Chemo Induced Peripheral Neuropathy with restless leg syndrome

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

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

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 said:

Gloves

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

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

girliefighter said:

Oh Max

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 board!

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

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