Topic: Living with extreme neuropathy

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

Posted on: Nov 16, 2016 08:14AM

Posted on: Nov 16, 2016 08:14AM

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 5/9/2016 Lumpectomy; Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/14/2016 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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Mar 5, 2018 08:00PM - edited Mar 5, 2018 08:00PM by avmom

This Post was deleted by avmom.
Surgery 12/23/2014 Lumpectomy: Right Dx 1/7/2015, IDC, Right, 4cm, Stage IIA, Grade 3, 0/11 nodes, ER-/PR-, HER2- Dx 1/7/2015, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/11 nodes, ER-/PR-, HER2- Surgery 1/12/2015 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Surgery 10/19/2015 Prophylactic mastectomy: Left Dx 10/27/2015, LCIS/DCIS, Left, 6cm+, Stage 0, Grade 2, ER+/PR+ Surgery 5/24/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy AC + T (Taxol)
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Mar 6, 2018 08:18AM notbrokenjustbent wrote:

Everything I read is discouraging also especially after two or three years out. The best chance for nerve regeneration is in the earlier months but some report slight improvement over years time.

Perhaps your pain is worse than mine or maybe I have a higher tolerance but I do manage to get my mind off it quite a bit, but evenings are tough. These days I have to fall asleep with the TV on or else I just lie there focusing on the pain/discomfort and then the fear and anxiety starts.

It makes sense that exercise is critical to get the blood and oxygen circulating but with all the limitations it is hard to motivate or find a safe way to be more active. I too have a cane and use it when I walk more than a couple blocks or at least bring it with me just in case. It makes me sad to think that just 5 years ago I was dancing in high heel shoes.

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Mar 13, 2018 09:34AM 07avoidheaven wrote:

Hi, I have stage 4 br ca, and I too have peripheral neuropathy. It is a daily struggle. I take gabapentin every 8 hours. At 6 hours my fingers and toes start to burn again. I would not want to live without the medication. I gave up work and went on disability because I cannot remember anything. I have terrible sleep. I have worked hard to find new ways to make my life interesting again. Volunteering has helped a lot. This site means so much to me. Other people don’t understand how this type of pain wears you out. I’m glad I’m alive, 5 years in remission, it spread to my brain and lungs. Round the clock medication, however, is my new reality

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Mar 13, 2018 12:40PM notbrokenjustbent wrote:

Avoidheaven, I am not stage 4 and for that I am grateful but I certainly can relate to the chronic pain of PN. Yes, it does mess with one's head. I have back and neck issues but at least I can get completely pain free when off by feet and in an inclined position, but there is no relief from the PN. It is constant and while there are some fluctuations day to day, it is always there, chronic and debilitating. I am sorry you find yourself here when you should be saving your energy for fighting this damn BC. To date what works for me also is distraction because PN is able to rob me of my joy and even the happiest of times if I let my mind go there. Lately I am trying to push away and past the pain but usually easier said than done. Keeping busy and doing your volunteer work is a wonderful thing. Unfortunately because of the weakness in my legs I am pretty much limited in my activities but am finding different ways to occupy my crazy head thru time. Having a place to share is very helpful to me. There are suggestions here but clearly no cure, but understanding, and mutual empathy goes far.

As you can tell I am having a very PN day. Mind over matter is not working. :(

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Mar 13, 2018 02:50PM socallisa wrote:

avoid

Lyrica works so much more than neurontin for me.. And I only have to take morning and night

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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Mar 20, 2018 10:04AM - edited Mar 30, 2018 09:45PM by justamy

Im going to see my regular doctor to see if I can see a neurologist. I've read many stories about people that got tendonitis after chemo (taxotere and AC) and since my pain is in my hands I think it's worth a shot. I also have tenitus after chemo and my hair is very thin. My MO stinks and didn't tell me any of this was possible. Now my implants are killing me so I have to go see what that's about and she is going to put larger ones in. Ugh. Cancer really sucks!

"I can do all things through Christ who strengthens me." Philippians 1:8 Dx 7/18/2014, IDC, Right, 4cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Dx 7/18/2014, IDC, <1cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Chemotherapy 8/20/2014 AC Chemotherapy 10/19/2014 Taxotere (docetaxel) Surgery 2/2/2015 Mastectomy: Right Surgery 2/2/2015 Prophylactic mastectomy: Left Surgery 2/9/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/16/2015 Aromasin (exemestane) Surgery 3/25/2015 Reconstruction (left); Reconstruction (right) Surgery 8/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 9, 2018 08:22PM Rhyfelwr wrote:

Newbie on this board, and new to the wild and woolly world of post-chemo living. Just starting this part of the journey, at 6 months PFC. (I can hear the clucking --- poor dear, she doesn't know what she is in for...) I have to say that I do NOT have extreme PN, for which I am most grateful. I am in awe of you gals who live each day with it. My question is -- for how long did your symptoms develop and intensify before they leveled off? Or did they level off? I still feel as if my symptoms are getting gradually more noticeable, even at 6mo, and I am wondering how much longer they will bloom like this.

At the moment, I can live with it. It is noticeable but not debilitating. Gabs seems to provide some temporary relief. I'm on 900mg (300 x 3/day) and it doesn't quite cover the 8 hours between doses. (I am also trying to regulate some wicked hot-flash/cold-flash action because of Tamoxifen.)

Just wondering how low things will go......

Blessings to all ya'll.

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 11/14/2017 Whole breast: Breast, Lymph nodes
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Apr 9, 2018 09:13PM socallisa wrote:

mine leveled out after a few months but switching to Lyrica really helped. One one the am another in pm.

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 9, 2018 09:53PM - edited Apr 9, 2018 09:53PM by minustwo

My neurologist told me it could get better gradually over 2 years. Mind you, she emphasized better than what it currently was PFC and not back to where I was before chemo. After four years, I just saw her again & don't expect more improvement. I'm fortunate that I don't have a lot of pain. Mostly just big, numb, pieces of ice for feet so I have no balance, and sporadic problems with my finger tips. Hope yours improves.

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 10, 2018 06:38PM - edited Apr 10, 2018 06:43PM by gardengypsy

Checking in... I am just about two years post-Taxotere, and my neuropathy is just as bad as ever. Still on 2100 mg/day Gabapentin.

Lisa- I have seen you post about the Lyrica. I have been ambivalent about trying it for two reasons: 1) Gabapentin is super effective for hot flashes and 2) I just don’t have it in me to try another medicine and experience itsown side effects.

I am happy that it worked for you!

Surgery 12/3/2015 Lymph node removal; Mastectomy; Reconstruction (Left): Tissue Expander Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/27/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole breast: Breast, Lymph nodes, Chest wall Dx 2/2021, Other, Stage IV, metastasized to other, ER+/PR+, HER2- Targeted Therapy Verzenio

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