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Neuropathy After Chemo

ChrisHB
Posts: 22
Joined: Mar 2006

Hello, My brother has completed his second round of aggressive chemo after colon cancer recurred in his liver. He had surgery to remove two lessions on the liver three weeks ago and the surgeon feels the outlook is good. Right now he is dealing with neuropathy in his hands and feet. He feels like it has increased after the surgery and wonders if that may be due to reduced activity during recovery. His doctor told him that the neuropathy may go away in up to six months or posibly not at all. I am wondering if anyone has come across anything to help relieve the numbness and pain? His doctor told him to continue calcium and a vitamin. I have read in a couple posts about Glutamine and also one about Alpha Lipoic Acid. Any ideas would be appreciated. He will go back to chemo at the end of the month. Thanks.

Hondo's picture
Hondo
Posts: 5722
Joined: Apr 2009

Welcome to CSN, glad to have you here and hope all goes well for you in San Francisco.

Hondo

charlin
Posts: 1
Joined: Dec 2003

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!!

aqua18kjd
Posts: 1
Joined: Apr 2012

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.....

judycm's picture
judycm
Posts: 1
Joined: Mar 2013

colo/rectal cancer in 2005.  Neuropathy started after radiation and chemo.  broke right femur in 2010 and Dr said could be related to cancer treatment.  Pain in left femur after walking short distance turned out to be Caldication.  Blood clots in Illiac Artery.  Had the surgery and now the neuropathy in left foot is terrible.  Dr told me circulation is fine now.  Bottom of foot feels like I have a thick shoe on.  Big toe painful.  Cannot move other toes.  Been on Gabapentin but need to increase dosage but makes me sleepy.  Started on Neuropathy Support Formula don't know if working yet.  Think I might ask Dr. about B 12 shots.  I'm an active 72 year old but this is making me miserable.  Taking Percoset in order to sleep some nights.

 

Viking51's picture
Viking51
Posts: 21
Joined: Sep 2013

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

Daisey May
Posts: 4
Joined: Feb 2012

Like to thank you for all your interesting discussions. I have been off chemo since the end of November and had my reconnect operation in Seattle on Jan 7th. I have neuropathy in my hands and feet. I have been looking for something that will help me. The cold really bothers me so I'm luckily to be living in Hawaii. Trying to get my life back in some kind order, as we went to Seattle for treatment and my operations. Had my chemo here in Hawaii with the recommendations from my Seattle Doctors. Will get my vitamin B tomorrow.
Thank you for all your help.
Aloha
Carol

Jedds
Posts: 1
Joined: Oct 2011

For those asking about the issue with falling down as a result of the neuropathy, I found that physical therapy was very helpful. I was falling fairly often and the doctor recommended the treatment. It was EXTREMELY helpful and has decreased significantly the instances where I lose my balance and fall.

Hondo's picture
Hondo
Posts: 5722
Joined: Apr 2009

Welcome my friend, do you know what type of physical therapy you were giving. I had problems falling but was able to use a product called Ambrotose and it helped me quite a bit.

Wishing you all the best
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Well that was painful and a waste of time. "No surprise but you have periferal neuropathy from your cancer treatments'. Everybody together now 'DUHHHHHHHHH'. He then added the observation that 'you sure have been through alot haven't you?' which I appreciated in validation and was a very nice man and obviously knew his stuff but no suggestions. I left now officially having peripheral neuropathy (sigh) but no suggestions on what to do about it. I have to admit that I didn't ask either as I was so freaked about the tests in the first place when they were done it was skid marks out the door. lol. What a wuss I am.

He wil send a letter to my GP and I will get a copy of it and he will probably make suggestions as to what I might try that may help in there. If not I am going to call his office back and talk to him about it. Gotta have that stamp of diagnosis on that paper. lol.

As far as all of your comments about falling with the neuropathy it's a big worry of mine too. I did fall completely once and I hit my head - which might explain the typos I keep making these days, lol - but usually and so far it's just sort of tripping or leaning to the side when I take a step. Sort of shocks me when it happens cause it seems as if it just comes out of the blue for no reason. When I talked to the first neurologist who sent me for the nerve study that was when I first realized that the tripping was due to the nerve damage. I really hadn't thought of that. I have a cane like I said before or hold on to a cart that I have to carry groceries/take out garbage/laundry as I live in an apartment building so I am always holding on to something. I have lower back disc degeneration too and that's why I initially started holding on to things as I walked - can't walk well without doing that.

