Neuropathy After Chemo

ron50 said:

Hi Gold
I am over 14 yrs out from cancer . The 48 sessions of chemo I had after cancer caused no neuropathy problems. The past 6 years tho have been hell. I cannot feel my legs from the knees down and both hands are getting the same problem. I am suffering protein-urea in my kidneys and asthma as well as severe psoriatic arthritis. I have tried lyrica and neurontin. Neither made a difference. As I increased the neurontin dose the pain got worse. I tried endep,arava,prednisone and methotrexate. My rheumatologist(also an ex oncologist) and my nephrologist both believe my problems are auto-immune stemming from chemo. I am having my third kidney biopsy on friday. They are still searching for a cause. Methotrexate suppressed my immune system for 18 mos then became ineffective. They want me to take one of the transplant immono-suppressants now. Either cyclosporine.cyclophosformide or imuran. I am not happy with that as they all have horrific side effects like causing new cancers as well as renal failure. As if I need any of those. I am getting mighty sick of getting sick. I have had some serious skin ca cut out after methotrexate. I have had a lot of falls in the last few years ,the worst was on a concrete boat ramp,it hurt. I find that my capabilities have diminished markedly in the past 12 mos. I hope nobody yells the words "run for your life",if they do thats the end of me unless they make it stagger for your life,Ron

Neuropathy & pain
Hi Everyone,

I was diagnosed with Ovaroan Cancer, Stage 3 5/19/11. Had surgery 6/20/11. Had a Bard Power Port installed ,started Chemo (Carboplatin and Paclitaxol) in July weekly and went on a trial drug, Avastin, 4 weeks later every 3 weeks. I think I had every side effect there is from the Chemo. Went into remission in Dec. Went off the Chemo, stayed on Avastin. All of a sudden (already had neuropathy in hands and arms due to stinosis and 2 upper back surgeries and need lower back surgery and got worse in hands and started in feet and they lowered dosage of Taxol which seemed to help), I developed horrible joint aches and pain and weakness right after I went off the Chemo. I can't even get up out of a low chair or off a low toilet seat due to pain and weakness. The oncologist pulled me off the Avastin, since that is a side effect. It has made the pain a little less, but has not helped so far with the weakness. I think she's going to pull me off of the trial. I have worked all through my treatment (bookkeeper) which has helped me mentally. I am 70. My office is trying to make me retire (with a good package), but I would rather work, but I don't think they will let me. I have been there 22 years an I kept up without help from anyone during this whole ordeal. Also, due to my back problems, I use a wheeled walker which has helped me tremendously with the neuropathy problems. One of my worse problems recently is that I feel like I am walking on a rock on my right foot on the ball of my foot. I have felt it and looked at it, but nothing is there. I wind up dragging that foot after a few minutes of walking...Any suggestions and do you really think B6 might help? I have read all of your posts and my heart goes out to all of you.

beverley41 said:

Neuropathy & pain
Hi Everyone,

I was diagnosed with Ovaroan Cancer, Stage 3 5/19/11. Had surgery 6/20/11. Had a Bard Power Port installed ,started Chemo (Carboplatin and Paclitaxol) in July weekly and went on a trial drug, Avastin, 4 weeks later every 3 weeks. I think I had every side effect there is from the Chemo. Went into remission in Dec. Went off the Chemo, stayed on Avastin. All of a sudden (already had neuropathy in hands and arms due to stinosis and 2 upper back surgeries and need lower back surgery and got worse in hands and started in feet and they lowered dosage of Taxol which seemed to help), I developed horrible joint aches and pain and weakness right after I went off the Chemo. I can't even get up out of a low chair or off a low toilet seat due to pain and weakness. The oncologist pulled me off the Avastin, since that is a side effect. It has made the pain a little less, but has not helped so far with the weakness. I think she's going to pull me off of the trial. I have worked all through my treatment (bookkeeper) which has helped me mentally. I am 70. My office is trying to make me retire (with a good package), but I would rather work, but I don't think they will let me. I have been there 22 years an I kept up without help from anyone during this whole ordeal. Also, due to my back problems, I use a wheeled walker which has helped me tremendously with the neuropathy problems. One of my worse problems recently is that I feel like I am walking on a rock on my right foot on the ball of my foot. I have felt it and looked at it, but nothing is there. I wind up dragging that foot after a few minutes of walking...Any suggestions and do you really think B6 might help? I have read all of your posts and my heart goes out to all of you.

