The Tingling Side Effects of Chemo

"We still want you to be able to button your shirt." That's what my doctor said. He was talking about neuropathy, something I had never heard of eight months ago, but something that is now part of my daily life.

Neuropathy is a side effect of the chemo. Just about everyone on chemo gets it and sometimes it lasts long after the chemo is stopped. It's a tingling in the hands and feet. Not a pleasant kind of tingling. It's actually pretty annoying. My feet tingle a good part of the time. There's nothing I can do about it. Nothing can make it stop or go away, except stopping the chemo.

As for my hands, they don't tingle. But it feels like someone is squeezing the tips of my fingers — and they don't stop. I can't really say that you get used to it. I certainly haven't, but I guess you learn to tolerate it.

I finished my original round of chemo and now I'm on a lesser regimen, sort of a maintenance program. That can go on as long as I want, or, as my doctor put it, "as long as I can stand it." It's the neuropathy that's the key. When that becomes bad enough or annoying enough, then I can stop taking the drug.

The nausea from chemo comes and goes. For me, it's worse in the morning, but it passes. But the neuropathy is always there, like a toothache. It's a virtually constant reminder of what's going on. I can live with it — for now. It's a little annoying when I type, like I'm doing now, but otherwise, I can still button my shirt.

I can't imagine how bad it will have to get to drive me to stop the chemo. And in many cases, it doesn't go away immediately. It can linger for months. In the overall picture, it's a minor annoyance, but an annoyance it is. I guess if people see me wearing only T-shirts or polo shirts — shirts that don't need to be buttoned — then it will be time to stop. After all, style is still important.

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Tomorrows the big day, or rather another, in a series of big days. At any rate it's the day the oncologist and I meet with the surgeon to discuss my upcoming surgery and I find out whether it will go forward on August 9th, as tentatively planned.

Emotionally speaking, the day I have my mastectomy is my real D-day. Weeks of chemo have preceded the day I most dread, the day I join the ranks of the Amazons and become single-breasted. Even though I've known since the end of January that the surgery would take place, I haven't begun to absorb what it will mean to me.

It is something that in the past week has caught me up for brief moments of gut-wrenching grief, when I try to come to terms with my life so far and the death of certain dreams. Here I am 54 years old, no children despite my longing for them, postmenopausal, and soon to become single-breasted. What sort of woman is that?

The voice of reason tells me that if I beat the odds and my cancer, then it will be up to me in how I lead my life to determine what sort of woman I'll be, to define myself. Being female and feminine aren't solely determined by appearance and the bearing of children.

A therapist might say that it's the sort of challenge that's an opportunity for growth. It's a challenge that I hope I will measure up to. After all, I will be joining the ranks of the Amazons, renowned for their strength, ferocity and refusal to knuckle under to society's understanding of what constitutes womanhood.

Sent by Shosh | 11:14 AM ET | 07-27-2006

Never give up. Never, never give up...

—Voice from remote China

Sent by Sky | 11:18 AM ET | 07-27-2006

My neuropathy was so bad that I needed a cane and a handicapped license plate. My nurse practitioner suggested acupuncture and a low dosage of amitryptylline at bedtime. I have acupuncture twice a week (at the cancer center) and although I was not a great believer in alternative therapies, I am now a convert (to acupuncture at least). The results have been amazing - the neuropathy is now like background noise, and not something of which I'm constantly aware. The nighttime neuropathy which interfered with my sleep is especially better.

Another tip: for the next CT scan ask if you can have gastrografin instead of the barium. Gastrografin is abou 1 1/2 oz. of a clear liquid that you mix into 16 oz. of a juice drink (I find that with Snapple iced tea there is virtually no foul taste). You need to drink 3 doses (each in 16 oz.) within a 2-3 hour period, but still much better than flavored chalk! Good luck.

Sent by Holly Michaels | 11:29 AM ET | 07-27-2006

I just wanted to say thanks for your ongoing column, your insight and words. Here's hoping you make it a long-running item.

