Tamoxifen and Neuropathy???

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Faye33
Faye33 Member Posts: 180
edited April 2015 in Hormonal Therapy - Before, During, and After

I've been on Tamoxifen for about a year and a half now, and I swear that in the last three months or so, my neuropathy has worsened.  I experienced pretty severe neuropathy while on Taxol, so much so that they lowered my dose for a couple treatments and totally canceled my last dose.  I've been done with Taxol for almost a year and a half now.  My neuropathy eventually diminished to the point where only the ends of a couple of fingers on each hand felt slightly numb, which my oncologist won't admit is residual neuropathy.

Now, my feet hurt when I wake up in the morning, similar to what I remember them feeling like while on Taxol, just not as intense or painful.  Now all of my fingers have a numb sensation on the tip of them, and now (within the past couple of days) part of my left foot feels numb.  I get arm "bone freeze" pain when I work with cold foods, much like while I was on taxol.  I've lost dexterity in my fingers, which I notice while trying to play piano... it's almost like I can't make my fingers reach where I want them to.

Has anyone else experienced a progression of neuropathy while on Tamoxifen?  I was never warned about neuropathy on Tamoxifen, but have learned that doesn't necessarily mean it isn't a SE.

 Thanks! 

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  • ButterflyMimi0311
    ButterflyMimi0311 Member Posts: 1
    edited January 2012

    I've been on Tamoxifen since November 2010 and I think it has wornsened my neuropathy also.  I started having problems with neuropathy during chemo and it has just gotten worse.  It and the bone and joint pain that I live with daily are sometimes unbearable.  I take so many meds since my mastectomy and chemo that I feel like a pharmacy.  I have had to apply for disabliity because of all of my pain, anxiety, depression, memory loss, and I feel like a crazy person.  Chemo changed my life in a bitter-sweet way,  It got rid of my cancer. Thank you God! But it took away my ablility to function in a work environment.

    Has anyone gone through this?

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2012

    There is more information about neuropathy, and strategies to manage its effects, in the Neuropathy section of the main Breastcancer.org site.

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  • Dara_Diverse
    Dara_Diverse Member Posts: 5,144
    edited May 2012

    Thanks mods, that was just what I was looking for!

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  • CoastalXPat
    CoastalXPat Member Posts: 83
    edited August 2014

    I've been taking Tamoxifen for a week now, and I could swear the neuropathy I acquired during chemo is getting worse, even though I'm 10 weeks PFC. Figured I'd revive this thread in case anyone else is experiencing this?

    I didn't see any indications for neuropathy w/Tamoxifen, but for me the Tamox is the only thing that's new.

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  • Misstic
    Misstic Member Posts: 115
    edited April 2015

    My story is a little different : I got neuropathy since the very first infusion of Taxol plus allergic reaction. They wanted to stop the treatment and to replace it with CMF. I did not agree (I knew that Taxol was a better chemo for my case than CMF) and they gave me a 70mg/m2 dose instead of 80mg plus a cortisone IV with each session. I had terrible neuropathy, mostly in my hands, and finished the treatment with lack of sensitivity in my fingers.

    Like a miracle, the neuropathy suddenly stopped 4 weeks PFC. The lack of sensitivity remained in 2 fingers.

    I am now 1 month Tamoxifen and a moderate neuropathy comes back, mostly in my hands, like with Taxol. It is much less painfull than during chemo.

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