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Permanent neuropathy???

Captain11
Posts: 88
Joined: Apr 2011

I am new to this chat/blog/etc so bear with me. I have been "cancer free" since March 2010. I have some side effects from the chemo and radiation, as I am sure every one of us went through something. I did not have any neuropathy until about the 5th of my 6th monthly treatments. I did not lose all of the feelings, I could still button my clothes and even sew, but picking up the pins and needles, and even turning pages in a book were and still are more difficult to manage. The numbness and tingling in my hands and feet are bearable, but the loss of balance due to the weakness in my ankles is more than I can fathom. At a moment's notice, my feet and legs (mostly my left) go numb and I fall down the stairs, or what is worse, up the stairs. My oncologist said it could and should improve, but it may not. My primary care said the same thing. I am and always have been pretty active, so this inability is horrible. I noticed other anal cancer survivors are and have experienced the same butt problems as me. I don't schedule any appointments before 10 am due to what my doctor calls "fecal urgency" I hate it!!!! I, too, am taking imodium, but on an as needed basis. I don't like taking meds; I have a hard time taking vitamins. I am a veteran and I utilize the VA hospital for some of my care in addition to my outside medical practitioners. My VA primary care doctor prescribed dicyclomine which is supposed to treat irritable bowel syndrome. I don't find it as good as the immodium. My primary care doctor said I could take it, but she didn't think it would help as much as the imodium; my oncologist said to stick with the imodium, in case the side effects of the dicyclomine bothered me. The thing is, I can't tell what bothers me anymore. I almost freak out with any ache or pain. I had no signs or symptoms that anything was wrong with me in the first place. So, how would I know what any pinch or tingle meant??? Is anyone else experiencing this??? Thanks, and God bless you all.

z's picture
z
Posts: 1267
Joined: May 2009

Hello Captain11, sorry you had to find us. I have not experienced the neuropathy, as I only had the 1 infusion of mytomicin and 2 cycles of 5fu, at 1 week at a time. I know that there are colon cancer survivors that have the neuropathy. I see that you had monthly tx. I guess I would imagine it was due to the size of the tumor. I am sorry I am of no help, but you could check out the correctol board. I wish you well Lori.

mp327's picture
mp327
Posts: 3076
Joined: Jan 2010

I'm sorry you are experiencing the neuropathy. That is something that I have not dealt with, but I know it is quite common after certain types of chemotherapy. As for the urgency issues, that I have experienced. I am now almost 32 months post-treatment and it is only occasional these days. You may continue to see improvement, as I found that at about the 2-year post-treatment mark, I really noticed most of those issues were gone. I really think it takes at least 2 years to return to "almost" normal. When I was still having the urgency/frequency issues, my rad onc suggested taking one Imodium daily routinely. I did that for awhile and it did seem to help. Also, I did not have any adverse effects from using it. I wish you the best and hope that you can find something that helps with your issues.

mxperry220
Posts: 368
Joined: Mar 2011

I too have had BM issues. I was taking 2 immodiums first thing after my first BM in the morning. I still was going 4-5 times daily. I talked to my oncologist in Mid March and he sugegsted taking 3 immodiums. I started this regime nd it has helped 100%. I like you was afraid I would become dependent on the immodium. My oncologist assured me there is no dependency using immoiums and it would not hurt to take 3 immodiums daily. I only have 2-3 BMs daily which is almost what I had prior to anal cancer. I too did not feel safe leaving the house within two hours after I got up in the mornings which was around 10 AM. I do not have that fear as much lately. I am out 27 months post treatment. I found a huge savings on immodium equivalent at Sam's Club. Their brand works for me just as good as Immodium brand. Hope this helps a little.

alis7910
Posts: 80
Joined: Jun 2010

Hi:
I have not experienced neuropathy; I have and still experience "urgency" and I am a year and 8 months out. I work very early in the am and have a long commute, so I have to know where all the bathrooms are along the way, and still get caught sometimes. This is very stressful,and humiliating, but it has gotten easier with time. I find immodium is very helpful as needed.Also, taking note of your diet and what triggers it helps alot. I find fruit to be the worse culprit for me, as well as spinach.
Hang in there and keep us posted. May everyday become easier for you.

lemonade
Posts: 62
Joined: Feb 2010

I have been having tingling and pain in my hands, and now it has worked its way up to my elbow. I feel like I have tennis elbow. I went to an orthopedic hand specialist and he gave me braces to wear. We are trying to determine if it is due to carpal tunnel syndrome or neuropathy due to chemo.

