To each his own: Your personal neuropathy experience

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CLD
Posts: 206
Joined: Fri Mar 27, 2015 7:16 pm

To each his own: Your personal neuropathy experience

Postby CLD » Wed Apr 27, 2016 2:32 pm

Long before DH dx with cancer, I was dx with peripheral neuropathy in my feet. I was tested for many conditions, including MS, but alas, there is no known cause of my neuropathy. To me, it feels like my feet are under water and I can tell if the water is burning hot or freezing cold. It is usually worse at night and worse on my left foot. It is worse if I don't wear shoes or slippers inside. For DH, his neuropathy causes numbness in the tips of his fingers and feet and he constantly complains of a heaviness in his legs. Gapapetin did little so he stopped taking it because he did feel like it made him unsteady on his feet. It is interesting to me that we both have neuropathy but with such different symptoms. I'm curious to know, what are your neuropathy symptoms???
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

PainInTheAss
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Re: To each his own: Your personal neuropathy experience

Postby PainInTheAss » Thu Apr 28, 2016 4:40 am

My 27yo daughter also has neuropathy in her hands and feet for an unknown reason. At one point she could not walk. They discovered that her thyroid was very low. IV thyroid medicine improved her condition overnight, but that was 2.5 years ago (when I was having surgery) and her neuropathy has improved but she still has it (she spent a month in hospital rehab regaining her strength so she could walk). She still has not gotten a conclusive diagnosis of her many and varied symptoms which include joint tissue damage. They have tossed around MS, Lupus, and other scary diseases, but nothing seems to fit.

I just feel numb like your husband. It's improved somewhat, most noticeably in my hands. It really doesn't bother me except that I'm afraid I would lose my balance in high heels. I still haven't tried to wear them. Other than that, I usually don't notice it. But I do take my time going up and down stairs. I have fallen on them a couple of times just from not being sure-footed.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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WriterGirl1969
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Location: Central NY

Re: To each his own: Your personal neuropathy experience

Postby WriterGirl1969 » Thu Apr 28, 2016 9:26 am

CLD wrote:Long before DH dx with cancer, I was dx with peripheral neuropathy in my feet. I was tested for many conditions, including MS, but alas, there is no known cause of my neuropathy. To me, it feels like my feet are under water and I can tell if the water is burning hot or freezing cold. It is usually worse at night and worse on my left foot. It is worse if I don't wear shoes or slippers inside. For DH, his neuropathy causes numbness in the tips of his fingers and feet and he constantly complains of a heaviness in his legs. Gapapetin did little so he stopped taking it because he did feel like it made him unsteady on his feet. It is interesting to me that we both have neuropathy but with such different symptoms. I'm curious to know, what are your neuropathy symptoms???


So I'm in a mixed boat here, but definitely wanted to chime in. I have had peripheral neuropathy in both feet (bilateral) for about 5 years now (long before my CC diagnosis). Like you, they cannot specify a cause yet. I am not diabetic. At first, my GP tried B-12 injections. They did nothing. The numbness, which had started on the bottoms of the stems of my toes and on the front of the pad of my foot, continued to deepen and creep farther. When I say deepen, I mean feel more numb. At first, the surface was numb but I could still feel inside, if that makes sense. It's getting more and more thoroughly numb as the years go on. In addition to being numb, my feet are hypersensitive. So if I lay a blanket over my feet at night and it brushes my toenails, it feels like someone is ripping my toenail right off, or scraping it along cement. Bottoms of feet feel like I've stamped them on wet cement - numb, but painful. Like you said, it's worse if I don't wear shoes or slippers inside. I used to *love* going barefoot, now I can't at all. Pain gets so bad it makes me cry sometimes, and this from someone who had colon resection surgery and didn't need any pain meds.

My personal suspicion on a cause is based on a visit to a Podiatrist, who took x-rays of my feet and found nothing wrong. She said she would put money on the fact that this stems from my back, and asked me when it started. When? Well just after my son was born. WHAM! Memory immediately pops up of the fact that when receiving my epidural during the birth of my son, the anesthesiologist had trouble. I remember him hitting something that immediately put a metallic taste in my mouth, and then I felt a shock down my left side. He tried 3 or 4 times before getting it in. When we went home, I looked this up on the internet. Low and behold there are TONS of similar stories of damaged nerves from botched epidurals. I went to an orthopedic specialist who did an MRI, but refused to use contrast (this is the only way to see a damaged vs. pinched nerve) because he "just doesn't think that's it." If I could afford to do it on my own, I would, just to prove it one way or the other once and for all.