Anywho I am going to ask my doc for B shots as my B was low and she seems to have forgotten about it and some say that it helps with neuropathy.

Lyrica has been suggested for me for my fibromyalgia but Ron, like you, I am afraid of the side effects of it. Man you read the warnings and forget it.

Hope everyone feels better today, even a little better seems like alot doesn't it?

Blessings,

Bluerose

wetz5526
Posts: 13
Joined: Apr 2010

Bluerose,

I had my nerve conduction test done about 1-1/2 years ago. The results were; radiation plexopathy due to radiation treatments I had for colon cancer back in 1987. While I've had some symptoms for many years, they were pretty tolerable up until about 3 years ago. My symptoms are; terrible leg aches (particular in the thighs), twitching and buzzing in my entire legs as well as terrible stiffness & tightness and now my knees are giving me trouble. I also have balance issues but it's not too bad. It's hard for me to sit for any lengh of time and I have a really hard time sleeping at night ~ between the terrible aching and twitching I have a hard time relaxing as I'm reading/watching tv or getting to sleep. My legs hurt ALL the time ~ it just never goes away. Very frustrating. I also have lower back disc degeration as well as osteopenia and I'm wondering if I also might have fibromyalgia. I was seeing an acupuncturist but that only seems to help for a few days, plus it gets to be rather expensive. I do keep active by walking every day. I've gone from walking 3-4 miles a day 3 years ago down to about 1 mile (and that gets tough). After walking, the nerves in my legs have a hayday...they are so active it takes forever for them to calm down, my legs ache more and it's harder to lift my feet off the ground but I feel if I don't try to keep active then they'll get worse....oh what to do. Anyway, I am so thankful for my life but I just wish I could get some relief from these symptoms. Is there anyone out there with similar symtoms and if so what have you done to find relief? Appreciate any help.
Take care all,
Barb

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

All sounds pretty familiar, your symptoms I mean. My feet and legs are numb and cold all the time too and have most of the symptoms you describe. The lower back degeneration doesn't help that's for sure.

On this board somewhere there are suggestions of what others have used to help with the nerve damage so I guess best is to just read through. Also look for the ones that speak of nerve damage or peripheral nerve damage for more information. There is a search bar at the top of each page here so if you type in nerve damage you might get easier access to the posts that apply.

Gee you sure walk alot, I would have to call 911 if I tried to go even 1/12th the distance you do, my back is that bad. Hope you find some relief and if you do let us know okay?

Blessings,

Bluerose

msturtz's picture
msturtz
Posts: 4
Joined: Oct 2011

I had neuropathy so bad in my feet and hands that I would fall down and trip over my own feet. I even had a tack in the bottom of my foot once and didn't know it. I would burn or injure my hands, couldn't feel my contacts or earrings to put them in. My Onco Dr suggested I take 100mg of vitamin B-6. I didn't want to take another pill but was so frustrated that I finally did. After a week I noticed more feeling and after several weeks it improved to just the tips of fingers and my toes. I have now been off chemo for over a year so thought I would stop it....after a week the numbness started to spread back up from my toes to feet and up my fingers again so I went back on the B-6 and it helped right away. I asked the dr why and they don't know other than for some people it helps with the nerves....though it is for healthy hearts. Got me -maybe it will help you, in my case, it made a huge difference. Good Luck.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Ms Turtz. What did you mean about healthy hearts? You mean the B 6 isn't good if you have a heart problem? Sorry didn't quite catch that. Could you explain please? Thanks.

