Vent about Permanent Neuropathy
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Good for you Minus two and Thank you! I am really proud of myself for quitting smoking. I know I can never have another one though. Never ever!
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i quit also - tho there were & still are many times when i'd like to light up about 10 & smoke them at the same time LOL but i just couldn't be doing everything i was doing to get rid of cancer & smoke - something known to give you cancer. Now I can't stand even the smell, which is difficult because the DH still smokes quite a bit
so has anyone tired the sunburn relief gel on their feet? it has lidocaine in it & it really does provide some relief for me...Walmart has a brand that's pretty cheap
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hmmm, gonna look for the sunburn relief cream! thanks for the thought
yeah, while I never smoked, a former landlord of mine who was a reformed smoker and an AA member said to me that stopping smoking was harder then giving up drinking!
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Good for you Notbuyingit!0 -
well diet and weight loss is my challenge, of late, I have sort of settled for level weight with no gains~~
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LoveWins & NotBuyingIt - if you have a free minute, drop the Stop Smoking Support thread and tell us the story of how you quit and what worked for you. We have people who are just starting the journey, some who are still trying & some who are a ways out like me (7 years). We're always looking for good new tips.
Bosum - I don't agree with your relative. I had no problem staying on various diets or stop eating anytime - but the smokes were a royal B**ch.
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Oh Bosum - so sorry today is a bad one. Thinking of you.
I've developed a UTI and from my research, antibiotics like Cipro & Levoquin are known to "cause or aggravate" neuropathy. Had an argument w/provider the last time I needed an antibiotic but just called my OB/Gyn this time & she understood immediately. One more thing we have to watch out for since most docs don't worry about it.
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don't know about muscle atrophy -certainly hope not - thought nueropathy was more about nerve ending damage. Tho i definitely feel it also in my legs sometimes - i've been getting those shin splints at night and legs take some getting going in the morning...Onc says the Arimidex doesn't make it worse but i'm not so sure.
My Onc had said if you have it over a year it might be permanent - but I have read that sometimes it takes more than a year to dissipate
BosumBlues, did yours start during or after chemo?
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Bosum - I had the weakness & wobbly legs during chemo. This summer I've been trying to do water aerobics & have strengthened my legs some. Since chemo my feet & legs up my calves to about sock height are mostly just dead, as are fingers & thumbs. As time goes on I seem to be getting prickles in my toes sometimes but don't know if that's good or bad - improvement? or moving towards pain?. I do still have balance issues sometimes but the weakness in my legs is gone.
NotBuyingIt - I am 12 months past Taxotere/Carboplatin, but only 8 months past Adriamycin/Cytoxan, and am still on Herceptin through the end of this month - so I'm still hoping for better times. I went to a neurologist who said two years. She said 70% get (some) better - which is a sliding scale from horrible to improvement - but probably not back where we started.
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I am glad to know that somebody else describes there legs as feeling like jello. Mine usually happen when I am tired and been on them to much the day before. I loose my balance often and feel like sometimes I look like a drunk walking. I have wondered about muscle atropphy this week in my feet. They feel funny and the never ending cramps seem to be pulling the muscles...I don't know how to explain that. I will say that to bend my toes feels like my foot is pulling apart at the arch. I can only moved two of the toes and the middle one slightly. I don't look for improvement since next Feb will be 5 years.
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BosumBlues...I did have improvement just not what I wanted improved. The tingling numbness did go all the way up my thighs. That went away. I have some numbness on the inside of both my calves so yes some improvement in my legs. I also had numbness in my mouth which went away and I only notice it slightly when I am extremely tired. I was told to give it three years. My fingers are also not as numb as they were at the beginning. It's just my feet that I have not seen any improvement. It would not be bad if I could keep my environment at 68 degrees all the time...however I live in the hot south. Heat makes my feet throb...so I stay in my cool house as much as possible but I can't cool it at night like I would want it.
Don't give up!
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I have neuropathy in my hands and feet but I also have another weird symptom. As soon as I start getting a little on the warm side, like I'm going to start sweating, I feel like I've put on a needle shirt. Pins and needles all over my upper body and down my legs. Very annoying. As soon as I can get cooled off the pain goes away. My MO tried to tell me that it was hot flashes but I don't think so. My hot flashes 6 years ago didn't feel anything like this. It is like my sweat glands get fired up and produce pain. Anyone else have this?
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My neuropathy started on AC. However since then we have learned that Levaquin also can cause neuropathy. I took several rounds of it during chemo because of getting sick due to white cells dropping so low. I ended up having an allergic reaction to Levaquin when I have my hysterectomy. It all makes you wonder but to be here still 4 years later with my girl, My girl was six when DX.
