Neuropathy
I have had neuropathy since my second chemo treatment last fall. At first it was mild pain, followed by worse pain, and evolved into tingling numbness in my feet and hands. And horrible coldness in my extremeties. I could barely walk – I felt that I was a danger to myself. I loved it when a store had a cart that I could lean on to balance myself. Sometimes I would take a walk around the periphery of the grocery store parking lot using my cart! In an article about Gabby Giffords, I read that these cart are being used in rehab hospitals!
So I did a lot of research and started a regimen that seems to have improved the neuropathy from a 10 to about a 3.
I had acupuncture 10 times over a period of about 4 months.
I did physical therapy for stamina since I could not take walks, use a treadmill, nor even ride a recumbent bike (I never knew where my feet were). While there, I also worked on balance because most people my age have poor balance.
Then I read about- and my doctor suggested- gabapentin/Neurontin, but I was reluctant to put such a serious drug into my body since I have had so many reactions to so many substances. I found an article in CURE magazine that said this drug could be made into a cream by a compounding pharmacy so my doctor wrote me a script. I use it twice daily. Very expensive but my insurance covers @70%.
Then my podiatrist told me about METANX - he uses it for many patients with diabetic neuropathy. It is considered a neutroceutical. He told me to try it for ten weeks and if I had no results, stop it. Expensive and not covered at all by insurance.
Then my GP put me on Cymbalta. She thought that it might give me some relief even though I do not have pain. It is cheap — and is covered by insurance. It figures.
I also use a massager and a TENS unit to stimulate circulation.
Well, after ten weeks, something has worked! I am not sure what, or if it was a combination, but I am a lot better. I would like to use fewer meds, and think I may stop the Cymbalta soon as I do not have any pain.
The hypersensitivity on the bottoms of my feet has not gone away, but is bearable as long as I never walk barefooted and wear socks and sneakers on the beach.
Hope someone finds this helpful.
Comments
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Thanks for information
JoAnn, you definitely have had a terrible experience. I have some lingering neuropathy in my toes. It never was severe like yours. I took some B vitamins awhile back. Now I am just living with it.
Do you think that neuropathy will always be there to some degree? Do you think it's worth me trying something at this point? I finished initial 6 rounds of carbo/taxol in Feb "08 and then had 7 weeks of carbo finished in nov'10.
Thanks. Mary Ann0 -
one yeardaisy366 said:Thanks for information
JoAnn, you definitely have had a terrible experience. I have some lingering neuropathy in my toes. It never was severe like yours. I took some B vitamins awhile back. Now I am just living with it.
Do you think that neuropathy will always be there to some degree? Do you think it's worth me trying something at this point? I finished initial 6 rounds of carbo/taxol in Feb "08 and then had 7 weeks of carbo finished in nov'10.
Thanks. Mary Ann
Mary Ann, I have heard that if neuropathy is not gone in a year (after chemo), it is your "friend" for life. Unfortunately, the few people I know who have had it have proved that to be true.
I see from your profile that you are a "letting go" work in progress. Ditto.0 -
7 months until I know, I guess.....JoAnnDK said:one year
Mary Ann, I have heard that if neuropathy is not gone in a year (after chemo), it is your "friend" for life. Unfortunately, the few people I know who have had it have proved that to be true.
I see from your profile that you are a "letting go" work in progress. Ditto.
I finished 6 rounds of carbo/taxol in January this year (second recurrence adenocarcinoma - first recurrence treated with radiotherapy in 2008). I still have some slight neuropathy in the balls of my feet and a couple of toes on each foot. It is the "numb" kind, so not painful and most of the time I don't know it's there unless I think about it, which I guess is good!
But I was hoping that it would get gradually better, so it is useful to know about the "one year" milestone. I am currently NED (had my 3 month follow up yesterday and the oncologist was happy with everything), so I am hoping that I have either beaten this darned thing, or, if not, that I get a long remission. I am also hoping that the neuropathy gets better, as I would like to keep carbo/taxol in my armoury for the future!
Off to research B vitamins now...
Kindest wishes
Helen0 -
neuropathyHellieC said:7 months until I know, I guess.....
I finished 6 rounds of carbo/taxol in January this year (second recurrence adenocarcinoma - first recurrence treated with radiotherapy in 2008). I still have some slight neuropathy in the balls of my feet and a couple of toes on each foot. It is the "numb" kind, so not painful and most of the time I don't know it's there unless I think about it, which I guess is good!
