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Neuropathy anyone? My concerns

truckingalong
Posts: 444
Joined: Aug 2010

In looking back before I had this formal diagnosis, one of the earliest symptoms that I had related to HL (or something else?) were the muscle/nerve body aches all over in the evenings and they were unbearable but ibuprofen save me from having them. That was in the fall of 2009. Last winter and my dr gave me shot of vitmain B 12 and vitamin D supplement plus multi-vitamins and I did not have those body ache but this unfortunately delayed in finding the diagnosis. Fast forward to present - after my 1st chemo last week, I started to feel tingling in my hands and feet and now I have trouble having the proper gait and walking stiffly. I checked the info that it is neuropathy which its effects tend to go away after chemo treatment ends within one year. I wonder if my body aches were the predisposition factor for neuropathy and my nurse said it is rather early to have this effect. I have 6 months still to get treatment... Whatever, do any of you experience or are familiar with this ailment? Sure hope this goes away eventually. Thanks for your support!

Good day!
Liz

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I had it Liz, but it wasn't until about round 3 that it started. Tingling in fingers first which made holding things really hard. Knives, pens, buttons stuff like that became adventures. About the 4th treatment is when I noticed that my legs didn't feel like they were supporting me very well. Felt pretty unsteady through the rest of my treatments. After the 4th round my onc stopped the vincristine, which was wonderful!

The leg cramps and neuropathy got better after a few months after treatments. Hang in there, it'll get better.

yesyes2
Posts: 464
Joined: Jul 2009

Hi Liz,
I started feeling the effects of neuropathy within the first week of RCHOP. Neuropathy is a side effect of the Vincristine, a very nasty drug. After the 3rd cycle my onc reduced my dosage by 50% and actually discontinued the drug by the final chemo. There are several others on this site whos dosages were also adjusted. The effects of neuropathy do not necessarily go away after you are done with treatment. I know people who still have problems with gait, tingling and numbness 5 years after treatment. Besure to let your doctors know at your next appointment.

By the way vincristine also can cause sever constipation. This may be part of your stomach problems.

Best of luck on your second cycle,
Leslie

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I too got the neuropathy very early on. I always discussed it with my MD and as others have said, the vincristine is the culprit and that was taken out of the cocktail for me also. My MD said it was the least important drug and I would do fine without it and I did. I think when I dropped the cup of coffee in my lap was the eyeopener for me. I also had it badly in my toes but didn't realize it until it started to go away and I discovered a really sore ingrown toenail that I didn't even know was there because of the numbness! It takes awhile to go away but the key is to not let it get any worse. Good luck. Mary

truckingalong
Posts: 444
Joined: Aug 2010

Thanks for all of your comments. I am real grateful!! I've been real scared because the internet info said worse stuff. Alright, I have appt. with my physical therapist/chiropractic who treated for my back issues for years. He just informed me that he too has Lymphoma which surprised me. He worked through chemo treatments last year and now it is in remission. I never noticed except he was bald and I thought it was for fashion. LOL!!

Oh, right, no wonder - I have been having constipation and terrible stomach cramps. Now only cramps. Huh. I eat pretty much anything...

Question: do you continue to exercise? Or is that too much for the body dealing with neuropathy?

Thanks again,
Liz

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Liz,

Your body will tell you when enough is enough. Do what you can when you can, it's enough.

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Beth for the tip and also for your wonderful post the other day wishing all of us well in our recoveries. I just love this support. Although, I get paranoid when the side effects will bite me but I realize that it is all in my head and just go with the flow. I am learning to do this.

Good day,
Liz

happy-one
Posts: 1
Joined: Sep 2010

I sometimes am a little slow on the up-take but during the past yr & a half i finally figured out that if my toes STARTED to feel cold to put on socks right away. if i wait too long, when I finally do put them on they will start to burn & will sometimes keep me awake all nite.i'm a yr & 9 mo. into remission & still have the neuropathy in hands & feet.I do a juggleing act in the kitchen & sometimes can't keep track of my feet but everyone knows I don't drink so we just laugh it off !!!

