Vent about Permanent Neuropathy

proudtospin

well my junk started as a back issue and have had made ing back issue for a couple years now

All started when I started with a dif trainer at my gym, it felt like someone stuck a knife in my lower back

Have done a ton of pt sessions, tried a nonsurgical spine guy who when I could not get relief from pt, i had him give me a steroid injection

Also did the massage, acupuncture and çhiro thing

Pain much less, I do not do pain meds as i am allergic to all nsaids, first spine guy said it was my fault for not taking otc pain meds when it fist happened but they send me into an asthma crisis, cute huh.

So now I have numbness and tingling in my legs, lots of weakness in legs and new set of docs who are running tests for lyme, vit b and also ms

Got a nuerologist and nuerosurgeon

Surgeon says my back is weak and he does not want to do a biopsy which freaks me more

Mris are following a lesion on my spine so the nueropathy is just a detail

proudtospin

I want to know what the lesion is about, sort of think it is the site of my original injury

elimar86861

Yes, proud, I did forget that you have all the back issues as well. Not that I wish for you to have any of the things that you mentioned, but I do hope that if you go through a whole new barrage of testing that it will lead to something being done about your back and legs. Good Luck!!!!

proudtospin

thanks eli.

I find the tootsies like a cream I bought at whole foodsCalled toprician, it settles the nerves so I get sleep

Today was a ton of blood tests, got more unknown this week

elimar86861

BosumBlues, I would expect that it IS related to chemo, as I have read that CIPN can get better or, unfortunately, get worse over time. What I don't know is that after a period of worsening, could you rebound and begin to improve again? I hope this can happen for you.

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For those who like charted info., for those who like their neuropathy labeled, for those who might want to save a few $$ or are unable to get over to Johns Hopkins, here's an article out of Australia with a good overview of how things are looking currently:

Chemotherapy-induced peripheral neurotoxicity: A critical analysis

I got a new morsel of info. out of the article below article too, because it said that my platinum drug (Oxaliplatin, not what is given to BC women) can cause numbness and tingling for up to SIX years. Well, I think I can manage to live three more years to find out if mine will go away for good, so we'll see.

Management of Chemotherapy-Induced Peripheral Neuropathy

jcpriest0469n

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yes it's so nice to here from other's with the same issues. This is my first time chatting. I was diagnosed the end of Dec. 2013. It's difficult talking to people who have not had cancer. My feet feel foreign to me. It's like walking with a bunch of sand in my shoes. Then at night the electric shocks and cramps start. My hands are also affected, but not as bad . It still annoying,especially when touching paper. My tongue flat. Glossitis they call it. Thanks for the shares.

MinusTwo

Eli - thanks for the articles.

I will be 3 yrs out from "hard" chemo in December. (of course we're all still assuming an additional year of Herceptin wouldn't aggravate anything). And the symptoms noted with taxane use was 41% at 3 years. Do I expect miracles by December - not so much but I can continue to hope. Especially with the possibility of gradual improvement over 6 years.

While BC people don't get Oxaliplatin, I did note that when Carboplatin is combined with Taxanes (as mine was) 25% of the patients have ongoing symptoms. The scary part was 58% of the patients have lasting dysfunction. Out of all the possible "preventions" listed - I took 4x the required calcium, B-6, B-12, Acetyl L-Carnetine and I iced my feet & hands. The only thing I didn't do was continue my fish oil, since the infusion nurses said that antioxident would be trying to cure the cells they were trying to kill. I don't want to imagine what could have been my "fate" if I hadn't taken all these things?

I think I've said before, I hate walking like an old lady with my numb feet. I hate it even more since i fell 2-1/2 years out - mostly because I couldn't feel or see my feet - and apparently have done lasting damage to my shoulder. Now I walk even 'tighter' since I'm afraid to fall again. And I really hate being afraid. I've about decided I'll have to stick to walking on a treadmill with handles instead of our lovely parks.

I am grateful that for the most part I don't have pain.

MinusTwo

Bosum - if you're having pain, are you taking anything for it? I would certainly try to find a drug that helped if I had ongoing pain - although I understand that's difficult also.

elimar86861

That second article had the usual double talk about Acetyl L-Carnitine, with conflicting study results both good and not good. That is not something I have personal experience with.

MinusTwo

I quit taking it a couple of months after chemo since i couldn't verify any benefit either.

mltdd

I'm a little over 4 months out from chemo. Gabapentin has worked for me.

elimar86861

In the results of clinical trials, as per the second article I posted, duloxetine (that's Cymbalta) seemed to have the best results for PAIN relief. (Again, nothing really addresses the numbness.) Venlafaxane (that's Effexor) also had some positive results. Lastly, the topical cream did some limited good. Nothing else, from clinical trials, had positive results reported. Just in hearing some first hand accounts, it does seem that Gabapentin could help too, but it did not achieve positive results in the trials so far.

