CSN Login
Members Online: 4

You are here

Coronavirus/COVID-19

What cancer patients, their families, and caregivers need to know about COVID-19.

Cramps and neuropathy will it ever go away?

Luckygirl2
Posts: 308
Joined: Mar 2012

How long before the cramping/spasms go away after surgery? My removal of my rt colon was June 11. I had to be driven home from work Tuesday due to the cramping. I was ready for a hospital bed and some morphine! My first three month check up with my onc is tomorrow. And the neuropathy..

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

*hugs* I'm sorry you're having so much pain. I hate to tell you this, but I have had chronic (often very severe) pain since my resection over 4 years ago. I hope you will feel much better soon.

*hugs*
Gail

Luckygirl2
Posts: 308
Joined: Mar 2012

Thank you for replying. I was hoping after 9 months my left side and all my other organs would have found their new resting places. Going to talk with my onc tomorrow. On lyrica for my neuropathy...if I lay on my right side and then lay on back have Pains right at my belly button. Is that normal too? I am really not liking my new normal right now.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I was dx in 1998 with st 3c colon ca into 6/13 nodes. I had a very old reegime of chemo,5Fu and levamisole. It was not known to cause neuropathy. Now 14 years later I can't feel my feet or legs nor my left hand. It seems that it also promotes stone formation . I suffered acute pancreatitis a few years after chemo. It was a gall stone blocking my pancreatic duct.My gall bladder was removed. Since then I have suffered around 5 bouts of renal colic (kidney stones). It now appears that I am in the early stages of Diabetes possibly thanks to the pancreatitis. My kidneys are leaking protein,or should I say my right kidney as it has been the focus for the stones. I have taken lyrica and neurontin for the pain of the neuropathy. I built up to large doses of both but neither helped appreciably. They tried me on endep and morphine pathes and high doses of prednisone. All that did was to activate psoriatic arthritis and wreck my bones. I have spent nearly two and a half years on methotrexate (another chemo agent). It helped my kidneys nd arthritis for a time but then it lost its effect. I asked my rheumatologist the other day if he thought my arthritis would get much worse if I just took painkillers. He said yes no doubt about it. I now have to have bloods done to see if I have any anti-bodies for any of the heps or tb . Then he wants to put me on humira one of the biological arthritis drugs. He is an ex oncologist and firmly believes all of my problems stem from ca and chemo. He believes I may have eventually gotten some of the problems but chemo has hastened their onset.
So the answer to your question is that perhaps it may never go away. For me it has just become a way of life. Enjoy life when you can and be patient when you can't. Hugs Ron.

toddi1973's picture
toddi1973
Posts: 41
Joined: Oct 2011

Hey Luckygirl,

are you still doing the Chemo that gives you the neuropathy or are you done with it ?
I found during my Folfox journey that Glutamine Capsules would make all the difference in the world for me.
Chemoweeks I would take 3 to 6 grams every day over the day and the neuropathy was barely noticeable. I don't know if you can try this after the chemo, but it may be worth a shot for you.

Good luck !!!!!
Toddi

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Settled down about a year after folfox ended. Afraid my surgery was lower down, so I have nothing to add about the stomach pains.

Best of luck on getting it resolved.

Blake

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

For me, no.

My last chemo was 11/10. Still have neuropathy.

Gabapentin cuts down my pain, but not the numbness.

I hope yours isn't as persistant as mine.

Luckygirl2
Posts: 308
Joined: Mar 2012

I normally wear a size 7 shoe . Bought my usual size with just a slight hill /wedge were killing me after an hour or less...went 7.5 wide...by end of day the balls of my feet are screaming at me and my three middle toes feel like I have string wrapped around them. I keep a pair of very soft footies in my purse and at work for when I can't go no more. My handwriting is beginning to suck if I write for very long.... And my balance is off atntimes, is that neuropathy or after effect of chemo?

janderson1964
Posts: 2215
Joined: Oct 2011

I still have neuropathy 6 years after FOLFOX.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I have this "feeling" in my right side that seems to be there all the time basically...not quite what I'd call pain...but it's the feeling if I push myself it would become pain. Absolutely nothing on that side shows up on scans, except they can see the surgery site....I'm thinking it's just that, scar tissue or whatever. Hope you feel better soon.