Sent by Dave | 11:37 AM ET | 07-27-2006

Leroy, first and foremost, thank you for sharing your experiences, thoughts, and feelings. They all ring so true.

I was diagnosed with colon cancer 1 year ago - had surgery and then chemotherapy. My chemo ended 5 months ago. I am feeling well and very grateful. My family and friends want to move on, believe it is in the past - of course, so do I, but everyday I am aware that I have no feeling in my toes. It is an aggravation, no more, and yet enough to remind me of how close my cancer fears are to the surface. My life has changed in multiple ways and, like others have said, in many ways to the better.

How long will it last? I do not know. Live, laugh, love, pray - that is all I can do.

Thank you again. Keep your faith and your spirit. Many people are pulling for you!!

Mary R. Morgan

Sent by Mary R. Morgan | 11:04 AM ET | 07-28-2006

Leroy...Thank you, thank you. I just finished chemo for stage III colon cancer. My hands are numb as I type this to you, and sometimes when I'm very quiet, I cry because I'm afraid that it will return...somewhere...where will it be? When will it come. How do I live with that fear?

Linda

Sent by Linda Jacobs | 11:06 AM ET | 07-28-2006

Leroy,

I am given a double dose of a magnesium/calcium infusion each chemo visit, one before the oxaliplatin infusion and one after.Then comes the leucovorin and 5-Fluorouracil in a "baby bottle" for 42 hours.

The sensory neuropathy is definitely aggravating and sometimes dangerous. After my third treatment, I immediately had the tingling sensation in the finger tips of my right hand. By the time I reached my car, it was affecting both hands and was so bad I had to "palm" the steering wheel to get home. By the time I arrived home, it was painful enough and difficult enough that I had a very hard time using my keys and unlocking the door. But two hours later, the symptoms were gone.

Like you, I get the tingling in the toes. I have to wear socks and shoes most of the time, even at home, just to protect the toes from unintentionally being stubbed.

Even though the neuropathy comes and goes, I have noticed a triggering effect. If my fingertips hit something hard, I can actually cause the tingling to occur with greater intensity. Only inactivity seems to eliminate the symptoms brought on with this trigger.

My cancer center nurse tells me that I shouldn't worry about the intermittment tingling. It's when the sensations are continuous that there is evidence of nerve damage from the chemo. I will really have to research this further, but I can certainly sympathize with how invasive these kinds of side effects are.

Sent by Don Spencer | 11:31 AM ET | 07-28-2006

Please tell us more about the acupuncture. Is this something most acupuncture therapists can do?

Regards,

Scott

Sent by Scott McGaw | 11:51 AM ET | 07-28-2006

Hi Leroy,

My 65 yr. old father-in-law is battling lung cancer (Stage IV NSCLC). I read your blog everyday. Thank you for sharing your thoughts. I think by reading your blog I get more insight into what he's going through and it helps me to support him better. I wish I could better explain what your blog has meant to me over the last couple of weeks, but I can't quite figure out how to put words to it.

I wish you and your family all the best.

Laura

Sent by Laura | 12:43 PM ET | 07-28-2006

I am almost a year past my diagnosis of stage II breast cancer, and have completed my chemo regimen of Adriamyacin/Cytoxin followed by Taxol and 6 weeks of radiation. When I was getting Taxol weekly, I was told I might experience neuropathy (which alarmed me as I am a pianist). My oncologist recommended that I try taking glutamine for four days following each Taxol infusion, because it might help with the neuropathy. (Unfortunately I don't remember the dosage.) So I did, and my neuropathy throughout my time with Taxol was minor. I'll never know if it was the glutamine that made the difference, since I kept it up for all 12 weeks of Taxol, but I was willing to try anything to keep the neuropathy manageable. I have no idea if it would be helpfuly for your neuropathy, but I thought I would pass my experience along.

Sent by Gretchen | 12:45 PM ET | 07-28-2006

It is important to remember not to confuse the treatment with the disease. The treatment is temporary; the disease can be permanent.