Neither of the articles mention that Cymbalta does have more of an interaction with Tamoxifen (as per Drugs.com,) and Effexor is usually given instead (although I never quite understood that because Effexor still uses the same liver enzyme that is used for Tamoxifen) but I guess that the interaction is milder. Long story short, don't forget to check if anything used to treat CIPN pain might reduce the effectiveness of your BC treatment drugs.

Italychick

What did you find out about Befotiamine? I am interested because I take it

Italychick

That's okay, will do some reading about it.

Chloesmom

Had a horrible time w electric shocks in my foot every few minutes. That was several weeks ago. Now they have subsided. Wonder if it was some of the nerves waking up that it hurts hen they regenerate. Still numb though. Broke a toe the other day and hardly felt it. Wearing shoes in the house from now on!

proudtospin

me, wearing ace bandage on foot now whenever walking any distance

proudtospin

so my new fancy nuerologist insisted on a emg, my third

This guy says no nueropathy but dumb foot feeling is from spine issues, got tumor on spine and delightful hydrocephelus, one nuero guy says he can not do any thing to help me but, fortunately he was my second choice and met with other nuerosurgeon who says we need to treat the hydrocephelus first, gads had that for years and no one ever thought to do anything

So new brain mri in 3 months then spinal, tap and if that helps he would do a shunt

Delightful

proudtospin

bb, the back has several problems and i have been fussing with dif docs for some time, the nueropathy is just one piece of the pie

I do like and respect this guy as a pal used him for back surgery in the past, she was the one who said get a nuerosurgeon not an ortho guy

He is attacking one thing at a time as conservative but very good , I have talked with several and feel this guy is right, they have done about 6 dif mris on my back and my brain, he also said be careful and don't fall so I am actually worried about that, legs feel heavy even though doc keeps saying my legs are strong, not sure if I feel that I would be able to get up

They ran tests for tons of stuff and at one time I thought I was going toget an ms diagnosed but I do have experience a plan

Now got a plan and just want to move forward

proudtospin

I hope you find an answer for your stuff also, it is hard to figure out what sort of doc to use, and dang but no fan here of narcotics or surgery

Course stuff not fixed yet but will let you know how it all goes

proudtospin

Guess I am lucky with lots of docs medicare is accepted by most all docs,

Chloesmom

I went to a podiatrist as I had stumbled because of the neuropathy and dislocated my toe. He said he felt the tightness between the 3rd and 4th metatarsal was sqeezing on rage nerve and causing the electric shock pain on the top of my foot. The neuropathy made my foot stiff and the stiffness made the pain worse. Had 3 intensive massages. The numbness is the same but stabbing pain has let up!

proudtospin

I sure would be all for trying foot massage. I confess that a pedicure feels great

jcpriest0469n

hope you all get relief from foot pain. Mine is good lately for some unknown reason,but now I am getting head ach. Love

proudtospin

my back Stinks, not sure I could bend over to cut my Toenails! And not that expensive around here

Little splurge

proudtospin

I only did hormone therapy and rads, not sure if age but few hairs on legs, what I have i just ignore!

proudtospin

I will let you, next thing is am mri in Nov a d then whatever, really want time to pass, tried to use the stationary bike at gym yesterday, felt light headed when I got up and don't get that

GirlPowerDebbie

When I go to the chiropractor for adjustment, he "adjusts" my right foot with the neuropathy. He manipulates my ankle, "cracks" my toes; and they have a tool called a "rapid release" that vibrates and they massage bottom of my foot, metatarsal area, etc. with it. It breaks up scar tissue beneath the skin. That treatment has given me the most relief, and I have been suffering with it for 3 years. Yeah it still bothers me every single day, but the cramping isn't near as bad as it was before.

FYI I am on on Gabapentin 300 3X a day. I don't see myself ever not taking it. It makes walking just bearable. No 5K's, but I can walk.

Chloesmom

Yesterday I had acupuncture. She put the needles in my right wrist and hand and my left toes felt much better.

proudtospin

wow, may need to try that, great to hear

Blownaway

Saw a rheumatologist, had labs and xrays. Results are all negative for everything tested that might be causing my pain. Its been determined to be all neuropathy. Gabapentin plus Tramadol isn't touching it so the rheumatologist suggested trying Cymbalta. Looking forward to some relief. A friend with the same situation (chemo induced neuropathy) is getting some relief with Lyrica plus Tramadol. Just wanted to let you all know in case you are looking for answers/relief also.