Neuropathy After Chemo
Comments
-
NeuropathyMick123 said:Neuropathy
Like many I have had and still do have the tingling in feet and toes. I've learned much about it just from reading the posts here and I thank you all for it. As I understand it, it's the platin drugs that are the cause. In any case, a Doctor friend as well as a friendly pharmacist and nurse have all suggested B Complex vitamins. No results to report as yet as I just started taking it but I am hopeful and will keep you informed if there is progress. Thanks again.
Mick
I still have neuropathy in my hands and feet after finishing up six months of FOLFOX chemo this past March. I too was told to try B6 vitamins by my first oncologist in NJ, which didn't do anything. I am now doing my follow ups at Duke Medical in NC and my new oncologist told me to give glutamine a try. She said there's not a whole lot of research on it but didn't think it would hurt. I've been taking the glutamine for over a month now and I think it is helping a bit. The pins and needles in my hands aren't as intense and my dexterity seems to be improving. There is a tiny bit of improvement in my feet but not enough to get me to jump up and down for joy just yet.0 -
The old foot neuropathytodhunter said:Foot neuropathy and Teva Flip Flops!
Cancer and its devastation create a great empathy for humanity. In the last chemo treatment I was told "Get another 10%" off the possibility of recurrence. That meant extra toxicity coursing through my veins (they get to use rubber gloves!). I quit half way through, it was horrible! 2.5 years after last chemo - CT last week - Clean bill of health! Have a colonoscopy!
My main issue is the sole of my feet. Initially entire sole felt like slabs, now from arch forward. When in shoes it feels like walking on corn cobs or ball bearings - but only when on hard, cold floors or when wearing shoes. Hmmm.... Yea, that's it ... I don' walk on hard, cold floors without wearing my wonderful Teva flip flops (they are SOFT!). I don't wear shoes either. My Berkenstocks also cause NO discomfort. The good news is that I have always worn that foot gear, now I just have to explain myself when in formal meetings. Really loose shoes aren't too bad. Normal fit shoes, tennis shoes don't work without discomfort. I never walk around the house barefoot.
I also find that my tpyign has issues. Like my fingers move at fidfernt speeds. I guess that the neuropathy, in my fingertips or my brain have been permanently affected my coordination. I was always a good spealer, but that seems to have gone by the waysde. Buck up, put on your flip flops, grow long hair and live life to its fullest. Best wishes to you! Viva Teva (no I don't own stock).
Enjoyed your humor today....just hunting around on the internet for some relief for my feet...your comments helped the most as there really doesn't seem to be any definitive treatments medically for complete relief. I've noticed this summer that my flipflops(some I've had for 3 years are the most comfortable gear for my feet. Sneakers with socks are very uncomfortable too. Congrats on your clean bill of health. I'm going to look into a pair of Berkenstocks let my hair grow long again and treasure all that God has given me!!!0 -
foot neuropathyPJ Sermons said:In the same boat
Been cancer free for a year now, but not free of the after effects. I too have server pain in my joints/bones and feet. My job requires me to be on my feet a lot and after about 2 hours of standing I am in so much pain some days I am in tears. They feel like I am walking on a bed of broken glass after someone has smashed them with a large hammer. And yes, I also get the look of disbelief from people around, they just don't have a clue. It is 12:30 in the morning and I can not sleep because of the stabbing pain in my joints and muscles, it feels like someone is standing over me stabbing me with an icepic, horrible pain.
Been to a Neuro Dr. and he has me taking B12 shots (my husband gives them to me) There are reports that low levels of vitiam B12 makes neuropathy worse, well I will give a shot (excuse the pun), as of yet have not seen much change, if any.