Blessings,

Bluerose

suzannewhite's picture
suzannewhite
Posts: 3
Joined: Oct 2011

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

LaurieH61
Posts: 1
Joined: Jan 2012

Hi- I am a breast cancer survivor. Had my mastectomy in Feb 08. Chemo AD and Taxol, followed by herceptin for a year. The pains in my legs started to be severe through the herceptin. After trying several drugs, I was put on Lyrica which seems to help the pain a lot. My problem now, is the numbness in my hands is getting worse, and I am losing my taste buds. My Dr. attributes all of this to neuropathy from the chemo. I am at my wits end. I am several years out from the chemo, and it continues to wreak havoc on my body. Haven't tried the B6, but after reading these posts, will start it tomorrow. God Bless all of you. I pray for your continued success in your fight with the beast.

cindy bm
Posts: 2
Joined: Mar 2012

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.

Bran
Posts: 1
Joined: Sep 2004

I had treatment in 1998 high dose treatment. I still have numbness in my feet and hands. I found nothing to help and the medication that I could get from my doctor don't help, just put me in a different zip code. But by reading the comments from here help me. Vitamin B B1 B12 Ill try it. Ill try anything at this point. I just have to get used to it.I find that I have a higher pain tolerance. I am a fabricator/welder, I find that if I stay moving and don't stand in one position I can get through a work day with minor pain. Although I have allot of padding in my shoe's its just buys me time. I take allot of over the counter pain relief. It helps but nothing works 100%.I prey that one day it will go away but I'm prepared for a life sentence. But it beat the alternative of being dead!.

I give thanks for my life but some day's it hurts so bad I just want the doctors to cut them off I would live in a wheel chair and just be happier. But I just in pain and don't mean it. It get so bad bad sometimes I can't drive because I can't feel the peddles in my car.

But I give thanks for my life. It's just gonna be a hard life. I have other side effect as well. I have memory issue's as well. My memory is really bad.

I am alive.

No worries I'll get through it.

FTW.

bojiboss
Posts: 1
Joined: Jan 2012

I was diagnosed on May 13, 2010 with Burkitts Lymphoma. Very rare I was told and very very agressive. Had major surgery May 5th where 12" of my colon and half my bladder was removed. This is how we found it. I was started on a Hyper CVAD regimen which was very agressive. Cyteribine, vincristine, methatrexate, you name it they gave it to me, every 22 days for 8 treatments, thought I was gonna die by the last one. Long story short, I am now in full remission but am dealing with terrible neuropathy in my feet. Had a little before my cancer froma bad back, had surgery 3 years ago for that, all is fine there. I have tried amiltriptiline (SP) and gabapentin (SP), those 2 made feel like crap so I stopped. I have been advised to try Vitamin B Complex which I now have started. Just asking if anyone has a similar story and what works for you. I can live with it because I look at like this, I am here and I am going to enjoy life no matter what.

Thanks

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Sorry for those of you experiencing neuropathy. I notice in this thread that L-glutamine is suggested in a couple of posts. Although this used to be the widely recommended supplement for reducing neuropathy, recent research indicates that some cancers actually feed on glutamine.

734gold
Posts: 8
Joined: Feb 2012

Hi all. There is some good info in this thread and I'm sorry to see that so many of you guys have onco's that seem to just shake their heads at nueropathy.

My oncologist intended to put me on gabapentin/nuerotin from the get go, but about 5 days prior to my first treatment, I was hospitalized due to severe back pain (from an old military injury). The docs at the hospital started me on gabapentin/neurotin as part of my therapy and when my onco found out he was thrilled! He said that he perscibes this for his pts,along with vit. B supplements, especially those on vincristine as I was. I am up to a dose of 2400 mg daily and it has kept me going! On occasion, I forget my meds (who of us with chemo-brain haven't - lol!), and the pain is so bad I almost can't walk - but within a short while after taking it, I'm mobile again and in a lot less pain. My Family Practioner is the one who worked me up to 2400 mg and said we could go as high as 3600. My onco has agreed with him on the current dosage and as I said, he wanted me to be on it anyway when I started chemo back in June of 2011.

It may not work for some of you guys, but I would ask about it - you have nothing to lose. All I know is that I wondered at one point if it was working, and as soon as I forget to take it - I KNOW it's working wonders for me. Hope this helps some of you. Pain is a terrible thing to put up with and we ALL know that we have ALL been through some pretty terrible stuff just dealing with our respective cancers. Good luck and God Bless you all.

