Neuropathy After Chemo

Yorkie2 said:

I had one round of vincristine treatment back in 2010.
Within a week i had nunbness in my hands almost 3 years later still living with the pain i drive very little and live in pain daily. I never even heard of neuropathy before now i pray for all that suffer each day as i do with this. Its such a hidden nitemare we fight cancer and this monster rears its ugly head and takes our feeling in our feet hands toes and fingers its now after my face. Remeber people it can not take our spirit keep it high walk when you can post when you can and fight always God bless.

I had chemo when I was 21-22, including vincrisitne.  I even had a sternotomy.  I told the surgeon to perform the tissue biopsy through the rib cage.  There was an option rib cage or sternum, I woke up with the sternum sutured and steritaped.  I go to doctors and am told that this could do nothing.  I sit here asking myself have they had their sternum split open?  Have they put themselves through chemo and radiation.  I look around again and again for different doctors for good reason.  I've had some real doozies.....Yes, I think you could be affected by vincristine along with the other chemo drugs along with the radiation treatments.  I was told in writing a long time ago by a doctor that I could be suffering from something called Lhmeritte syndrome due to the chemo and radiation.  I was told that didn't matter, that wasn't possible...  I merely have tingling sensations, along with my arms falling asleep if held in different positions.  I have had this so called electrical sensation, had it checked out by one of the Universities and been told that everything is normal.  My reply was normal for what?  I fidn excercise helps although I get muscle tiredness in my calves, I was told that's called something else.  I noted yesterday I have a vein that will stick out on my left leg if I put it down to the floor, if I hold it across my right knee this goes away.  I don't know about these so called medical fields, are they after monies....like that one who cut open my sternum?  and then to boot I reread the notes, and they indicated they put a suture near my heart for some reason.  I already contacted the so called medical authorities, it's too long, you have two years to file anything.......His name was Penfield Faber, he became head of cardiothoracic surgery....I've gotten nothing but BS from my so called family.  My one sister was an RN at the time, I don't ever suggest having an RN in a consult with yourself.  She doesn't remember me telling him the rib cage....  Try and be active it may help with the blood flow....I had a physical therapist this year due to a fall on the ice.  She noted one leg was slightly shorter than the other.  She also gave me stretching excercises that helped with the pain immensely.  It was so painful I couldn't get up in the morning on that side.  You may think of trying that in your local....I also bicycle ride, I noted that my arms fall asleep very quickly, the tingling sensation, when I bicycle ride.  I also have access to another excercise bike that I deal with a little bit better, the arms move.  You may want to have your spinal column checked out, from what I was told this year.  The nerves can affect the entire body from the spine.  There are ways to reduce the pain without medications.  

Thoracic Surgery Team | Rush University Medical Center

Lhermitte's sign, sometimes called the Barber Chair phenomenon, is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward.  It can also be evoked when a practitioner pounds on the posterior cervical spine while the neck is flexed; this is caused by involvement of the posterior columns.

charlin said:

I had joined this site when
I had joined this site when I was going through chemo and forgotten all about it..what a joy it was to find your post tonight..I have the same issue with the neuropathy in my feet and toes..my oncologist suggested at my last 6 mo. checkup that I see a vascular doctor to make sure I had no blood clots or blocked veins in my legs or feet..I did that, just yesterday, and the veins and arteries in my legs are totally clear..he said it was probably periphiphal neuropathy, just as I had thought...but it has been so LONG since I had chemo..that was in 2003-2004! He said the effects can last a lifetime in some people..I'm so glad to finally find out what has caused the numbness and very sensitive toes! Your post has helped me to understand why my BALANCE seems to be all off too! Oh, by the way I am an 8 yr. survivor of colon cancer stage 3...had surgery and 6 mo. of chemo, IV Fluorouracil, 5-FU (Adrucil) and Leucovorin (Wellcovorin) tablets. I didn't see these mentioned anywhere as cause for neuropathy but they sure did it. Thanks for the post and God Bless you and keep you cancer-free!!

Try Oxygen Therapy. You can buy your own now for personal use. I just had a small stroke lots of numbness and other issues. Mine  is in the mail as we speak. I know it can be used for all sorts of ailments. Got info if you would like to research it

Jmdamon said:

Neuropathy

Hi there.... As was previously said, I wish the oncologist had explained things as well as you!!! My husband is almost five years out, and I have to rub his feet nightly because of the severe neuropathy. Gabapentin did nothing and cymbalta seems to help a little.... But no one had mentioned any vitamins that would help. His treatments vePsid and cisplatnium combined for 8 weeks. His feet were numb durning the treatments, but now the numbness is gone and he suffers severe stabbing pain in the balls of the foot, he says is like there are golf balls he is walking on. Also pain in the bones of the toes. Can anyone offer suggestions on sneakers or shoes that they like? I am gonna talk to him about the B vitamins.... No one ever told us about this until well after it was our reality. This site is going to make him feel soooo much better! I hope everyone gets some relief from the pain they have to endure....