My empathy to you!!!! I have my good days and bad days with my feet. Your description of the discomfort is right on. I take Neurontin 2-3 times a day, but especially at night 1 hr. before bedtime along with 1-2 Tramadol. It relieves the discomfort and I sleep like a baby. The Tramadol also helps with the muscular pain. I can take the Tramadol during the day when needed also and it does,t cause drowsiness........there is no reason for you to be in so much pain.....ask or tell your Dr. if neccessary that you would like to try these meds. Feel better PJ!!!!0 -
NeuropathyMick123 said:Neuropathy
Like many I have had and still do have the tingling in feet and toes. I've learned much about it just from reading the posts here and I thank you all for it. As I understand it, it's the platin drugs that are the cause. In any case, a Doctor friend as well as a friendly pharmacist and nurse have all suggested B Complex vitamins. No results to report as yet as I just started taking it but I am hopeful and will keep you informed if there is progress. Thanks again.
Mick
Hi Mick, Like you, I took Folfox (for stage 3 colon cancer). I had large doses of oxiloplatin so nerve damage occurred fairly soon. I was surprised that the sensations of numbness and pain actually increased after stopping my treatments. My oncologist prescribed Gabapentin, and by accident, I found that by adding Cymbalta the pain went away!!! The combination of the two did the trick. I am one year out and am cutting back on the Gabapentin as the pain is permanently gone but numbness, especially in my feet is chronic. Hey, I can live with it as long as the cancer stays away! I hope that this helps you or anyone who might be experiencing pain. My doctor uses this regime on all of his neuropathy patients now! Good luck.0 -
Pain with neuropathysue K said:You have my sympathy - I
You have my sympathy - I feel exactly the same, with constant aches and pains all over. I am free of my cancer just now, but it's hard to feel happy about it when the pain goes on.
As you say, no-one seems to understand, except the good people on this forum.
I don't know how long it goes on, but it would be good to get some relief.
Good luck to you, and God bless
Sue
Sue, check out my posting to Mick and see if this is something worth trying...it was something that my doctor and I just happened to stumble upon and it really helped me. My oncologist now uses this regime on any of his patients that are interested. Good luck!0 -
I am a 25 year cancer survivor and I have neuropathy in my feet and hands and who knows where else, have alot of side effects of treatments long ago.
I myself have had the neuropathy get worse but it has stabalized now and has left me with a numb foot and numbess and tingling in several areas of my legs. My hands too, pain in them as well.
You have to remember though that everyone is different after treatments, depends on so many things like what drugs were taken, your basic health to begin with, blah blah blah so read the entries for interest sake and to absorb what others have experienced and use the info to run by your doc and check with your own symptoms but do remember that just because one person like me had this type of symptom last for years that your brother's situation might be totally different.
I am actually going to see a new neurologist for the first time this Friday and so I will see what treatments might be suggested, if any. I will try to remember to post what she said for your information. I have chemo brain so if I don't remember to post, give me a jingle through person messaging on this site and I will share what she has said.
All the best to you and your brother.
Blessings,
Bluerose0 -
G'day Bluerosebluerose said:I am a 25 year cancer survivor and I have neuropathy in my feet and hands and who knows where else, have alot of side effects of treatments long ago.
I myself have had the neuropathy get worse but it has stabalized now and has left me with a numb foot and numbess and tingling in several areas of my legs. My hands too, pain in them as well.
You have to remember though that everyone is different after treatments, depends on so many things like what drugs were taken, your basic health to begin with, blah blah blah so read the entries for interest sake and to absorb what others have experienced and use the info to run by your doc and check with your own symptoms but do remember that just because one person like me had this type of symptom last for years that your brother's situation might be totally different.
I am actually going to see a new neurologist for the first time this Friday and so I will see what treatments might be suggested, if any. I will try to remember to post what she said for your information. I have chemo brain so if I don't remember to post, give me a jingle through person messaging on this site and I will share what she has said.
All the best to you and your brother.