But I was hoping that it would get gradually better, so it is useful to know about the "one year" milestone. I am currently NED (had my 3 month follow up yesterday and the oncologist was happy with everything), so I am hoping that I have either beaten this darned thing, or, if not, that I get a long remission. I am also hoping that the neuropathy gets better, as I would like to keep carbo/taxol in my armoury for the future!
Off to research B vitamins now...
Kindest wishes
Helen
Hi Jo Ann,
Thanks for all of the information. When I read your post I thought I was reading my own. I have just hit the 1 year mark and I really am having a hard time with neuropathy. I hsve been on neurontin it helps a little. I am going to PT to gain strength and balance. But I am completely frustrated with the fact that I have such a hard time walking. A while back my docs told me about the 1 year plan and kept re assuring me that it would be gone by now. Now I got the word that it is something that I may have to live with.
I have been exploring new areas and accupuncture was one. Again thanks for the info and I hope you are feeling better and it never comes back for you.
SUE0 -
Neuropathysusafina said:neuropathy
Hi Jo Ann,
Thanks for all of the information. When I read your post I thought I was reading my own. I have just hit the 1 year mark and I really am having a hard time with neuropathy. I hsve been on neurontin it helps a little. I am going to PT to gain strength and balance. But I am completely frustrated with the fact that I have such a hard time walking. A while back my docs told me about the 1 year plan and kept re assuring me that it would be gone by now. Now I got the word that it is something that I may have to live with.
I have been exploring new areas and accupuncture was one. Again thanks for the info and I hope you are feeling better and it never comes back for you.
SUE
I deeveloped neuropathy after being treated with carbo/plat. I had a reaction to taxol. I had was was a breast cancer patient 11 years ago and had adriamycin, cytoxan and taxotere. With serous I had carbo/plaxo and taxol. I developed severe neuropathy; found these oversized easy spirit sneakers (ugly but helpful) and I could not even sleep at night becaause of burning pain. I studied it alot and found the best combo to be lyrica, pain medication and ativan. I've also studied the research and this seems to be the best. I tried cymbalta which worked well but I couldn't sleep on cymbalta. The pain improved after 2 years and I wore small heels to my daughters wedding. My Gyn Onc told me that it maxes at six months and improves to 1 year and then labels off. I found that not to be true as mine as steadily improved. Don't give up. I tried some type of machine that was a stimulator that did not help. Cymbalta is a SSRI and SNRI and blocks pain in the spinal cord. Some women have found effexor to have similary results.
I may have had a slight reaction to lyrica but I was on very high doses. I went to a pain management specialist and found them to be helpful. I never tried accupuncture but some women have found it helpful. Right now I am on topotecan for chemo and please excuse my chemo brain writing.
Chemo and neuropathy can be cumulative. I was shocked as I never had one pain after breast cancer treatment. We are all different. I think there will be alot of hope with the drugs and neuropathic treatments. PS I have learned not to be afraid of medication. I was never much one for medicines but I have learned I need to focus on coping. And, gabapentin is much less$ than lyrica and the key is to use it very slowly over time.
Thanks,
Diane0 -
It is so strange how these different meds affect us each differently. I have to take Cymbalta at night because it made me so tired, yet it kept you awake, Diane! Glad to hear you are continuing to improve even after two years. That gives me hope.Songflower said:Neuropathy
I deeveloped neuropathy after being treated with carbo/plat. I had a reaction to taxol. I had was was a breast cancer patient 11 years ago and had adriamycin, cytoxan and taxotere. With serous I had carbo/plaxo and taxol. I developed severe neuropathy; found these oversized easy spirit sneakers (ugly but helpful) and I could not even sleep at night becaause of burning pain. I studied it alot and found the best combo to be lyrica, pain medication and ativan. I've also studied the research and this seems to be the best. I tried cymbalta which worked well but I couldn't sleep on cymbalta. The pain improved after 2 years and I wore small heels to my daughters wedding. My Gyn Onc told me that it maxes at six months and improves to 1 year and then labels off. I found that not to be true as mine as steadily improved. Don't give up. I tried some type of machine that was a stimulator that did not help. Cymbalta is a SSRI and SNRI and blocks pain in the spinal cord. Some women have found effexor to have similary results.
I may have had a slight reaction to lyrica but I was on very high doses. I went to a pain management specialist and found them to be helpful. I never tried accupuncture but some women have found it helpful. Right now I am on topotecan for chemo and please excuse my chemo brain writing.
Chemo and neuropathy can be cumulative. I was shocked as I never had one pain after breast cancer treatment. We are all different. I think there will be alot of hope with the drugs and neuropathic treatments. PS I have learned not to be afraid of medication. I was never much one for medicines but I have learned I need to focus on coping. And, gabapentin is much less$ than lyrica and the key is to use it very slowly over time.
Thanks,
Diane
Although I am not afraid, per se, of medications, I am leery because in the last few years, I have had so many allergic reactions to so many different things. Just the other day I had a reaction to the tape the nurse put on me after flushing my port! Every time I put a new medicinal-type substance in my body, I wait with bated breath to see what will happen. Some of my reactions have been so severe that I ended up in the ER. One of the worst was my allergic reaction to the stuff they put all over you before surgery. The entire trunk of my body was a mass of huge hives and I had to go on steroids 4 days after my hysterectomy last summer. I thought I would go crazy from the itching.
I wonder if all these bizarre reactions over the last few years were telling me that something was askew in my body?
Sue, the part of acupuncture that has helped most recently with neuropathy has been something called Moxa, (short for moxabustion), which is a method of heating acupoints with a common herb called mugwort. I see a noticeable difference afterwards.
How is the PT working for you?
Someone told me that her Pilates instructor has worked with her on her neuropathy. I may look into that.
I guess I am fortunate that I no longer have pain in my feet and hands, because like you said Diane, it was awful. I wear a pair of oversized ugly sneakers to walk down to the beach...they are the only thing that keeps the sand away from the bottoms of my feet which are so hypersensitive. What I have also found is wonderful are the fleece lined CROCS - they do not bind your feet in any way.
Oh, another thing that I was told was Acetyl-L-carnitine - "an amino acid (a building block for proteins) that is naturally produced in the body. It helps the body produce energy."
Helen, if you find anything that works on this numbness or the hypersensitivity, let me know. I actually had someone tell me I just need to "toughen up" the bottoms of my feet! Yeah, right, sure.0 -
BEST WEB SITES ON NEUROPATHYJoAnnDK said:It is so strange how these different meds affect us each differently. I have to take Cymbalta at night because it made me so tired, yet it kept you awake, Diane! Glad to hear you are continuing to improve even after two years. That gives me hope.
Although I am not afraid, per se, of medications, I am leery because in the last few years, I have had so many allergic reactions to so many different things. Just the other day I had a reaction to the tape the nurse put on me after flushing my port! Every time I put a new medicinal-type substance in my body, I wait with bated breath to see what will happen. Some of my reactions have been so severe that I ended up in the ER. One of the worst was my allergic reaction to the stuff they put all over you before surgery. The entire trunk of my body was a mass of huge hives and I had to go on steroids 4 days after my hysterectomy last summer. I thought I would go crazy from the itching.
I wonder if all these bizarre reactions over the last few years were telling me that something was askew in my body?
Sue, the part of acupuncture that has helped most recently with neuropathy has been something called Moxa, (short for moxabustion), which is a method of heating acupoints with a common herb called mugwort. I see a noticeable difference afterwards.
How is the PT working for you?
Someone told me that her Pilates instructor has worked with her on her neuropathy. I may look into that.
I guess I am fortunate that I no longer have pain in my feet and hands, because like you said Diane, it was awful. I wear a pair of oversized ugly sneakers to walk down to the beach...they are the only thing that keeps the sand away from the bottoms of my feet which are so hypersensitive. What I have also found is wonderful are the fleece lined CROCS - they do not bind your feet in any way.
Oh, another thing that I was told was Acetyl-L-carnitine - "an amino acid (a building block for proteins) that is naturally produced in the body. It helps the body produce energy."
Helen, if you find anything that works on this numbness or the hypersensitivity, let me know. I actually had someone tell me I just need to "toughen up" the bottoms of my feet! Yeah, right, sure.
Dear Jo Ann and Others,
What I most feared in my taxol/carbo regimen was the possibility of serious neuropathy.
So my integrative doctor prescribed a few supplements and my own research dislosed some others. After four rounds, so far (knock on wood!), I've had no neuropathy at all.
The supplements are:
Glutamine (an amino acid, one teaspoon in a glass of water, three times a day, to be taken the day before chemo and first four days OF chemo). Protects the intestines and minimizes likelihood of neuropathy.)
Vitamin E succinate (200 milligrams, twice a day--start a week before chemo and continue through chemo)
Just those two alone seemed to work. But there are others often recommended, with no toxic side effects, cited in clinical studies, that show efficacy even AFTER chemo:
Alpha lipoic acid (about 600 mgs a day)
Make sure your Vitamin B-12 levels are at least 500
Make sure your Vitamin D levels are at least 40; if not, supplement with Liqui-D drops.
Nerve-Support Formula (you can find it online).
Best,
Rosey0 -
thanksRoseyR said:BEST WEB SITES ON NEUROPATHY
Dear Jo Ann and Others,
What I most feared in my taxol/carbo regimen was the possibility of serious neuropathy.
So my integrative doctor prescribed a few supplements and my own research dislosed some others. After four rounds, so far (knock on wood!), I've had no neuropathy at all.
The supplements are:
Glutamine (an amino acid, one teaspoon in a glass of water, three times a day, to be taken the day before chemo and first four days OF chemo). Protects the intestines and minimizes likelihood of neuropathy.)
Vitamin E succinate (200 milligrams, twice a day--start a week before chemo and continue through chemo)
Just those two alone seemed to work. But there are others often recommended, with no toxic side effects, cited in clinical studies, that show efficacy even AFTER chemo:
Alpha lipoic acid (about 600 mgs a day)
Make sure your Vitamin B-12 levels are at least 500
Make sure your Vitamin D levels are at least 40; if not, supplement with Liqui-D drops.
Nerve-Support Formula (you can find it online).
Best,
Rosey
Thanks for this info Rosie. I wish I had had it when I started chemo. And honestly, I was too sick and debilitated during chemo to do any research. Also, like a thief in the night, the neuropathy came on slowly. The worst time with it was after I finished chemo.0 -
Thank you for the info. I amRoseyR said:BEST WEB SITES ON NEUROPATHY
Dear Jo Ann and Others,
What I most feared in my taxol/carbo regimen was the possibility of serious neuropathy.
So my integrative doctor prescribed a few supplements and my own research dislosed some others. After four rounds, so far (knock on wood!), I've had no neuropathy at all.
The supplements are:
Glutamine (an amino acid, one teaspoon in a glass of water, three times a day, to be taken the day before chemo and first four days OF chemo). Protects the intestines and minimizes likelihood of neuropathy.)
Vitamin E succinate (200 milligrams, twice a day--start a week before chemo and continue through chemo)
Just those two alone seemed to work. But there are others often recommended, with no toxic side effects, cited in clinical studies, that show efficacy even AFTER chemo:
Alpha lipoic acid (about 600 mgs a day)
Make sure your Vitamin B-12 levels are at least 500
Make sure your Vitamin D levels are at least 40; if not, supplement with Liqui-D drops.
Nerve-Support Formula (you can find it online).
Best,
Rosey
Thank you for the info. I am hoping to go away after I am done; however, the neuropathy first started right after chemo. I think the doctor cut a nerve.
I am taking L-Glutamine 10 gr twice per day.0 -
NeuropathyFayard said:Thank you for the info. I am
Thank you for the info. I am hoping to go away after I am done; however, the neuropathy first started right after chemo. I think the doctor cut a nerve.
I am taking L-Glutamine 10 gr twice per day.
I tried the glutamine and found it not to be helpful. I do best with lyrica. I too hate medications; I've never beeen one to take them. But I decided I have to cope and that is what is most important. I've learned to try a medication and see if it helps. It was tough giving up that "I'm so tough I don't need anything attitude."
Love,
Diane0 -
medsSongflower said:Neuropathy
I tried the glutamine and found it not to be helpful. I do best with lyrica. I too hate medications; I've never beeen one to take them. But I decided I have to cope and that is what is most important. I've learned to try a medication and see if it helps. It was tough giving up that "I'm so tough I don't need anything attitude."
Love,
Diane
Diane, my problem is not giving up that "tough" attitude, but being willing to gamble that I will not have a bad reaction to a medication. I had a new prescription a few weeks ago, an antihistamine, and woke up in the middle of the night feeling like my head was exploding. I actually felt compelled to put my hand on top of my head and hold down. Then I started hallucinating. It was frightening and there was nothing I could do.0 -
JoAnnJoAnnDK said:meds
Diane, my problem is not giving up that "tough" attitude, but being willing to gamble that I will not have a bad reaction to a medication. I had a new prescription a few weeks ago, an antihistamine, and woke up in the middle of the night feeling like my head was exploding. I actually felt compelled to put my hand on top of my head and hold down. Then I started hallucinating. It was frightening and there was nothing I could do.
Hey, about the head exploding experience. I know that high blood pressure can cause that effect from antihistamines. Is it possible your blood pressure has gone up. The hallucination could have been a sign of an allergic reaction I think. What did your doctor say?????? I know I would have been on the phone in a heartbeat.
Hope no ill effects from that.