Luckygirl2
Posts: 308
Joined: Mar 2012

Well, I'm slowly coming to the conclusion that my feet and hands are forever changed, my new normal! :) Along with my tummy area never being the same as well! But God has granted more time on this earth! I am thankful for my life and for my husband for planning a vacation of a lifetime that instead turned into saving my life for one thing I'm sure of ,- without my health issues on the trip and with my cancer being aggressive ( they did not believe I'd had it long) I would either be very ill right now or not here at all!

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

First, Our thoughs and Prayers are with you for a recovery!

I am 9 months after chemo and still have neuropathy issues. If I am feeling a little down the neuropathy is worse. I did the FolFox for 6 months.

I still do not have full sensation in my fingers and feet. My taste mostly came back. My sight is still defocussed, when I am stressed. (I got bifocals to help.) My balance is still a little off and I stay off ladders. (I was an Audio Engineer and up and down ladders all day adjusting and testing speakers.) The stomach and digestive issues are under control. It does get better!

Best Always! mike

Luckygirl2
Posts: 308
Joined: Mar 2012

I had oxiplatin, folfox and 5 FU and then went to xeloda when I couldn't do the 5FU thru my port. I was getting it every other week till I had to do the xeloda then they upped the dosage on the other two and I went to every three weeks plus 14days on 7 days off the xeloda... I think I had one "free" week a month! Oh and lets not forget whatever that was they would shoot thru my port that would set me on fire and then make me Think I had peed my pants! :) that always got a big whew out of me! I had thought my chemo was throwing me off balance and I'm glad to know that my focusing issue has nothing to do with my new glasses :). I just increased my font size on my work computer today ! My taste buds are still wacky..but what i would like most is for my insides to find their new homes and be happy. I'm getting really tired of looking at my poo and spending too much time in the bathroom! :)

On another note, is it just my weird sense of humor that I find it odd they would name a drug that makes you so ill you want to just punch something, 5 FU because I really wanted to say that a few times. ( not directed toward anyone) but ...

I chose to laugh instead of cry several months ago so forgive my weird sense of humor!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Luckygirl!

thank you for sharing.

I love your comment that you choose to Laugh instead of Cry.
I've said that one a few times and it definately helps a lot.

I fainted one time, and i was in the house by myself which rarely happens with my wife and four kids at home. I went down pretty hard after blacking out... i came to pretty quickly... i was laying there on the floor and i remember my first thoughts.... Okay, should I cry about this or laugh?

I laughed for a second... looked in the mirror.... no blood or anything, and i picked myself up and just had to laugh about it.

when my oldest son came home, i told him about it and he seemed real worried... I said to him... do you think Fainting is as bad as this Cancer? Let's laugh about it! He was amazed by my attitude, as it was NOT like that at all some four months ago.

I find that the more people make me laugh, the more i feel like pushing on harder and harder... and i want to lift others up as well.

I agree with you 100% on the 5 FU... I actually SAY IT to my nurses, and I don't think i'm the first.

remember the movie Bucket List... one of the items on the list is to Laugh till you Cry.

During my chemo, it seems like i find myself at a point where i Cried till I Laughed.
and, i always encouraged my family to help me laugh, whenever i was at a low point.

Cheers to laughing more and more.

my best

joe

Luckygirl2
Posts: 308
Joined: Mar 2012

You know, I didn't breakdown and cry when I was given my diagnosis, I think my surgeon was concerned I was not concerned enough because he kept repeating how serious it was. I figured since he put me on the surgery schedule before I was even out of the procedure room it was pretty serious. But boy have I cried a lot since then....everyone thinks I'm strong but I'm really not. But, I love to laugh and I try to do that as much as I can. If I didn't I'm afraid I would find myself in a very dark place unable to find my way out. I'm really very scared. I'm in " remission" but what does that really mean....is it just sleeping waiting to pounce again! Will it ever leave my thoughts, will one day ever go by where it is not in my head...see I could really get in a bad spot I really prefer to laugh, I don't want to cry anymore.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Hi Lucky Girl

i agree with you so much... on the outside, i'm so positive for everyone around me.
but a really good friend of mine took me to breakfast one day... and after about a half hour he gave me the..."hey Joe, this is your pal JimmyZ here...give me the straigh scoop on how you are REALLY doing".

i had't cried that day, but he helped me to lose it. and, i shared with him... 80% is the postive joe... but 20% or more is the "oh crap, what's going on with me and will i really beat this kind of negative Joe".

