay, I can tolerate it knowing I am doing all that is possible to prevent a recurrence.

What I have developed, and initially put down to Taxol, is oedema of the ankles and feet.  I started Arimidex two weeks after Taxol and I had so many feet issues with Taxol I thought it just another issue. 

However, I have had this now since February.  I have mentioned it to the oncologist at check up but he has made no comment other than to say the body needs to adjust to new pathways to process lymph fluid since axilla surgery.

In my long winded way, I am wondering now if the oedema is related to Arimidex and would be interested in hearing from anyone else who may be experiencing the same thing.

Thanks for your feedback.

Comments

  • aussiejan
    aussiejan Member Posts: 36
    edited October 2007

    Sorry, the heading should read foot swelling, not foor.  My computer can't type!!!

  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited October 2007

    Jan, I've been on (femara) AI for  over 3 and 1/2 years.

    <sigh>

    Yes the foot and ankle swelling is from Arimidex.Sorry, Sister.

    I had edema from Taxo(tere) too.And went right into AI too.My feet never deswelled!I never could get my shoes in again, Had to finally buy new.And, sadly, the swelling grew worse every year.Last summer I was so swollen, my onc ordered a MUGA scan to see if I had congestive heart failure, damage from adriemycin.

    Nope.Heart  function fine.

    My onc SAID in advance he felt it was from femara.He was right.

    I was salt-free eating all summer.I cant say it made a difference, but if I dared to eat prepared food, I DID swell up more.It was ugly.And when I went to sleep, from having my legs up, I had to keep getting up to pee all night.

    AND I look--definately less than stunning, because my face& whole body are holding fluids.

    This drug is very hard for me to take.

    I'm wishing you better luck and an easier time.

    joan

    PS.Your onc gave a great reason for the edema..Sadly my most swollen foot&leg is the one oppposite my surgery side.

    But edema IS about the #1 Side Effect listed on the insert of the drugs both Femara and Arimidex.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008





    Well, Aussiejan, I do have some swelling of my fingers and my feet which I feel is attributable to the Arimidex. But it sounds like yours is a tad more. Are we talking indentable, and progressing up your lower legs?



    An old medical saying about edema is look to heart, liver and kidneys. Did you have any other chemotherapy other than Taxol? Adriamycin is a big heart culprit as you probably know. Do you know how your creatinine is for your kidneys, and your liver functions are?



    Taxol (I had Docetaxol) can cause much feet swelling and nerve damage. But it's been since February, so I would think it's effect on swelling has passed.



    If it's a lot of edema you're talking about, why don't you try to get in with a cardiologist. They see patients for swelling all the time.



    Good luck to you,

    Tender

  • aussiejan
    aussiejan Member Posts: 36
    edited October 2007

    Thanks for your responses Joan and Tender. 

    Tender I do have swelling of the hands and unless I get my rings made bigger, they will be sitting in my safe box.  The swelling on the feet is indentable and by the end of the day my ankles look like they are wearing life preservers!

    Joan I eat generally well with little pre-prepared food.  I have not added salt to my food in 30 years.

    My chemo regime was dose dense Adriamycin and Cyclophosphamide followed by the Taxol, 4 rounds of each. 

    When I was away having radiotherapy in March/April, the rads onc sent me for testing for DVTs so I had ultrasound for that, heart checks and LFTs and kidney function tests.  All came back normal.   

    I have just been muddling along with the oedema and I guess, like you Joan, I am stuck with it.  I hate buying shoes at the best of times but I suspect I will have to give in. 

    Tender I think your suggestion of seeing a cardiologist is a good one but will take a little organisation as I live in a rural area and cardiologists are a bit thin on the ground!

    Thanks again for the information even if it wasn't really what I wanted to hear.

  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited October 2007

    Sorry, Dear One,

    There ARE variations...

    Maybe your edema will LEAVE forever next month!

    I hope so.

    BTW, my rings have been in the box for a year now.Before that I could still get the larger ones on.

    For heavens sake!

