Neuropathy

[Wendyz4]

its only been three months since I finished Oxi...the neuropathy in my feet (little in finger tips) is getting worse than better. Is that just how it goes? Has anyone seen a Neurologist?

[Rob in PA]

Everyone reacts differently....but yes, it got worse for me. Saw a neurologist and ran some uncomfortable tests and he confirmed "yes, you have neuropathy".... no shit .

Put me on b-12. No help. I live with it.
rob

[mstults]

Neurontin has taken care of the shooting pains but after almost a year and no Oxaliplatin my feet are still practically numb. I feel it's partly the 5-FU but oncologist still insists its the Oxaliplatin.

[gtownguy]

During chemo my neuropathy wasn't all that bad. It was two months afterwards when it really got worse. Haven't seen a neurologist, but my oncologist doubled my dosage of Neurontin and that seems to be helping a little bit.

[kellywin]

Yes, mine continued to get worse for a few months. The shooting/zinging tingling went away but the numbness continued to be there. My feet hurt as well. My hands are funky in the mornings, but seem to get better the more I move them. I am on neurontin, prescribed by my oncologist. It might be helping a bit, but I am going to ask him about upping the dose when I see him next week. The one plus with the neurontin, it completely took away the hot flashes I was having from radiation induced menopause! That in itself is a win for me.

[ziggymonster]

My neuropathy continued to worsen for about 3 months after finishing folfox...then stabilize, now my hands are sloooowly improving, not yet with feet.(going on 6 months )

[brigita]

My CIPN spiked about 6 weeks after finishing FOLFOX. The bad news is that was just over five years ago.

The good news is that the shooting pains & burning are mostly manageable with Gabapentin (1800mg/d).

The GREAT news is that I completed a full marathon last month despite it all.

[pog451]

My fingers and feet were fine during my first three loads of chemo but went numb in the 6 weeks I was waiting for my liver resection. they stayed numb, getting slightly worse, during my post-op chemo and got worse again immediately after I stopped. Since then (about 4 months) things have got a lot better, although with the cold weather things have taken a step worse again.

[chemo sabe]

I finished chemo Sept 2012 - I have neuropathy in my feet and a bit in my finger. It is annoying at least. My family Doc prescribed Gabapentin but I did not start that after reading the possible side effects. My Onc prescribed Cymbalta and I think it takes the edge off the neuropathy. It is still there, but I get by. Most importantly, my neuropathy is not what a doctor would call "bad". I can still feel the orientation of my feet, I do not drag my feet and most certainly I can feel the brake pedal.

[MarkS.]

Everyone reacts differently....but yes, it got worse for me. Saw a neurologist and ran some uncomfortable tests and he confirmed "yes, you have neuropathy".... no shit .

Put me on b-12. No help. I live with it.
rob

This is the funniest thing I've read today......thanks for the laugh. And, yes, I have neuropathy too and deal with it.

[Rob in PA]

This is the funniest thing I've read today......thanks for the laugh. And, yes, I have neuropathy too and deal with it.[/quote]

I figured a few of us could relate to that. That was the first and LAST time I saw that neurologist! It was almost like he didn't believe me that I had neuropathy and he wanted to run all those damn tests that zap you and prick you just to confirm what i was telling him all along. I suffered through all of that in hopes of him telling me "here's how we are going to treat it", instead he pretty much said "sucks to be you, try some neurontin and b12".

Nothing against neurologists or those with diabetic induced neuropathy, but I just got the feeling that the neurologist I saw didn't really know how to deal with cancer patients with neuropathy induced by chemo. Time is precious to me and I just felt like that was two hours of my life that was wasted.

[Cured]

Rob, You are right to feel the way you do. But think about the Drs. who care about people and - too often - end up consulting with people he has no way to treat. Some Drs. have good "bedside" manners, and others don't.

My Onc referred me to Alternative Medicine clinics, saying that they help Neuropathy - sometimes. Sadly, too many of these people want to take your cash and have no better treatments. (They only take cash or Credit Card, as insurance will not pay them.)

I take vitamins and have taken L-Glutamine, but am not sure it helps.

Wendyz4, After getting worse, my nerves have recovered a lot. My fingers are almost normal, but my feet still are not. But they are all good enough to LIVE with. I am thankful that the FOLFOX finished killing off my cancer and here I am 5 years later, living a normal life. I hope you can cay the same in 5 years.

[handicap18]

My last treatment with Oxi was September 4, 2012. The neuropathy got worse for about 3 months afterwards. In my hands it got to the point that I almost couldn't write or type. It is now completely gone in my hands, but my feet haven't gotten any better. My feet aren't terrible. Not completely numb in my toes, but close. It doesn't stop me from walking or driving. Running is pretty much out of the question and if I spend to much time walking it bothers me.

I see a Palliative Care doctor at Dana-Farber. I've been on Gabapentin for the last 6 or so months (I'm up to 2400mg/day) and for the last 2 months also taking Nortriptyline. My feet haven't gotten any better so we are now getting off the Gabapentin and I'm going to start Lyrica as soon as my insurance approves it.

Hopefully that will help. I don't have pain from the neuropathy, but it is very annoying and is always there. grrrrrrrr

[Ron50]

Gday all, My docs are a little slow , It has taken them fifteen years post cancer to send me to a neurologist. I told him I had severe neuropathy in both legs and my left hand and now I am getting tingles in the little fingers of my right hand. I went for a consult ,had a million blood tests and finally had a nerve conductivity test. When I first saw him I asked what was causing it and how do I stop the progression. After the nerve tests (the technician asked the neuro to come in and confirm the results) he told me I had severe motorsensori peripheral neuropathy. I knew that . As for my questions .Ï don't know what caused it and I can't help you , that will be $500.00 thank you. I told him I was recording over 11000 premature ectopic heart beats a day . Could it be the same neuropathy, I don't know. My nephrologist is about to start me on cyclosporine. I am leaking over 5 grams of protein a day thru my kidneys. The cause of my kidney problems? After 6 years and 3 kidney biopsies. I don't know. That makes it unanimous I am dying of "I don't know".... Ron.

[stupidcancer]

Hi Wendy,
I've just had my forth of the twelve folfox treatments. After my second the tingling and nausea were so bad and I got dehydrated due to the vomiting and couldn't swallow had to go in for an IV to rehydrate. They took the oxi out for my third which was such a vast improvement! My onc put it back in at half this treatment and the neuropathy was almost as bad as full dose. I don't have any words on how long it lasts after but a friend of mine that had colon cancer 20 years ago and is still going strong says he still gets tingly fingers and toes when it's cold outside. I hope you're doing well and have a happy holiday!
Cora