Vent about Permanent Neuropathy
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Eilmar - glad to hear you find the weather is less hurtful. Unfortunately we've had our first cold snap. OK, OK, I know it's Houston, but it did get down to 38 one night. My feet have very little feeling but they are (edited to say feel) FREEZING. I loved the picture of wearing thongs (foot wear - not undies) in the snow on one of the other threads. You'd think I live at the North Pole. I even need to wear wool socks to bed. And I walked barefoot all my life before BC. Maybe 2 years PFC I should go see the neurologist again?
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I get it on the cold feet, sometimes mine are so cold when I go to bed that I have set up my bed with a poly comforter folded at the bottom of the bed, it gives extra cover to my cold totsies
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Last year, my feet got achy & cold as I sat at the computer...I threw a heating pad down under the desk. Gotta do what we gotta do.
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I used to ride bike outside all through the winter, till one year, no way could I find gloves or socks to keep my tootsies warm
I stopped riding in the winter
but now I have been told I have spinal stenosis so thinking that may have been the start of it all
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sorry BB for a bad day just before the holiday
I am with you, do not get why they do not have a better answer about back issues but not ready for surgery, a pal of mine is recovering from her 4th back thing, first injury was as a nurse and moving a patient
hope you feel better today
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Bosum - Sending hugs. I know that won't take away the pain, but might bring you a smile.
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Hello again.
Had an interesting chat with the foot doctor today,( off subject for a few words here, but I see him because I have several toenails that curve down, and I can't cut them with out cutting into the toes. Have known the doctor for years as he was my diabetic husband's foot doctor, and I have my nails cut every 3-4 months)
So today I mentioned that I have what I think is neuropathy in my feet, and a bit in my hands, and had no chemo, have no diabetes, but did have rads and also took 2 of the antibiotics that has been linked to neuropathy. He said lets test your feet and hands. I did not know one could be tested to see if neuropathy is present. Well, I stood on these mirrored tiles, and put my hands on mirrored tiles, and the tech runs the machine, took about 5-6 minutes, I guess. Yes, I have neuropathy in my feet, moderate to severe, and moderate in my hands. I told him my PCP had tried me on Gabapentin, but no help there. He suggested a supplement called NeuRemedy Plus with methylcobalamin. Anyone ever heard of it, or used it? His office is not in my small town, but he kindly comes once a month with his staff and sets up shop at the local hospital, and I can get some next month when they come back for the monthly foot clinic. I have bought something called Biofreeze from him several times, and it really helps if I have the pain in my feet, the numbness is always there, but when my feet get too warm the pain comes. My husband used it for his aging sore knees, and it does help on pain. Don't remember if I ever posted about the Biiofreeze, I think there are other brands, Maxfreeze is similar and available at the local drugstore.
Burr, MinusTwo, cold here in Central Texas, too. thirties overnite and 40ties for several days, finally hit 60 today, Yeah.
Dsgirl
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Biofreze is good, I have also used something called Toprician or something like that
you just need to try stuff
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proudtospin,
yes, we just need to try different things, we are all so different in how things affect us, something works for some, not others. Of course these topical things are only temporary relief, it does not cure or heal the damage.
I am thinking the product offered by my foot doctor may be something I will try, it said: "supports healthy function of the nerves in the feet and hands". Of course we have pain and numbness because the nerves are damaged, so will this product"wake them up" and make them healthy???? Sure wish that would be the case, but a bit doubtful, but will welcome any improvement/
dsgirl
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dsgirl - where are you in Texas? I understand we will have 39 degrees again later this week in Houston. I'll be pulling out the plumarias tomorrow.
I'm with you - I'll try it but I'm doubtful.
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dsgirl. sounds like a good idea, let me know if what he gives you helps. I do not have a foot doc but have been thinking about seeing one
dang got too many docs~~
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sorry that it is getting worse. I have spinal stenosis and my back guy ran a test to tell if I had nerve damage in my feet/ankles, I passed but actually if I had flunked, not sure what they would have suggested. Course the back doc wants to do shots but I am sticking with a homeopathic way. I do spend lots of time in the pool and have started walking in the pool and do think it helps
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Bosum - sorry you're still having pain. Very frustrating.
It must be about time for updates from some of us who have been dealing with this problem for awhile. Two years for me. I did go to a neurologist soon after my final chemo. She was willing to do some tests if I wanted, although there isn't much to be done except treat pain, so I decided to wait for 2 years to see if I might be a lucky one. Doesn't look like it. I do have a little sensation on the tops of some toes after 2 years, but the pads are numb. Weird cutting my toenails. Occasionally toes tingle, but luckily no pain. The pain is from the big toe nails hitting my shoes. They partially detached & then got a fungus. I'm trying to be patient with treatment, but I'm told it takes a year to heal. The balls of my feet are dead which sometimes causes a balance issue. And though there is some numbness up my calves, I can usually ignore that. My feet are ALWAYS freezing. I never had to wear socks to bed before tho. And I now have a heated throw on the end of the bed. What I miss the most is going barefoot. I was raised in CA, then New Mexico, then Texas. I don't think I ever had shoes on when there was a choice, and then it was usually sandals. I'm afraid to go barefoot now since there isn't much feeling. I'd sure hate to loose a toe. Hope the rest of you are having some improvement
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One other SE I forgot. I spent several hours each day walking around new towns on an east coast trip in the fall. My feet, ankles & calves were swollen every night. Hadn't happened before or since, but of course I haven't walked much since either. I know it doesn't sound like a neuropathy SE, but I don't have any other issues - like heart. or cholesterol, or... Anyone else notice swelling?
