Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Neuropathy

PeacefulZen
0 Recommendations

Surgery July 7, 2008, 6 rounds of chemo, finished November 26. Neuropathy in feet very painful. I feel I made it through the surgery with a tumor the size of a cantalope and stuck to all my internal organs. Omentum was removed and lymph nodes. Had to return to work during chemo in order to keep insurance. Feet still so painful, I play tennis and putting shoes on kills me. I have to really psych myself up to play...but I am determined to not let this cancer dictate my life, or take away that which I love to do.

Does the feet pain get better, go away? Certainly I would rather be alive with foot pain than the alternative, but get depressed sometimes thinking I will always have this painful reminder.

Explore topics in this discussion:

Exercise Cancer Surgery Lamotrigine Morphine Ovarian cancer Carpal tunnel syndrome Peripheral neuropathy Acupuncture Thoracic outlet syndrome Taxol Gabapentin Breast cancer Taxotere Pain Weakness Neurontin Lyrica Insomnia Lamictal Pregabalin Percocet

24 replies

dwm26

I had my surgery march 08 followed by chemo. I got relief from the neuropathy through acupuncture with massage. I still have tingling but no pain.

OrganicMimi

Your neuropathy sounds very painful. I'm sorry. Mine is more numbness. I have acupuncture weekly and I believe that is what's keeping it under control. I also use a moxa stick on the acupuncture points in between visits. The heat from the moxa feels really good. One more thing that I do is have smoothies made from whey protein powder. The glutamine in the whey is the active ingredient that helps. Good luck with your condition and your tennis games- WIN!

Jen457

I am on taxol and at night my feet were just burning. I talked to my onc and she told me that studies show the B vitamins do not help. There were some studies that show glutamine powder keeps it stable and does not make it worse. I went to the GNC store and the guy told me to keep my receipt and that if it did not work to bring it back. I could not believe how it took the burn out of my feet. There is still a warm glow but what a difference. This might be worth trying.

AuntPaula

Dear PeacefulZen,
I finished chemo in the fall of 2008 and also experienced Neuropathy of the feet (and hands as well) but mine was mostly numbness, not pain. Mine cleared up within a year after chemo stopped. I received accupuncture and believe that it helped. Best of luck to you.

AuntPaula

Dear PeacefulZen,
I finished chemo in the fall of 2008 and also experienced Neuropathy of the feet (and hands as well) but mine was mostly numbness, not pain. Mine cleared up within a year after chemo stopped. I received accupuncture and believe that it helped. Best of luck to you.

verlinda

I still have some numbness in my feet and a slight bit in my fingers 23 months post chemo. My oncologist told me that nerves regenerate from the spinal cord at the rate of a millimeter per day. The feet are the farthest away, so they're the last to recover.

Me, being me, I went home and immediately pulled out my blue plastic ruler and measured. I think I figured it would take 2 years, 3 months and a few days, so I figured I still have four months to hope!

cdbart

My family doctor recommended I try Alpha Lipoic Acid. It comes in 200mg and I take three a day. Try it for a month ore six weeks and see if it helps you. Dr said that people have indicated that they see a difference but there is not research to back it. He said it could not hurt to try it. I started taking it during chemo and I have only slight numbness and I just finished chemo. I will see what happens in a few weeks or months.

susangolfer

I just finished chemo for my 2nd occurrence. I had a 3 yr remission. After 1st go around, the neuropathy was Bad... It was at its worst, 2-6 months after. It got progressively better for 2 years where all I was left with was a slight numbness. This time I took l-glutamine, vitamin B6, accupuncture, healing touch, and I still got the stuff. Almost as bad as the 1st time. I take 2400 milligrams of gabapentin just to keep the pain under control. Good new is, I know it will get better and continue to do so for a long time. When I don't think about it, I can almost ignore it. I still golf, walk and do yoga. It will NOT change my lifestyle. Good luck with yours and it will get better. Susan

