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Topic: Living with extreme neuropathy

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

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

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: Right, Sentinel, Underarm/Axillary Chemotherapy 6/15/2016 Adriamycin (doxorubicin), Taxol (paclitaxel) Radiation Therapy 10/26/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 11, 2018 12:26AM MinusTwo wrote:

Garden Gypsy - that's me. I just don't want to try another darn med.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 11, 2018 03:31PM Rhyfelwr wrote:

I have heard the 2-year window too.

My question is: for how long it continues to get worse. I am noticing it more and more. I am wondering if it will keep getting worse and worse, or if things will level off. About how long did it take to develop the symptoms that you currently live with?

Rhyfelwr Dx 5/5/2017, IDC, Left, Stage IIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2017 AC + T (Taxol) Radiation Therapy 11/15/2017 Whole-breast: Breast, Lymph nodes
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Apr 11, 2018 07:41PM SoCalLisa wrote:

I am sorry I can't remember

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years
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Apr 12, 2018 06:20PM EncoreKennel wrote:

I have been living with severe neuropathy due to 42 yrs of diabetes and 25 years of MS I have to use a Service Dog in part due to balance issues from the neuropathy.... I do not feel where my feet are. My hands have a constant low "hum" sensation and I take 1200 mg gabopentin/Neurontin daily. I am prescribed A.C x 4 and then 12 Taxol to follow. I am really thinking I should opt out of the Taxol due to neuropathy and prolonged steroids with the diabetes. Not sure it's a good fit.... anyone else have pre neuropathy issues and taking Taxol?

Dina Dx 2/9/2018, DCIS/IDC, Left, 1cm, Stage IIB, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/2/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Chemotherapy 4/25/2018 AC + T (Taxol) Radiation Therapy 7/19/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 12, 2018 07:14PM balance wrote:

I have body-wide neuropathy, cause unclear, that was diagnosed 2 years prior to my breast cancer. I was seen at 2 well respected cancer centers. Because of my neuropathy neither thought that I should receive Taxol. The first recommended AC x 4. I went with my 2nd opinion who recommended AC with 5FU x 6. So far, so good. Feel free to PM if you like.

Dx 5/3/2012, IDC, 1cm, Stage IIA, Grade 3, 1/15 nodes, ER+/PR-, HER2- Surgery 5/8/2012 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 6/13/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy 10/7/2012 Arimidex (anastrozole) Radiation Therapy 10/9/2012 Breast, Lymph nodes
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Apr 13, 2018 12:29PM NotBrokenJustBent wrote:

Encore, discuss with your MO but I would be very hesitant to do Taxol. Your nerves are already very weakened. personally I would not take the chance but these are difficult choices we must all make for ourselves. If you do go with the Taxol make sure you ice. My doctor mocked me and told me to stay off the internet. He said worse case scenario it would be a very mild and a temporary condition. Not so with me. best of luck.

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Apr 13, 2018 04:59PM SoCalLisa wrote:

paraneoplastic syndrome can cause neuropathy before breast cancer is detected. The T cells mistakenly attack the nerves instead of the tumor

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years
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Apr 13, 2018 10:46PM balance wrote:

Paraneoplastic syndrome has been considered as a possible cause of my neuropathy. Although blood work doesn’t support the diagnosis, it’s still possible

Dx 5/3/2012, IDC, 1cm, Stage IIA, Grade 3, 1/15 nodes, ER+/PR-, HER2- Surgery 5/8/2012 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 6/13/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy 10/7/2012 Arimidex (anastrozole) Radiation Therapy 10/9/2012 Breast, Lymph nodes
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Jul 5, 2018 01:43AM carmstr835 wrote:

Hi, I also am suffering from neuropathy, but mine is strange. I got this tingling and loss of feeling and burning of only my right hand. My left forearm I suffer from severe itching from time to time. But the right hand neuropathy is continually getting worse. I finished my taxotere and carbaplatin in August and almost no issues back then, and when there was, it went away before the next cycle. Now it never goes away and is getting worse. I have completed my Herceptin and Perjeta about 5 weeks ago. The bad part is I am right handed and it has definitely affected my quality of life. I prefer not to use my right hand, any sustained pressure is very uncomfortable. They are going to try a "tens unit" and acupuncture while I am in the hospital next week for my surgery. I was wondering if anyone else has such isolated symptoms such as only one hand or arm. I was also wondering if neuropathy is a side effect of radiation treatment. It seemed to get worse after the radiation treatments.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/22/2017 Arimidex (anastrozole) Surgery 3/27/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Targeted Therapy 6/27/2017 Herceptin (trastuzumab) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/11/2017 Breast, Lymph nodes, Chest wall Surgery 7/10/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/16/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 9/18/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Targeted Therapy Nerlynx
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Sep 29, 2020 03:59PM MinusTwo wrote:

This is an old thread, but I'm posting to reach anyone who still has it in their favorites to let everyone know about the excellent interview/podcast the Mods just posted. Take a look.

https://www.breastcancer.org/community/podcasts/ne...


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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