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Topic: Living with extreme neuropathy

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

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Posted on: Nov 16, 2016 10:14AM

Posted on: Nov 16, 2016 10:14AM

jbakerwebb wrote:

thought I was gonna get thru chemo unscathed but neuropathy hit like a brick. I constantly drop things and my feet hurt constantly some times more than others. Gabapenten(sp) helps some. So frustrated. I mentioned to my onc it was starting but no suggestions to change anything during chemo. Now I find out it starts out mild and worsens over time. Quality of life has to be an issue but other than that I did great. I know she was doing her best. Just frustrated because after I'm done with rad (22 left) I go on tamoxifen and that freaks me out even more. Hot flashes are bad enough but add that geez....just having a one of very few blue days

Jackie Lu Dx 4/14/2016, IDC, Right, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- Surgery 5/10/2016 Lumpectomy; Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/15/2016 Adriamycin (doxorubicin), Taxol (paclitaxel) Chemotherapy 6/25/2016 TAC Radiation Therapy 10/26/2016 Whole breast: Breast, Lymph nodes, Chest wall
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Nov 16, 2016 10:24AM dtad wrote:

Hi there. So sorry you are suffering with neuropathy. I have an autoimmune sensory peripheral neuropathy. I believe it can be the worst pain experienced, except of course child birth! Have you tried Cymbalta? Its an anti depressant that works for neuropathy. it helped me more than the classic neuropathy meds. Good luck...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 16, 2016 10:56AM moderators wrote:

Hi Jbakerwebb,

We, too, are sorry to hear you're dealing with this awful side effect of treatment. We're sure you'll get some more helpful answers soon from others managing neuropathy.

In the meantime, you may want to check out the main Breastcancer.org site's page on Neuropathy for some tips to help manage this side effect.

We hope this helps, and that you feel better soon!

--The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Nov 16, 2016 11:49AM serenitystat wrote:

I hope it goes away for you like it did for me. My peripheral neuropathy was in my feet and started during Taxol. B12 (1000 mcg) and Reactine helped me. My peripheral neuropathy stopped about 5 weeks PFC.

Others have taken B6 (100 mg max) and L-Glutamine. You can check the Weekly Taxol thread for recommended dosages on L-Glutamine.

I still take B12 and will continue as long as I feel this fatigue. I finished rads 3 weeks ago.

Hope you feel better soon.

🌻 🇺🇦 BCO leaked our private data. 🤦🏻‍♀️🤷🏻‍♀️ . . . . . "Do not overlook the little joys!" (Hesse, 1905) 🐶Dx.11/2015.IDC.L.IIIC.10/11nodes.++- ☕️12/2015.L.Mast 🛀2/2016.4AC.12Taxol.fasted 🖼9/2016.Rads.Nodes.ChestWall.15+4boosts 🥐10/2016.Tamox(2.5y) 🌲4/2019.Exemestane 🎭12/2019.Ibrance/Xgeva 🕊
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Nov 23, 2016 09:09PM Millie11 wrote:

My daughter is experiencing severe burning and itching in her feet and hands after her 2ndTaxol treatment. Her 3rd one got delayed a wk due to her wbc. She has 2 more to go.

I'm wondering if it's going to spread to other body parts after her 3rd treatment. Does it always go away when treatment is finished? Can it ever be permanent? Her nurse doesn't say much.

Worried Mother


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Nov 24, 2016 07:27AM jbakerwebb wrote:

unfortunately I wasn't even aware this was a potential side effect. Mine started ever so slightly after 2nd Taxol and my onc wasn't too concerned. Then boom 3 days after last Taxol (#4) it came on with a vengeance! I must say mine has subsided substantially but still a problem for me. I'm just thankful for even the smallest amount of relief everyone is different. It can be permanent. I've found all this out after the fact. I pray your daughter can find some relief. I'm taking tons of b vitamins (b12 and b complex)and alpha lipoic acid which has helped tremendously and gabapentin drug.

Jackie Lu Dx 4/14/2016, IDC, Right, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- Surgery 5/10/2016 Lumpectomy; Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/15/2016 Adriamycin (doxorubicin), Taxol (paclitaxel) Chemotherapy 6/25/2016 TAC Radiation Therapy 10/26/2016 Whole breast: Breast, Lymph nodes, Chest wall
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Nov 29, 2016 02:47PM bradie234 wrote:

I am currently on tamixfin been it for a year and my biggest problem is superficial blood clots


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Dec 1, 2016 01:49AM Cdwind wrote:

I am experiencing severe pain in my hands and feet. I do have neuropathy in my feet. The pain is different. I finished chemo 2/16 and radiation 5/16. The pain can be quite debilitating. I have seen my oncologist, she now has referred me to neurologist. Also a pain doctor. I am so tired of this pain. Anyone else have these problems so long after treatment

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Dec 1, 2016 09:41AM jbakerwebb wrote:

my neuropathy is worse in the mornings. I have found an athletic shoe made by under armour that helps. It has a round toe so my toes aren't "bound" up.


I'm so sorry you're having such a difficult time. I find myself on emohighs and lows and I'm thankful for the lows because.....they make me appreciate the highs SO much. Also the b12, b complex and alpha lipoic acid has been a life saver. Those are avail anywhere....Walgreens, wal Mart etc.....they promote nerve health. Give them a try. I know I take a handful of supplements morning and night and they help tremendously!!


Blessings to you and yours at CHRISTMAS

Jackie Lu Dx 4/14/2016, IDC, Right, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- Surgery 5/10/2016 Lumpectomy; Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/15/2016 Adriamycin (doxorubicin), Taxol (paclitaxel) Chemotherapy 6/25/2016 TAC Radiation Therapy 10/26/2016 Whole breast: Breast, Lymph nodes, Chest wall
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Dec 1, 2016 11:56AM jcpriest0469n wrote:

so sorry Cdwind,it's been 3 yr now and my feet have calm down. I take a muscle relaxer and coconut juice add to my smoothie in the morning. My hand are acting up lately out of the,blue. Maybe it's the cold weather, but it's mostly frustrating. Good luck on your search.

Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Dec 2, 2016 12:51AM snowsogal wrote:

Hi Millie: My neuropathy started after my 4th chemo treatment with Taxotere. My oncologist scaled down the dose for the remaining 4 treatments. Unfortunately, mine is still with me after my treatments in 2015. I have polyneuroathy that is sensory and peripheral for over two years now.

Yes, sometimes it can be permanent. I would talk to her oncologist, and see if they could scale down the dose. They gave me neurontin and Cymbalta. It did not help. They gave me Lyrica and other opiate drugs that did not help either. Therefore, I take a Neuropathy Supplement to help start regenerate my nerves.

In my situation, I had Shingles at 53 years of age, and had nerve pain for two years, but it did go away, but an infection like this can trigger neuropathy, as well as the cancer drugs.

I do hope your daughter can recover from her neuropathy. It can be very debilitating.





Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Hormonal Therapy 7/22/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/31/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/13/2015 Whole breast: Breast, Lymph nodes, Chest wall

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