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Topic: Neuropathy flare ups?

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Oct 6, 2018 06:14AM

lulu2533 wrote:

I have had some minor neuropathy in my feet for a while now, but yesterday I started having severe pain in my feet and legs. It was horrible, I could barely walk. After about 12 hours it has subsided quite a bit. Has anybody else had flare ups like this?

I did go see my PCP and she ordered an ultrasound and xrays. They didn't see anything.

Dx 3/1/2015, IDC, Right, 1cm, Grade 1, ER+/PR+, HER2- (FISH) Surgery 5/19/2015 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/1/2015, IDC, Right, 2cm, Stage IIIC, Grade 3, 11/23 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 6/10/2015 AC + T (Taxol) Hormonal Therapy 10/31/2015 Arimidex (anastrozole) Radiation Therapy 11/15/2015 Surgery 4/5/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 6, 2018 06:20AM - edited Oct 6, 2018 07:34AM by wrenn

I do but wonder if it is something other than chemo that caused it? I only had one dose of chemo 5 years ago and developed neuropathy right after and it has continued to get worse. I noticed if I ate anything with aspartame I would get a flare up. I also noticed it when eating red meat or pro inflammatory food I think.

I am now investigating the use of ciprofoxacin and flagyl since they can cause permanent neuropathy.

ETA statins can also cause pain in leg muscles (statin induced myopathy)

I hope you get some answers.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Oct 6, 2018 06:30AM Spookiesmom wrote:

levaquin and keflex are known to cause neuropathy even years after use.

Dx IDC, Stage IIIA, Grade 3
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Oct 6, 2018 09:18AM Denise-G wrote:

My sister and I both have neuropathy from chemo. Weather makes a huge difference in how we feel. Extreme heat and extreme cold make it worse. It is starting to get colder here in Ohio and my neuropathy is acting up much more than it did all summer.

Recently, my cardiologist increased my statin drug. That really did a number on the neuropathy. I could barely walk. He had to cut it back, and I was back to how I usually am.

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Oct 6, 2018 10:20AM sbelizabeth wrote:

Ugh--neuropathy. Towards the end of the day my feet are on fire. The only thing I've found to help--a bit--is CBD balm.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Oct 7, 2018 05:25AM exercise_guru wrote:

search for coenzyme Q10. it is essential to take that with a statin because it outcompetes that pathway. my dietician told me doctors should write a prescription of conezyme Q10 when they write a prescription for a statin.

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Oct 7, 2018 06:34AM wrenn wrote:

My doctor and pharmacist always mention the CoQ10. I haven't seen a difference with the neuropathy though while using it. I guess most of us would choose the neuropathy over no treatment but I am frustrated that I got the damn thing anyway. :-)

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Oct 7, 2018 04:24PM - edited Oct 7, 2018 04:28PM by exercise_guru

I have had severe weakness in my hands and neuropathy from TCH chemo and surgeries to the point that it significantly affects my ability to load and unload the dishwasher as I drop and break dishes. It has wrecked my career and nearly ended my marriage. I also have had severe numbness in my right foot for 2 years. I am only 45 so I am desperate and tend to be more willing to do ANYTHING and try ANYTHING. I also had high cholesterol. I chose to get some B12 testing and found out I was very low in that . I chose to get a Bcomplex shot ( methylated no folic acid ) as well as B12 shot and It improved my neuropathy and my pain significantly. Then I chose to completely eliminate coffee and animal products due to a study I read about neuropathy. It was a small study and based on diabetics but again I was desperate. I went 100% Vegan whole foods diet (google if you are interested pureplant nation and forks over knives Michael greger, john mcdougal ) After two months I now have just a twinge of neuropathy once or twice a day. My hands are still weak in that if I overuse them I feel tired at the end of the day. My feet are no longer numb and they are do not ache and wake me up with the pins and needle pain at night. I do not know if this is permanent

I post this not to convert anyone I would feel ashamed not to share my experience even though I am in the early stages of trying to make these changes and I have seen significant improvements. I will stay this course as my marriage and livelyhood are at stake. I don't want to derail this thread if someone wants to chat about this feel free to pm me.

I have not had a flare up so I can't tell if certain foods or drugs cause that and my cholesterol was astronomically high so I may still have to try a statin when I get tested in December. and I was prescribed statins but chose to try this first. I will get my cholesterol tested after 12 weeks of eating this way ( so far it is 6 week) but my liver enzymes all went back to normal even though I only lost 8 pounds so far)

The first thing I would try is cutting all fat. I have read that this may be why my new lifestyle is helpful.

Someone on another thread recomended Cymbalta.

Neuropathy is a terrible terrible condition. My heart goes out to anyone suffering from it.

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Oct 7, 2018 05:55PM wrenn wrote:

I was vegan for about 7 months and Listened to Dr. Greger’s ‘How Not To Die’ daily and did the daily dozen and my leg pain got worse. I wonder if each of us have different combinations of causes? It is frustrating to find what works or why some days are better than others so we could do whatever caused the better day every day. It makes it easier to not be alone so this thread helps


Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Oct 8, 2018 12:15AM lulu2533 wrote:

Thanks for all the replies. I have a message into my oncologist. This pain is really interfering with my everyday life.

