Vent about Permanent Neuropathy

Oh Bosum - sorry about the bad day. It your feet weren't hurting I'd tell you to go kick something - but maybe not a good idea. Hope tomorrow is better.

Eli - I'm still using B-6 & B-12 that I took during chemo, but will go to a B complex when my stock is depleted. I haven't taken any supplements (vitamins) for 3 months since I wanted a "clean" slate when they did the last CT w/contrast and bloodwork. Planned to start again 2/1 but somehow I've lost the habit.

I would not be too worried but of course tell your doctor what occured4

I took a very lo dose of it for a while, stopped when it did nothing but make me feel stupid and I had a hard time waking up, googled it and some folks take HUGE doses of it, it did not think it did anything

BB - mine does not have that warning. Strange.

No further med mix ups lately my friends! Clear headed Valentines wishes to all!

formydaughter - please keep us updated on your friend's progress w/acupuncture. And let us know if you try it.

I haven't posted in a while either, but wanted to add my update....

I agree with others that time helps ( a little ) and cold weather hurts (a lot). I am two years out from chemo and I have about 80% improvement in my right foot... most of the time it seems almost normal. My left foot has improved some... maybe 50%, but some days it still feels as bad as ever. Some times the numbness goes all the way up to my knee. However, overall some improvement.  But as it is winter and snowy here in Denver part of the time, the cold absolutely makes it worse. We are headed to the mountains this weekend to cross country ski and snowshoe, which I LOVE, but I am already dreading the way my feet are going to feel.

I should add that my fingers are almost 100% better. I have full function, although my "penmanship" is not what it used to be...I don't think that will ever come back...I get stiff and sloppy after just a few  lines.

One other thing that I may have mentioned here - with the support of my oncologist, I am taking a little "vacation:" from my Herceptin/Perjeta treatment. I haven't had an infusion since September. I have a PET scan next Thursday and of course, I am scared to death... but the side effects - outside of the neuropathy, were getting so bad for me that I made a quality of life call and decided to give my body a rest and a chance to heal and strengthen, which I think I have done. I really think that the continued infusions were contributing to the neuropathy as well, and that stopping them helped. We'll see what happens when I resume them.

Also - massage absolutely helps. I have started getting pedicures by a woman that used to do reflexology massage, and every time I go for a pedicure she spends about 40 minutes massaging my feet....I swear, they feel totally better for days afterwards. I think it is what someone else mentioned - the circulation - getting the blood pumping really helps. She said that she can feel the parts of my feet that are the worst (and she can) and the parts of my legs that are because the muscles feel different... they are bumpy instead of being smooth. She points out where she feels the bumps and it's definitely the numbest parts.

Thanks for letting me vent! I know my poor husband gets tired of listening to me!

XO

Andi

wow Andi - that is amazing that the muscles feel different in the worst parts. I had no idea this was possible. Since its a nerve condition, I'm amazed that there is evidence in the muscles. I'll have to check me. I agree that massage helps in general! Wish my insurance would cover it, as it is such a healing treat,

Wow, thanks, i am going to try some vicks tonight!

sad to see not too many new posts here! always looking for new things to try

i went back down to 6 hr work days & am trying to go to the pool at least 3 times a week - they have bubbler benches where i can put my feet in the stream - kind of hurts a bit but hoping it helps wake up my nerves.

been feeling like my feet hurt more & am not happy about it - the numbness seems to spread up in to my calves now - scary stuff - can it actually spread? here i am hoping it will go away not get worse!

probably has been discussed here before - but when do you say you have "permanent" neuropathy? my doc had told me after 1 yr - but i have also read sometimes it takes 2 yrs to get better?

I have had neuropathy for the last six years. Hands and feet. Was on Lyrica for 4 years and it did help. I had to stop taking it due to some of the serious side effects I was experiencing. My Dr. doesn't have any suggestions for me other than going back on the Lyrica which I took twice a day.

NotBuyingIt - I went to a neurologist shortly after I finished chemo. She said 70% of people with CIPN get 'better' over a 2 year period (not back where we started but better than we are). I'm 18 months post TCHP. I'm finding a little more feeling in my toes & balls of my feet. Not sure if this is good since more feeling may involve pain & so far I've just been numb. I do notice numbness creeping up my calves some days & other days not so bad. Some days my fingers seem to have more feeling but some days I'm trying to decide if the hand problems are neuropathy or lymphadema that's progressing. Of course that means 30% won't see much improvement. I'm glad Bosum said 3 years. Maybe I won't give up quite so soon. In the mean time I'm hanging in there w/o meds. And here's an exciting tidbit - yesterday I was able to put both legs in my pants (separately of course) w/o sitting down or balancing on a counter or chair. Usually I can't keep my balance w/the neuropathy in my toes & feet so that called for a celebration.

That is good news, MinusTwo! Baby steps (no pun intended.) Last week, I could feel HOT water on my right big toe (the worst numb spot) just a tiny bit. Of course I had to leave my foot under the nearly scalding water for 10 seconds (or 9 seconds too long for a normal person.)

I agree that the pain is part of the regeneration process. The thing is, the nerves are rewiring themselves but they are pretty screwed up and I don't know that they are doing a good job of it. The nerves that "come back" still send messed up signals (IMO) like pain where there should be none. However, they might start to "relearn" the signals properly over time, and the brain is pretty clever about compensating for things. I am a year and a half out, like MinusTwo. I'm at the point where my feel-nothing numb areas have gotten a tiny bit of feeling back---just enough to know they FEEL numb. Those silly nerves!

Hi Ladies,

I don't seem to be in as bad a condition as some of you, but I do have numbness (no pain) in the balls of my feet. I also have the numbness around my face. It used to be around my lips which over time it went away - yay. It felt like dry milk - ugh. Thankfully, that is better. Most annoying is around the sides of my face and around my eyebrows.

I took vitamin B6 during chemo. Then my MO said I could stop taking it when the chemo was over (Aug 25th). I still have this numbness, but I do sense a slight improvement. My internal medicine doctor told me to continue to take vitamin B6 50 mgs not 100mgs. She said it does repair the nerves. What vitamin B's are you taking that you see a better improvement? I used to take Lyrica, but stopped. I didn't get much improvement from it. I also see the Neurologist every 3 months, but he just said "time" is on my side.

Thank you for any input you can give.

Marie