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Old 09-27-2008, 09:24 PM   #1
mariapiedra
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Question taxol neuropathy s

Hello All, I have a question regarding neuropathy side effects from taxol. I've had 4 taxol / herceptin treatments and I have 8 more to go. Side effects so far haven't been too bad. I've recently started to get some tingling in my fingers and feet; with 8 more treatments to go I'm concerned that the neuropathy will get worse. Has anyone on taxol found any helpful tips to reduce the neuropathy side effects or anything that helps to keep neuropathy from getting worse? Thanks!
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6/2008 1.1cm,er/pr-,her2+
7/2008 lumpectomy,neg. nodes
8/2008 port
8/2008 1st of 12 taxol/herceptin

Just getting started...
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Old 09-28-2008, 04:51 AM   #2
Sheila
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Maria
I have been on Taxol for 15 months and so far I do not have the neuropathy. I do know they told me to prevent extreme heat or cold to both my hands and feet....if it gets bad enough they can give you neurontin for it...a RX Drug your onc. can order. The good news is it goes away after treatment is finished (although it sometimes takes awhile.)
Hope this helps.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-28-2008, 06:07 AM   #3
michka
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Hi Maria. I had a bad experience with Taxol. 20 months after the end of Taxol, I have bad neuropathy in my hands and feet. I take Neurontin (which generates other problems) and still suffer from it. My Onc. had told me it would disappear after a few months when I would end chemo. It didn't. I should have stopped Taxol maybe one or two weeks before because I could feel it getting worse at each round. I suggest that if the symptoms are mild, like tingling, not to worry. But if it gets worse, talk to your Doctor to be sure you are not going too far.
Michka
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FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 09-28-2008, 12:12 PM   #4
doh2pa
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Hi Maria

I have had multiple neurotoxic therapies and have had issues with neuropathy. I have been able to control it with the following:

1. 50 mg of B6 once a day
2. 5 mg of glutamine 3 times per day
3. accupuncture.

Accupuncture has helped me tremendously. I had never done it before but got relief after only two treatments. I continue to go back to my accupuncturist when my neuropathy bothers me. The B6 and glutamine are supplements you can find anywhere and easy to take. I would try these easier paths before considering something as like neurontin (which has its own set of side effects).
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Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 09-28-2008, 03:50 PM   #5
BonnieR
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My oncologist recommended 30 gms of glutamine a day. It is a powdered amino acid dietary supplement that can be purchsed at health food stores. You mix it in beverages. Ask your doc about it.
I was also on Neurontin for other issues (have recently come off)
My neuropathy symptoms would be worse towards the end of a day or when particularly tired. Still have some. But it is less all the time.
Keep the faith
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 09-28-2008, 09:39 PM   #6
Catherine
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I only had 8 chemo treatments. The last 4 were Taxol and I did not find it a very kind drug. I had neropathy. I wore little white cotton gloves to deal with my hands and the problems there. I had diffiucltly walking. When the pain was more than I could handle, they gave me decadron. I would talk to your doctor alot. Not sure why you have to be on taxol for so long, but make sure you know the reasons why. If it is killing the cancer, that is good. I have no left over problems from my neropathy, but I think others on this site have had lingering problems. I would be cautious of Nerotin also....sorry for the negative reply. I am no expert....just keep asking questions.

Hugs, CAtherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
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15 years and no recurrence as of April 2021
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Old 09-29-2008, 02:11 AM   #7
jones7676
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All of the Taxols I have been on caused me neuropathy. Taxotere was the worst for me and my feet felt like giant slippers and I did not walk very well. They say there is help out there, but I tried to just grin and bear it by telling myself it wasn't forever. If it is bothering you that much I would get assistance from the doctor.
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 09-29-2008, 11:07 AM   #8
rebecca0623
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I had neuropathy after first TCH (taxotere) and onc slowed infusion. Had some neuropathy after second TCH but not as bad.
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Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09


BRCA testing done - results NEGATIVE!

cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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Old 09-29-2008, 02:50 PM   #9
Louise O'Brien
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Maria:

For a few years now, the hospitals in our province began outfitting women undergoing taxol infusions with huge iced white "boots and mitts" (they looked like oven mitts) to cover feet and hands.

Cold to begin with but you got used to it - in fact I would ask for a second pair of "boots" when the first warmed up. They said they had a lot of evidence that this prevented neuropathy and I'd have to say it worked for me. Other than a bad toenail on one foot (which is finally returning to normal after two years) I had no other effects.
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Old 09-30-2008, 09:39 AM   #10
mariapiedra
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Thanks for the replies your imput has been helpful. At this point the tingling in my fingers & feet is tolerable and not interfering with my normal daily activities. I also asked my nurse about this problem and she recommened the B6 once a day and the Accupuncture; if that doesn't help then try adding the glutamine - because it can be expensive. This is the same plan that Donna reccommended in her post. Next week I plan to ask my onc. about the iced booties and mitts approach that Louse has suggested. I'm not sure they offer it, but it's worth asking. Also, I will talk to my onc. again if the symptoms get worse as others have suggested. It sounds like sticking it out if it the symptoms get too painful might not be the best approach. Thanks for all of your wonderful adivise. If any one else has anything to add or any additional suggetions I would love to hear from you!
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6/2008 1.1cm,er/pr-,her2+
7/2008 lumpectomy,neg. nodes
8/2008 port
8/2008 1st of 12 taxol/herceptin

Just getting started...

Last edited by mariapiedra; 09-30-2008 at 09:46 AM.. Reason: silly spelling errors - hope I got them all
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