I call the Negative Joe the Joe that wants to be "prepared" of the "realistic joe".
and the positive joe is the guy that needs to be strong for my wife, four kids and all my friends and employees. I try so much to help them learn from my cancer fight. I want to share my vision, my ideas and my pasion for life... and hope to help them to help themselves. So, my "helping others to help myself" is kind of a mission.

this encouragement from others, often helps me get through those difficult days (and nights). I try to inspire myself and inspire others.

check out my caring bridge blog site:
http://www.caringbridge.org/visit/joemetzger

this will give you some insight to me and my sharing of my story with others. and, you can see posts from friends and family.

stick with me here... I have some more to share.

23 years ago, two months after we got married... i was diagnosed with Non-Hodgkins Lymphoma. I was 25 then and was "invincable". But, for the next 10 years... EVERY time i was scheduled for blood work, ct scan or x-rays... i had anxiety. My wife would sence it and she always had such a positive attitude that i could beat this. And, I did.
when i was 10 years in "remission"... the docs told me to come back every 2 years. but, i went back every July as it was part of my dealing with this.

fast forward to 2011 and i was feeling like crap... just run down and they ran tests and i was anemic. My hemoglobin count was 8 and my CEA marker was like 75 or something crazy. all of my blood work was way out of wack. When i was told that i was stage IV, I asked...."so, how many stages are there?". Stupid me for not knowing more at the time... but i wasn't thinking clearly. My oncologist... the same guy who saved my life last time with radation stated "this is VERY serious and you might want to get your affiars in order". I fired that guy a day later and went out to find a new oncologist that felt i could beat this.

I cried a lot... but asked for something to pull my emotional highs and lows a bit closer together (yes, i might be a Type A guy). they put me on Zoloft which was very strange for me for the first four weeks... but that stuff works. I'm still emotional, just a bit less extreme on my emotions.

I "choose" to laugh more. Read fun or funny stuff. Watch shows or movies that make me laugh or "take me away" and try to enjoy activities that help me to Forget that i'm deep into a cancer battle... again.

BTw... my current colon cancer with over 30 mets to the liver... they recently conclude that it was CAUSED by my radiation treatment from 23 years ago.

anyway, i still have anxiety and understand your anxiety of you 'waiting for it to return' but worrying about it won't stop it from coming back and it won't help you in this fight... removing anxiety will help you keep the cancer away.

I know it sounds easy, but i have to tell you... it worked for me for years.

Live life and enjoy every moment of being NED!

I wish you the best

Joe

bspangler47's picture
bspangler47
Posts: 145
Joined: Sep 2010

Hi Joe,

I just read your post, it bought tears to my eyes. Cancer and the treatments is something else. Had colorectal cancer stage 3 cat b in 2009, went thru treatment until 2010, didnt receive all my chemo doses, because it was to hard on my body. I still fight depression and anxiety. I have been on Paxil in the past. I know take Ativan as needed, I have Vicodin for pain as needed. I get pain in my bones that sometimes it is unbearable. Have a stent in my right urterer(sp) to help the urine drain, get that replaced every 3 to 4 months(due to the damaged from the radiation), had a feeding tube for about 4 months back in 2010, plus several other things. What I am currently going thru isnt anything compared to what you are going thru now. I admire you,

I also stopped by a Korean store today, and was talking to the owner, she told me that when her Dad went thru treatment in Korea for cancer, they also offered a class on "Laughing".

I find myself totally different after all this. Dont find myself laughing as much anymore. I am a single Mom, 49, with still a 12 and 9 yr old at home. I have 2 grandsons so when I feel really down I go see them. It helps me out alot.

Thank you for sharing your story. U r someone 2 admire.

Barbara

strattonmeier's picture
strattonmeier
Posts: 6
Joined: Apr 2012

Dear Luckygirl2,

I hear you...everyone thinks I'm strong but I'm really not...me too. I hide it well, but damn I'm scared. I am newly diagnosed (stage 4 with 7 micro liver mets) and working thru the emotions. I too have stomach pain, daily. and trying to find a comfortable position is a challenge - but at least I'm living. And I'm thankful for that. I have great motivation and support from many. I love living life, and prefer to laugh instead of cry. But every time I do cry, I remind myself that I am not giving into the cancer. You are in my thoughts and prayers. Good juju to you, my friend.

