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Topic: Vent about Permanent Neuropathy

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Jan 16, 2011 09:47AM

ktym wrote:

I'm interested in hearing from those with long term this isn't going to get better neuropathy.  Too often when I bring this up I'm told...It will get better...it is temporary...mine got better....take glutamine it works.....have you tried gabapentin....lyrica....    I know there are many here going through worse, including a dear family member right now, however, some days I just can't take it.  I'm tired of discarding the ear rings I want to wear every morning because my fingers don't work well enough to put them in.  I'm tired of dropping things all the time in the kitchen.  I'm tired of how different my career is now due to persistent lymphedema and neuropathy.  I'm tired of hurting every morning and hurting worse every night.   I'm tired of not being able to go on long walks with DH in nice weather because my feet hurt too much.  Please don't tell me it will get better.  I've accepted it won't, please don't deny my reality.  I just wanted a place to vent with others who know what this is like. 

Oh yes, add in, I'm tired of sleeping with my feet wrapped up in a heating pad because the cold triggers the pain. (Which of course makes the hot flashes worse)

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Apr 12, 2019 05:52AM MCBaker wrote:

It is so expensive, I doubt my insurance would approve it. I am on 2100 mg, and the sheer volume of it in my pillkeeper is irritating. I have my kindle, fitbit, and computer set with alarms, so rarely miss a dosage, unless I am out and about. Even though I carry my 2:00 pills with me. I may ask my PCP, though.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Apr 12, 2019 08:22AM Yiyagf wrote:

LuvMyFam - does Horizant make you drowsy?. I have been on Gabapentin for a couple of years, initially to treat migraines, then neurological damage from feet surgery and now to help with early menopause side effects and chemo neuropathies, but I can only tolerate a low dose and at night time because it knocks me down

Dx 10/31/2018, IDC, Right, 2cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 11/20/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/4/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 12, 2019 10:06AM exercise_guru wrote:

Just a little update. I started a plant based diet but at close to the same time I also started acupuncture for my feet at the cancer center. I have had tremendous improvement. Now my feet do not wake me up at night and I get a bit of a buzz in them and some occasional numbness but hardly noticeable. My hand are improving as well but not to the same degree. Still I am very impressed with the acupuncture it might be worth looking into if you have this in your area.

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Apr 12, 2019 12:17PM - edited Apr 12, 2019 12:18PM by LuvMyFam

Guru, that is great. You are blessed to have a good acupuncture practitioner around!

YiY-no, it does not make me drowsy. Maybe because of the time release? It is expensive, my portion is $150/month! But, it is so worth it! My doctor made a deal with a local pharmacy to get it at this price

MC-My insurance covers it... my portion would be $1600/month

5/2013 - Added lymphedema to the mix..... Dx 3/20/2012, IDC, 2cm, Stage IIIC, Grade 2, 16/28 nodes, ER+/PR+, HER2- Dx 3/20/2012, IDC, Left, 3cm, Stage IIIC, Grade 3, ER-/PR-, HER2+ (FISH) Targeted Therapy 7/13/2012 Herceptin (trastuzumab) Chemotherapy 7/13/2012 Taxol (paclitaxel) Surgery 1/10/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 2/28/2016, IDC, Left, 3cm, Stage IV, metastasized to liver, 16/28 nodes, ER+/PR+, HER2- Hormonal Therapy 3/11/2016 Zoladex (goserelin) Hormonal Therapy 3/19/2016 Femara (letrozole)
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Apr 15, 2019 12:15AM sweetp6217 wrote:

I think that I'm new to this group/thread. My chemo ended last July, but the neuropathy began soon after the first infusions. I went to some specialists, but I'm currently untreated. I did go through some PT last year, but I wan't really receiving any benefit from it for the neuropathy. I have numbness in both feet, some tingling and the rare pin/stab pain in a toe, now and then. I also get foot cramps which sometimes happens when I'm driving.

