Looking for advice on dealing with neuropathy |
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K in Sugar Land 
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Joined: May 30 2011 Location: Texas Status: Offline Points: 79 |
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 Topic: Looking for advice on dealing with neuropathyPosted: Jul 25 2011 at 2:06pm |
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I developed neuropathy in my feet and my fingertips while I was on Taxol. The neuropathy in my hands has improved quite a bit in recent weeks (finished Taxol May 2011). Much of the feeling has returned. My fingernails look horrible, but they are growing out, so I can see healthy nails are on the way.
 My feet however remain quite numb and quite unchanged. My onc has recommended that I continue to walk 3 miles a day as I have been doing in recent months, to help with the neuropathy in my feet. Does anyone have any advice/do's & don't's that you can share on dealing with neuropathy? How long does it take before the feeling in your feet returns? Sometimes I feel like I am walking around with shoeboxes on my feet. : )
My onc also advised against painting my fingernails for the time being because she is concerned nail polish would dry out the nails and exacerbate the problem.
I have noticed my fingertips are very sensitive to the sun, so I drive with gloves on and I wear gloves if I am otherwise out in the sun. This seems to help protect from sun sensitivity...albeit a bit strange looking in the greater Houston area in the summer!
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Dx IDC TNBC MDA2/11 age 51 T2N0M0 Grd 3 4.8cm BRCA- vitD22 Taxol 12wk FAC once 3 wk for 12 wk Complete chemo8/11 Tumor not seen on scans Lumpsurgery 0/4 nodes9/11 pCR 30rads done11/11 NED vitD3903/12
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LauraT
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Joined: May 05 2010 Location: Georgia Status: Offline Points: 739 |
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Posted: Jul 25 2011 at 4:58pm |
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K - I'm sorry I don't have any advice about the neuropathy, but I'll be interested to see what you learn because it's probably in my future. I've had 6 doses of Taxol and so far so good, but...
I am sorry we could not connect while I was in Houston. When I head that way next, I'll be sure to let you know. Hope that the FAC is tolerable for you and kicks that cancer to the curb! Love, Laura
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DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jul 25 2011 at 6:27pm |
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K,
I had neurapathy from Taxotere and my onc suggested taking Vitamin B-6 100 mg twice a day. I really think it helped. I've also heard that Glutamine, 10 grams three times a day or 4 teaspoons three times a day for 3 - 5 days beginning the day after chemo. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Jul 25 2011 at 7:50pm |
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While doing chemo it's a good trick to have a bucket of ice cubes on hand and soak your feet and hands during treatment. It seems to work well to lessen the permanent damage.
After chemo, when your feet and hands are suffering remember to keep the nail beds clean and to wear loose shoes and socks. I ended up putting bandaids on both hands and feet to protect the nails. I found it to be a really long process to get my toes and fingers to a point where I didn't wince trying to use them but eventually the symptoms did lessen to a point where I'm ok with it.
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
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Barbi
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Joined: Jan 04 2011 Status: Offline Points: 471 |
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Posted: Jul 26 2011 at 7:19pm |
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I was told Vit B6 but also given neurontin. Something helped as most of my burning, tingling and numbness has left! Finished taxol in January and the AC in April.
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helen p
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Joined: Jul 06 2010 Location: il Status: Offline Points: 15 |
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Posted: Jul 26 2011 at 11:44pm |
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Hi K in Sugar Land,
I was given Vit B6 and neurontin. I can't say it helped. I finished my 12 rounds of taxol November 12 2010 and I still have neuropathy. The first 4 months I could hardly walk. I fell several times. I wore and still wear flat shoes. Crocs are my friend because they are wide by the toes and my toes dont touch the front of the shoe. I have noticed that it has gotten better since I started doing pilates and yoga. About 2 month now. Trust me it was not fun. I had to be by a wall so if I lost my balance I could hang on to something. I did tell the instructors and they have been awesome about modifing some posses. Keep walking....it will help it just takes a long time. Thinking of you! Helen P |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jul 27 2011 at 7:58am |
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I used B-6 while dealing with neuropathy on chemo from Taxotere. I still took it over 6 months after finishing treatment. I dealt with the symptoms for quite a while but gradually they improved.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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K in Sugar Land
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Joined: May 30 2011 Location: Texas Status: Offline Points: 79 |
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Posted: Jul 27 2011 at 10:10am |
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Thanks so much for all the feedback, I do appreciate it. I did put my hands in ice during Taxol treatments, however I still got neuropathy in my fingertips. Perhaps the neuropathy is not as bad as it could have been had I skipped the ice.