Blessings,
Bluerose
Hope the neurologist can help, I went to one a few years ago but all he did was nerve conductivity tests and he described them as hard to interpret. The neuropathy in my hands and feet has gotten much worse. I have tried lyrica and endep but could not afford the former at the dose I needed and had serious side effects with the latter. My psoriatic arthritis is in a major flare at the moment as I had to go off arava as it was compromising my liver and had a lot of side effects .I have been off treatment(docs orderes)till my liver functions improve. Whilst on methotrexate and arava my protein loss thru my kidneys has been double the permitted loss at around 400 mg a day. Since I have been off meds it has risen to 1400 mg a day. My nephrologist now suspects some form of vasculitis or lupus. I am having a kidney biopsy this friday so hopefully I can get back on some sort of control. At the moment I am in a lot of pain and am having breathing problems. All the best to you,Hugs ,Ron.0 -
Hey Ronron50 said:G'day Bluerose
Hope the neurologist can help, I went to one a few years ago but all he did was nerve conductivity tests and he described them as hard to interpret. The neuropathy in my hands and feet has gotten much worse. I have tried lyrica and endep but could not afford the former at the dose I needed and had serious side effects with the latter. My psoriatic arthritis is in a major flare at the moment as I had to go off arava as it was compromising my liver and had a lot of side effects .I have been off treatment(docs orderes)till my liver functions improve. Whilst on methotrexate and arava my protein loss thru my kidneys has been double the permitted loss at around 400 mg a day. Since I have been off meds it has risen to 1400 mg a day. My nephrologist now suspects some form of vasculitis or lupus. I am having a kidney biopsy this friday so hopefully I can get back on some sort of control. At the moment I am in a lot of pain and am having breathing problems. All the best to you,Hugs ,Ron.
Hugs back. I am so sorry to hear about your pain and breathing issues. I can empathize as I have a lot of pain too and my breathing issues are better than they used to be but we are into hot humid weather and it's not helping. I am just so sorry to hear of the complications too that you have that prevents certain med use that could help the pain. I have that now too, ocmplex medical history and lots of procedures and meds now off the table for me. It's scarey when options start becoming less and less. I have my faith, thank goodness.
I will let you guys know what the neurologist says but there is only so much they can do and I am dreading that conductivity test cause I have a pacemaker (damage to my heart from a chemo drug, grrr). It's complicated so I know what you are going through Ron.
Take care.
Big hugs
Bluerose0 -
Neuropathy as a side effect
Hi!I had a friend who had trouble with drugs and at the age of 20 he went to a rehab center.When asked why did he choose drugs his answer was "because they are reducing the pain".After a medical check doctors found out that he was suffering of testicular cancer and he didn't say anything about his problem because he was ashame.Finally he went to chemotherapy and after a year his problem seemed to be solved.After few days he claimed that he don't feel his feets and he has numbness.The doctor put the diagnose of neuropathy and he also told him that in some cases it appears as a chemotherapy side effect.He took some pills and now he is completely cured.0 -
What pills?Crazysony said:Neuropathy as a side effect
Hi!I had a friend who had trouble with drugs and at the age of 20 he went to a rehab center.When asked why did he choose drugs his answer was "because they are reducing the pain".After a medical check doctors found out that he was suffering of testicular cancer and he didn't say anything about his problem because he was ashame.Finally he went to chemotherapy and after a year his problem seemed to be solved.After few days he claimed that he don't feel his feets and he has numbness.The doctor put the diagnose of neuropathy and he also told him that in some cases it appears as a chemotherapy side effect.He took some pills and now he is completely cured.
Can you find out what the pills were he took. From the posts you can see that not a lot seems to work.0 -
Hi CrazysonyCrazysony said:Neuropathy as a side effect
Hi!I had a friend who had trouble with drugs and at the age of 20 he went to a rehab center.When asked why did he choose drugs his answer was "because they are reducing the pain".After a medical check doctors found out that he was suffering of testicular cancer and he didn't say anything about his problem because he was ashame.Finally he went to chemotherapy and after a year his problem seemed to be solved.After few days he claimed that he don't feel his feets and he has numbness.The doctor put the diagnose of neuropathy and he also told him that in some cases it appears as a chemotherapy side effect.He took some pills and now he is completely cured.