  • tabbycattx
    tabbycattx Member Posts: 3
    edited October 2007

    I had swelling in both my ankles. The onc order a heart test. Instead, I went off the Arimidex after 2 months b/c I had every side effect on the manufacturer's list and b/c I've always had a strong heart even after chemo. Now 2 months later off the drug--no swelling what so ever. And, surprise, heart is fine. These oncoligists just refuse to believe that this drug is causing all these symptoms in everyone. The clinical tests on this drug must have been flawed. Everyone I talk to has the same awful, pretty much unbearable symptoms. You basically give up your health in other areas to take this drug.  Has anyone ever taken half a dose and seen what effect that has on the side effects? I was going to try that as a desperate measure until I saw my blood tests and was left with no educated choice but to quit totally. Good Luck to everyone on this drug. I appreciate everyone's posts.

  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited October 2007

    Jan, YES it's from Arimidex!!I'm on Femara, which  has edema as one of the first side effects on the information sheet.

    Me, I've had edema since I began AI.It keeps getting worse, is the thing.My shoes havent fit me since I began AI.Over 4 years ago.

    I had to get new, bigger shoes.(But I couldnt replace some of my favorites.

    In summer's heat, my swollen ankles would puff out over my running shoes by the time I finished my walk.

    Last summer my edema was so bad, myLEGS swelled too.My onc gave me Lasix-strong stuff.First time I took it I had to stay home all day.Going to the bathroom.

    Next time, not so much.Third time almost no result, and then it didnt work at all, for me.He had me taking it every few days, hoping I'd nt become tolerant to it.

    The only cure was going to bed, getting my feet up.In a REALLY coldly A/C-ed room.So then every hour I had to get up & go to bathroom, as the edema went away.For the night.Next day 2 hours after I got up, it was right back again.Some triple digit days I would actually put on elastic stockings.Feels horrible in the heat, but skin hurts when it's streched that tightly with fluid.My onc finally gave me a heart function scan (MUGA).He was sure it was from Femara, but had to be positive my heart wasnt in failure!(It was fine!So--medical proof the edema is from femara.) I have the edema summer and winter.But it's less in cool weather.(Maybe I move to Alaska?)

    So yes, I believe your edema is from Arimidex.I'm very familiar with it.

    Sorry.Maybe yours will go away, instead of being like mine.I hope so.

    Joan

  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited October 2007

    Oh! Seee??"Cognitive difficulties".Another gift from Femara.

    I had NO INKLING I had written on this thread already@!

    Senile!Senile before my time!

    I HAAATE this!

    Sorry for the double post, Jan.Next time I'll have to scan a thread before I write.

    Tabbycat, I cut my femara in half & take half dose every other day.Nothing.The drug is still in its glory, strong, and breaking me.My lipids are up, my blood sugar is up, everything bad is continuing to rise.My GOOD Cholesterol is waaay down.

    I take SO many suppliments..fish oil, red yeast rice.

    I WISH, oh how I WISH I had the courage to quit the drug!My internist wats me to.Even my onc doesnt like this.He DOES care about QOL.I'm so lame by now I have no pride at all.Cane?I'd use a walker gladly, if I had one!It will take me AGES now, to get up from this chair and start walking.I have to hold on to furniture and walk like Frankenstein.

    I know all my medical problems would be gone, like yours are.

    Congratulations for being smart, and brave.For a threat of bc, we give up our complete health?Something wrong w/that.

    hugs, Joan

  • CherylRubie
    CherylRubie Member Posts: 98
    edited October 2007

    Hi,  After one year, I am off of Femara for a week and my side effects are disappearing.  I have had serious swelling in a foot joint to the point I was told I needed surgery.  My pain is already less, and I'm hoping the swelling will go down also.  I jogged today for the first time in six months.  Just today I realized how much pain I have been in because it is going away. My wrists don't hurt, I can open cans, etc.  My onc never told me it wasn't from Femara.  In fact, she looked at my foot and listened to my pain symptoms and said, "I'm afraid it is from Femara."