This kind of neuropathy seems different from the medicine induced type, as I do not have the pins and needles sensations at all. I do get LOTS of toe and foot cramps all the time. Seems to go along with it. I tried the Gabapentin also, but it didn't do squat. Plus, having a father who is an epileptic (neuropathy meds are also used for epilepsy), I know what those types of meds can do to you. Example, your husband's unsteadiness. My dad has a LOT of balance issues from meds.

Out of curiosity, which meds caused the neuropathy for your husband?
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

sadysue
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Location: Charleston, TN

Re: To each his own: Your personal neuropathy experience

Postby sadysue » Thu Apr 28, 2016 10:40 am

I have numbness in my hands and feet. Cold will make it worse. I feel like the bottoms of my feet are spongy (I don't know how else to describe it) most of the time and I feel good when wearing shoes - as soon as I get up in the AM flip flops go on my feet - I never ever go barefoot. Something weird happens when I shave my legs too. When I shave my shins, I get pins and needles and a tingling sensation in my feet! LOL Go figure!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

Lund5505
Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: To each his own: Your personal neuropathy experience

Postby Lund5505 » Thu Apr 28, 2016 11:37 am

My symptoms vary as the day goes on. In the morning my feet feel numb and tingling particularly at the base of the toes. When I walk it feels like I am walking over gravel. As the day continues it creeps up farther on my legs and stops at just above my knees. By evening it is either a burning pain like someone is putting a curling iron on the bottom of my feet or freezing pain as if I have been standing in a snow bank barefooted for a couple of hours. During the night it is more of a burning stabbing pain and my husband gets up several times to rearrange my legs as i tend to lay on my back with one leg crossed to hold my sore feet. I'm sure it looks goofy. But if I do this I will throw out my SI joint again and I was in extreme pain from that last summer. I have tried everything gabapentin, lyrica, amitryptalin, essential oils, acupuncture all with no luck. Even the fentanyl patch doesn't help. I am a chemo for lifer and so wish they had stopped the oxy before this happened. I will never understand why they intentionally inflicted this on me when they knew I was incurable anyway. Yeah I'm a little bitter. Sorry.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

booklady
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Re: To each his own: Your personal neuropathy experience

Postby booklady » Sat Apr 30, 2016 8:58 pm

I was diagnosed with Duke's C colo-rectal cancer in 1995, and had surgery, radiation and most of a year's course of 5FU and Levamisol...stopped early because of "tingly toes" and balance issues. My doctor said those symptoms should go away once we stopped the chemo, and the balance did get OK. The tingly toes got better, but didn't go away...didn't cause me any problems for years. My PCP tested me for vitamin B12 deficiency, but was fine.

In 2005 I fell and broke left ankle and right elbow (I now think the nueropathy was affecting both balance and sensation). Some time around 2007 I noticed that the pins and needles sensation had crept into my feet and ankles, and gradually continued upward. I could not rely on sensation to be accurate...I couldn't tell if my feet were freezing cold, or burning hot unless I touched them with my hand...and my feet began to feel as if I were wearing thick socks all the time. This progressed to feeling like my feet and legs were wrapped in 4 or 5 layers of Ace bandages...and while I could tell if something touched my feet or legs firmly, if something brushed against them I might or might not know it. I could feel pain, but not accurately.

We had moved and I had a new PCP so I mentioned it to her, and again got blood work up and again everything was fine. She recommended that I take vitamin B12 supplement anyway, which did no good at all. In 2013 I saw a neurologist when the numbness had reached my knees...I no longer had routine pins and needles sensations...and after tests he told me I had no vibration sense, no deep tendon reflexes in knees or ankles, and that it was unlikely that I would ever have a return of normal sensation. I could not reliably tell where I was placing my feet, and without shoes, the bottoms of both feet felt rounded, and I found myself rocking backward unintentionally. I can not wear slip-on or backless shoes...I can't keep them on my feet and I was petrified of falling again. I had PT to strengthen my legs, which was difficult, but helpful.

