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Peripheral Neuropathy

cherseg
Posts: 30
Joined: Jul 2007

After 19 weeks of treatment with virtually no side effects, other than losing his hair, my husband finished his chemo the end of November. Last week he began to have numbness in his fingers and toes. Now it is moving into his entire foot. The doctor said to take extra vitamin B, vitamin e (2000 iu) and vitamin d (800 iu) daily. Has anyone had similar side effects and did they go away or get worse?

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Racht
Posts: 40
Joined: Nov 2005

Yes I had something similar. I felt like I had 3rd degree burns down my arms and around my midsection...6 months after finishing radiation and 7 months after finishing chemo...my drs were utterly baffled.
it was very painful. i would invest in a good juicer. go with the masticating (chewing) type versus the spinning blade (centrifugal) a good one will cost you around 250 but it will be well worth it. in addition I am on fish oil, a probiotic (to replace the good flora destroyed thanks to chemo) and a fast dissolving multivitamin. I recommend the multi vitamin as opposed to a seperate synthetic blend of the isolated b, e and d vitamins. fish oil is essential, as is the probiotic. Also, your husband and anyone wanting to experience whole health should adopt a whole foods plant based diet (for more on this read Eat to Live by Dr. Joel Furhman and The China Study by Dr. Campbell.
These things WILL help if you implement them. I've done everything I recommended to you just now, in addition to receiving regular adjustments from a wellness chiropractor and with time, most long term side affects of both chemo and radiation have faded or lifted completely. That is how I know. My best to you both.

tex.survivor
Posts: 5
Joined: Oct 2007

Peripheral neuropathy is a rather common side effect for some types of treatment. It can be treated (minimized or eliminated) with the use of the drug Neurontin (generic gabepentin). Although research indicates that it is effective for both chemo-induced and diabetic neuropathy, researchers have not been able to determine the exact mechanism that it works through. It was orignally used to treat epilectic seizures, but now is finding more use in neuropathic treatment. The best part is that the generic is fairly inexpensive - epsecially when compared to other cancer treatments.

Hope that this helps you.

faithwalker
Posts: 1
Joined: Mar 2009

I am a cancer survivor of 18 years. I suffered extreme burning and extreme pain from the sensory nerves in back, back of legs, bottom of feet and top of head. It started at the cancer area and began moving toward the back. This all happened gradually as it took over more and more areas. I went to all different kinds of doctors trying to stop what I could tell was a taking over more and more. But to no avail. All kinds of test and no one related it to the Chemo because it actually started several months after I completed treatments. No medication given stop the pain for even one minute day or night.

Finally, a couple of years ago when going for regular checkup on an arm that has lymphodemia, I mentioned the pain to that specific doctor and he recommended Neurotin. The first day I took it was the first day of relief in all those years. However, if I miss a dose, I can tell that nothing is going away, it is just masked with the Neurotin.

I just wanted to connect with others that may be experiencing this same situation. Does this ever go away? Is there a cure medication?

Thanks for any thoughts on this,

tiny one
Posts: 467
Joined: Jan 2009

I had neuropathy in my hands and feet during treatment. It started midway during treatment. It's completely gone in my hands and is almost gone in my feet. I have just a slight bit of numbing left. My last chemo treatment was Oct 31st of 07. Compared to others mine was very mild.

hosslady
Posts: 12
Joined: Jun 2008

Hey everyone, thanks for just sharing your stories with this frustraing part of survival. I had my last chemo in July, '08, Taxol and Carpoplatin. Mean drugs for a mean case of ovarian sate 1 and endometrial. I am cancer free, but the numbness that started during treatment is now getting into the needle=like pains I've heard diabetics patients discuss. I need to talk to my onco about this. I am on a drug similar to gabapentin (couldn't take that, I was too drunk to walk), it's another anti seziure drug, valporic acid. It must help a lot, since I've had no pain until now. (I was on it before treatment due to anxiety disorder, etc. )

Well. There is an amino acid that an RN told me about to take, called GLUTAMINE POWDER.
Take it over cereal or in juice, etc. twice a day, heaping teaspoon, for 5 days and see if it won't help the pain. I loved it. It helped me thru my chemo pains durin treatment. (Those Nulastin shots are killers!). I use it now if I have over done it and know I will hurt.
Body builders use it for that. I, too, take B complex and flaxseed oil, 2,000 mg a day, (allregic to fish oil), wal-mart carries it cheap. I take CO Q 10, and other supplements. I eat as healthy as I can on food stamps and disability. The supplements helped me so much during treatment my Dr. even noticed. I also go to a chiropractor, and support groups.

I am careful about not running around barefoot, and I wear roomy good leather shoes, and pray I will be able to still ride horses for a long long time. My fingers and feet are numby too. Also, my whole body is number. Suxs. Hey, I'm alive and greatful, but I do miss my sensation, you all understand.

Love and prayers to all,

Hosslady

mab52
Posts: 3
Joined: Feb 2008

I've had the neuropathy during and after treatment. My understanding is that some lingering neuropathy is very real and can be expected. Walking is a very good idea.

handle
Posts: 31
Joined: Feb 2006

Hi, I also have severe neuropathy from cancer treatment, I think that taxol did it to me, but I am also unlucky because I am almost 7 years out of treatment and still have it. I take B Complex daily, tried neurontin, which didn't help and now some other drug that doesn't work either. Some patients don't get neuropathy and some do, the doctors told me it will go away in about two years, it didn't . sorry for my discouraging , reply, but at least wanted to respond to your question. I am 57 years old, male also. God bless mike

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SpecialD
Posts: 3
Joined: Apr 2008

I had those effects in my feet. They said they would return to normal in 18 mos to a year and they are still numb, they have prescribed Lyrica

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tasha_111
Posts: 2041
Joined: Oct 2008

Hi, I saw my doctor today and he said Lyrica would do me wonders. Have you tried it yet, My doc says it is not covered by ontario health plans, but if it works, I would be happy to pay, Fingertips and feet are dead and I am staggering about like a raging drunk. Thanks Julia

snowinpalm7's picture
snowinpalm7
Posts: 3
Joined: Apr 2013

I have the same issues walking with regular shoes (staggering).  I tried one pair of Sketcher's "Shape-ups" and it made all the difference in the world.  They kind of 'roll' as you walk rather than act as a flat shoe does.  Walking is not a problem any more.

snowinpalm7's picture
snowinpalm7
Posts: 3
Joined: Apr 2013

I saw an ad for Lyrica for diabetic neuropathy.  Have you taken it? Does it work and are there significant side effects?  I have what I would term 'moderate' neuropathy.  It's irritating to have numb feet and hands but it comes and goes.  I'm 2 years post chemo.

khaledw
Posts: 6
Joined: Oct 2008

well, I finished my transplant back in may of 2002. Between may of 2002 and january of 2004 I was doing well and running like a horse. In January, I started losing sensation in one of my toes and it spread, over a period of one month, all the way to my chest. At that time I did all kind of tests, spinal tabs, ct scans, pet scans, and MRIs, and the only thing they saw was a swelling within the spinal cord. At the beginning they thought it was cancer, but six months later it disappeared leaving me with no sensation, numbness, tingling, stabs, shocks, and all kind of pain. Now it's been almost five years and nothing has changed and doctors couldn't tell or make diagnosis, so finally they said this is a radiation reaction. They blamed it on radiation although my radiologist said it's not. I think I have to live with it for the rest of my lifi

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I had a bone marrow transplant for NHL 18 years ago after a recurrance from 2 years before and had total body radiation as well. Have had numbness in my feet and some in my hands for years now from the treatments. I too think it's something I will have to live with for the rest of my life. I also have a decreased sense of pain, for instance if I am bitten by a mosquito I don't feel it til much later if at all then all of a sudden there is a bug bite there but I didn't feel it bite me at the time. Decreased sensitivity in the nerves too.

Of course everyone is different but I have heard this from many survivors as well as far as numbness, and all kinds of other pains coming from nerve damage from radiation/chemo. All the best to you all.

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tonnere
Posts: 1
Joined: Jun 2002

I had body radiation and radiated seed inplant for Prostate cancer during 1999. Neuropathy with numbness in legs is about the only major long term effect I have had since 1993.Gabapentin at 300mg per day helps since my pains (mostly in legs)are minor.Approx. May 2008 increased dosage to 600 mg was prescribed for me but it caused me to easily loose my balance when walking , so I am back at 300mg - Since I live in Hawaii ,I must be sure to take in plenty of fluids to avoid leg cramps at night.I also swimm daily for at least 30 minutes, after walking several miles became too risky with my leg numbness.For last years I used a cane and resently "graduated" To a foldable 3- wheel rollator` ( Brand Ever-Med) and am very happy with it.It does not make me feel too handicapped.

snowinpalm7's picture
snowinpalm7
Posts: 3
Joined: Apr 2013

I agree about the exercise, I am working out 5-6 times a week with at least one hour of aerobics 3X a week.  Seems to help to exercise.  I have to use flippers when swimming.  I left the Cali Desert to get out of the heat which seemed to make the neuropathy worse.

