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Topic: Vent about Permanent Neuropathy

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Jan 16, 2011 09:47AM

ktym wrote:

I'm interested in hearing from those with long term this isn't going to get better neuropathy.  Too often when I bring this up I'm told...It will get better...it is temporary...mine got better....take glutamine it works.....have you tried gabapentin....lyrica....    I know there are many here going through worse, including a dear family member right now, however, some days I just can't take it.  I'm tired of discarding the ear rings I want to wear every morning because my fingers don't work well enough to put them in.  I'm tired of dropping things all the time in the kitchen.  I'm tired of how different my career is now due to persistent lymphedema and neuropathy.  I'm tired of hurting every morning and hurting worse every night.   I'm tired of not being able to go on long walks with DH in nice weather because my feet hurt too much.  Please don't tell me it will get better.  I've accepted it won't, please don't deny my reality.  I just wanted a place to vent with others who know what this is like. 

Oh yes, add in, I'm tired of sleeping with my feet wrapped up in a heating pad because the cold triggers the pain. (Which of course makes the hot flashes worse)

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Sep 29, 2020 03:53PM SoCalLisa wrote:

thanks

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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Sep 29, 2020 04:25PM Kamboka wrote:

I'll watch since my foot neuropathy has worsened in the last month. I restarted Gabapentin but it didn't work the other two times I used it and it makes me a little unstable. Don't need any falls.

Dx 1/4/2019, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/15/2019 AC + T (Taxol) Dx 7/9/2019, DCIS, Left, Stage 0, Grade 3 Surgery 7/9/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Surgery 7/23/2019 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 10/2/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/22/2019 Femara (letrozole)
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Sep 29, 2020 07:31PM MinusTwo wrote:

I did reach out to the Mods and they are going to pass my suggestion about an updated report/interview on to the editorial boards. I asked them to be sure to address your question Lisa, since I know nothing about " paraneoplastic syndromes". Maybe there are also people in active treatment who are learning new things? Hope others post.

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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Sep 30, 2020 10:06AM MCBaker wrote:

Kamboka-- if you are very uncomfortable, gabapentin may be your most workable option. I have many reasons to be unstable on my feet, and I use hiking poles nearly all the time I am out and about.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Sep 30, 2020 10:16AM MinusTwo wrote:

Kamboka - are you taking the gabapentein for the pain? As mentioned, there's always Cymbalta & Lyrica to try.

As the podcast points out, there are only meds available to help pain - NOT numbness & lack of balance. Although that information was 2018, I did 'talk' with my neurologist by "My Chart" last month and she reiterated that there was really nothing new. I thought the emphasis on PT was probably useful. I did go for a balance assessment a couple of years ago and they taught me a few good tips. I probably should go for a refresher.

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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Sep 30, 2020 08:22PM Kamboka wrote:

McBaker: My mom said to use a walker. My mind says I'm 20 years old but my body says I'm many decades beyond that. Cancer added a few more years to the wear and tear.

MinusTwo: I tried Cymbalta and Lyrica years ago for shingles and it didn't work. I would be willing to try them again but none of my docs recccomend them. They always reach for Gabapentin first. I'd also have to probably stop my Celexa before Cymbalta. The Celexa is keeping my hot flashes in check.

Dx 1/4/2019, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/15/2019 AC + T (Taxol) Dx 7/9/2019, DCIS, Left, Stage 0, Grade 3 Surgery 7/9/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Surgery 7/23/2019 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 10/2/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/22/2019 Femara (letrozole)
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Sep 30, 2020 08:44PM - edited Sep 30, 2020 09:25PM by MCBaker

A walker is impractical for walking six blocks. People who use walkers probably walk two blocks in a whole day. Besides, they are for old decrepit people. IMHO-- or not so humble. Poles just look cooler. I talked to my PT yesterday, and she told me that I really need the two poles; a cane is not sufficient. I am going to quit using the straps on the poles as a substitute for gripping them.

Insurance won't pay for the others unless the doctor can prove that gabby is not working for that patient.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Sep 30, 2020 10:27PM SoCalLisa wrote:

also the large hiking rods you get at National Parks.

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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Oct 1, 2020 07:38PM Kamboka wrote:

Something I'll have to look into if I can't correct this instability. I start PT next week.

Dx 1/4/2019, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/15/2019 AC + T (Taxol) Dx 7/9/2019, DCIS, Left, Stage 0, Grade 3 Surgery 7/9/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Surgery 7/23/2019 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 10/2/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/22/2019 Femara (letrozole)
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Oct 1, 2020 09:17PM - edited Oct 1, 2020 09:39PM by MCBaker

Here is what I have; https://www.amazon.com/Coleman-2000016536-Trekking-Poles/dp/B002YXNEDQ/ref=sr_1_3?dchild=1&hvadid=78134182990954&hvbmt=be&hvdev=c&hvqmt=e&keywords=coleman+hiking+stick&qid=1601604967&sr=8-3&tag=mh0b-20


Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Oct 31, 2020 04:14PM MinusTwo wrote:

Bumping for NsBrown

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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