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Liz,
Sorry to hear that you are experiencing the side effects so early on.
There really is no telling how one will react opposed to another. All during treatment I felt as good as could be expected, but within the first year after I started having symptoms of neuropathy. It startend with numbness in my foot, with my hands sometimes feeling like needle pricks. Also noticed that my knees have a tendency to give out for no reason. I still exercise often( hike, wieght traing, swimming, biking)almost everything except running, that seems to bother me the most, but stay very aware of what your body is telling you. Yoga is also a great way to stay fit and limber.
Take care
Dave

truckingalong
Posts: 444
Joined: Aug 2010

Happy-One and Dave,

Thanks for the feedback. Will definitely use double socks if needed because I always wear one pair all the times including sleep. Yeah, this morning, I went out for a walk with hubby - using him as my cane, ha ha. Only needed to hold him when walking steeply down the hill. But walking up - pretty good.

With good thoughts,
Liz

MichelleHenry's picture
MichelleHenry
Posts: 11
Joined: May 2009

Hi Liz! I have to say, that Vinchristine is what caused the Neuropathy for me as well. As others have said my doc lowered my dose to 50%, then discontinued it when I was falling. I was 29 when I was diagnosed & wouldn't want to be older! The Lymphoma really made me weak! It kicked my butt! I love to see that you seem pretty upbeat! Keep it up and always talk! It's important to talk about what you are feeling! My Neuropathy got so bad that I had foot drop & didn't have any reflexes. I would trip on my own feet. Literally stepping on my own toes with the same foot. I finished chemo 05/05/09 and I still have problems in my legs & with chronic pain due to it. I wish you the best of luck & will be praying that the neuropathy will ease right away, the chemo will go smoothly with little to no side effects and that the Lymphoma will DIE!
If you ever need to talk you can email me so I can give you my number, or you can give me yours!
Keep up the hard work! Keep smiling & know that the Lord is in control & if He brings you to it, He will bring you through it!
Michelle

truckingalong
Posts: 444
Joined: Aug 2010

Oh thanks, Michelle for your thoughts. Wonder how you are doing to date with your treatments? Sure we can talk sometime! Yes, I want Lymphoma to die for good!

Liz

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Liz,

Thanks for your question on neuropathy. I have been wondering about it also. I'm the old guy who's only on his second treatment. I have had VERY little in the way of side effects so far, but the neuropathy is one of them. I started having it after the very first treatment. For me it has been mild, just in my middle toes. So I am watching it and, of course, I will keep my onc informed. But I do appreciate your question and all of the responses. It helps to know.

Thanks to all,
Tom

allmost60's picture
allmost60
Posts: 3183
Joined: Jul 2010

Hi Tom,
In the last two days I have also felt a slightly cold tingling feeling in my middle toes on each foot...no where else. I'm also watching it very close since I have only had one treatment and was hoping this wopuldn't happen until further down the road. Every day is like Christmas...a new gift to open and then decide what to do with it!!...ha!...Sue

bk1950
Posts: 43
Joined: Apr 2009

yes i also had numbness in my hands,legs and feet and worse when i went to bed at night. what i noticed was that the coolness of the bedsheets made them feel better so i slept with a fan and no covers on my feet and legs. the numbness did eventually go away after i was finished with chemo (cvp and rituxan) but it did take a couple of months. hope you will have a fast recovery, take care.

truckingalong
Posts: 444
Joined: Aug 2010

Michelle, Tom, Sue and all,

Thanks for the comments. I surely hope that my case will not get worse. So far my 2nd chemo experience last Tuesday since then generally is better than the 1st. Knock on wood. Can walk alright. Now it is the headaches and the neurpogen daily shots to keep up my WBC count. But with a surprise twist, on some hours, I perked up and feel full of life with energy and ate like crazy - other hours, I was in the dumps being limp and weak. I see that the stuff kills both good and bad cells but the good ones keep catching up faster than the bad ones. Makes me feel hopeful and look forward... Hope the same for all of you.

Liz

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