Dx 3/1/2015, IDC, Right, 1cm, Grade 1, ER+/PR+, HER2- (FISH) Surgery 5/19/2015 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/1/2015, IDC, Right, 2cm, Stage IIIC, Grade 3, 11/23 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 6/10/2015 AC + T (Taxol) Hormonal Therapy 10/31/2015 Arimidex (anastrozole) Radiation Therapy 11/15/2015 Surgery 4/5/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 8, 2018 04:58PM - edited Oct 9, 2018 08:57AM by exercise_guru

As for the Vegan thing. I like Greger as well. I also have high cholesterol, high blood sugar and gained 25 pounds after my oophrectomy/hysterectomy eating the same food I always have. I am not sure why removing all fat/caffeine and animal products ( I don't do soy or dairy anyway) and adding green vegetables changed my neuropathy but I noticed a huge difference in 18 days. So much so that I was stunned and assumed it must be the placebo effect. I stuck with it along with the B shots and my foot improved over time. It was significant for me ! Enough to stay with it until January to see my new blood work and to be pain free and be able to use my hands. I couldn't even type this post 8 weeks ago it was so tight and painful.

Yes yes neuropathy is a terrible pain that truly affect your daily life. the effects of Health from cancer have nearly wrecked mine. I would recommend anyone with neuropathy consider taking B12. its water soluble so it's safe your body gets rid of any extra.

In my case I tested very low in B12 even though at the time I was eating meat prior to be starting this whole foods diet.

you could take the sublingual B12 easily in the mornings it might make a difference. I have been doing a b complex shot plus B12 every since I went on this whole foods high vegetable no fat of any kind eating plan. it took quite a while for my body to switch over and for me to figure out how to balance my nutrition. it also was very helpful to have a dietitian because she helped me figure out how to digest beans.

I think neuropathy from these treatments and from drugs and from anesthesia that many of us had is far more complex than diabetic neuropathy. Honestly I was surprised that I had any effect and changing my diet and I think it's worth trying even if maybe it doesn't work for everyone. I know from watching the webinar on the opening page that carboplatin just fried my peripheral nerves. I'm just trying to hold onto and make the best of what I've got because I'm only 45 and this is a long road ahead.


I started the B complex and b12 shots( minus folate and folic acid because the cancer center told me to avoid that ) because I heard that was not safe about six weeks before I started the plant based diet. So who's to say it's not the B12 or the B6 or the B complex that is making the difference. I plan to stay on it until January when I have my blood work done again. I also had thought of adding Magnesium as most people are low in it and it is essential for the nerves.


I wish there were more treatments and drugs available to treat this. the neuropathy webinar on the the neuropathy webinar on the breast cancer homepage is worth watching or listening to I did learn a lot from it. Most importantly I learned that I wasn't crazy because the neuropathy he described as identical to what I experienced 2 months after I finish chemo.

I have tried a lot of drugs for treatment at least what they would make available to me.

I didn't like Gabapentin but many people do. it cause severe short-term memory problems for me even worse than I already had from chemo brain.


I haven't tried Cymbalta but I have heard that it does work very well for many people.

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Oct 10, 2018 12:22AM maryna8 wrote:

Denise-G

I noticed the symptoms of neuropathy after my first treatment of Taxotere.

I have noticed that when there is a weather front moving in signaling a change, a day or two before it comes in my whole body will ache as if I've been beaten.

sbelizabeth

The more active my day is, the more my feet will burn that night. And leg and foot cramps galore too, ugh!

I have not noticed symptoms being worse with any particular food, seems to be activity related for me.

Does anyone else have weak jelly-legs after walking a while?

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 10, 2018 03:36AM wrenn wrote:

maryna8 I have weak legs after standing even for a minute and so I now use a walker with a seat so I can sit if I have to stand for long. It is easier to be moving than standing still but still painful. It is interesting to hear that you got it after only one dose. I wondered if mine could be caused by my single dose. I too ache all over so wonder if it is just nerves in general affected. Interesting thread.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Oct 10, 2018 09:34AM - edited Oct 10, 2018 09:35AM by maryna8

Wrenn

The first dose of Taxotere caused my feet to feel like puffy little tingling pillows, and then it went away in a few days. But with each dose it became worse, and the MO started cutting the dose, but I assume the damage was done. When I got home after chemo treatments I would lay on the sofa with my feet on an ice pack.

I had the nerve test with electrodes afterwards, and was told I had sensory, motor and peripheral neuropathy. I remember that doctor told me be careful about getting a cold or flu because I would feel worse than I used to; I asked him about the leg weakness and he said the nerves are not signaling the muscles properly, so they don't respond properly. I get tired much easier and he said yes, that's to be expected too.

The other thing I have learned is that no doctor seems to know a whole lot about nerve damage, they do know how to prescribe pills. I myself have learned that any pain is amplified. Smells are smellier too!

I do think it can be caused by one dose, since it happened to me too.

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 10, 2018 11:24AM wrenn wrote:

Thank you so much. It makes it easier to deal with reading about others' experiences.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right

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