PeacefulZen

Verlinda,
Had I been given that rate of regrowth I would have done the same thing! That's good to know!...hmmm...I have a 34inch inseam...pretty long legs....may take a bit longer!

gatornp

PeaefulZen,
I can totally relate. I too was diagnosed with OVCA IIIC June '08, began Taxol/Carbo. After few treatments neuropathy began, very mild & it resolved before next treatment. My Onc. asked if I wanted to switch to Taxotere but really was not feeling well enough to do research, wasn't told of any ways to prevent it by my Onc, and hadn't gotten active in Gilda's Club. I toughed it out with my final Taxol/Carbo, my mistake, because my feet became soooo painful and pain did not go away this time. We then began to look into help. Tried Neuragen liquid you rub on but my feet were so painful no one could touch them. I learned to sleep with a big box cut out on one side to cover my feet at night without touching covers.

Yes, the good news is I also finished chemo Nov '08, began acupuncture, yoga, glutamine in hot tea twice a day, B-complex, Alpha Lipoic Acid/Acetyl L-Carnitine, B12 sublingual, and I have others but it gets to be too much. Oh, and I take 150mg of Lyrica twice a day. This helps take away the severe stabbing pain but still have the numbness. It was getting a little better.

Unfortunately, after 3 months following maintenance on Doxil, I had my 1st recurrence and now just had my 5th cycle yesterday of Carbo/Gemzar/Avastin. Bad new is the neuropathy in my feet are worse again. My hands don't really bother me as far as tingling, but I have to handwrite pages of progress notes daily and every now and then, my hand would jerk as I would write (I work as an Occupational Medicine Nurse Practitioner). My Onc. feels my feet are more affected because I'm on them all day. Like you, I find if I don't dwell on it and keep going, I almost forget sometimes I have the numbness. I have though had several times when i trip over my own feet or loose my balance if turing too fast. How do you play tennis? That's incredibaly wonderful. You go girl!!

My husband has done some reaerch on this and foud an article, very comprehensive of things tried. Summary of contributions from readers of "CONVERSATIONS! The International Newsletter for Those Fighting Ovarian Cancer". Web site is: http://www.ovarian-news.org edited by Cindy H. Melancon e-mail: CHMelancon@AOL.com.

If you can't access, I can fax or try to e-mail you this article, it's definitely worth a quick read, has some great tips. Let me know, and hang in there, it takes time but there are always new treatments being tried. Good luck and never stop living the life you want.

GatorNP (Susie)

karenst

So very sorry you are experiencing the neuropathy. I had my last chemo in 12/06 and continue to have pain in my feet which radiates up my legs at times. My onc said that some of the pain would go away after the first year but after that, I pretty much would have to learn to live with it. My primary prescribed neurontin which seems to help and he also gave me a rx for lidoberm patches which I put on the soles of my feet at night when the pain becomes more than I can bear at night. I also have a rx for percocet for really bad days. I do get depressed at times..it just doesn't seem "fair". Fighting cancer sould be enough for all of us without the side effects of the chemo! I still think of all of my chemo as "healing fluids"...but, why oh why do we have to suffer with the neuropathy and other side effects??? Continue to pray for strength...some days that seems the only thing we can do. My heart and prayers go out to all of you!
Karen

lovemnms

I had surgery May 2008 and 8 rounds of Carboplatin/Taxotere. I had /finger neuropathy after the fifth treatment. It was bad , loose nailbeds, poor grip, and constant tingling/numbness. It took about a year to go away.

patries

I'm on a trial, Sagopilone with (double blind) Acetyl-L-Carnitine. I don't know what i'm getting. ACL is registered in Italy and prescribed for patients with perifere neuropathie caused by diabetic. I just had my first infusion with Sagopilone on thursday and already my fingertips are feeling funny. I take 3 x 1000 mg ACL (or placebo) per day. Lucky for me the Sagopilone infusion is once every 3 weeks. Hope this chemo will get my CA125 down and that the ACL will help for the neuropaty