    At the risk of getting slammed, I think it's important not to blame everything bad in our bodies on aromatase inhibitors we take.  In a study of women who had already taken tamoxifen, letrozole compared to placebo did not lead to that many serious side effects (of course, if you have one, it's serious!).  As a person who does medical research (not on breast cancer I want to emphasize), you have to find a base rate in the general population before you can really talk about side effects.  That is, you have to know, what percentage of women who had breast cancer would have insomnia, edema, joint pain, all that stuff, if they did NOT take AIs, and then compare it to women who take AIs. When you look up side effects of drugs, it is often unclear what is the comparison group, and there is a tendency to overestimate the SEs of the drug for this reason. In the case of the study in question, that would "sort of" be the response of women on placebo (not exactly, because they had already taken Tamoxifen, which has bone strenthening effects as well as its own side effect profile).  It would not be ethical to compare letrozole WITHOUT tamoxifen beforehand to placebo, because this would be witholding effective treatment, so researchers can't really get a real baseline using a placebo.  The trial was discontinued after 2.5 years because Femara was already showing a significant benefit in terms of recurrence.  Some thought it should not have been discontinued because longer term side effects AFTER TAMOX were even less certain than if the trial had been completed.  The research now (at least in my understanding, again, it's not my field) is showing that the SE profiles of women on Femara (which has the least joint pain of the AIs) are worse than previously thought, even in a recently done randomized prospective trial.  UP to 15% of women stop AIs because of joint pain, and the joint pain may be very significant in up to 50% of women.  Joint swelling is not uncommon.  For this latest study, google, "Prospective characterization of musculoskeletal symptoms in early stage breast cancer patients treated with aromatase inhibitors."

    I know I told myself that I could take whatever pain I had.  Indeed, I continued to exercise despite all my pain and if it was just pain, I think I would stay on the Femara.  But the swelling in the foot joint which seemed to indicate a need for surgery was too much for me.  I am fairly low risk, and I am going on Tamox if my CYP2D6 test comes back ok.  Otherwse, G-- help me, I dont know what I'll do.  My onc is pretty sure if I go on Aromasin or Arimidex the joint pain will be even worse than on Femara.

    Thanks for listening

    Cheryl

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    aussiejan,



    Another few weeks have passed, has your swelling improved any? How are you feeling? I hope some better.



    Cheryl and Joan and tabby,



    I read that study Cheryl refers to the other week: it's amazing, 15% of women stop AI's due to joint pain, and up to 50% have it! I can't remember what or if a quote was given separately for swelling, but I seem to remember it's about 10% of women have swelling on Arimidex.



    It's a good point you make, Cheryl, about where a woman starts with these drugs. For me, I probably had some cardiac damage from the Adriamycin, so adding an AI and a proclivity to swell from drugs (blew up like a balloon on Neurontin), one might naturally attribute it to my Arimidex. But it's probably a compilation of all the factors. It stinks though, as like Joan says, it contributes in daily ways to discomfort.



    Anyways, I was pretty much rocked off my chair when I read this report. I mean, 50% of women being symptomatic? But, the researchers are still following the Letrozole ladies in the study, right?



    Hope everyone will do better with the cooler weather if in the North, and use air conditioning if in the South.



    Tender

  • nevaeh
    nevaeh Member Posts: 85
    edited October 2007

    I will be starting Arimidex soon and so am trying to find out all I can about it.  I already have joint and muscle pain (osteoarthristis) so am not looking forward to more. 

    Has anyone found a way to relieve the pain?

    Does the CYP2D6 test apply to Arimidex (btw is the abbreviation for it here AI)

    TIA

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    No, the CYP2D6 gene test does not apply to Arimidex.



    Arimidex is metabolized through a different CYP and so far, research has not suggested a similar problem with concurrent commonly used drugs which may inhibit it.

    Hi Nevaeh,





    CYP2D6 happens to be a very common (typically) liver pathway used for the metabolism of many widely used drugs, one of which which is Tamoxifen. It also happens to be polygenic, meaning many people have differing structure and functions of the genes (alleles) responsible for this pathway to metabolize drugs.



    More will undoubtedly come out on Arimidex, but so far nothing strong in the research literature is suggesting it's CYP path is similarly afflicted by commonly used drugs.



    As to joint pain, many report good relief with regular NSAID use such as ibuprofen or any other's in this class of drugs. As always though, you should discuss use of any drug ahead of time with your doctor, and get instructions on how to minimize their known gastrointestinal effects (upset tummy, increased tendency for GI bleeding). Some report no help with NSAID.



    There is a thread here on bc.org forum on Magnesium use for joint pain. I believe it's under Alternative Medicines, maybe entitled joint pain. You may wish to use the search bar and put in magnisium.



    I wish you well as I see you've had a recent diagnosis. I am sorry this has come your way and hope you will join us more with posting should you wish, and come back for comfort any time you need to.



    All the best,

    Tender

  • aussiejan
    aussiejan Member Posts: 36
    edited October 2007

    Hello Tender, thank you for your concern. 

