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Old 05-18-2007, 10:23 PM   #1
weezie1053
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Question Neuropathy - Side affect of Taxol

Completed 4 rounds of AC/Cytoxin in Nov. Completed 12 rounds of Taxol/Herceptin in Feb 07. Diagnosed with Neuropathy after eighth combo of taxol/Herceptin. Herceptin continues every 3 weeks until Nov 07. Currently taking Neurontin for pain. Advised by physicians the neuropathy may or may not go away in time. Wondering if others experienced the neuropathy and if it did subside. How many months?
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Old 05-21-2007, 08:57 AM   #2
Lori
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I had neuropothy (sp?) also, however, I do not think it was as bad as yours. I can tell you that it did subside for me. My feet are almost back to normal. I finished taxol a year and a half ago, so it did take time.
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Old 05-21-2007, 01:31 PM   #3
Donna
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it gets better

I have neuropathy in my feet and at the same time my knees started aching with the same sort of pain although knees aren't typically mentioned. At first it was so bothersome I had to take vicodin in addition to the Neurontin, but after a few months now it has improved alot. My feet and knees are still not back to normal, but the pain and burning sensations have subsided and I only need the vicodin maybe once a week. I look forward to better improvement as time goes on, I think it's pretty rare that it is permanent.

Have a great day!

Donna
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Old 05-31-2007, 03:05 PM   #4
Jean
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It take time....

Anywhere from six to nine months - it has been nine months for me and now
my toes are 75% improved....so I am hoping the rest will follow.

Wishing you good luck.
Jean
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Old 05-31-2007, 05:40 PM   #5
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One thing that can help with neuropathy (as it helps heal the nerve endings) is Glutamine powder. It doesn't work overnight, but over time, it can really help with neuropathy. I took it when I was on Taxol, and I still take it. I have been off of Taxol for 2.5 months now, and I do notice that the neuropathy (which was worst in my toes) is subsiding a bit (by about 30-40% I'd say).

I take 1 teaspoon of glutamine powder in a 'shot' of juice 3 times a day...

You can buy it at Whole Foods or any health food/vitamin store. This was told to me by my cancer specific naturopath/nutritionist.
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

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Old 06-02-2007, 07:41 PM   #6
cafe1084
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I also had neuropathy during taxol, but I took glutamine powder and vitamin e, which I read about in a research article that says these 2 and another supplement(can't remember what it was) would reduce the neuropathy by 35%, which was good enough for me. This kept it at bay for about 6 treatments, then I noticed some muscle spasms in my back and hands, numb feet like i was walking on air, then the pain and tripping over my own feet started. it's only been about 2 months and it's improved about 50%, but I was told it could take a year for it to completely resolve. It also flared up something in my right knee, probably arthritis, that had never bothered me before. It's funny though. I spent a week at the beach in the sand, sea, and salt air and it never bothered me once, until I returned home, the started again 2 days later. I think I've found my excuse to move to the beach full-time
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Old 06-02-2007, 07:57 PM   #7
LAURIE
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My fingers are about 90 % back to normal now. I noticed a big change about a month ago. I have some numbness each week with herceptin but that only lasts a day or so. I do not have much feeling in my thumb nut that is because of wearing my lymphedema glove 15 hours a day. My feet are 100% back, but they were not as bad as my fingertips were.
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Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
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Old 06-11-2007, 09:29 PM   #8
weezie1053
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Neuropathy - Side affects to Taxol

Thank you to all who responded to my inquiry about neuropathy following Taxol. I have cut and pasted a couple of the emails regarding Glutamine and I've forwarded the comments to my oncologist who I will see Friday.

I have been off of Taxol since Feb 07, and I am happy to report it is subsiding in my hands. My feet, however, still aggravate me, but I can live with it. I took Neurontin for several months; however, I found that I was suffering from fatigue. Since I stopped taking the Neurontin, my stamina has improved.

This is a wonderful website and resource. I will be checking in more frequently now that I am learning how to maneuver around it.

Thank you all for your help. God bless.

Louise
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Old 06-13-2007, 08:18 PM   #9
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I have the same situation as Jean. 9 months out from the start of taxol, toes about 75% better. It's good to know they may get better yet.
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Old 06-15-2007, 04:19 PM   #10
weezie1053
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Smile Neuropathy

Talked with my Oncologist @ UVA during my herceptin treatment today. They advised for me to use Grape Seed Extract and B6 (100 mg, twice daily). They advised the glutamine powder will only benefit patients while still on Taxol. Thought I'd share this with others.

Also got my BRCA tests back today, and they were negative.

Gals, I'm trying to figure out this website. What's the difference between a thread and a post? I guess I'm technologically challenged. I'm hoping I'm responding to the trails of emails correctly.

Louise
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  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
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