I don't know what to do sometimes. I woke up at 2:00 a.m. last with my back hurting so bad that I couldn't sleep. I do feel better after I get going during the day, but I dread waking up every morning because everything hurts so much. The only thing that doesn't hurt in the morning is my head. Hallelujah that I never have headaches. I take a pain pill every morning just to get me going. I haven't had the foot problems you describe, but I did develop lymphedema and have to wear compression hose and pump my legs for 1 hour every day.

Sorry you don't feel well.

sissy310
Posts: 300
Joined: May 2010

Hi Captain11 - I'm 8 1/2 months out from treatment and cancer free now almost five months - actually I'm never sure when I'm supposed to count my anniversary so I decided my anniversary will be Dec. 18th when the biopsy results came back as negative. I still experience some urgency...depending on what I eat or drink at times. I have noticed it is less than it was 6 months ago so I am assuming it will improve with time. Still nervous about being out somewhere though. As for neuropathy, my goodness you are dealing with a lot of it. My brother, who has multiple myeloma, experiences what you are experiencing in his feet, ankles and lower legs. I can empathize with you simply knowing what my brother goes through. I had some major pain and issues before my diagnosis so to not have that particular pain and discomfort now is a blessing. I can't imagine not having any pain or discomfort and going through what you are going through now - and then to have to describe it? Oh boy. Hope that you find some relief from this and am glad you came in here (not that you are part of this group unfortunately) but happy that you were able to ask questions.

magillilnb's picture
magillilnb
Posts: 37
Joined: Feb 2014

It has been a few years now. Do you still have the neuropathy?  I am going through it now, and it's terrible. Mine is in my left leg. It hurts around my sciatic nerve, and it's numb around my calf and parts of my left foot. The parts that are numb are also very painful at times. I am walking with a limp, now, but at least I can still walk. I am on hydrocodone at night to help me sleep, because the pain is so bad. During the work day, if I stay busy, I don't notice it as much. I am on Neurotin, but it doesn't seem to help.

Did you ever take anything to help yours?

Thanks,

Nancy

 

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I had sooooooo many problems with my hands and feet until I started doing Hot Yoga.

Check it out. You will think it is really hot (it is really hot) and really hard (it's beginning Yoga but it takes a lot of concentration and patience).

But it is absolutely fabulous for the body. I also had planter fascilitis in my feet and tendenitis in both my hands. Now I am pain free.

I still take Lyrica though as when I forget it, I can't sleep for my toes or hips feeling like they are on fire, during the day time, though, I am fine.

Anyway, I would have not tried hot yoga myself had I just not run out of other options.

It's a challenge, but it is well worth it. Check one of Bikram Choudhoury's books out of the library. I like the orange one the best (it's the latest).

Good luck

Sandy

betsyreececancer
Posts: 2
Joined: Jun 2014

Thank you for your words about hot yoga.  Six treatments of Taxol gave me the problem in my feet.  People are talking about similar symtoms such

as loss of balance, difficulty aiming foot at correct step.  I had wondered if the rapidly devividing cells under my nails of toes from a fungal infection had

contributed to the neuroapathy.  Cut toe nails ways back and put on tea tree oil an anti fugal med. Relief but not gone.  Taxol also caused lack of sensation in

my mouth and gums.  Read Weston Price about root canal infections and teeth that have died because of root canals.  This was the first thing I went to see the

Doctor before breast cancer was discovered.  Looking forward to a time when immuno theraphy is offered in more hospitals. 

 

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