Hi Beverly 41,
I am 71. I am in remission of colonrectal cancer Stage 2 in Seatlle and Stage 3 in Hawaii. Went to Seattle for treatment, but finished my chemo here in Hawaii. Went to Seattle in January for my reconnect surgery. Now I have neuropathy in my hands and in my feet. I have not tried anything yet, but seriously thinking of taking B6. I'm lucky that I live in Hawaii as the cold really bothers me. It is tough to go into the supermarket cold food isle.
I have been retired for 8 years and don't know how I found time to work. Moved from MA to Hawaii and have never regretted it. Just been married for 1 1/2 years. Met my husband at our senior center.
By the way, had ovarian cancer in 1982 and did well after that. No side effects and cancer free for 29 years.
Aloha,
Carol

suzannewhite said:

Painful legs?
Bluerose, I don't know about B6 and heathy hearts, but surely someone will. Forgive me for not answering your question, but I want to ask if anyone else has experienced severe leg pain from neuropathy which wakes you in the night? I can't walk very far and have balance problems too. But the pain is sometimes excruciating - esp when I am lying down. I am almost two years away from my last treatment and the neuropathy symptoms seem to be getting worse instead of better. Has anyone tried the Nerve Support Formula from Wellness Support Network? If so, have you had good results?I am happy to know we are not alone. So many doctors tell me there is nothing to do but wait. I am getting worse while waiting. Thank you all for being here. Cheers, Suzanne White

NERVE SUPPORT FORMULA
I just started the nerve support formula approximately 1 week ago. I have not noticed anything yet and still have the feet and finger tingling and numbness. I will keep you posted. Also, I will be adding glutimine as some have had success with using both together.

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!!

Neuropathy
It has been interesting reading this and I, too, do not feel so alone now. I am 9 years post-chemotherapy for breast cancer and doing well in spite of the neuropathy. Mine "waxes and wanes". I am in a full flare of foot numbness and pain right now--can't seem to figure out why it goes away for months and then returns with a vengeance. Guess that I will try the B vitamins and get out my tevas. I wear dansko shoes for work and they have great arch support plus they can be easily slipped off when the feet are on fire. Hang in there, people! Glad to still be alive to see my girls finish school. Now to bargain for a few more years.....

dudessa said:

Neuropathy
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.

After effects
I am 8 weeks post chemo treatment and I felt like my tingling and all increased once I stopped. I am glad to hear I am not crazy and that you experienced that also. The side effects are very frustrating.

another step back
During 14 yrs of survival I have struggled with neuropathy of the feet legs and hands. During the same time I have suffered acute pancreatitis,lost my gallbladder ,severe psoriatic arthritis and moderate protein -urea(protein loss thru the urine.) One of the things that I have noticed is that everytime I am treated for something the drug causes more problems.
They still have not dxed my kidney problem tho for ten years I have complained about right kidney pain they keep on biopsying my left kidney. One of my kidney specialists hit me with prednisone ,75 mg daily for a year and a half. At one stage he commented that with my body shape prednisone was probably not the drug for me. He was right and most of my docs agree that it was the cause of my late onset diabetes. It is type two but they are monitoring it carefully as the progression has been rapid. One Idiot said to keep it under control or it could cause neuropathy. What a joke,Ron.

ron50 said:

another step back
During 14 yrs of survival I have struggled with neuropathy of the feet legs and hands. During the same time I have suffered acute pancreatitis,lost my gallbladder ,severe psoriatic arthritis and moderate protein -urea(protein loss thru the urine.) One of the things that I have noticed is that everytime I am treated for something the drug causes more problems.
They still have not dxed my kidney problem tho for ten years I have complained about right kidney pain they keep on biopsying my left kidney. One of my kidney specialists hit me with prednisone ,75 mg daily for a year and a half. At one stage he commented that with my body shape prednisone was probably not the drug for me. He was right and most of my docs agree that it was the cause of my late onset diabetes. It is type two but they are monitoring it carefully as the progression has been rapid. One Idiot said to keep it under control or it could cause neuropathy. What a joke,Ron.