That is great news that your friend is doing so well, thanks for the post.
All things are possible
Hondo0 -
Hi Jsonjson_2011 said:Also nerve damage can occure
Also nerve damage can occure from radiation too!
Very correct, I like many live with nerve damage, mine is on the left side of my face from being over radiated, just another part of the new normal we learn to live with.
Hondo0 -
I'm new and same issuesbluerose said:I am a 25 year cancer survivor and I have neuropathy in my feet and hands and who knows where else, have alot of side effects of treatments long ago.
I myself have had the neuropathy get worse but it has stabalized now and has left me with a numb foot and numbess and tingling in several areas of my legs. My hands too, pain in them as well.
You have to remember though that everyone is different after treatments, depends on so many things like what drugs were taken, your basic health to begin with, blah blah blah so read the entries for interest sake and to absorb what others have experienced and use the info to run by your doc and check with your own symptoms but do remember that just because one person like me had this type of symptom last for years that your brother's situation might be totally different.
I am actually going to see a new neurologist for the first time this Friday and so I will see what treatments might be suggested, if any. I will try to remember to post what she said for your information. I have chemo brain so if I don't remember to post, give me a jingle through person messaging on this site and I will share what she has said.
All the best to you and your brother.
Blessings,
Bluerose
Hi,
I saw your post I just signed on to the cancer network surivors network. Its something ive wanted to do but havent gotten around to it. Ive been fighting cancer for over 6 years with the rare diagnosis of Nueroblastoma (Mostly almost always found in children under 10). Ive had radiation twice to the abdomen area and 4 major surgeries and am having the same feelings in my body. I dont talk to any other cancer survivors so its refreshing to get on this site. I saw a nuerologist the other day they did an MRI came out negative. But I also get random limbs that jerk some times which scares me. I was wondering if you or anyone you have talked to get this as well. I have allot of stress I mean allot I really need some help for panick attacks so I dont know if that has something to do with it or not.
Also they Nuerologist did a basic exam and I passed with flying colors she just wants to put me on Nuerotin and call it a day. Just wondering if maybe you had the same from your doc.
Thank you hope your doing well0 -
Balance issues and nerve damage in the feet.Hondo said:Hi Json
Very correct, I like many live with nerve damage, mine is on the left side of my face from being over radiated, just another part of the new normal we learn to live with.
Hondo
If you have neuropathy in the feet have you ever had issues with balance? Like you are walking along and all of a sudden you just tilt over to the side? You don't trip on anything and there is no apparent reason for the tilt to the side but it happens?
I went to see a neurologist about neuropathy and I just happened to mention the falling over and she said that it is no wonder because apparently nerve damage in the feet can produce this lack of balance. It is something about the fact that the nerves have been damaged and parts of the feet are numb so your spatial concepts are all off - in other words you don't know exactly where your whole foot is at any given time - or part of it -due to the damage. It makes total sense but this is the first time a doctor has tied my balance issue with neuropathy in the feet.
Let me know if you have this issue if you have a minute?
Blessings,
Bluerose0 -
Same issue herebluerose said:Balance issues and nerve damage in the feet.
If you have neuropathy in the feet have you ever had issues with balance? Like you are walking along and all of a sudden you just tilt over to the side? You don't trip on anything and there is no apparent reason for the tilt to the side but it happens?
I went to see a neurologist about neuropathy and I just happened to mention the falling over and she said that it is no wonder because apparently nerve damage in the feet can produce this lack of balance. It is something about the fact that the nerves have been damaged and parts of the feet are numb so your spatial concepts are all off - in other words you don't know exactly where your whole foot is at any given time - or part of it -due to the damage. It makes total sense but this is the first time a doctor has tied my balance issue with neuropathy in the feet.
Let me know if you have this issue if you have a minute?