natashadial
Posts: 1
Joined: Mar 2009

I was diagnosed with breast cancer on August 20, 2008. I started chemotherapy October 28, 2008. After my second treatment I became so week I couldn't get out of bed for a week at a time. I also experienced mild nausia and short term memory loss. I still struggle with that. There was never anything said about the work I was having to miss due to the side effects of the chemotherapy but none of my work was being processed while I was out sick. All my work would be waiting for me when I came back to work. One day my supervisor called me into the office and said "why isn't your work done? I know you have to miss work because of the chemotherapy but when you are here you need to work really hard and get caught up." I contacted our human resources manager and went on STD. My six months STD is almost up but I am not yet 100%. I am also not yet eligible for FMLA. I am aware of my rights according to the ADA but how am I protected once I have completed treated?. How long am I covered by the ADA. Is there a loop whole my employer could use to fire me?

nanaof7
Posts: 121
Joined: Feb 2009

I have been told by my employer Of 9 1/2 yrs that if I don't come back to work after 88 working days of my disability (lung cancer )those days exclude weekends and holidays that I will be let go and can reapply at the starting wage. I feel this is kicking me when I am down..... so let me know if you find a way around it... I plan on taking a class to get a new career which I found out you are allowed to do on sdi. if that is how they will treat me .I am told this is just FMLA guidelines. but my employeer says if he does me a favor he will have to do it for everyone on disibilty (which I disagree with each case is different ) good luck.... I think there should be changes made in the system for people with life threating illness.... not just let them go... it is hard enough finding a job these days.I have also heard if you can go back for a short while then go back out if you are still not well.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I already wrote a post on this thread outlining my issues with this subject but just wanted to add that recently I have noticed these weird little 'zingy' sensations in my feet and lower leg - the left one mostly where the lymphadema is. Sometimes it feels like an insect under the skin, hard to explain - it's shortlived a sensation but when it starts it takes about an hour or so to subside. It isn't constant, comes and goes during that hour, but it certainly can be intense in sensation when it does occur. I always wonder when these new symptoms occur - will this get worse and stay at one point too? Adding to the already long list of after effects? Both my biopsies for both diagnosies were on my left side and that is where most of my pain seems to be - coincidental? who knows. I really don't want any new medications, have enough already that I will have to take for life, but if it all gets too much I will revisit that idea then. For now I put up with it, priortizing symptoms - it's a full time job, lol.

Blessings, Blueroses.

Oma_T's picture
Oma_T
Posts: 4
Joined: Mar 2012

I have been experiencing numbness, pain, and tingling from below my left hip down to my knee and in my foot. I went through radiation in May 2012 for breast cancer. Could this numbness and pain be from the radiation? I am now taking vitamin E and fish oil.. Trying to walk it out, but it's not getting better. I sure don't want another medication. I stopped tomoxifen because when I started taking it, I had severe muscle spasms in my feet and found myself unable to do normal things like finish a game of golf!  I believed that I depleted my body of potassium, because I was also taking a diuretic for high blood pressure,  so I started taking supplements prescribed by my oncologist, but have since stopped taking that. Should I start taking potassium again? Any natural remedies would be helpful. Thanks....I try to avoid going to the Dr. unless it's a scheduled check up. Next one is in April, but wondering if I should do something about this now and not wait.

Valjo06
Posts: 16
Joined: Nov 2011

I had hodgkins when I was 21. That was 33 years ago.  PN started out very slowly and periodically a few years after radiation from neck to pelvic area (that's how they treated back in 1980; lower part was for precautionary measures).  I just wanted to mention what I've gone thru these 33 years, most in the latter 15 years.  I have neuropathy from my neck to my feet.  Pinching, numbness, tingling, burning, stabbing.  I have tried almost every supplement out there, have spent thousands on products. The docs also have tried Lyrica, Neurotin, etc., you name it.  It will usually work for a week or two if I can handle it, but then it just doesn't keep working.  Back in 1996 I noticed one leg with the tingling, numbness, and it took 7 years to finally find out I had a broken vertebra that had completely broken.  So fast forward, had to have fusion, but by this time both legs were numb, pinching burning, could barely walk to mailbox.  I suggest just keep noticing if it's getting worse, just to make sure you don't have something that's pinched or slipped in back/spine.  I saw many docs over those 7 years and not one, even specialist saw on the test results that I had this broken veterbra until it completely broke and hung down on top of other vertebra.  But I still have neuropathy all over; I just deal with it, the back fusion didn't help matters, but I keep plugging along, doing yoga for the tightness in muscles, especially in legs, go for deep tissue massages, and walk alot.  I don't like taking medications, I do take supplements, but nothing completely takes it away or works that great.  Just keep going, enjoy today.  Good luck.

FLwarrior's picture
FLwarrior
Posts: 4
Joined: Apr 2013

I have chemo (taxotere) induced PN in my hands and feet.  It started 3 weeks after my last chemo tx.  That was almost 2 years ago.  I still have the pain flares. I have to wear certain shoes and NEVER go barefooted like I did pre-cancer.  I do better walking, I can not stand still for very long at all without the pain starting. I take suplements and the one that seems to help the most with the PN is Acetyl-L-Carnitine.

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