If you are still on AC there is ice therapy for your hands and feet that some had luck with.
GraceB1...To me it sounds just like my feet feel when they get to hot. I am on Arimidex and take it after supper. The hot flashes hit around 2am. I don't sweat just this feeling of being really hot. They are nothing like they were at first but my feet take for ever to cool off and loose that pins and needle feeling. I sometimes run cold water over them. In the winter just standing on a cold floor helps. I have recently thought about making something to wrap my feet in. With school supplies out there are so many nice gel freezer packs that could be molded around my feet. It's a thought that I need to look into.
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kittydog I just sent you a PM
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lovewins you're still early days yet, I'll keep hoping for you that your nails grow back in
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GraceB, yes, I have that too!!! My neuropathy was bad enough that I only had 2 taxols (thanks in large part to everyone sharing their experiences here I knew to take my dr up in it when she offered me the option to quit - so thank you, best wishes for all who are continuing to heal/and my thoughts are with those who have this as a permanent problem and I sincerely hope they can figure this out - who will get it and how to fix it - and soon). Although all the poor sensation / stumbling / dropping things has gone away for me I do have that super weird pins and needles with heat (I actually posted more details about it the other day under the hormonal section under "stinging skin on tamoxifen?") and heel pain if I walk too much. It makes me wonder if the skin is maybe a holdover from my neuropathy instead of the tamoxifen? I did have shooting pains all over for days after each of my treatments, that then settled into my hands and feet for a while. Or maybe it's a combo of the two? It did seem to get a little better on my 2 week break from my anti-hormonals, but maybe my exposures to heat were just different that week. Regardless, it does make choosing/ timing activities in the summer difficult. I wasn't really able to do much of anything outdoors before 5pm any day this past summer because it's really too uncomfortable for me to ignore when it comes up, I literally feel like I want to crawl out of my skin.
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Bosum - When I started chemo i took 1000 mcg of B-12 once a day and 100 mg B-6 twice a day. Continued Centrum Silver which has some B vits. After chemo when I saw the neurologist, she said cut back to one a day of the B-6 since apparently too much of that can also cause neuropathy issues. After rads I started Biotin too, but that was for hair & nails. Still taking all three.
Several women recommended L-Glutamine during chemo - 5 grams 3x a day to ward off neuropathy. I had so much trouble drinking/swallowing anything at all I just couldn't mix this powder and add it in to my regime. Maybe if I had I wouldn't have so many problems now.
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Bosum - yes still taking 1000 mcg of B-12, but my PCP wants me to switch to a B complex. However I'm 9 months from last chemo and I can't really say that any supplements seem to have made much difference in the lack of feeling. But then I don't know "what might have been" w/o them.
How far are you PFC? Distance out from chemo is what helped my wobbley legs. I did go to a couple of PT sessions & they gave me some exercises. Also I did water aerobics this summer. Both helped with my balance some (as long as I don't close my eyes in the shower). Or maybe I've just learned to compensate. Like you I'm fortunate not to have much pain but my feet are still like numb blocks of ice. My fingers seem to have a little more feeling so I have hope, but the process is infinitesimal. At least I can do up the zippers on my pants now - LOL.
Can you get a referral for PT?
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Oh yuck Bosum - so sorry. How far are you PFC?
You've probably already done this, but I searched 'balance exercises' and it looks like there are several good sites. Maybe you could try some of those like Mayo Clinic or NIH. The main difference I saw at the "clinic" was the bars to hold on to so I wouldn't fall. Also some interesting sites by entering "neuropathy exercises". Sending hugs!!!
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I agree, a bit of research turns up some nifty balanced exercises. pal at the gym this morning said someone had suggesting standing on one of those small inflated donut things , I forget what it is called but it is blue! anyway, she stands on it while brushing her teeth in the morning! wish I could remember the name of it but plan on buying one soon!
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Bosum - don't give up. 70% of people w/neuropathy get better - not necessarily back to where they were but better than they are now. It's a sliding scale. The changes & improvement can take two years or more.
When did you finish chemo?
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Been having some days better than others. A year ago, when it all began, I was at or over 50% numbness and balance seemed off a little and I had cold/crushing discomfort. Used to think righty was my "bad" foot, but it has mostly evened out and they are both around 20% numbness now, just different areas. Balance back to normal and my foot pain now usually comes from fibromyalgia (which I had previous to chemo.)
Because I am not totally numb, my brain has been doing a good job working with whatever nerves are left or those that have returned. I can feel textures with my feet! Even in the early months, I had some sensation of that. I know I mentioned liking to wedge my feet into my soothing micro fiber sofa. Lately, I can also feel silky things on my feet and that used to feel like nothing before. Still am not good at detecting water temperature.
