Arimidex causes lymphedema?

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mcgis
mcgis Member Posts: 291
edited June 2014 in Lymphedema

I read on the drug fact page that came with my Arimidex that lymphedema can be a side effect. I googled it and there are some people who did get LE after having been put on Arimidex. Anyone here? If I already have LE could it get worse or will it typically stay the same?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    How could they possibly know that the drug caused LE when the life-long risk was already there from the surgery?  Drug manufacturers have to record all "side effects", but in this case it could have been incidental causation that must be noted because it happened during the drug trial.  Was it caused by the drug, or did it happen while you were taking the drug, it is a bit of the chicken and the egg - which came first?  My LE happened prior to hormonal therapy and did not worsen, I have been on both Femara and Arimidex.

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    I REALLY don't know, but I have to agree with Specialk.  My first thought is that  node removal causes LE and those women in the arimidex had node removal.

    Know this for sure- had 2 nodes out SNB  LX  NO Rads and NO arimidex.  Got the LE though !  Le would not be my primary worry on arimidex.

    JMO

  • Kicks
    Kicks Member Posts: 4,131
    edited May 2014

    I haven't been on Arimidex - been on Femara/letrozol 4+ yrs..  Mine started roughly 6 weeks into 12 weekly Taxol which started 3 weeks after  a mod. rad. mast.    No rads yet either

    After any surgery or traumatic injury, LE  CAN developed, so to me, trying to 'blame' a drug used to try to keep the "Monster' from resurrectindoesn't make sense.'.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2014

    I agree with all the other posters. Only surgery or trauma (including vein blockage) could cause LE. This way if you do develop LE while taking Arimidex you can't waste their time by suing them. It's like saying drinking Coke causes LE so they can't be blamed if you get it. As Arimidex is used for breast cancer patients, odds are they've had node removal!

  • Kathy044
    Kathy044 Member Posts: 433
    edited May 2014

    Fatigue, sleep problems, pain, depression, stress, weight gain are all side effects of Arimidex and each can have an effect on lymph transport or load so I can certainly see the LE connection found in studies.

    Not directly related but Arimidex also has an effect on bone density. I fell and fractured my right wrist (cancer side)  a little over a year ago which resulted in one major LE flare when the cast was removed. All resolved within a few months though but then last summer I broke my left wrist which could also have had LE complications (but didn't) as now with my good arm in a cast I had to do everything using my right arm and without being able to wear a sleeve, no way to put one on. I even went on a planned trip to Russia flying with one arm in a cast the other no sleeve just a gauntlet and no problems with LE.  OTOH once home, cast off, escounced on the couch with a cold and jet lag and post trip blues I noticed some tell tale truncal  and upper arm aching. It is those little things that can make a difference with LE at least for me. 

    And as for drug S/Es and LE be aware that Prolia has cellulitis on it's list. It's either this or that.

    Kathy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014

    I was told that mx & axilary node dissection caused a 30% chance of LE, and rads could cause another 5% chance. I finished rads last August & started arimidex one week later. In the past few weeks I've noticed more swelling in the upper arm, armpit, & mx area. I have a bit of tightness at times.

    I believe it's caused by surgery, & rads, not by arimidex.

    I'm seeing PT on Monday.

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited May 2014

    It is true that any damage to our lymphatic system done by trauma, surgery or radiation, puts us at a lifetime risk of LE.  But it is also true that certain drugs/chemicals/conditions which increase inflammation in our bodies may be the catalyst that actually pushes our lymph carrying capacity over it's limit, resulting in edema for the first time.  While I knew I was at high risk for LE after BMX and total axillary dissection, my onset of symptomatic LE happened immediately after experiencing Hand/Foot syndrome from my Xeloda and Taxotere chemo.  My LE then worsened after 7 weeks 3 field radiation which also greatly increases inflammation in the body.

    I have not been on Arimidex, but I was on Aromasin for 8 years and know that the increased joint pain, trigger fingers, carpal tunnel symptoms that are all SEs of the AI inhibitors, are another source of inflammation in the body.  In a healthy, non-damaged lymphatic system, inflammation is usually handled without LE developing, but persistent or chronic inflammation can be destructive to the body in many ways, whether at specific LE risk or not.

    So when we discuss "cause" of LE, there are actually many variables that together can directly impact our risk.  Surgery and radiation alone are a known factor, but a sustained or chronic inflammatory process would increase that risk.

  • Marple
    Marple Member Posts: 19,143
    edited May 2014


    Actually, I raised this SE issue a few (can't remember exactly when) years ago.  It is indeed listed as a SE. 

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    Not directly related but Arimidex also has an effect on bone density.

    I was told that IT WAS DIRECTLY related and opted out as I have already broken  3 bones.  Still don;t believe it  is as significant for  LE, but we are all different.

    My husnband had LOTS of nodes taken out,  a TON of rads and  was on xeloda for  avery long time.  He's fine.

    I had 2 clean nodes , LX and voila!  I have a very bad circ. system and I believe that set me up...PLUS the fact I was never given ANY idea of risk factors ( so still lifted my grandbaby and did a little zumba etc .....)

    As for :"  surgery and radiation alone are a known factor,"

    Surgery alone to be more accurate.  No rads  here.


    JMO

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    I was told that mx & axilary node dissection caused a 30% chance of LE, and rads could cause another 5% chance. I

    Nice to be warned !  Good luck with your therapist - hope you get a great one.

    Take Care!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014

    Thanks Purple. The PT is at a comprehensive breast center & is specifically trained in prevention & treatment of LE, so I'm hopeful.

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