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
Log in to post a reply

Page 3 of 10 (100 results)

Log in to post a reply

Jan 10, 2017 10:02AM snowsogal wrote:

Jbakerwebb: Please be sure the supplements do not interact to with the Cymbalta. I take supplements too.

Use to be drs would be concerned about supplement and rx med interactions. I find here they don't even seem to care.

Oh, how the medical system has changed. I have seen it go downhill here with the primary care DRS.

I am looking at essential oils now to help with neuropathy. In fact, I have ordered an essential oil balm. I should receive it today.

Have you had any strange skin eruptions that just start to itch and they go away? I have had problems with this since my treatments? Like right now, I am just sitting here, and my right hand started to itch. I look down at my hand and see; I have a small bump that is really itchy, this happens a lot and absolutely maddening.

Is there a post forum already created for this? Does anyone know

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
Log in to post a reply

Jan 10, 2017 10:11AM snowsogal wrote:

Jackerwebb: I am not through menopause. My hot flashes are so bad that I could not handle the Tamoxifen or any of the Arimedix, Letrozole, Aromasin. The extra hotflashes, and other SE were overbearing from all these meds.

I hope Tamoxifen works for you. I started bleeding a little, and I did not want to put up with that SE on Tamoxifen. Hope your experience is more positive


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
Log in to post a reply

Jan 10, 2017 10:24AM snowsogal wrote:

Serenity: I am so glad your neuropathy reversed itself. Mine started during Taxotere, the oncologist decreased the dose the last four doses, but mine has not reversed. I guess I was too far long with the treatment to stop, and try another chemo. This was back in 2014.

I do take a specific neuropathy vitamin with B vitamins and R-Alpha Lipoic Supplement. I have seen the nerve itching decrease, but not the numbness or lack of feeling.

We pay a high price to be in remission or cancer free with are " new norm". Sometimes it just angers me

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
Log in to post a reply

Jan 15, 2017 06:07PM jbakerwebb wrote:

how much of the alpha lipoic acid do you take

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
Log in to post a reply

Jan 17, 2017 06:16AM gardengypsy wrote:

Snowsogal~ Thanks so much for taking the time to share your experiences. I think that a short-term disability claim is in my near future. I need the time to focus on my sleep, exercise and supplement regime without the complications of work-related fatigue and stress. Never heard of Allsup.

Today, finally, is my neuro eval. Along with many other questions, I will ask about the B vitamins.

It seems like many of these pharma and natural products will work for some, yet others do not get similar relief. All the more reason to keep sharing ideas

Jackie~ It seems like a trip to a naturopath or integrative health center isa pretty important step for us to take. I worry about the expense.

Has anyone out there tried yoga therapy?

Have a good day, ladies..

.


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
Log in to post a reply

Jan 22, 2017 06:17PM gardengypsy wrote:

Bosum~ Yes. I have a feeling I will feel well in other ways, too.

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
Log in to post a reply

Jan 24, 2017 09:11AM snowsogal wrote:

Hi Jackerweb: About 300 mg a day. Please note it needs to be R-Alpha Lipoic Acid. I buy my supplements at

www.lifeextension.com

In fact, if you have a membership. You can have a 30 min consultation over the phone with their oncologists or any specialist for free. It has been very beneficial for my husband and I. If dr is busy you leave a msg and the best time to call, and they will call you back.


Hope this helps

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
Log in to post a reply

Feb 1, 2017 06:30PM gardengypsy wrote:

snowsogal~

Did Allsup help with SSI? Or with a claim through your employer's disability insurance?

Also, did the R-Alph Lipoic supplement help with neuropathic pain?

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
Log in to post a reply

Aug 5, 2017 07:51PM Katjadvm wrote:

Hi everyone. I am a year out from chemo. I developed a peripheral neuropathy and they decreased my final two chemo doses. I work with a naturopathic oncologist and she has me take 15 grams of glutamine twice daily and 300 mg of R Lipoid Acid twice daily. I had initially weaned off of the glutamine about a month after chemo, but then the tingling in my hands returned and I restarted. If I take the glutamine, I don't have any neuropathy signs. Just wanted everyone to know.

Dx 3/17/2016, IDC, Right, 1cm, Stage IIB, Grade 3, ER+/PR-, HER2- Chemotherapy 4/7/2016 AC + T (Taxol) Surgery 9/29/2016 Mastectomy: Left, Right
Log in to post a reply

Aug 21, 2017 09:18PM gardengypsy wrote:

Kat~ Do you take these supplements for pain, numbness or both?

I am going to a neurologist next week who specializes in neuropathy. It has taken me 6 months to get a freakin' appointment, while the onc just keeps on upping my Gabapentin dose.

If I learn anything new, I will post it here.

Best wishes to all.


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

Page 3 of 10 (100 results)

Scroll to top button