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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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Aug 30, 2017 10:51PM gardengypsy wrote:

Hi Jackie, Bosum et al,

I posted about my neurology visit today over at the "Vent" thread. The neurologist didn't appear to recognize some of the symptoms we've been discussing here..



Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 5, 2017 10:47AM LauraSD wrote:

Hi Ladies:

I developed a mild numbness in my feet about half way through my chemotherapy that progressed to foot pain and numbness after I finished my last round of chemo. I completed chemo in November, 2015 and I still have PN. It is not getting better. I have seen an integrative medicine specialist who tried L-glutamine, alpha lipoic acid, acetyl L carnitine, omega 3 fatty acids along with my normal multi-vitamins and Vitamin D. I did not see any improvement. I tried Lyrica with no success. Gabapentin seemed to help, but it caused severe headaches and brain fog. I saw a neurologist in Feb, 2017 who started me on amitriptyline at 25 mg per day. It worked. However, it caused severe sedation in me. I was instructed to take it at 7 pm so I would be able to get up for work the next day and I would basically fall asleep by 9 pm. It really decreased the quality time I was able to spend with my family in the evenings, so even though my pain was better, I decided to stop it. I weaned off it over several months and even the lower doses made me sedate. I have been completely off it for 2 weeks and the pain has definitely come back, but at least I can stay awake until later than 9.

I just wanted to let you know about this drug because it is not a proven medication for neuropathy, but it may help you. And maybe you won't get the sedation that I got.

Wishing you all more comfort in your daily lives!

Laura

Surgery 5/5/2015 Lumpectomy: Right Dx 5/27/2015, IDC, Right, 1cm, Stage IA, Grade 3, 1/3 nodes, ER+/PR-, HER2- (IHC) Surgery 6/23/2015 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 7/1/2015, IDC, Right, 1cm, Stage IA, Grade 3, 1/3 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/3/2015 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/23/2015 Herceptin (trastuzumab) Surgery 1/19/2016 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/2/2016 Arimidex (anastrozole) Surgery 5/23/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 5, 2017 12:13PM gardengypsy wrote:

Thanks, Laura. Good luck. The sedation effect is welcome for those of us with insomnia! Gabapentin has that effect on me but I must keep taking it. I am 16 months out from the Taxol.

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 7, 2017 10:03PM 2westies4me wrote:

I felt the same way. Thought I was pretty lucky until the neuropathy started getting worse....just don't understand. Am trying acupuncture, but no improvement yet.

Have you received any tips on relieving the discomfort?

Dx 12/5/2016, IDC, Right, 5cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 12/16/2016 Lumpectomy: Right Radiation Therapy Breast Targeted Therapy Perjeta (pertuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 8, 2017 09:26AM Jbakerwebb wrote:

nothing other than gabapentin and custom orthotics. It's so odd because mine is bad some days and not so bad other day but always there. I'm one year out of chemo and it's about the same. I'm going to try the alpha lipoic (spelling?) again because I think it helped in the past. I just keep forgetting to get some.


Tomorrow I go for my 3 month check up......it always brings a bit of stress.....and it takes all dayBUT I'm grateful to be here!!


Blessings......jackie

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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Oct 11, 2017 09:04PM - edited Oct 11, 2017 09:10PM by gardengypsy

Bosom and everyone:

Three weeks ago we bought a house that had one floor living - including laundry - because stairs are dangerous and difficult for me.

I am taking 2100 mg Gabapentin daily and it keeps the pain at bay unless I stay on my feet too long. It makes me totally loopy; I could never keep a job right now.

I am having the muscle and nerve testing on Friday. I don't really know why I am putting myself through this.

Very good recent article here on Neuropathy after Breast Cancer : http://www.medscape.com/viewarticle/885106

Even though they focus on all types of neuropathy, I find the Foundation for Peripheral Neuropathy newsletter helpful and validating. You have to become a member.

https://www.foundationforpn.org

I am using arnica cream on my legs and feet at night. Hot baths feel good. I am trying to find someone to do foot reflexology/massage.

Thinking of you, Bosum, and sending best wishes to everyone else who is suffering from this!

This is not Pink.

xoxoxo

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 11, 2017 10:31PM Lita19901 wrote:

I have a question about neuropathy and aromatase inhibitors and/or tamoxifen. Did it exacerbate the neuropathy you experienced from chemo and/or cause neuropathy on its own?

Dx 6/24/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/21/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Oct 15, 2017 08:28PM gardengypsy wrote:

jbakerwebb,


What brand and dosage for the alpha lipoic?

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 17, 2017 07:29PM Jbakerwebb wrote:

I don’t recall the dosage but I do remember I got the info from the breastcancer.org site. Ive just neglected replacing mine.

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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Oct 22, 2017 10:23AM Jbakerwebb wrote:

found it! lopoic acid (1,000-1,200mg per day) along with B6, B12. B- complex and folic acid, as studies show they (especially the alpha lopoic acid) can help regenerate the nerve coverings destroyed by the chemo that protect the nerves.

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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Oct 22, 2017 09:55PM gardengypsy wrote:

Thanks, Jackie.

---------

Three days ago, I had a massage and acupuncture. I think it helped a lot. In my new city we have "Community Acupuncture" which lets you pay on a sliding scale.

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 25, 2017 02:01AM artistatheart wrote:

I think someone posted not long ago that folic acid is not good for BC? Will try the lipoid acid though.....My neuropathy just gets worse and worse. It is really starting to make me crazy! Enough to consider quitting my current tx.....

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/9/2015 Femara (letrozole) Targeted Therapy 8/24/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Nov 12, 2017 04:59AM gardengypsy wrote:

I just started taking a high quality Glutathione from naturopath.After just a few days, I am noticing a decrease in pain.

I still need to run it by the pharmacist who specializes in oncology.


Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 17, 2017 02:18AM gardengypsy wrote:

Lita~ I definitely think that the Tamoxifen has made my Neuropathy feel worse. I have joint pain in my ankles and that enhances the neuropathic pain in my legs.

My PT is working on leg and foot balance and strengthening. Also cardio on the bike, since walking enhances the neuropathic pain in my legs..

Here is an article on neuropathy and MMJ.

https://www.marijuanaresources.com/marijuana-for-nerve-pain-offers-hope-neuropathy-sufferers/?utm_source=E-News+-+November+2017&utm_campaign=E-News+-+November+2017&utm_medium=email

Hey Bosom...You hanging in there??

MODS: Is there anyway to combine this thread with the “Vent" neuropathy thread?

<3 <3

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 17, 2017 07:50AM dtad wrote:

gardengypsy...so sorry you are suffering with neuropathy. I have an autoimmune neuropathy that was present before my BC diagnosis. It is the main reason I refused anti hormone therapy from the start. My QOL was already impacted and I just wasn't willing to make it worse. Nobody can judge unless they know the pain of neuropathy. BTW I'm in the process of getting medical marijuana. Good luck and keep us posted.

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 26, 2017 11:06AM NotBrokenJustBent wrote:

For whatever reason I have seen significant improvement this month with my neuropathy. To briefly reiterate, I finished my chemo 4 years ago and there have been ups and downs, but mostly downs and progression. My lifestyle is the same, as are my supplements, so I am unsure why the recent improvement. If I had to gauge it I would say perhaps 25% better as a whole. The burning is greatly reduced by 50%, my hands are much better, the zaps and firing of the nerves remains constant but even the leg weakness is somewhat improved and in the comfort of my home I manage quite well and it is most evident when I venture out, though I no longer bring my cane for safety and stability. I wish I had some remedy to share but I have none except my stress level has been reduced. I had been dx'ed as having PTSD, not from the BC alone but from all the trauma of life prior to and thereafter. I am a fighter by nature with a strong belief system of right and wrong but I have walked away from most of my battles, at least for now, so that is the only thing in my life that has changed. I just hope I don't slide back again as emotionally that takes it toll and is a major mind f*ck.

From all my research, doctoring and my personal experience along with others who contribute here, the window for nerve regeneration is roughly one to one and a half years after chemo. If improvement is not made during this time frame the prognosis is not good and course of treatment is pain management. This current reprieve is a welcomed change and it has given me hope that we may all still see improvement in the days to come.

Loss of QOL is very difficult and my fear of loss of independent and being dependent on others frightens me a great deal especially as the aging process progresses, but neuropathy is especially cruel in that it serves as a constant reminder of BC and makes moving on and forgetting the past especially difficult. No one warned me as to the risks even when I asked several oncologists about potential SEs. These doctors had best get on board and acknowledge the potential adverse SEs of these drugs, especially when treating early stage cancers. At my next MO appointment I will be sure to mention how I suffer. I never mention it anymore feeling it falls on deaf ears but I will need be more vocal so they will be more forthcoming to the next potential victim.

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Nov 26, 2017 09:51PM gardengypsy wrote:

dtad~ Taking Glutathione, doing massage and acupuncture. I think it's helping

Gotta get the mods to combine these two neuropathy threads. It's driving me nuts..

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 9, 2017 10:03AM NotBrokenJustBent wrote:

The neuropathy is back with a vengeance. I was so hopeful and so this decline is especially cruel.

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Dec 9, 2017 01:01PM NotBrokenJustBent wrote:

I just realized that I had several drinks over the Thanksgiving holiday. I never made the association because the decline started a couple days after the alcohol intake. Perhaps it is random but that could well have done it. can't believe I didn't think of that.

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Dec 10, 2017 09:04PM gardengypsy wrote:

I can never tell what makes it worse. It so frustrating.

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall

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