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

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

beverley41
Posts: 1
Joined: Feb 2012

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.

Daisey May
Posts: 4
Joined: Feb 2012

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

Daisey May
Posts: 4
Joined: Feb 2012

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

Daisey May
Posts: 4
Joined: Feb 2012

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

Skgurley
Posts: 1
Joined: Apr 2012

Hello All,

I believe that I too am suffering from neuropathy in my feet and hands. I just finished my 5FU treatments two weeks ago so I know I still have a long road ahead of me.

What I haven't seen any posts about are dry feet. The Doc said its due to chemo and I'll get over it.....but my feet are so dry they are uncomfortable and keep me up at night.

Anyone else have this Issue and/or solutions. Frankly at this time it's worse than the neuropathy.

Thanks for your help.

S

wendy_40
Posts: 2
Joined: May 2012

Morning Skgurley, I have been having Chemo for overin and utris cancer, I had my last treatment today :- ))) hopefully. I was having Carbo / Taxsol and I am suffering with Dryness of the skin and Neuropathy I use a product called Heel Balm by Eulactol there are several types I have used one that works in 2 weeks and did work but I am now trying the one that workes in 7 day the (Gold One) and It has releived the pain from the crackes in the feet. It is now 2:40am and i am still up due to the pain in my feet due to the neuropathy in my feet I have taken Endone but not working yet. One thing that is worring me is the tinggling pins and needle feeling that I am getting from my chest up to my head it starts around my mouth and then travels up and down does any one else suffer with this I though the Neuropathy only occured in the hands and feet.

hope you can find the cream I mentioned i live in Australia and its the Number 1 heal Balm

worried wendy

ruckrova
Posts: 2
Joined: Mar 2012

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

donald54
Posts: 5
Joined: May 2012

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

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

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.

Hondo's picture
Hondo
Posts: 5722
Joined: Apr 2009

Hi Ron

Did you ever hear about Deep Pharyngeal Neuromuscular Stimulation, I will be trying it for the Vagas nerve problems in my Face and neck. I willet you know how it works

Just wondering has anyone else heard or tied DPNS. It is very interesting to me and anyone who may have been affected by C treatment and can’t swallow.

DPNS

If the link don't work go to http://dysphagia.com/maillist/1997-January/msg00113.html

Thanks
Hondo

kennam
Posts: 2
Joined: Jun 2012

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?

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

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.

Rice6roni's picture
Rice6roni
Posts: 6
Joined: Dec 2012

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 ....

Pappa Don's picture
Pappa Don
Posts: 39
Joined: Nov 2012

NIH ChrisiHB: 

I read your comment on neuropathy. I know what a nuisance it is. I have had it now for 3 years and it has not change much 

during that time. My PCP told me to take vitamin B-6. I have been doing that all along not much help. But the last couple months I significantly increase the dosage. I notice it comes less than it did before. I have longer periods of relief now. But it still for no noticeable reason it at times still comes on very strong.

the other thing  that has been recommended to me is neuronton which is used as a nerve pain med. but I tried that before and had a phsycotic reaction. So that is a no- no for me

I am sorry you are dealing with this. Hope you the best.

PEACE be with you.

PD

 I am sorry. I see I responded to a 4 year old comment. DUH!

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

I had another shot at taking methotrexate for my kidneys and arthritis but after a few months the neuropathy in my legs and hands flared dramatically...My rheumatologist sent me to a neurologist to get help. I asked what was causing it and how I could lessen the effects. He did nerve conductivity tests . He got a minimal signal in my right leg and none in my left. Severe neuropathy, don't know why ,can't help you, don't take any more methotrexate. Now my heart is playing up. A stress test showed premature ventricular ectopic beats. Gp and kidney specialist said it was benign . Asked my gp to check it further. He put me on a 24 hr monitor. He expected a few hundred ectopic beats . I recorded over ten thousand. It seems my auto immune problems may becoming life threatening. I see a heart specialist in a couple of weeks. I think my problems are from the kidneys . Because they are not being treated for the protein loss I am suffering severe peripheral and pulmonary oedema. I think that either that or spreading neuropathy is effecting my heart.. Ron.

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