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Old 01-24-2011, 08:08 PM   #21
msleslie
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Re: Neuropathy

Really taking a hit with this neuropathy. All nails are separating from nail bed & discolored. My index finger on my left hand is swollen and it hurts to relax my hand in a straight position. I'm keeping it cupped for a little relief. There is intense throbbing pain and I have been taking tylenol pm to get a little relief. But tonight I'm thinking I will pull out an old bottle of percocet. I will call my oncologist tomorrow to see what can be done. Anyone else have throbbing pain with the neuropathy?
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6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
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Old 01-24-2011, 10:54 PM   #22
Trish
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Re: Neuropathy

The boots are definitely the last straw. Hopefully the neuropathy will pass with time-from your photo I can't imagine you in clogs! All the best,
Trish
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Old 01-27-2011, 09:32 PM   #23
Estelle
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Re: Neuropathy

Greetings all,
I finished Taxol in September '09 and still have significant neuropathy in my in my fingers and feet/toes (feels like pin and needles 24/7, and only slightly better -- I can now get on shoes, and no, they are no nearly as stylish as I wore before, but beat the flip flops I lived while I was on taxol. I have not tried any of the medication yet, preferring to adjust to a new normal, and see if I can cope with natural remedies. I have tried tonic water, and vitamin B but not much effect. I would like to try the apple cider soak, but don't know the details (how frequently; amount of vinegar to be added to water). If anyone knows this please let me know.

Thanks.

Estelle

Diagnosed 12/08
Bilateral mastectomy
Unsuccessful Tykerb Trial (could not tolorate)
Switched to Herceptin
Finished Chemo 9/09
Finished Herceptin 7/10
Candidate for Vaccine Trial
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Old 01-27-2011, 10:54 PM   #24
Jackie07
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Re: Neuropathy

Found two recent report by researchers in Europe (underline emphasis is mine):

Nat Rev Neurol. 2011 Jan 25
Monoclonal antibody therapy – associated neurological disorders
Bosch X, Saiz A, Ramos-Casals M, the BIOGEAS Study Group
Department of Internal Medicine, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Hospital ClÃ*nic, University of Barcelona, Villarroel 170, 08036-Barcelona, Spain
Abstract
Several neurological disorders have been associated with the use of monoclonal antibodies (mAbs), especially those targeting tumor necrosis factor (TNF) and its receptors. These disorders include, among others, multiple sclerosis, optic neuritis, and various forms of peripheral demyelinating neuropathy. Progressive multifocal leukoencephalopathy, the natural course of which is lethal within months, has been mainly associated with the anti-α4-integrin mAb natalizumab and, to a lesser extent, with rituximab, alemtuzumab and efalizumab. The prevalence of demyelinating disease induced by biological therapies, as reported in randomized controlled trials and postmarketing studies, has been estimated to range from 0.02-0.20%. Peripheral neuropathies can occur early or late after initiation of therapy. Short-term follow-up indicates relatively good outcomes, sometimes after mAb discontinuation alone, although corticosteroids or intravenous immunoglobulin may be necessary to reverse and stabilize the condition. Definitive cessation of the biological therapy should be discussed on a case-by-case basis. Prospective postmarketing studies in which the control group includes patients with rheumatic autoimmune diseases-most notably rheumatoid arthritis-treated with conventional therapies could help us to evaluate the real risks and outcomes in patients receiving mAbs who develop neurological diseases.

Curr Treat Options Neurol. 2010 Dec31
Chemotherapy-induced neuropathy
Cavaletti G, Alberti P, Frigeni B, Piatti M, Susani E.
Department of Neuroscience and Biomedical Technology, University of Milano-Bicocca, Via Cadore 48, 20052, Monza, Italy, guido.cavaletti@unimib.it.
Abstract
OPINION STATEMENT: Chemotherapy-induced peripheral neurotoxicity (CIPN) is one of the most severe and unpredictable side effects of modern anticancer treatment. In recent years, a clear understanding of the importance of an integrated approach to CIPN has become evident, and efforts are increasing to better characterize its features and to identify more accurate methods to report and grade its occurrence. The clinically relevant impact of CIPN on cancer patients has been known for a long time, but knowledge of its pathogenetic aspects is still very limited. This incomplete knowledge is one of the major limitations in identifying targets for evidence-based neuroprotective strategies. Nevertheless, several studies have been devoted to the prevention or at least the effective treatment of symptoms secondary to peripheral nerve damage and to the early identification of patients at high risk of developing severe CIPN. Unfortunately, none of these studies has been successful and the optimal management of CIPN patients is still an unmet clinical need. Therefore, the modification of chemotherapy is currently the only available approach to limit the severity of neuropathy in the vast majority of patients. The indications for treatment modification are not universally accepted and they can differ among the various drugs. Generally, treatment modification should be considered as soon as symptoms and signs impair the daily life activities of the patient, but the possibility of a delayed worsening of CIPN after treatment withdrawal ("coasting") should always be considered, and delay of modification decisions should be avoided.
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http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Old 01-27-2011, 10:58 PM   #25
Jackie07
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Re: Neuropathy

Here's the information from Livestrong about how to treat it 'naturally' (Apple cider recipe included):

http://www.livestrong.com/article/74...ts-neuropathy/
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 01-29-2011, 06:23 AM   #26
KDR
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Re: Neuropathy

My lovely onco nurse said equal parts warm water to apple cider VINEGAR.
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Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 01-31-2011, 07:19 PM   #27
das
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Re: Neuropathy

So I developed neuropathy during TCH and was told it was from the taxotere. When I went to my appointment for my third herceptin only infusion my neuropathy was the same as it had been when I finished 9 weeks earlier. AFter the infusion within about 3 hours all my neuropathy got worse. Larger areas and has stayed that way for a week. It is the worst it has been. Does anyone have any thoughts about this??? Thanks
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Old 04-27-2011, 10:59 PM   #28
gdpawel
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Re: Neuropathy

While doing my paper on Taxol, I came across a molecular basis for the peripheral pain from it. It appears to be caused when the drug binds to a protein and initiates improper calcium signaling, researchers at Yale School of Medicine reported in a study published in the Proceedings of the National Academy of Sciences.

This response leads to side effects such as acute hypersensitivity, slower heart rhythms, tingling, numbness, and other symptoms. These serious side effects limit the drug's effectiveness. Peripheral pain becomes worse with continued use and increased dosages lead to persistent and irreversible pain.

The binding protein is called neuronal calcium sensor (NCS-1). When paclitaxel (taxol) binds to NCS-1, it makes the cell more sensitive to normal signals and increases the magnitude and frequency of changes in calcium. Over time, increased calcium levels activate an enzyme (calpain) that degrades proteins, especially NCS-1.

Calcium signals are needed for nerves to be stimulated and to respond and the loss of NCS-1 makes it more difficult to generate any calcium signals. While the loss of NCS-1 stops the protein interaction that is causing the inappropriate calcium signals, it also decreases the ability to have normal responses (PNAS 104: 11103-11108 June 20, 2007).

Someone had asked, does the intake of calcium in your diet have any bearing on any of this? Believe it or not, the Mayo Clinic has a clinical trial going on using calcium and magnesium in preventing peripheral neuropathy caused by another Bristol-Myers Squibb drug Ixempra (ixabepilone) in patients with breast cancer (NCT00998738).

http://clinicaltrials.gov/ct2/show/NCT00998738
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