Sent by Mille | 2:51 PM ET | 07-28-2006

Wow, this is my topic. Late last year I was diagnosed with stage IV Ovarian Cancer. I went through 4 rounds of chemo therapy (Taxol and Carboplatin) before I could have surgery to remove the now fried tumors. The neuropathy was relatively mild in my fingers but in my feet... it was painful, very painful. I took L-glutamine and vitamin B6 and 12 through out the treatments. I don't know if it made a difference but maybe it did... I was off of chemo for six weeks prior to surgery and was back on chemo three weeks later. It was after the sixth treatment that I could not walk for days following chemo. The nausea was nothing compared to the neuropathy. It felt as if someone had tied a tight string around my middle toes and taped a stone on the balls of my feet. Yet when I looked, I could see no stone or string, only swollen toes and puffy feet. Sometimes my left leg was numb to the knee.

After the "last" treatment I could not walk for a week. It was absolutely devastating that each day my feet were worse. I told my husband that I thought we had crossed that line of "doctor, do no harm." I was alive but in so much pain and not being mobile was devastating to me (an active outdoors person and horsewoman). I was also aware that the nueropathy may diminish with time but, I am also aware that it may not.

Then I began to notice that each day the pain was lessening and by the third week following chemo I could hobble. I sought out an acupuncturist that was experienced in treating cancer patients with neuropathy. Within days, my condition has vastly improved and I am continuing with treatments.

Should I need have to have more chemo treatments I will not do it with out acupuncture treatments.

Thank you for this blog Leroy, it has often touch me. Your essays and the comments from readers are a comfort to me as I know I am not alone in my of feelings.

My motto is that I am operating under the premise that I am okay and I will continue to do so until I am informed otherwise. Today, I am well.

Sent by Susan | 10:16 AM ET | 07-31-2006

Thank you for sharing your experiences and opening a forum for discussion. I would also like to thank everyone else for sharing their experiences on this neuropathy problem. I know now that I am not alone.

I can't find much information in the medical literature about the cause of oxaliplatin-induced neuropathy and, judging from the comments here, everyone is different. This drug was only recently approved and it takes a while to really understand the long term effects. I'm guessing there aren't a lot of long-term survivors around to study in detail anyway.

I am 172 days from being "cured" but who's counting? I was diagnosed with colon cancer in my 30s and was told that colon cancer is usually very aggressive in younger people. My oncologist assures me that 3 years, not the standard 5, is the magical time for me. I hung on through a year of chemo and am now back to walking 5 miles at a time and even jogging a bit but it is painful still and I may never fully recover feeling in my feet. It has been well over a year since my last dose. How something can be numb and painful at the same time is a mystery to me but I keep going in spite of the pain. It's better than the alternative and a constant reminder of how precious life really is.

Sent by M. | 1:59 PM ET | 08-01-2006

If you have small cell lung cancer, the peripheral

neuropathy is actually a sign of the disease, and

oftentimes shows up prior to any chemo, as it did in

my case. My oncologist treated me for it with

Neurontin, but said he was confident if they could put

the cancer in remission, the neuropathy would take

care of itself. Sure enough, after my treatment and a

cancer free scan, my peripheral neuropathy went away.

I have been cancer free for almost 18 months, and the

neuropathy has not returned. The neuropathy was at

times worse than the cancer, as it kept me up walking

the floors with the constant prickly effects of that

disease. But all is well now. No cancer reoccurence,

no neuropathy— all is well.

Sent by Susan Schaeffer | 3:01 PM ET | 08-03-2006

Leroy, Thanks for letting other folks out there have some sembulance of a clue of what we are experiencing. I have a blog myself but I am not doing such a great job filing reports. I also am going through peroids of just wanting to isolate myself, I am sure you know what I am talking about. Thank you for being out there and expressing yourself.,

Sent by Steve Eisen | 3:02 PM ET | 08-03-2006

5 months ago my husband, aged 56, was diagnosed with stage D colon cancer. He has tingling in his fingertips and on his tongue. He also says he feels as if he has been hit with a hammer on his head. Could this be a sign of nerve damage.

Sent by Linda Obery | 3:37 AM ET | 04-06-2008



   
   
   
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