We have now moved to share a home with our daughter and her husband, and I rely on a rollator walker with a seat because my balance and endurance are much worse now. The "thick bandage" sensation has a new addition...tight bands around my feet and calves. And the abnormal sensations have made it to about 2 inches above my knees now. I just wonder how far it will go...

I didn't have much nerve pain that was troublesome until 2014 when my feet touching the sheet was excruciating and my legs would sometimes jump and jerk beyond my control...like restless legs. I started taking Gabapentin at that time, and it was very helpful. My doctor wanted me to take it night and day, but I couldn't tolerate it in the daytime...stayed too groggy and my vision was blurry, so I took the whole dose at bedtime. I have not required a very large dose so far, but currently I am finding that some nights the pain and/or restlessness of legs and feet is not relieved by the Gabapentin. I added a third capsule on my own a night or so ago (total dose of 900 mg) and it was magic...legs calmed right down. BUT next morning I could not get waked up enough to get out of bed until nearly 10 am, and felt dopey/vision impaired etc. until early afternoon. So I really don't want to do that unless I absolutely have to!

My feet also get icy cold if I have no shoes on, and I can only wear shoes comfortably for a short time before the top of my feet starts sending out nerve pain messages of "get me OUT of here!". I hate to be barefoot for fear of stepping on something and not feeling it and getting an infection going. I have been looking online today for supportive slippers with sheepskin lining and velcro closure to wear in the house but have not found exactly what I am looking for yet.

Has anyone else had trouble with your feet and lower legs just above ankles getting bright red and actually hot to the touch? This happens randomly, mostly in the evening, and when I elevate my feet the redness goes away and they cool off! Very wierd! I asked my PCP and she had no clue what might cause that. I should add that my new neurologist here had done nerve conduction tests and also ultrasound for circulation. Nerve conduction confirmed peripheral neuropathy. No surprise to me! Circulation was fine. The hot red feet is not a regular occurance, and in fact I haven't noticed it in a month or so.

All of my PCPs and both neurologists have been initially reluctant to conclude that my peripheral neuropathy was caused by my chemotherapy because they said that neither of those medications, 5FU nor Levamisol, usually caused neuropathy...however everything else has been ruled out, and I am not diabetic and have no family history of neurological disease. I HATE this...keeps me from doing most of what I want to do these days...fatigue and exhaustion after just getting a load of laundry into the washing machine! Or taking a shower, sitting on a bath bench with a hand held shower...have to rest up after showering before I can put on real clothes...reminds me of immediately after my surgery and recuperation, trying to get ready to go for radiation...I really expected that once all that was behind me it would be GONE FOREVER! Even so, I am a 20 year survivor...21 years now I guess, and grateful for that!

Carolinabluetec
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Re: To each his own: Your personal neuropathy experience

Postby Carolinabluetec » Sun May 01, 2016 12:37 pm

Before 8 rounds of Xeloda as adjuvant therapy for Stage 2 colon cancer, I had very minor neuropathy in my toes during very cold weather and Renaud's syndrome in two fingers. During chemo I developed HFS that required a dose reduction to control. About a month after chemo, I stared to develop numbness in areas of my feet and hands which eventually changed to stabbing and/or burning primarily in my feet. I am taking 1500 mg of Gabapentin per day and I also use a compounded cream of Baclofen 5% / Amitriptyline HCL 2% / Ketamine HCL 5% in Lipoderm which gives me relief for several hours at a time. While I am typing this I have my left foot in the Anodyne Therapy unit that I purchased. I really don't know if I will ever get full relief from the pain. I have gotten pretty good at blocking out the pain and moving on with yard work, golf, home repair or whatever. It is taking a toll on my psyche however.
03/14 DX Adenocarcinoma Sigmoid Polyp
05/14 Da Vinci Sigmoid Colectomy
06/14 T3N0Mx, staged IIa
07/14 Xeloda 3000 mg/day 14 on/7 off 8 rounds
12/14 Finished Chemo
01/15 CT NED :D
07/15 Colonoscopy NED :D
08/15 CT NED :D
03/16 CT NED 8)


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