DebbieP

Good luck with the neuropathy, I have it since I finished chem (IP taxol/cisplatin) in April 2007. After trying many remedies, I have found that Lyrica works the best to control the pain - I take 450mg daily - 300mg in the morning and 150mg at bed time, prescribed by a neurologist with a specialty in peripheral neuropathy. Exercise such as yoga, swimming, walking, etc. also help improve balancing and overall functioning. All the best, Debbie

dwm26

When my neuropathy got worse about 2 months after finishing treatment my onc said that wasn't normal and sent me to a neurologist. Turned out I also had cervical spondylosis So if you are not getting any improvement There may be another underlining condition that the chemo made worse.

I still don't know how much of my tingling and numbness was from neuropathy and how much was from cervical spondylosis Either way acupuncture helped

gatornp

I forgot to tell you about a great new book, PERIPHERAL NEUROPATHY: When the Numbness, Weakness, and Pain Won't Stop. Written by Norman Latov, MD, PhD, American Academy of Neurology, 2007. It's 125 pg paperback book that has got some great info. Hope this helps.

mont1234

My last chemo was in March of 07 and I my legs and feet still hurt

MAG

In 04 diagnosed with breast cancer I could not finish all of my rounds with chemo. The neuropathy was so bad - my toenails and fingernails fell off - I would cry in the middle of the night with my feet burning with pain. I could barely walk. After chemo the pain started to subside. After my surgery in 07 with stage IIIc OVCA I cried when the onc told me the chemo would be the same regimen as with breast cancer. This time, however, he put me on Lyrica. For me, Lyrica was wonderful - no side effects and the neuropathy was very manageable. I am 2 yrs now NED - I still get tingly in my toes and they go numb. But it is tolerable.
I feel so sorry for you to have to go thru this pain. All the best to you.

Mary Ann

capechic

Hi PeacefulZen,

I too developed Peripheral Neuropathy. It got at its worst 3-6 months after last chemo in March '07. My CIPN was severe and left me without walking abilities or use of both arms. It has been 2.5 years since last treatment and 2 years and 10 months since its first sign (right after 2nd session). I still have balance issues, lots of pain, tingling, sporadic shooting pains, numbness and loss of coordination but I am now able to walk and use my hands!!.....I am optimistic and aware of how much better I am today, and keep visualizing me running on the beach!!
I admire your courage to play tennis!! It must be a huge struggle.
What I have done that has helped the most is: hyperbaric chamber (25 sessions) it worked wonders on my balance and well being in general. I have also done juice fasts and detox programs.
I take Standard Process products, specially Neuroplex and Neurotrophin. And will be trying some L-Carnitine, ALC (Alpha Lipoic Acid) and Glutamine when I am done juicing.
Hang in there, it will get tough and depressing but it will little by little get better. It can be very frustrating. You are not alone. Be kind to your body and nourish it properly.

karenst

Just remembered I forgot to mention a topical cream I get at the health food store that does off some relief. It is called Topricin foot therapy cream. A little spendy but I think it is worth it.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

OCNA: @JanetJackson ABC Special with Janet Jackson tonight at 10:00pm EST http://www.ovariancancer.org/2009/11/18/abc-special-with-janet-jackson/

OCNA: You are invited to our Virtual Holiday Dinner Party! http://www.ovariancancer.org/party/

OCNA: We want to serve our community better. Please help us by taking a quick moment to fill out this survey. Thanks! http://tinyurl.com/yg634a4

OCNA: Kathy Bates opens up about her struggle with ovarian cancer (The Commercial Appeal) ... http://tinyurl.com/yj72xa5

OCNA: Nov.16 ice-skating show! Look for us at our booth as we continue to raise awareness of ovarian cancer Get tixs http://tinyurl.com/yf72hkm

Group leaders

You