So far, I have not had a single day where I did not think about this neuropathy. It's there constantly. I hope to keep improving and hopefully my permanent neuropathy gets to the point where I can have a day where it doesn't enter my mind. I am at that point now where I don't think about cancer daily, but the feet are a constant reminder of the awful treatment for the awful cancer. All I want to do is move on. Quit holding me back, feet!
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I so understand your comment, dang but I am 6 yrs out and my feet are still good only for short trips! balance, well working on it and the other day someone at the gym said to me that I was walking better than a year ago! gonna take it and keep on doing what I am doing!
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proudtospin, That really says something! It must have been more than a minor improvement for someone to have noticed and commented. We don't even realize our s-l-o-o-o-o-w healing day to day, but then one day we look back and can say, "I am a bit better than _______ (last month, last Spring, last year.)
Random CIPN story: I really only had one harmful incident due to these feet. Last Fall, I was numb to the point that when I went out for lunch, my foot fell asleep when I was sitting only, because of CIPN, I couldn't even tell it was asleep. I went to stand and fell over into a wall, severely twisting and spraining my ankle (ligaments still twinge to this day.)
Related: The other night, my foot fell asleep when I was sitting cross-legged too long. Only this time when I got up, I could tell it was asleep, so no injury. The funny thing is that as the blood returned, I had none of that pins and needles feeling. Still not enough nerves to feel that, I guess.
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eli, I have had my feet fall asleep at times, actually I am sitting on sofa now with feet up.....they are sort of tingling~~
I switched trainers at the gym recently (other guy got new job and had to stop PersonalT) and the new trainer gave me some very dif things to do. Some I can do at home. One is bouncing a big ball as she did an analysis and said it was more my coordination....dang if I do think that is helping! I always knew I could coordinate hand eye!
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I was just fitted with a new foob by Amoena and I really like it. However I tried a new one but I can't remember who made it that I really really loved but it wasn't being made in my size yet. Light weight and felt so soft. You could actually fold it in half. Sure hope next time they have that one.
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elimar I'm sorry you're having down days right now. It does get to you sometimes more than others.
proudtospin, the bouncing ball is a new one, that is interesting
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kmmd---yeah, the bouncing ball is crazy but helping me. I meant that I had no hand eye coordination in the above...was a total failure at tennis or anything of that nature!
I have been known to hit my toe against the wall, never feel it and only realize it when the toe turns black! dumbo here
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Hi Everyone,
This is my first on this forum. I finished taxol on Aug 25. I developed a funny sensation around my mouth around treatment #6. Then the tingling started on to my fingers and feet around #9. Weird enough, a funny sensation is on the top of my head and areas around my face which is most annoying. I had seen a Dermatologist Oncol and he said it is most probably from the hair folicles. I even have numbness in my upper abdomen. I have numbness and/or tingling, but no pain - sometimes I get zingers in my feet, but nothing terrible.
I had an MRI and CT scan of my brain which thank God, came back normal.
My MO sent me to a neurologist oncol. which he said this is nothing new to taxol. It is neuropathy. He prescribed Lyrica. It mostly deals with nerve pain, but he said we will try it to calm the nerves down. Taxol and other chemos over-react the nervous system and maybe the Lyrica will help. He said "time" is on my side. It should go away with "time". He said maybe not 100%, but it should lessen. He also disagreed with the Dermatologist about the sensation on the top of my head being from loss of hair and folicles. He said we have a massive amount of nerves on the top of our head. It is neuropathy.
Has anyone on this forum had any positive relief with time? Anything you can share will be greatly appreciated. Success stories??
Marie
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Marie: If you page back through this thread you will see that most of us have had little improvement. My neurologist said 70% get "better" w/in 2 years. That usually won't mean ALL better but some better on a sliding scale. "Lessen" is a positive word. I'm one year out PFC. Feet are numb & going up my calves. Fingers are numb & I couldn't do up the zippers on my pants. I refused to take any drugs for the time being since a) I wanted all the other poison out of my system so I could get a true reading, and b) although my feet are blocks of ice & I had balance problems, I didn't have much pain - just numb w/occasional tingling.
One year down the road: fingers still numb but a little better than they were. I can sometimes pick up pennies from a flat surface now. Some fingernails still lifting from the Herceptin and pseudamonas infection under the nails and I think (I hope) the pain I have in my fingers is from that and not neuropathy. Feet are still numb but some tingling in some toes some times. The balls of my feet feel like iron when they hit a bare floor, like walking on pure bone, but that is some feeling anyway. I'm aware of the numbness going up my calves so maybe that means it is improving. I don't think my balance is any better but I have compensated. I walk like my Dad when he was 90 (ugh - not pretty).
My hat's off to all you ladies who have to live with constant pain.
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