Love,
Shauna

Luckygirl2
Posts: 308
Joined: Mar 2012

I had oxiplatin, folfox and 5 FU and then went to xeloda when I couldn't do the 5FU thru my port. I was getting it every other week till I had to do the xeloda then they upped the dosage on the other two and I went to every three weeks plus 14days on 7 days off the xeloda... I think I had one "free" week a month! Oh and lets not forget whatever that was they would shoot thru my port that would set me on fire and then make me Think I had peed my pants! :) that always got a big whew out of me! I had thought my chemo was throwing me off balance and I'm glad to know that my focusing issue has nothing to do with my new glasses :). I just increased my font size on my work computer today ! My taste buds are still wacky..but what i would like most is for my insides to find their new homes and be happy. I'm getting really tired of looking at my poo and spending too much time in the bathroom! :)

On another note, is it just my weird sense of humor that I find it odd they would name a drug that makes you so ill you want to just punch something, 5 FU because I really wanted to say that a few times. ( not directed toward anyone) but ...

I chose to laugh instead of cry several months ago so forgive my weird sense of humor!

bspangler47's picture
bspangler47
Posts: 145
Joined: Sep 2010

Hi, I first started treatment in 2009 after my surgery in March. Had 6 wks of radiation along with 6 weeks of chemo (24 hrs 7 days straight), I would go in on the beginning of the week Mondays to get a new set up etc. I had the radation everyday also except Sat and Sundays. I couldnt wait for the 1 month brake I had. Then started back up again in July, Went every week. I had the 5FU and some other 1, cant remember the name. My last treatment was in 2010 I believe, I didnt receive all my treatments because it was taken a tole on my body. I was in and out of the hospital/ER, for several reasons. I also had a temp ilescompty bag. I couldnt wait for the reversal. That was a big mistake. One I am thinking about changing soon. I still have probelms with my hands, I could be holding something and all of a sudden it drops right out my hand. :). My feet tingle at times. Eyesight has changed somewhat, but my youngest 1 (9 yrs old) says it is because I am to old LOL. My "insides" seem ok on somedays and or others I will be spending all day/night in my "office" at home. I joke about taking my diaper bag when I go places with my children. Before we go I take Immundium and/or Lomtiol so I am not running to the bathroom.

I have been told chemo and radation stays in the body for yrs. Many ppl said I should do the jucier thing, said there is such a difference. And the budwig diet.

Minnesotagirl
Posts: 141
Joined: Sep 2011

BSpangler47,

I hear you on everything except I did not have to have a bag. I just wanted to tell you that I started juicing about 2.5 weeks ago and it has made a huge difference on my output... also helped tremendously with my terrible hemmeroids and pain. I always juice organic carrots, 1 green apple, usually large handful of either spinach, kale or parsley...sometimes I add a fresh ginger piece as well. A couple of times I added a stalk of celery and 1/4 fresh lemon. I drink about 16 oz. in the morning. Good luck with it and I hope you get the same healing results as I did~

"Minnie"

bspangler47's picture
bspangler47
Posts: 145
Joined: Sep 2010

Can I ask did u have alot of stools before hand? Can you recommend what kind of juicer to get? I am worried about having more issues. But I think I will try it. Thank you.

Minnesotagirl
Posts: 141
Joined: Sep 2011

Off and on with the stools depending on what I ate...sometimes it 10 to 20 per day and then sometimes 5 to 10 times per day. With juicing I am at about 3-6 times a day so I call that a big improvement.

I purchased the Champion juicer found online at Discountjuicers.com. It was about $200.00 but had to pay about $35.00 shipping. No tax. Received it in about 1 week. I did actually poo orange the first week because I juiced twice a day at first but then I decided to just drink it in the morning ~ 2 glassfuls... I do try to remember to chew when I drink the juice...I guess you are suppose to do that.

I would definitely recommend it but I have seen where some people couldn't juice because it caused them more troubles. For me...it worked. The other thing that I add sometimes is beets. Always 4-5 large carrots, always a green apple, and at least 1 large bunch of greens (kale is pretty good and tastes pretty good). Last week I made one that was actually yummy...sometimes they aren't so great but I drink them anyway. Last week I added small amount of pineapple with spinach. Other times I have added to the mixture (one of these) 1/4 lemon (whole lemon) celery, frozen rhubarb, frozen cranberries, fresh ginger chunk, frozen mango. I think the main thing is that you need to keep it not to sweet and keep it mostly carrots, apple and greens. I did try the v8 juice drink that came with the machine...not for me! I use only organic vegetables and fruits.