 

I can sugest crocks with the back that flips up to hold the shoe on (I walk out of mine all the time). They seem to conform to your foot, have plenty of room for swelling, and the little tabs on the bottom (hurt like hell when you first stand up but so doesnt the bare floor) seem to stimulate after you walk for a bit.. Also I bought some socks from Lamey Wellehan I think there called Aetrex copper sole. They are super stretchy and the copper in the soles seem to help. You should definitly check into the vitamin B as it helps. Nothing else works, I,ve tried them all and found they make you swell, depressed, and fat. Narcotics work but thats because you are in another world. It has been 4 years since my chemo and I am still in pain. I dont drop things as much, can open caps and lids, and can tie my shoes now, but the pain in my hands and feet is an everyday thing. I deal best if I am occupied with something to get my mind off it for a bit. Word finds, books, games, tv...whatever you can find to hold your interest just for a bit. Hope this helps as I know all to well even the smallest things make a difference.

I have neuropathy due to chemo, I take alpha Lipoic Acid (ALA) it does not cure the neuropathy but it certainly helps!

pilarica said:

I have neuropathy due to

I have neuropathy due to chemo, I take alpha Lipoic Acid (ALA) it does not cure the neuropathy but it certainly helps!

 

 

Hi! I am going to try alpha lipoic acid to see if it helps. I just wanted to ask you what daily dose you take? Also do you have any side effects from taking it? I hope all is well.

bluerose said:

Hey 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
Bluerose

Woah I am really bad at getting back to people on here apparently, forgot all about this entry.  Sorry about that.

Well the conductivity tests weren't the most pleasant, for me in my case, but they did prove beyond a shadow of a doubt that I do have extensive peripheral neuropathy, hands and feet.  It started in my toes then over time the numbness crept through my foot and up my leg.  Now the numbness is just below the knees.  My hand numbness comes and goes but now it just stays as is with heat and then cold issues off and on.  I have been diagnosed as well with fibromyalgia so since we are talking about nerve damage with fibro and neuropathy hard to tell sometimes which is acting up.  

I had Vincristine as part of my treatments many years ago, in the early 90ties actually, and that can be a big reason for many as to why they develope the neuropathy but like I always say, everyone is different, doses are different etc so best to speak with your doctors first and get tested if the symptoms warrant.  If you really feel that you have symptoms and your doctor is not listening to your concerns then find another doctor who will help and work with you.  You have to be on the same page.  It's crutial to your care.

All the very best in 2015.

Blessings,

Bluerose

pattyanny said:

Neuropathy

I am 5 years out and have the same thing in my feet. I am taking a medicine for nerve pain, and it is helping. Similiar to Lyrica, but just started. I am starting on a vitamin regimen this week. We will see. I am also getting a good supportive sneaker. Hope this helps. You may email me Donald, if you want. Prayers, Patty

 

Hi Patty,

I've just read your post and feel a little relieved others have/or are having the same experience with nerve pain. I have had nerve pain in my feet for 3.5 years. It hasnt gotten any better. Im 34 yrs old. I had bowel cancer when i was 30 and had 6 months of chemotherapy. I have just started taking B6 & B12 liquid and have been having B12 injections fornightly. I havent had any results yet. How are you finding your medication? Would you recommend it?

Thank you so much for your time.

Kind regards Alice

GrammaMary said:

Neuropathy after chemo and radiation

My entire left leg is subject to severe leg cramps and varying degrees of numbness and pain. My right leg is normal. This is what is baffling to my doctors. Sonogram shows no DVT or blood clots. EMG confirms neuropathy. CT scan shows sciatic nerve is normal. What's a gal to do?

Curious which side your port/infusions were on?  My port was on right side to treat cancer on left side, and my right side neuropathy, loss of control of limbs, muscle/tendon attrophy is on side port was on. 

I have had plantar fasciitis for a year+ and found that these slippers make walking less painful. I also believe that by ordering a new pair as soon as I see "wear" that they are helping me to get to my goal of a pain free walk. I have ordered an orthofeet slipper(same one) three different times now.