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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Dec 1, 2016 10:55PM - edited Dec 1, 2016 11:07PM by snowsogal

This Post was deleted by snowsogal.
Hormonal Therapy 7/21/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 7/30/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/2/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/12/2015 Whole breast: Breast, Lymph nodes, Chest wall
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Dec 1, 2016 11:05PM - edited Dec 1, 2016 11:09PM by snowsogal

This Post was deleted by snowsogal.
Hormonal Therapy 7/21/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 7/30/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/2/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/12/2015 Whole breast: Breast, Lymph nodes, Chest wall
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Dec 1, 2016 11:18PM - edited Dec 1, 2016 11:19PM by snowsogal

Dear C wind:

Yes, I take Nerventrax a neuropathy supplement. I have more numbness, itching, and pain on my big toes. My treatments were two years ago.

I went the dr route, but nothing helped.

The supplement to regenerate the nerves.

I don't know if this is going to be permanent or not

Hormonal Therapy 7/21/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 7/30/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/2/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/12/2015 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 8, 2017 06:44PM gardengypsy wrote:

My Taxol treatment ended in April 2016. The neuropathy pain is mostly in my shins, pain from the knees down. I wouldn't make it through the day without Gabapentin. At night, Ibuprofen helps a lot.

I am still shocked that I am in this condition.

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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Jan 9, 2017 09:42AM snowsogal wrote:

Hi Gardengypsy:

Yes I am shocked too, I was hoping that after chemo left my system that neuropathy would have left also, seeing that they decreased the Taxotere for the last four doses. They did this because Lyrica and Neurontin did not help at all.

Unfortunately, I understand now that we pay a high price to be in remission.

In fact my left side of my face is still swollen a little from the chemo, as well as my collar bone when they removed the port. It is amazing the changes that occurr in our bodies after this cancer journey.

I am glad that Neurontin and Iprofren works to take the edge off the pain.


Take Care

Hormonal Therapy 7/21/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 7/30/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/2/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/12/2015 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 9, 2017 06:52PM - edited Jan 9, 2017 06:54PM by gardengypsy

snowsogal~

If I was not working so hard (as a teacher), and got more rest, I'd be in better shape. The exhaustion from pain and lack of sleep is doing me in.

I have my first neuropsych eval next week. It keeps getting rescheduled. I hope it's worth the trip! From these posts, it seems like it's a waste of time...

Are the nerve regeneration meds working? Why didn't the docs start with it?

I am not sure if Ibuprofen is a good thing to take daily.I would take more Gabapentin, but I think it may be contributing to my brain fog...

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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Jan 9, 2017 08:14PM minustwo wrote:

Garden Gypsy - the neurologist I went to said they could do all kinds of tests, but it was clear that I had CIPN, so I opted to skip the tests. My feet were numb like blocks of ice but I didn't have much pain. She said it might gradually get better over 2-3 years. She also cautioned that "better" means better that it is when the problem starts - not back to where you were before chemo. A number of us have had some improvement, but those that I know are mainly dealing with lack of feeling and not constant pain.

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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Jan 10, 2017 05:27AM jbakerwebb wrote:

I'm going to my GP Thursday to discuss my general health and make changes to my meds. I'm going to ask him about changing to cymbalta

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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Jan 10, 2017 09:23AM snowsogal wrote:

Gypsy,

The natural supplement is something I had to research myself; because I can not handle SE of most Rx meds. I will say that the itching is more manageable, which is a small fiber sensory neuropathy that I have acquired. I do not have so much of the burning and shock like pain that I had.

Your dr will not tell you about this, unless he is a Naturo Path Dr; I just learned Conventional Drs have been taught symptom control with diseases not a cure.

I went to a neurologist and had the Nerve Conduction Study, and it did not confirm that I had neuropathy, but with their evaluation tests that they did that was the only way it was comfirmed. She tried Cymbalta, but did not work. Gave me a pain dr referral that all care was not covered.

So, I asked a friend who she went to. I called that dr up, they did their testing and said I had chemo induced polyneuropathy. This means more than just one set of nerves involved.

Tried Lyrica again and it gave me a reaction. Then they gave me Nucyanta ER, pain med. When they tried to imcrease it it just drugged me up. Besides that I had to drive to 8 different pharmacies to find that particular low dose of that drug. I felt too much stress going there so I canceled my last appt and never returned. The only supplement the pain dr gave me was Metanax, but the Ins stopped covering it, because it was not a rx drug. I felt some energy from it, but it was for only two months

I only went about four months, and quickly saw that these people were not ever going to get better. I only saw the actually dr once and then the CNP handles it from there. All they wanted to do is give me narcotics, and I was not wanting to live like that.

They give you a drug screen every other time. They may call you anytime and request you bring in the pills and count them. This is a random call, and usually a extra visit. You do not get refills called in. If you have problems with the meds, it requires another office visit, to get it taken care of.

I just did not like the whole system. I was treated like a number and not with dignity.

This was my experience, maybe yours will be positive. My mom told me something, before God took her 2014, they give you one medicine for a condition, and they have to give you another for the side effects of the first med. She was absolutely right. That has been my experience, and I am not going that route.

I can relate to pure exhaustion and insomina or sleep issues. That is all I have ever known since my 20's. They can't figure that out either. Did sleep study and did not detect the reason why?

I take Vervain for sleep.

Having chemo has messed me up in so many ways. I just hate it.

Take Care


Hormonal Therapy 7/21/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 7/30/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/2/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/12/2015 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 10, 2017 09:47AM snowsogal wrote:

Hi Minus,

This is so sad what these chemo drugs have done to some of us. Is your right foot numb like a block of ice too? If it is how do you drive a vehicle? I have a little amount of neuropathy on the right side, but more on my left. Thank God I am able to drive.

I have some pain in my feet, but mostly numbness, lack of feeling, and the clincher 24/7 nerve itching all over my whole body. In fact, it was so bad during chemo, that the last few treatments friends would have to sit with me at my house to help me deal with it. It helped take my mind off of it when people were here.

These cancer treatments have really "rocked my world". In fact, I went through an organization called Allsup, and was approved within month or two for disability. This was not a lawyer I went through. I filed in 2015 online through SSI but heard nothing. Then my chemo fog kicked in and remembered a good friend went through Allsup. So, I took the plunge and called Allsup. They were my mediator with SSI. They only accept cases that they feel, have a good chance of getting disability payments.

Do I want to be on disability? Absolutely not, but now I don't have to worry about how I am going to literally function at a job with chemo fog, exhaustion, lack of feeling from neuropathy.....

I am not happy Minus that we are here, but what a comfort to know I am not alone

Hormonal Therapy 7/21/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/22/2014, IDC, Right, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 7/30/2014 Lymph node removal: Underarm/Axillary; Mastectomy Chemotherapy 9/2/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/12/2015 Whole breast: Breast, Lymph nodes, Chest wall

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