So we just have to deal with it?
What I hear from reading a lot of the posts is that there isn't anything that can provide true relief.

I was up to 2700 mg day of Gabapentin and had some relief, but I have had to decrease the dose due to edema. I tried the vitamin B and another mineral for a while and found no relief. I have neuropathy from the tips of my toes to my buttocks and in my hands / arms. Occasionally I have problems in my face and scalp. I am cancer free and very grateful but the neuropathy can be very difficult to deal with. It changes every aspect of my life and my families and no one seems to understand. Thank you for listening to me.

Ron - Do they think that your kidney problems are possibly medication related?
I originally had spots on my kidneys but they are now gone and I have always worried about the effect of my medication on other areas of my body. What do you think?

kennam said:

So we just have to deal with it?
What I hear from reading a lot of the posts is that there isn't anything that can provide true relief.

I was up to 2700 mg day of Gabapentin and had some relief, but I have had to decrease the dose due to edema. I tried the vitamin B and another mineral for a while and found no relief. I have neuropathy from the tips of my toes to my buttocks and in my hands / arms. Occasionally I have problems in my face and scalp. I am cancer free and very grateful but the neuropathy can be very difficult to deal with. It changes every aspect of my life and my families and no one seems to understand. Thank you for listening to me.

Ron - Do they think that your kidney problems are possibly medication related?
I originally had spots on my kidneys but they are now gone and I have always worried about the effect of my medication on other areas of my body. What do you think?

I wonder
What doctors actually think at times. For years they have beeen treating me for kidney disease. In my opinnion I have a diseased kidney ,not kidney disease. I lose a lot of protein thru my urine but my kidney functions are fairly normal. I have complained of right flank pain for ten years and have had at least five episodes of renal colic all right side(kidney stones). They have done three kidney biopsies and tell me everything is fine. I believe them ,all three biopsies were done on my good left kidney.Go figure,Ron.

ruckrova said:

Neuropathy
Hi fellow neuropathy sufferers

Neuropathy was explained to me like this :

The insulation cells around the nerves have been stripped away by the chemo leaving the nerves exposed .

If there is enough cells not damaged by the chemo they may regenerate around the nerves but if they are all wiped out you will not get them back .

These cells ( sheathes ) are the blockers for the nerves and moderate the every day touch feelings and if you don't have them you feel much more , or the nerves are never "off "

The only relief I get is to hang my feet out in mid air with no socks or shoes on and when Im a sleep , but even asleep I dream of being attacked by insects on my hands and feet .

The best way I can explain the feeling is like walking on a hot beach and the sand gets between your toes where the sand is so hot you need to run to your towel or into the water . The only difference is I haven't had a towel or the water to run to for the last 2 years .

Hope this helps

Ruckrova

Hot toes
Please email me at donald.54@live.com I have the same Simpsons as you and need to ask you some questions thanks don

Neuropathy and Joint Pain

Hello - I'm 2 years out from my BMT (released from the hospital Dec. 30 , 2010). My BMT followed R-CHOP treatments ... in-between I had my spleen removed due to a determination that, after 6-rounds of R-CHOP, I was eventually deemed refractory. Parts of the bottom of my feet, mostly toes and pads, have limited feeling.

My left torso has experienced nerve damage which I attribute to the spleenectomy and a previous Pleauradesis that was conducted between treatment 4 and 5 ...  

More interesting is the joint pains that have gradually increased over the last 2 years - faint in the hands, ankles, and knees but more painful/persistent in the right hip and elbow.

I have enjoyed my detachment from Hospitals and Doctors these past 2 years with occasional, periodic vists for PET/CT scans and bloodwork. I've grown accustomed to limiting my visits to the BMT center and oncologist on an as-needed-basis but fear the growing joint pain will interrupt my otherwise drug-free existence. Time will tell ....