As for diabetes, I'm borderline and the bloodwork is odd. I get good readings when I eat (test 2 hours after meal), but after fasting, not so good. So I'm trying to eat smaller, more frequent meals to not have to fast so long.

Going down stairs can be a little tricky too. I don't feel confident going down without stopping at each step. the knees feel a little off and uncomfortable. Is that possible with neuropathy, or could it be something else? The hands also cramp up a bit if I'm typing a lot at work or hand writing, especially. And now for more fun, both hips are feeling iffy, whereas only the left one was a problem before.

I'm thinking about buying a stationary bike or exerciser. Bad idea? While in physical therapy, it didn't seem to hurt while using it. Any thoughts would be fantastic. Thank you.

Dx 7/7/2017, IDC, Left, 2cm, Stage IIB, Grade 3, 1/2 nodes, HER2+ (FISH) Targeted Therapy 7/27/2017 Herceptin (trastuzumab) Chemotherapy 7/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy 2/21/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/14/2018 Femara (letrozole)
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Apr 15, 2019 07:00AM MCBaker wrote:

I have a free gym membership through my insurance. They taught me how to use three-pound weights, so I do that at home. At the gym, I use the treadmill. I hang onto the rails, otherwise I frequently lose my balance. I can even get some aerobic at 2.5 mph.


Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Apr 15, 2019 09:59AM MinusTwo wrote:

sweetpea - There really is no 'treatment' for neuropathy other than treating pain if you have that. PT is useful in learning how to compensate for lack of feeling &/or balance. My doc has me on magnesium for foot & leg cramps - 250 mg twice a day. Like McBaker - I go to a local gym. I walk the treadmill & ride a stationary bike, but mostly attend Silver Sneaker's classes twice a week. Exercise is usually good but check with your doc.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 15, 2019 10:38AM CBK wrote:

sweet pea

I think a stationary bike could be great since you won’t have to worry about balance throwing you off so much.

I did do acupuncture early on when I was painful and it was helpful. But a lot of it I think is just time as you keep plugging along with exercise and good diet. I switched to an all plant based diet recently too and feel much better.

I went to a brilliant and experienced PT for my breast reconstruction, he told me PT wasn’t going to offer me any added benefit. I’m pretty lucky because my pain is gone. I just get some heaviness in my feet and light tingling in my fingers. I’m sixteen months out of chemo.

According to my MO it could take years to go away completely. I’m glad I stopped dropping my cellphone an I stopped tripping up the stairs.

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/10/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/24/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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Apr 15, 2019 11:27AM HikingLady wrote:

RE: exercise

I like my deep-water aerobic exercise routine, vertically in the deep end, head out of water. Walking, x-country ski moves, all upper body and lower body muscles can be worked. I use ankle cuffs (the necessary vertical stabilizing works my core) + foam barbells, and I go through every muscle group, and also get aerobic work if I speed it up. I have some knee and hip arthritis, and I had a foot rebuilding (5 fusions) due to mid foot arthritis one year ago. Age 61. Therefore, I’m trying to work out without my treadmill, and avoid walking on concrete sidewalks. I find that the stronger my muscles are, the better my joints tolerate the AI stiffness.

My neuropathy is in my fingers and hands: no pain, but loss of sensation. Tingling. I am taking MO-suggested amino acid supplements. Trying to stay hopeful that maybe my neuropathy will resolve. Grateful that it’s not pain, and also that I can walk okay—I had numb feet during chemo, but not after. Glad to have found this thread, and I’ll keep reading it

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/8/2003 Lumpectomy Radiation Therapy 6/9/2003 3DCRT: Breast Hormonal Therapy 8/7/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 15, 2019 12:45PM MinusTwo wrote:

Oh, I totally forgot about water aerobics. Thanks Hiking Lady. That is the best possible exercise. I go three times a week in the summer when our community outdoor pool opens. I do wear 'water shoes' so I don't hurt the toes I can't feel.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 15, 2019 01:33PM HikingLady wrote:

My nearby community pool has a couple of deep water lanes reserved every morning for deep water exercise. I’m in 6-8 foot water depth, and never touch the bottom in this type of exercise, and there are also people who do the water exercise where they’re standing in 3-4’ depth in another part of the pool. My knees and hips and bad foot really like the deep not-touching non-impact exercise. Unfortunately, it’s not as good for weight-bearing bone-density building, but there is some bone benefit because of muscle strengthening (which puts a ‘load’ on bones and stronger muscles can help with bone density.). After BMX and reconstruction, it’s taken awhile to work up to good upper body strength for actual swimming, and I’m finally working back to that. I like doing deep-water exercise because I can tailor my workout to the muscles that need to be built up. I treat it like a weight-room work-out, except it’s also like being weightless in outer space. A really pleasant feeling! Daily exercise keeps me feeling okay, for sure.

I play classical piano in a trio with a violinist and cellist, as one of my hobbies. Neuropathy and numb fingers is not my favorite post-cancer-treatment souvenir. It’s not impossible to play, but I feel kind of strangely disconnected to the keys, since I have so much fingertip numbness. WAAAHH, sad about this, and glad to have found a safe forum for this particular venting!

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/8/2003 Lumpectomy Radiation Therapy 6/9/2003 3DCRT: Breast Hormonal Therapy 8/7/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 15, 2019 02:33PM rockymountaingirl wrote:

Sweetpea, everything that you described can be caused, directly or indirectly, by neuropathy. I have it, too, caused by chemo, and I've had it before, about 15 years ago. (The last time the cause was unknown, so the doctor just called it "idiopathic," which is doctor-speak for "haven't got a clue.") Like you, I have some numbness and tingling in both feet, and I have some in my hands as well. I've been able to get rid of the cane that I had to use for a while, but I'm still clumsy and slow, and going downstairs is still a bit of a challenge. I'm not having cramping this time around, but I did when I had neuropathy before, so I know what you are talking about. As for your knees feeling a little "off and uncomfortable" and your hips feeling "iffy," I don't think those things are likely to be a direct result of your neuropathy, but people with neuropathy often move differently than they used to in an effort to maintain their balance and compensate for weakness and other effects of the neuropathy. If that's true of you, you may be putting different stresses on your bones and muscles than you used to, and that in turn could explain why your knees and hips are bothering you. The only way to know for sure what's going on is to consult a doctor or physical therapist who can watch you walking and coming down stairs and so on, and then tell you if you are doing something that could be stressing your knees and hips. For whatever it's worth, I was told to focus on moving as normally as possible at all times, which meant, for example, that I had to pay attention to keeping my feet a normal distance apart as I walked rather than spreading them farther apart in order to make balance easier. At first, I found that hard to do, but I'm much better at it now.

As for exercise, it is sadly true that it can't heal nerve damage. But what it can do is help you function better with whatever degree of nerve damage you have. Any exercise that you enjoy will help, so if you liked the stationary bike that you used while you were in physical therapy, I think getting one of your own would be a great idea. I have one and I love it. I have also found it helpful just to practice whatever movement is giving me trouble. For example, I try to practice stepping up and stepping down a few minutes every day, and that has helped me move more confidently coming down stairs and stepping off curbs. (Of course, stepping up and immediately stepping back down on the stairs looks a little weird, so that's one exercise I do in the privacy of my own home. That way only my cat thinks I've lost my mind.)

On the whole, it sounds like you are doing the right things to minimize the damage caused by neuropathy, and you are asking the right questions. If you continue to have cramping, you might ask your doctor -- if you haven't already -- for a recommendation for something to help with that. And, as I suggested above, if your knees and hips continue to bother you, it might be a good idea to have someone watch you move to see if you might be unintentionally moving in a way that puts new stresses on them.

Finally, one useful thing that I learned the last time that I had neuropathy is that nerves do heal, assuming you are not continuously annoying them, but it takes a L-O-N-G time. Nerves heal so slowly that you will find it difficult to detect any progress if you are comparing today to yesterday or this week to last week. Try instead to think about how you were doing a couple of months ago. The chances are you are doing a little bit better now, and a couple of months from now you will be doing a little bit better still. And one day you may notice your feet are not numb anymore, and you haven't had a cramp for a while, and something that you can't do now, or can't do well, is pretty easy. That day might not come this year, but if you can avoid new damage to the nerves, so that they have a chance to heal, you should get there eventually.

Dx 3/8/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Dx 4/24/2018, DCIS, Left, Stage 0 Surgery 4/24/2018 Lumpectomy: Left Surgery 5/15/2018 Lumpectomy: Left Chemotherapy 6/9/2018 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 9/26/2018 Whole-breast: Breast
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Apr 15, 2019 09:55PM MinusTwo wrote:

RockyMountain - I don't want to be negative, but my neurologist and the consult with a second one both said the same thing. (And I'm at a premier medical center) Your neuropathy may get better over a couple of years (2 or 3) BUT better means better than where you are after treatment. It does NOT mean you will ever be back to where you started. Better but not likely ever 100% healed. Some damaged nerves will never regenerate. I'm 5 years out and can certainly attest to that. I've tried to look for realistic goals. When might I be able to take a hike on a defined forest trail again - not when can I scamper forward on a sailboat underway to hoist the sails.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 15, 2019 11:43PM exercise_guru wrote:

I have found that acupuncture has significantly helped with the neuropathy in my feet. It took weekly visits at the cancer center for 4 months but vast vast improvement just a little tingle left occasionally.

My hands have been through a lot. Acupuncture has significantly helped but both of my bicipital tendons in my arms and my shoulder complex are all messed up. I went to someone who does myofascial release also trained Iymphodemia. Now three months later i am doing much much better.

I also continue on a plant based low fat diet that I has helped


Last I do B12 shots every 10 days and keeping blood sugar under control. Chemo pushed my blood sugars Into prediabeties. Alpha lipid acid and gamma linolenic ice acid are also recomended

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Apr 15, 2019 11:44PM - edited Apr 15, 2019 11:44PM by exercise_guru

This Post was deleted by exercise_guru.
Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Apr 16, 2019 02:18AM Lanne2389 wrote:

Hi Ladies,

Everyone has great ideas on how to cope with this insidious side effect. My neuropathy is in my feet - I finished chemo almost 2 years ago and have seen about a 30% improvement. Acupuncture worked well. Gabapentin was good, but I switched to Cymbalta - which treats anxiety AND neuropathy, and doesn't make me drowsy.

My reconstruction surgery seemed to cause a setback with my feet - the “pillows underneath your toes" feeling came back and the foot pain started waking me up at night again. But 8 months later I'm about back to where I was before recon, thankfully. That surgery even brought out neuropathy in my fingertips, almost the first thing I noticed when I woke up. But that's almost gone now. It was an unexpectedly long surgery so maybe all that anesthesia had something to do with it.

Well fitting shoes determine how long I can comfortably stay on my feet - so now my shoes need to have good arch support, lots of toe room, and v v cushy insoles. Had to let go of some favorites bcs they didn't meet the new criteria - but it makes all the difference.

Best wishes to everyone~

Lanne


Lanne Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/2/2017 AC + T (Taxol) Surgery 6/13/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/7/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/14/2017 Femara (letrozole) Surgery 7/16/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Apr 16, 2019 05:12AM rockymountaingirl wrote:

Minus Two, thank you for your comments on my post. You made some good points, and I think that my previous remarks need some clarification. To begin with, I certainly did not intend to suggest that everyone with nerve damage can count on 100% recovery. I am well aware that many here have permanent pain and disability caused by neuropathy, and I am also aware that the treatments currently available to them are less than satisfactory. Those who are in that situation have my heartfelt sympathy, and i very much hope that better treatments for neuropathy will soon be discovered. I also have no reason to doubt that even neuropathy that is less severe can result in permanent physical harm because some nerves are too severely damaged to recover. However, when I had my previous bout of neuropathy I was told that (1) nerves that have not been too severely damaged can recover if the cause of the damage is identified and corrected, or if it stops operating spontaneously, and (2) if the nerves recover sufficiently, the symptoms of neuropathy will go away. That's what happened to me. The numbness, the cramps, and the other symptoms of neuropathy very gradually lessened, and one day, maybe two and half or three years after I first started having trouble, it occurred to me that I didn't have numbness any more, and I hadn't had a cramp for a while, and I was feeling pretty normal generally. Now I have neuropathy again, but the cause -- chemotherapy -- has been removed, and the neuropathy is gradually lessening, just as it did years ago. I am optimistic enough to look forward to the same final result: that one day, maybe two or three (or more?) years from now, I'll notice that I don't have numbness any more, and I'm feeling pretty normal. Meanwhile, I'll keep working on my exercises, because that helps me overcome the problems with strength, balance, and coordination that seem to go hand-in-hand with neuropathy. So my (revised) message is this: if you have severe neuropathy, my experience may not be relevant to you. But, if you have mild-to-moderate neuropathy, like me, and if the cause of your neuropathy has been corrected or removed, then your nerves may recover sufficiently to eliminate your symptoms. And, exercise can't heal damaged nerves, but it can help you to overcome some of the problems caused by neuropathy, such as poor balance and coordination. I hope this helps!

Dx 3/8/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Dx 4/24/2018, DCIS, Left, Stage 0 Surgery 4/24/2018 Lumpectomy: Left Surgery 5/15/2018 Lumpectomy: Left Chemotherapy 6/9/2018 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 9/26/2018 Whole-breast: Breast
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Apr 17, 2019 10:01AM Lezza13 wrote:

Nice to have found this thread . I have a few numb toes and foot cramps due to neuropathy after cheno.. I do ignore it most of the time. I appreciate the suggestions for taking magnesium for the foot cramps. Might even help with the hot flashes from Tamoxifen. I wish my MO had mentioned amino acids during chemo to maybe avoid these numb toes. I will try them now to see if they help I do ride an exercise bike and walk and just ignore the symptoms.

I am most irritated by those "fake" rocks in your shoes when you are walking. Makes you think you are crazy sometimes. Usually it goes away after awhile.

Thanks for letting me vent since I have put up with this for almost 7 years now. I like hearing all of the suggestions in this thread.

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/26/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/15/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 17, 2019 10:45AM maryna8 wrote:

hey minus two and all, I still have neuropathy, tingling comes and goes. I used to walk for miles, now can walk but legs get weird weak feeling and i have to rest before going again. Doctor who tested my nerves told me when nerves are badly damaged they just don't respond well to muscle's demands. Knees are very painful because I went to trainer/PT to build myself up and he had me do a movement I wasn't ready for. Pain ever since. One doc said water exercises, another gives me shots which sometimes helps, sometimes not. Nothing helps the weakness.

That's my rant!

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 17, 2019 11:07AM maryna8 wrote:

sorry I got that backward. I should have said: I make the demand for movement, the nerves try to signal the muscles. If nerves are damaged this doesn t work well. This is how it was explained to me.

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 21, 2019 11:27AM NotBrokenJustBent wrote:

Yes Mary, that is my main complaint. While the rocks in shoes, tingling and numbness are an annoyance, it is the terrible weakness in my legs that is life changing. I know I need to be more active and get some exercise but even walking any distance is a challenge. Since BC almost 6 years ago everything has fallen apart and one thing has lead to 6 others. So discouraging.

Hey Minus, I see I owe you a PM. Soon. ;)

Happy Easter to those who celebrate.

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Apr 22, 2019 07:51PM MinusTwo wrote:

NotBroken - miss you girl. Glad to see you're still here. Sorry to hear about the weakness in your legs.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 22, 2019 09:08PM MCBaker wrote:

I have worked my way up to one mile at 2 MPH on the treadmill. After my weight workout and floor exercises, I can get another third of a mile. I no longer hang on to the rails of the treadmill-- reading a paper book has helped that. I am also working on balance and ankle strength with a half-sphere thingy with one flat side to stand on. My feet are generally uncomfortable. I am going to try hot Epsom water soaks, although some misgivings about that because of seven toenails that do not look very good.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Apr 23, 2019 08:33AM Lezza13 wrote:

I don't think I really noticed the weakness untill I read this thread. I could not figure why I was so tired after walking and now I know. Thanks ladies. MCBaker, I would slowly build up your time on the treadmill. As far as the toes, I have toenails that look odd, but then they have always been that way for 6 years now. Epson salt spsound like a great idea. Would be very soothing. NotBroken, I would build up your endurance as well. That's what I do. I can walk almost 2 miles if I want to. I did more than that at Disneyworld during the day but I had motivation. Keep moving ladies.

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/26/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/15/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 23, 2019 09:22AM MCBaker wrote:

My right ankle is weak from neuropathy before diagnosis, and I have been wearing an AFO summertime and for gym (boots in the winter). I have expensive arch supports. Yesterday I went to Walmart to find some workout shoes, but found none that would work with arch support. So I walked over to the strip mall and busted my budget with another pair of New Balance shoes. (They have a removable insole) So comfortable. I tried standing on my toes with the foot with the weak ankle, and had some success for a while-- however, not without touching something. Definitely not ballet material.

I think I could walk to the gym now, but if I have trouble completing the walk, I would be stranded for a while. Just not ready, the treadmill is security. I find that I am sore when I go to bed at night, but generally recovered when I get up in the morning. If I don't have a good amount of recovery in the morning, I skip gym for that day. Of course, there are days when I am too busy with other things.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Apr 24, 2019 09:00AM Lezza13 wrote:

MCBaker, I use New Balance shoes and I do like them. I only wear that brand. I did buy an over the counter brace for my ankle which was not too pricey. Perhaps you might want to visit a podiatrist and if you can afford it to get molded inserts for your feet. Mine have been a blessing.

I do think driving to the gym and then getting on the treadmill might be the best plan. Why waste the energy getting there. There are days everyone wants to skip the gym which is fine. Just keep walking even in the neighborhood if you can like I do for just 15 minutes at a time most days/

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/26/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/15/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 24, 2019 09:32AM MCBaker wrote:

I got one for my left foot, which has that arthritic bump on the top. The brace has an arch support built in, so I have a top quality ready-made; wondering if the brace could be trimmed so that it functions as an arch support. But wouldn't want to destroy it as a brace until I know for sure that the ankle won't relapse. With the removable insole NB are made for people who need orthotics of one kind or another.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Apr 24, 2019 10:35AM LuvMyFam wrote:

MC - have you tried Hoka shoes? They saved my life. I could hardly walk down the block without being in excruciating pain, but now I can walk and stand in them. They are expensive, but so worth it to be able to walk

5/2013 - Added lymphedema to the mix..... Dx 3/20/2012, IDC, 2cm, Stage IIIC, Grade 2, 16/28 nodes, ER+/PR+, HER2- Dx 3/20/2012, IDC, Left, 3cm, Stage IIIC, Grade 3, ER-/PR-, HER2+ (FISH) Targeted Therapy 7/13/2012 Herceptin (trastuzumab) Chemotherapy 7/13/2012 Taxol (paclitaxel) Surgery 1/10/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 2/28/2016, IDC, Left, 3cm, Stage IV, metastasized to liver, 16/28 nodes, ER+/PR+, HER2- Hormonal Therapy 3/11/2016 Zoladex (goserelin) Hormonal Therapy 3/19/2016 Femara (letrozole)
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Apr 24, 2019 11:01AM MinusTwo wrote:

Luv - HOKA is the brand my podiatrist recommended. Yes, they are expensive but like you - it's all I wear now. And I mean that literally - to work, to the store, to the gym & to symphony concerts. She did say some New Balance shoes were good if they had an extra tall & wide toe box.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 24, 2019 12:44PM MCBaker wrote:

The tall and wide toe box on NB comes from the removable insole. But might not be tall and wide enough for some people.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant

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