Blessings,
Bluerose
Hi Bluerose,
I also recently saw a neurologist re: my balance. I attributed it to my neuropathy in my feet but the oncologist did not think it was and suggested I see a neurologist. I tend to just tilt to one side at times and also notice I lose my balance if I turn to the side to fast. I have had 2 nasty falls...one resulting in a broken ankle and one in a ruptured disc so I am a bit nervous about walking, etc.
I did see a neurologist about a month ago. He did lots of neuro testing in his office and said about the same thing as the neurologist you saw. That my spatial relationships are messed up due to the lack of feeling in my feet. Since I finished chemo about 2.5 years ago, he didn't think there was much to do....he suggested B vitamins for a 3 month trial, to use a walking stick on uneven surfaces, and if I wanted he could refer me to PT to teach me some balance exercises (which I had already done).
My husband is trying to figure out how to outfit me with "training wheels". He is very funny!
Did you get any suggestions for living with the balance issues??
Best to you,
Karen0 -
First I would like to thankCrazysony said:Neuropathy as a side effect
Hi!I had a friend who had trouble with drugs and at the age of 20 he went to a rehab center.When asked why did he choose drugs his answer was "because they are reducing the pain".After a medical check doctors found out that he was suffering of testicular cancer and he didn't say anything about his problem because he was ashame.Finally he went to chemotherapy and after a year his problem seemed to be solved.After few days he claimed that he don't feel his feets and he has numbness.The doctor put the diagnose of neuropathy and he also told him that in some cases it appears as a chemotherapy side effect.He took some pills and now he is completely cured.
First I would like to thank the one who started this discussion. I believe that the people who went through such a situation should have a place where they could share everything. My experience with neuropathy was not as unpleasant as for many of the other chemo treated patients! My doctor said this was because I started phentermine even before starting on chemo. I looked it up on the internet and found that this drug is really highly efficient as a symptomatic treatment in many diseases> I never went through the clinical phase of neuropathy, only the subclinical one with no discomfort whatsoever. Maybe my experience will help someone! I really hope it will!0 -
Hey Karenkkstef said:Same issue here
Hi Bluerose,
I also recently saw a neurologist re: my balance. I attributed it to my neuropathy in my feet but the oncologist did not think it was and suggested I see a neurologist. I tend to just tilt to one side at times and also notice I lose my balance if I turn to the side to fast. I have had 2 nasty falls...one resulting in a broken ankle and one in a ruptured disc so I am a bit nervous about walking, etc.
I did see a neurologist about a month ago. He did lots of neuro testing in his office and said about the same thing as the neurologist you saw. That my spatial relationships are messed up due to the lack of feeling in my feet. Since I finished chemo about 2.5 years ago, he didn't think there was much to do....he suggested B vitamins for a 3 month trial, to use a walking stick on uneven surfaces, and if I wanted he could refer me to PT to teach me some balance exercises (which I had already done).
My husband is trying to figure out how to outfit me with "training wheels". He is very funny!
Did you get any suggestions for living with the balance issues??
Best to you,
Karen
It always fascinates me as to how similar so many of us are. Amazing.
Nah, she said that there isn't alot that can be done for neuropathy - that was encouraging - NOT. You know I didn't link my balance issues with neuropathy at all and just by chance did I mention my recent imbalance and was floored when she started in on this spatial issue. Of course it made sense then, duh. It scares me though. All I need is a freakin broken hip yet and I live on my own. My two cats are no help either. lol. Lazy furballs. lol.
I bought a wheelchair that I keep folded up here in case I get any worse but gee this imbalance just comes out of the blue, no warnings or anything, hmm, kind of like the cancer did. Too many out of the blue issues along with this cancer stuff.
Anywho I go for a nerve conduciton test in the next little while, no idea why I am bothering since I know I have neuropathy, just a little more torture so I don't forget about things that really smart. lol.
Hoping and praying for a miracle cure for neuropathy, that's all we can do I guess.
Blessings,
Bluerose0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 396 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 538 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards