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Chemo Induced Peripheral Neuropathy with restless leg syndrome

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Fellow Lymphomaniacs...

Just wondering if anyone else suffered or suffers from this?

Mine started out as a sore back, moved to sore hip, progressed to numbess in my toes and fingers and the entire body having that restless leg type syndrome. Now, I am at the point where I am getting foot cramps and my entire arms are going numb, but it is painful!?!

This all came from my last two treatments and appears to be getting much worse daily..(pretty sure it is from the vincristine).My oncologist recommeded an super B complex, which I started taking 3 weeks ago and it is only getting worse. Yesterday, she prescribed Gabapentin;  an anti-seizure drug.

Coming from a person who had no side effects during the treatment, I know I shouldn't complain; but I literally am sleeping maybe 3 hours a night...working 40 hours a week on my feet and going to school full-time as well...If you have any remedies like Dr. Frazier Crane "I am listening"

Thanks for any advice

Carie

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carrie,

  Don't know if this will help. As a matter of fact I know it won't. Right after my last R-CVP I started getting leg cramps at night after going to bed. Got the foot cramps as well. The kind of cramps that make you jump up and dance. It went on for almost 3 years. It still happens but not that often. John 

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

John,

Had one of those "dancing" moments you speak of yesterday in the car, in my right foot.....holy mary mother joseph was that an adventure... I am so excited that I have years to look forward to thisLaughing ....what a freakin rip: thank you Vincristine for getting rid of my tumors, but damn you all to heck for reminding me daily that I had those tumors and had to fight to get rid of those sneaky lil buggers...As if my port and biopsy scars aren't enough of a reminder..LOL....This is a prime example of the medicine making you feel worse than the initial problem. Crazy how it happens all at the end huh?! You just go smoking through the treatments like "that wasn't so bad, thank you sir may I have another" and then it hits you... I am thinking electric shock therapy may be my next line of defenseSurprised

P.s I love how you openly admit that your comment won't help.....it did, made me think of you jumping around waiting for those darn muscles to cease and desist or at least take the "at ease" command

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

You ever notice how when you get those cramps every cuss word known to the human race goes thru your head and sometimes out of your mouth. LOL.  John

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Carie,

Sorry to say, but you have know joined a new group, those of the chemo induced neuropathy. Mine had started with tingling in my feet, and at first thought nothing of it. Now 5 years after my last treatment the numbness has progressed to both feet with sudden balance upset issues. Also see it with my hands on occasion.

My Docs also had worked with a heavy dose B complex treatment. never did notice any difference, did not even see the energy rush they said I should have seen. Some days are better then others but the symptoms are there on a daily basis.

I know this is not the best news to hear, but I have grown use to not "sugar coating" the issues we are dealing with. Dealt with all that for the first couple of years. Try and make the best of what we have. Be areful and rest when you are able.

 

DAVE

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Dave,

I fully appreciate you not sugar coating it for me, and truthfully if it was sugar coated I hope it is a doughnut because I have been dying for one of those and some fried chicken.

The B complex appears to be doing nothing for me either, so I guess I will give this Alpha L Acid that Rocquie wrote about...sounds like a miraculous thing

I appreciate your sharing

XXXOOO

Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Carie,

I got fairly severe neuropathy early-on in my treatment, and still have it today, four years later.  Mine affected the feet, but my hands are fairly impaired also.  My feet used to always stay numb to about the knee, and it got worse when I walked much.  At the worst, I felt like I was walking on pegs.  My hands could not turn pages in  a newspaper or book, and keyboarding is still tough for me. I also still have problems with turning pages.  The symptoms are not as bad as they used to be.  I would estimate that the problem is about 40% what it was a few years ago.

You are correct: It should be from the Vincristine (a drug in CHOP). Mine was from Vinblastine (a drug in ABVD).  They are almost identical drugs, and both routinely cause neuropathy.

I was in a clinical trial after chemo for a cream treatment.  It did me no good at all, and I believe the trial was a failure, but I never heard anything official.  The cream was based on an anti-depressant drug, oddly enough.  The R.N. who was running the study locally told me she has seen patients whose whole body remained numb for long periods of time (years).   I have been taking a Super-B complex and iron since my anemia, which began around January  or so.  It has not affected my neuropathy that I can tell, but I do have significantly more energy.

The chemo does not actually damage the nerve endings, but rather kills the "lining" or "insulation" around the nerves, so that they are sort of "raw," similiar to a power cord having an exposed section.  It is literally those small nerves "shorting out" between one another.  This usually effects mostly the "digits," or finers and toes, and goes from there.   Diabetics often suffer from the same condition and symptoms, although what causes their's is different.

I had R.L.S. before chemo, and still do, so I do not know if the neuropathy affected that or not.  I take so many drugs and have so many odd neurological issuses that I have declined trying any more drugs, and just deal with the symptoms.  For instance, I have REM Behavior Disorder, which is an issue with the brain stem during sleep, which is considered a strong indicator of eventually getting Parkinson's Disease (over 50% corelation in some studies).  I think it is also usually related to the R.L.S.  I learned this stuff at a sleep lab for severe apnea.  I am left-handed but left-dominant, semi-ambidextrious, and other weird stuff.  So, as I said, I just choose to avoid any more medications, which when altering the brain, can cause more harm than good. The article below both describes REM B. D., and is a link to a lot of great sleep-related info, like R.L.S.

http://www.sciencedaily.com/releases/2011/07/110729175617.htm

The R. N. who led the cream study told me that neuropathy is essentially considered untreatabe, but some drugs are on the market for it. R.L.S. is considered very treatable, however.

If I can leave with any good news, it is that my symptoms have reduced over time. I do not know if they will continue to do so.  I would not describe my neuropathy as "painful," just unpleasant.  I have never needed a pain reliever for it.  I would not think that neuropathy would affect your talent in "the ring," with those gloves on....

max

 

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Max,

I am on that Super Duper B complex and I swear it is doing nothing except changing my urine color<--T.M.I. i know but that is the only difference thus far. So, do you know if this "insulation" around the nerves will ever redevelop itself or is it gone forever? Your description is exactly what it feels like...the part where I feel restless like I have all this eletricity running around inside of me.

Ok, so this Parkinson's thing...how do you feel about that? Just asking because I have always felt like I was going to get alzheimers or some other type of mental dysfunction, excluding the obvious craziness that I exude on this discussion boardWink!

I think it is absolutely AMAZING that we as patients and caregivers can link up symptoms and early warning signs much better than the doctors can, which is why when I graduate I am going to be the best damn Physician's Assitant that there is. My patients are going to be shocked when I tell them that I have suffered the same things that they have.

 

Your insight is always so informative and for that WE LOVE MAX!!!!

XXXOOO

Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Carie,

What I have always been told or read is that neuropathy sometimes gets better, and sometimes does not.  Mine has slowly gotten less severe, as I said. You are not far out of treatment, so you may have none relatively soon -- at least it is a possibility. I hope it fades away for you over a relatively short period of time (which might mean, understand, a year or more).

My cousin, decades ago, joined the Army as a medic, E-1 (buck private).  He got out as a Captain (officer, ) O-3 paygrade.  He is a P.A. today in southern Iowa, and runs two large clinics, essentially by himself.  P.A. training is about the coolest thing a young person can do.

Also: you mentioned being able to tell patients in the future that you had "been there, done that."  There is an oncology nurse in my clinic that had NHL, and then 10 years later, breast cancer (double removal). She is back at work, and is the most wonderful caregiver you can imagine.

Regarding Parkinson's:  I do not worry about it.  Parkinson's does not immediately affect mental clarity the way Alzheimer's and dementia does. Plus, I have always been profoundly absent-minded.  In the fifth grade, we were all called to the boad to write our name and introduce ourselves.  I FORGOT MY NAME, and could write nothing.   If I got ALzheiomer's, in the early stages at least, no one would notice.

We love you too,

max

illead's picture
illead
Posts: 532
Joined: Aug 2012

That is too bad Carie. I'm so sorry.  After fighting so hard and valiently and now this.  It's maddening for me, I can imagine how you feel.  We all know you will keep fighting and not let this get the better of you.  Hopefully you have your age and health on your side.  I know though it's a double whammy and a heartbreak.  I really do feel for you, we all do.  You know one thing though, you have us.  Thinking of you always, Becky

Rocquie's picture
Rocquie
Posts: 489
Joined: Mar 2013

Hi Carie, yes, I too, suffered from the Vincristine side effect of peripheral neuropathy. My hands felt very tingly--like they were asleep, and very weak. I dropped things all the time.  I had foot drop, meaning I could not lift my feet to walk. I had to lift my whole leg from the hip. It was very freaky. I actually had to use a walker for about 4 months.

My Oncologist referred me to a Neurologist. He did a fun test, the EMG. They moved a probe up and down my legs and released electrical shocks. Also along my spine. Party! It was especially exciting when my leg would jump involuntarily. Diagnosis: Peripheral Neuropathy. Didn't we all already know that? He prescribed AFO's--ankle foot orthotics. I had braces to strap onto my feet and legs. I despised those things and barely ever wore them.

One night, my husband was kind of, sort of, nagging me because I didn't want to use them. I finally said, you put them on and walk around in them. So he did. He understood and never said another word about them.

The orthotics man who fitted the devices called my way of walking "hip hiking and foot slapping". I thought that was pretty funny and sounded like I was ready for a hoe-down.

One day, after I rolled into the hospital on my walker, for a blood transfusion, a nurse told me about using Alpha Lipoic Acid (buy it at the health food store) for Peripheral Neuropathy. I did a little research on it and also talked to my doctor. I bought some--600 mg capsules. I started taking it (with food because it did upset my stomach otherwise). Within a week I could tell a difference. Within a month I parked my walker and started using a cane instead.

Now, after taking 600 mg. of alpha lipoic acid daily, for about 4 months, my hands are as strong as they ever were and I walk completely normally (if not very carefully) without assistance.  Ta-da.

(((Hugs)))

Rocquie

 

 

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Rocquie,

you have just given me hope....this sounds very promising. I just returned to work 3 weeks ago because my treatments were done and because I was out of FMLA time so I had to go back..It is a job that I despise after what I went through with my short term disability of $50 a week and taxes came out of that, also it took them like 8 weeks before they payed me a dime.....I could go on forever, anyway it is so difficult for me to perform the tasks in a comfortable manner now because of this neuropathy and I go home in pain every night. I will definitely check out this Alpha Lipoic Acid that you mentioned because I can't take this anymore. Obviously, it is nowhere near as bad as yours was but it is still painful and annoying. I am unable to sleep also and it is making me become irritable. I think it is crazy how this just sort of happened out of the blue after I was done with the treatments. I should have known I wasn't getting off that easy...lol

That hoe down walk, well I had that immediately after my last treatment, but it went away within a few minutes of walking....I cannot tell a lie, it scared the crap outta me though...I was like "what the h#ll did you give me?" to my nurse.

Thank you

XXXOOO
Carie

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Gosh, I hate this for you.  What Roquie wrote is very interesting and doesn't sound like it would hurt to check it out.

Rocquie, I had to laugh at what you wrote about the "Hoe Down".  When I was in elementary school we had to learn square dancing - seems silly now but it really was kind of fun:).

Hang in there Carrie - we know how tough you are and you got us on your side too.  Get those gloves out and start swinging!

Hugs - Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Jim,

  Come on now. Answer me this. How did you Square dance with all those big fat crayons in your hands and a target on your back. Of course this was while you were waiting on the Short bus to take you home.  LOL....John

girliefighter's picture
girliefighter
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Joined: Mar 2013

John,

How do you supposed they measured out those squares wayyyyyyyyyyyyyyyyyy back then???Wink

 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  Never thought about how they measured those squares. Good question though. I never got into square dancing anyway. I wasn't into that school stuff that much or dancing. I thought a hootenanny was a mama owl. Heck, for years I thought peter pan was a bed pot and moby dick was a venereal disease. Ain't I nasty ???? Can't have any fun, then what the heck !!! John

  Better flag John. He's getting crazy again. The chemo has destroyed his brain. He might jump up on his soapbox. I know you got a laugh out of that anyway !!!

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

John, I was like a human "Spirograh" - remember those?  I was doing the "Texas Star" and the "Virginia Reel"  and left beautiful spiral designs on the floor with my crayons;).  Who do you think started crop circles anyway? ;).  And of course a moving target is always harder to hit - (chuckles).  I suppose you dancing would be more like an "Etch-O-Sketch" ;).

(For you new guys, John and I have been picking on each other for a long time - all in good fun.)

 

COBRA666's picture
COBRA666
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Joined: May 2010

You got to be kidding. Me dancing would make an etch-o-sketch look like a Van Gogh master piece.Laughing

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Jim,

I thought I was going to get to retire those gloves and go back to my black ones that are worn out, but clearly I will bring those pink mamajamma's back out again!

I am definitely going to pick some of that up tomorrow, I was hoping someone would mention something more along the lines of a natural treatment vs. the Anti-Seizure meds I am on now..Got me to thinking how sometimes the side effects of our treatments put us in worse shape than previously...Darn doubled eged swords anyway

XXXOOO

Carie

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

I hope it works and please let us know 'cause this could be useful to others on here dealing with the same issue.

Hugs - Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Carie,

Three items:

(1) The pink gloves will help a lot.  When about bald, at Party City I got a foot-long, greyish and black wig.  I looked like the guitarist Slash, but talked like Keith Richards.  The humor in it made me feel a little better.

(2) I agree with GK's thoughts on taking it as easy as possible. Do not slay too many dragons at once.  Rest is curative.

(3) I work in blighted, ghetto neighborhoods all night long.  When I read the comment about "hoe walk"  above, Kissat first I misunderstood.

max

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Amazing thread this has generated! After readingf through the string, I found that Max and I share almost the identical symptoms.

I was wondering if those with the most severe issues were treated to the full complement of chemo and rads. I've been talking with some new found brethern of the Hodg and have found out that they are not having the same issues as some of us. The biggest difference is that their treatments were halted around the half way point when they were checking clean on all the tests, plus they did not recieve radiation.

I know this is a fairly new protocol for the Docs to take, but I emember asking my Onc if I could stop when I had check clean but was told once the course is started you need to run it through. made sense then, but WOW, dealing with this daily for the past four years reallly BITES.

Does anyone else have effects that migrate and change over time?

I've on occassion lost the ability to taste, feel temperature when eating, slurred speech. And my favorite, I could not sense weight when lifting. Thought I was "Superman" for a day until it wore off and relized I had severely spraned my wrist and arm. The Docs were flabergasted when I told them what happened.

I've been keeping a journal of what happens, just for laughs, My Onc usally looks shocked and bewildered

 

Dave

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Dave,

Interesting that your experience was/is very much like mine.

If I did not mention it, I NEVER had ANY radiation.  But, I did have the MAX amount of abvd permitted by the FDA, which is 12 infusions (6 "cycles").  I guess that is a lot of Vinblastine.    Perhaps you can become a high-dollar researcher ?

Bless you guys,

max

GKH
Posts: 302
Joined: Jul 2012

So sorry to hear this. However I am certain the girliefighter will prevail. I know there is a lot of ra-rah-rah and an understandable urge to do many things at once. However - you might wnt to take it a little easier. Sounds like finances are tight and you have to work, but could school wait a few months? I am convinced that burning my candle at both ends weakened me to the point I got lymphoma. If its an option please try to back off a little and take it easy for a few months.

also I have found my best solution to the restless leg syndrome is hot baths. I sometimes get up and take a hot bath at 3AM just to relax the legs so I can sleep.

all my best

GKH
Posts: 302
Joined: Jul 2012

I do believe that APA is mainly used for diabetes induced neuropathy. I have a Dr inthe family and will ask him and let you know what he says. I agree that it certainly is worth a try. I will let you know if it helps me.

Mary N.
Posts: 85
Joined: Jun 2013

Like some of the rest of you I have found that ALA alpha Lipoic Acid really helps me.  It does take a month or two and I had to up the dose to 600 mg in am and evening.  I also use with meals.  Another thing for the cramps and restless leg stuff is I take a shower.  Something about the water rolling over the body helps.  I also find it is necessary to keep my potassium at a normal level.  Arn't we lucky with these side effects.  Mary

 

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

IT WORKED!!!!. I have been taking ALA 600mg a day and my super B complex and I am happy to report that I have very little neuropathy left. I got the ALpha Lipoic Acid at GNC for $16.99, best $ ever spent in my book.

 

Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Carie,

Pabst Blue Ribbon slightly increases my numbness, but causes me to be ok with it !

max

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Max,

I didn't know they still made that stuff, my grandma used to consume large amounts of that daily

LOL

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Carie,

PBR has made a huge comback in the last ten years or so, and is a staple in almost all music clubs and concert events.

I am not encouraging anyone to drink, of course.

I bet your grandma is (or was) happy !

max

.

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Max,

No she is an ornry old coot.....she also used to hit the wild turkey pretty heavy too....ahh..being a youngster at grandparents on the weekends was fun...Granny would start drinking the PBR and we watched Dallas and Golden Girls....She is fancy now though, she drinks wine!!!LOL

I am pretty sure like almost 100% sure, that I have a winter hat made out of Hamms and PBR beer cans fromt the ancient days...My other grandma used to knit them or something and they punched holes in the cans and sewed them in....This hat was always a hit at the ELKS conventions, the old men loved me for itWink

LaurieKW
Posts: 14
Joined: Sep 2013

Hi - new to this group! i had severe neuropathy that started during my 3rd 5 day cycle of rEPOCH.  After the 6th cycle I started a lot of physical therapy and acupuncture which helped somewhat.  Had really good advice from my podiatrist which helped; he  recommended 300mg of benfotiamine (one 150 mg pill in morning and eve) with ALA (alpha Lipoic  acid).  It took about 2-3 weeks to feel the benefit but this was preferable to me as  I really did not want to take antidepressants, neurontin nor anti seizure drugs.  I had enough problems with the daily high dose of prednisone and chemo.  I did start to get neuropathy in my hands early on in treatment, but I started using one of those adjustable tension hand grips (about 15-20 reps 5 or 6 x day) and that helped a lot.  Hope you are doing better.

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