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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Tamoxifen and Neuropathy???

Topic: Tamoxifen and Neuropathy???

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jan 6, 2012 11:21AM, edited Apr 17, 2012 08:20AM by Faye33

Faye33 wrote:

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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Jan 9, 2012 05:34PM ButterflyMimi0311 wrote:

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?

Mimi Dx 2/11/2010, IDC, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR+, HER2-
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Jan 10, 2012 12:42AM Moderators wrote:

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

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 7, 2012 09:04PM Dara_Diverse wrote:

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

"Sugar Dazzle Thighs" *¨*•¸¸¸.•*¨* You can spend your life being angry about it. Or you can forget it and move on *¨*•¸¸¸.•*. CHEERS! Dx 6/1/2010, IDC, 2cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2-
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Aug 13, 2014 11:33PM CoastalXPat wrote:

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.

Age 46 at Dx. Grateful for loving boyfriend, buddies and family. Also grateful for good Dr's and cold caps! Dx 1/13/2014, IDC, Stage IB, Grade 2, 0/2 nodes, ER+/PR-, HER2+ Targeted Therapy 3/19/2014 Herceptin (trastuzumab) Targeted Therapy 3/19/2014 Perjeta (pertuzumab) Chemotherapy 3/19/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/30/2014 Breast Hormonal Therapy 8/5/2014 Surgery Lumpectomy: Right
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Apr 9, 2015 07:08AM Misstic wrote:

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.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)