    Joan, double posts are double the information!!

    I wish I could say that the oedema has lessened, but no, it is just as bad as before and I have taken Joan's advice and purchased a new pair of (larger sized) shoes.  I don't want to go all out with the shoe wardrobe but I can see this is gradually going to have to happen. 

    My major concern at the moment is that we are experiencing quite a warm spring with a predicted hot summer just around the corner.  If the swelling has been bad during winter I have some concerns about summer.

    Joan, I also was prescribed Lasix while I was in Sydney having radiotherapy but when I came home after that and saw my regular oncologist he was not happy for me to take it.  Other than regular trips to the toilet up until lunch time, the Lasix had no impact on reducing the swelling at all.

    Perhaps I can start a new fashion trend with ankles spilling out over shoes... it is such an attractive look...

  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited October 2007

    Oh Honey, I'm sorry! I hope you dont.I'm only sanguine because we're going to winter, not summer.But I SO dread the summerside of the calendar any more.

    I'm beyond caring how things look, but ankles spilling over your Nikes FEEL like hell.

    And mosquitoes love to feed on the fluid there.EWWWWWFrown(Do they have Herbal Armor Down Under?)

    Better luck to you.I'm in your corner, keep me posted!

    j

  • Elizabeth06
    Elizabeth06 Member Posts: 31
    edited October 2007

    Hi Aussie,

    I'm so sorry you're experiencing discomfort from Arimidex.  Sometimes I feel guilty because I've been taking the same med for 4 yrs and am feeling fine....my only concern is to stay as long as possible on Arimidex to hopefully prevent a recurrence.

    My heart goes out to anyone suffering side effects on an AI.  Some do, some don't....guess I'm fortunate to fall into the "some don't" category.

    Best wishes 

  • jdwench
    jdwench Member Posts: 27
    edited September 2012
    Ha! I knew it was the Arimidex! wow this is a really old thread I found, but still so appropriateLaughing
  • cowgal
    cowgal Member Posts: 833
    edited September 2012

    A little bit of caution on some of the side effects such as the swelling of feet and ankles while on Arimidex.  I thought that the swelling I was experiencing in my feet and ankles were normal problems from the Arimidex and when I called my oncologist's office, his nurse told me to just take some over the counter water pills and if it persisted that they would probably have to give me a perscription strength.  I tried for months to deal with it myself and felt very frustrated as my whole body was swollen with my ankles looking like I had sprained them.  Elevating them did not help at all.  When I finally called my oncologist's office again, the nurse said that what I had been experiencing wasn't normal and I needed to contact my primary care physician.  Long story short, my primary care physician gave me a blood test to check some vitals organs (thankfully they all checked out fine) and concluded that the Arimidex had raised my blood pressure and caused the swelling.  He also put me on arthritis medication to deal with joint swelling and extreme pain that I have been experiencing while on Arimidex.  Just thought I would add this in case someone else thought what they were dealing with was normal but may need some other help.  I don't feel quite so much like the Michelin Man anymore...I still feel like I have some swelling but not like it was and my blood pressure is back under control.

  • Carla56
    Carla56 Member Posts: 7
    edited November 2014

    I know this is a very nice old post, but hoping someone can half me. Diagnosed with stage 2 lobular Breast Cancer 6/12NOT  Had the Surgery, 35 rad treatments, on Tamoxofin x 18 months . I gained 15 pounds from this med:( Onco put me on Letrozole for 3 months had extreme bone and joint pain and severe breast pain! They had me off and on this med twice. Each time I took a "Vacation" from this med all the side effects would disappear in a week or so. Then she put me on Anastrozole..... I work on my feet all day long.... It's truly awful! My feet hurt so bad and to make matters worse..... The ankle swelling. I seem to have more swelling on my left ankle ( opposite side of the Breast Cancer side) I can literally feel the swelling touching the lower part of my ankle:(  I'm about to switch jobs, still a job that requires me to stand on my feet all day, but better insurance and more money! This company does NOT know about my past medical issues and have no idea what to do about this. It's really uncomfortable shoes do not feel good! Calling my doctor tomorrow. I need answers. If anyone has suggestions, please let me know. Thank you,

    Carla

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2014

    When I was on anaatrozole sometimes my tongue would feel fat. I think it was a reaction to the drug.

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