Good luck...a big investment. Do some homework on here. Pull up "juicing" and it will pull previous posts by some really experienced juicers. You will also see some people who couldn't juice.

Let me know if you need anything else. I am more than happy to help you if I can. It is so overwhelming ~ hard to know what to do~

"Minnie"

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hello Luckygirl2, I thought I’d let you know that I too still have very painful neuropathy being 2 years since last chemo treatment. I had oxaplatin, folfox, 5 FU, and 45 radiation treatments. Mine seems to be mostly in my feet and legs but hands are numb and cramp up from time to time. Make it hard when I’m trying to work with small objects. Last week I tried to start a small nut onto a small screw. After 40 minutes of trying and dropping the nut like 6000 times I finely had to give up. I was so mad but just started to laugh because I know I’m just lucky to still be here.

Brooks

Luckygirl2
Posts: 308
Joined: Mar 2012

Trying to button my house or put those teeny weenie backs on earrings drive me crazy! I was on lyrica but stopped it about 10 days ago. Was bloating, cramping, and had horrible gas - that has all stopped but the pins and needle pain is kicking in in my feet and my hands cramp/ draw especially in the mornings. Trying to deal with chemo brain now....

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

could the craps be a side effect from the drug you're on for neurpothy???

i've read a bit about that drug, and some people have strong side effects from that.

i'm not sure what the side effects are... but it might be worth looking into.

RickMurtagh's picture
RickMurtagh
Posts: 585
Joined: Feb 2010

I had the cramps go away. last friday, about 2pm for about an hour. no - really it is not bad at all now ( 2 years later). neuropathy has always been a pain for me, sometimes literally. not to scare you and it can be a pain, but life can go on - in fact it keeps getting better for me.
here is to hoping it keeps getting better for you.
Rick

Luckygirl2
Posts: 308
Joined: Mar 2012

Love your humor! Had to read your profile, I know your feeling about the poo! :). You made me smile today! Never thought I'd I'd spend so much time looking in my toilet! Hope all is well your way!

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I had my last chemo treatment 13 months ago. I still suffer from severe foot pain. Some days are worse than others. It's worse when I where boots. I'm in the construction industry and need to wear boots a few times a week to visit jobsites. Thank god I dont have to wear them everyday as most of my day is in an office and I can take off my shoes and put on slippers when it gets that bad. (usually by 2pm) I hope someday it will go away but I'm not holding my breath. Looking at Poo has become very normal as I have a perm colostomy....sometimes I find myself talking about it to co-workers who look at me really funny????? Hey it's my life and I do have to say i'm happy I'm still here reguardless.
Some days I want to scream my feet hurt so bad. But it's better to be on this side of the earth. I wish you the best. Tom

Luckygirl2
Posts: 308
Joined: Mar 2012

I keep a pair of very warm and soft booties in my purse and I have two pair at work! As for my shoes, I wear for comfort pretty no.. Barly comfortable yes. I'm lucky to have a great boss, he never knows when he's going to find me with my shoes off and my booties on with them propped up on my desk! :) I've come to the conclusion I can live (operative word being live) this and if by chance I wake up one morning and it's gone...I won't miss it! :)

Before CC, the thought of talking about my poo and poo habits was far from my mind, now it is seems perfectly normal, which should probably feel very weird, but oh well. Luckily I work with some great folks!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

HI,

I have the neuropathy but I can't say cramping.. I don't consider the neuropathy painfull just really discomforting.
I tried the neurontin and I couldn't work on it,, it made me feel loopy for almost 12 hrs on just one dose and it was the lowest the dr said,, and then she said if that didn't help neither would any of the other as that is the effect they all produce ,. so I gave up.

My chemo ended in Nov 2011 and now I am on Xeloda for found mets in lungs,. boo..

I agree the name of the drug is interesting,,

I agree humor is needed to get through all of this..

Try to smile and laugh as often as you can..

Donna

Subscribe to Comments for "Cramps and neuropathy will it ever go away?"