The leader of my support group has mentioned eating cherries and canteloupe as a help for neuropathy. She learned this from her cousin who is a neurosurgeon. Her cousin does not have a particular study to point to regarding this advice, but has learned from her patients that this helps some people with their neuropathy. I tried adding more tart cherry juice and canteloupe to my diet, but I did not see a benefit. It was worth a try, since there is no downside.
I have not heard of the B6 until now, so I'm going to talk to my onc, I want to give this a try.
I went to a yoga class yesterday for the first time since dx. I was humbled by how weak my leg muscles have become and the difficulties I had with the balance poses. I guess I now know where my starting point it to work on getting stronger.
I read on a diabetic website that running shoes are recommended for people dealing with neuropathy. I wear mine a lot (I bought them for running, so they are 1 size larger than my street shoe size) and I will have to say the wide, thick sole does help me deal with my balance issues and the shoes are cushiony and comfortable. The toebox has a lot of room, too, so they probably help a lot like Helen's croc's. I have elastic shoeslaces on my shoes so that I can simply slip the shoes on, no lacing/tying necessary.
Thanks again to everyone for the helpful advice. You all are so wonderful and I feel so blessed everytime I visit the forum.
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Dx IDC TNBC MDA2/11 age 51 T2N0M0 Grd 3 4.8cm BRCA- vitD22 Taxol 12wk FAC once 3 wk for 12 wk Complete chemo8/11 Tumor not seen on scans Lumpsurgery 0/4 nodes9/11 pCR 30rads done11/11 NED vitD3903/12
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Barbi
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Joined: Jan 04 2011 Status: Offline Points: 471 |
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Posted: Jul 27 2011 at 3:27pm |
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My oncologist put me on 150mg of B6. Again, I don't know if that or the neurontin or just time has helped, but it is mostly better.
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Susie
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Joined: May 12 2010 Location: Birmingham,Al Status: Offline Points: 212 |
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Posted: Jul 31 2011 at 7:15am |
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I still have neuropathy in my feet. I am 2 1/2 yrs post chemo. I removed caffeine from my diet totally a year ago. It definitely has helped. I walk 3 miles every day. however, I still have this neuropathy. I am thinking this is permanent.
I will definitely try the B6. My onc recommende Neurontin,but I just don't want to be "on " a drug all the time.
I must say that some days it is awful!Most days definitely tolerable.
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dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED |
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catmax1954
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Joined: Dec 09 2009 Location: Pulaski, TN Status: Offline Points: 25 |
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Posted: Aug 17 2011 at 9:36am |
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I developed neuropathy after Xempra 7-2009 - 12-2009. I still have it in left hand, finger and left foot. I take lyrica 100mg twice a day and it helps alot. I have read that if you have still neuropathy after one year it will not get better and that seems to be my case. I found crocs shoes with the fuzzy lining and clark sandals are the best shoes to wear. I just cannot bind my feet up in shoes anymore like a sneaker that ties. Sneakers that you slip into without a back do OK. I now have Clark sandals in all colors for summer and winter wear. Good luck.
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Aug 17 2011 at 2:06pm |
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I am five years from diagnosis and I still have some neuropathy. My hands are pretty much OK except the tip ends of my fingers. Compared to where I was, this is very tolerable.
The worst time for my feet is when I go to bed. Sometimes not too bad, but if I am really tired, my feet tingle, feel numbish, and have a strange ache. When I wake in the mornings they feel pretty much OK. My feet do not like to be bound in tight shoes of any kind. I no longer attempt to wear shoes with much of a heel. I feel more stable in flat sandals in the summer. For dress I wear flat shoes that support my feet well and have a wide toe bed. I had taxol and gemzar together. Both of those drugs can cause neuropathy, so I guess I got a double dose. Neuropathy is a strange thing, but it has improved a lot since treatment in 2006. God Bless, Lillie |
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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