Claudia0 -
JoAnnJoAnnDK said:meds
Diane, my problem is not giving up that "tough" attitude, but being willing to gamble that I will not have a bad reaction to a medication. I had a new prescription a few weeks ago, an antihistamine, and woke up in the middle of the night feeling like my head was exploding. I actually felt compelled to put my hand on top of my head and hold down. Then I started hallucinating. It was frightening and there was nothing I could do.
Are you still on chemo? There is a syndrome where you get a headache; up the spinal cord to the head. It is a neuropathy and very frightening. I was thinking you could start lyrica really low, 50 mgm and move up. Are you allergic to other things? I did not mean to say you needed to give up your tough guy attitude. Allergies are scary; but this sounds like the neuropathy they told me I had; very frightening. When I get it I can't move. I think Linda experienced it. There are other drugs they sometimes use. I wonder if you could see a pain management specialist? I hate seeing you bound up by neuropathy because I know how horrible it is.
I found cymbalta very helpful but I couldn't sleep. I've read effexor is helpful too.
Off to chemo again. Shed alot of tears this weekend. My side hurt where the tumor is in the liver. Must be tumor flare.
Love,Diane0 -
answersSongflower said:JoAnn
Are you still on chemo? There is a syndrome where you get a headache; up the spinal cord to the head. It is a neuropathy and very frightening. I was thinking you could start lyrica really low, 50 mgm and move up. Are you allergic to other things? I did not mean to say you needed to give up your tough guy attitude. Allergies are scary; but this sounds like the neuropathy they told me I had; very frightening. When I get it I can't move. I think Linda experienced it. There are other drugs they sometimes use. I wonder if you could see a pain management specialist? I hate seeing you bound up by neuropathy because I know how horrible it is.
I found cymbalta very helpful but I couldn't sleep. I've read effexor is helpful too.
Off to chemo again. Shed alot of tears this weekend. My side hurt where the tumor is in the liver. Must be tumor flare.
Love,Diane
No, Diane, I am no longer on chemo (since December) and have no pain. Just this awful numb tingling. I have really had no headaches to speak of. Taking Lyrica or Cybalta for neuropathic pain seems like overkill since I do not have pain. I am now weaning myself off of the Cymbalta per doctor's instructions. My neuropathy is more annoying and inconvenient than anything else.
Yes, I am allergic or sensitive to many things. And I never know what I will react to, which is why I am leery.
Needless to say, my doctor told me to stop taking the antihistamine. I had the same bizarre reaction to codeine and to benadryl.0 -
neuropathyJoAnnDK said:answers
No, Diane, I am no longer on chemo (since December) and have no pain. Just this awful numb tingling. I have really had no headaches to speak of. Taking Lyrica or Cybalta for neuropathic pain seems like overkill since I do not have pain. I am now weaning myself off of the Cymbalta per doctor's instructions. My neuropathy is more annoying and inconvenient than anything else.
Yes, I am allergic or sensitive to many things. And I never know what I will react to, which is why I am leery.
Needless to say, my doctor told me to stop taking the antihistamine. I had the same bizarre reaction to codeine and to benadryl.
I'd still see pain management, an allergiest, or neurologist. Jusst what you need another Doctor to do! Neuropathy made my feet feel as if I had caught my feet in a car door. Like walking on hot coals. I am here if you need me. Your pain is signficant no matter how insignficant you think it is.
Love, Diane0 -
no painSongflower said:neuropathy
I'd still see pain management, an allergiest, or neurologist. Jusst what you need another Doctor to do! Neuropathy made my feet feel as if I had caught my feet in a car door. Like walking on hot coals. I am here if you need me. Your pain is signficant no matter how insignficant you think it is.
Love, Diane
But Diane, I have NO pain! Insignificant or otherwise. I have a good friend who is a pain management MD and have talked to him about this. Apparently there ARE things that can be done for neuropathic pain. But I have no pain!
I have been to an allergist too. Unfortunately, my "reactions" seem to be just that...reactions or sensitivities rather than true allergies. Not responsive to desensitization. Unpredictable.0 -
NeuropathyJoAnnDK said:no pain
But Diane, I have NO pain! Insignificant or otherwise. I have a good friend who is a pain management MD and have talked to him about this. Apparently there ARE things that can be done for neuropathic pain. But I have no pain!
I have been to an allergist too. Unfortunately, my "reactions" seem to be just that...reactions or sensitivities rather than true allergies. Not responsive to desensitization. Unpredictable.
I read where someone is using stem cells to regrow damaged nerves. It might be something to think about in the future. I keep looking for answers!
Diane0
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