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Minustwo, I totally second that emotion on your first post. I, too, notice that some feeling has finally returned to the tops of my toes, and even the toe "stems" but not the pads of toes. I can feel water temp. a little with my toes now (after two years!) Balls of feet have numbness, but I can feel pressure. Luckily, my calves are not involved. When I felt the neuropathy going up my leg during chemo, that's the time I backed off the chemo and nothing stayed in my calves. I have weird small areas on the top and bottom of my feet that are numb, but they don't bother me. I'd like to get my normal toes back one day, even if it takes 2-3 more years...
Because I knew my neuropathy was ALL due to chemo, I saved my money and never bothered going to a neurologist.
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rose, so sorry and awful to think you are actually thinking of amputating
recently I took a walk around a nearby town visiting art galleries with a pal. The gallery tour was about 2 hours, my feet were messed but mostly my back since I also spent time siting in the car for about 2 hours. back not happy and I ended up at the chiro office who was able to work out the pain with his tricks
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I figure if I were to have anything amputated, I would end up with the pain staying as phantom pain. But I understand what you mean.
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rose50, I did have that crushed feeling in the beginning, but mine was more discomfort than outright pain. I got Anodyne therapy from a PT and I felt a bit better after 5-6 sessions, but I hesitate to say it was that which helped me or just the time going by. I wanted to be proactive, so got it within a few months of the onset of my neuropathy. Do not know if it would do you any good or not. Some like acupuncture, tho' no one has ins. coverage for that. Have the doctors not tried pushing the gabapentin at you? Nothing helps the numbness, but the drugs can help with the pain and many can tolerate them o.k. If you haven't tried any SSRI or SNRI drugs, it might be something to consider before going the amputation (!!!!) route. I know you were kidding, but your pain must be awful to write something like that.
Other than that, read thru' this thread because people have tried all kinds of things to get their feet more comfortable and while not all things work across the board, it can give you an idea of something you might want to guinea pig yourself with. Hope you find relief in something.
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Rose50 - I too am sorry for your pain. There are posts through out BCO that describe the help women received from drugs like Gabapentin & Lyrica for pain. And yes, acupuncture as Elimar says. I hope you will find something that works for you.
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Rose50: I haven't worn any shoes except Easy Spirit Travel Time, Sperry Dock Siders or occasionally oversize running shoes in a long time. Sad - but at least comfortable. Do get some pain meds for the horrible times.
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rose50, I am in no way minimizing what you are going through because I got neuropathy after round 5. One thing I have learned is keeping my feet super hydrated helps. I've tried the Vicks, and that's why I think it works, it holds in moisture. So whenever my feet seem worse, I put a ton of lotion, Vicks, Vasoline, whatever onmy feet and some socks. It's worth a try.
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Rose50 - ditto
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Sloan15 -- My neuropathy didn't get better until after chemo stopped, although the foot-tenderness would come and go. I never got the pins and needles, just weakness. I went to a neurologist to get my leg nerves tested, and they were affected. Thankfully things improved after chemo. Now I have to check to see if my arm nerves were affected from radiation! Again, no pins and needles, just weakness.
Kind of odd that your doc said that about regretting not having chemo if cancer returns... People can get reoccurrances even with chemo... so does that mean they might regret having chemo???
I didn't have an oncotype, but that's because I was already slated for chemo being HER2+ and grade 3.
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Anyone get nerve-damage from RT? I might have... gotta go get it checked out. BS seems to think weakness in my arm might be from RT hitting nerves under my arm...
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april25 - so sorry for this extra pain you have. I see my Rad Onc next Tues and that is a topic we will be discussing. The Truncal Lymphodema I have includes range of motion limits and some numbness in the underarm area. Definitely rads, I think. More collateral damage, right? I'll let you know what he says...hoping for some peace for all, today ✌️❤️ Linda.
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I am another one that is fighting nerve and joint pain from taxol. Last week's #7 tx was awful because the pain started 2 days earlier than it had been and last until yesterday and I get tx on Fridays. I am seriously considering only doing 10 of the 12 tx, but as someone said in an earlier post, if it comes back, what will my level of regret be. My MO did tell me that if my whole being is against gettng the last 2 treatments, then he will understand and stop. I will also be doing radiation for 6 weeks and will be on tamoxifen and am seriously looking at a hysterectomy. Yes, I want to cover my bases. My biggest worry is my lymph node involvement. That is where I am on the fence. I have no family hx of bc and did the genetic test and it came back negative. Was told that I have clear margins and that my tumor growth was extremely slow. BS's words were that it needs a walker to grow. I am also thinking about my job which I am on concrete floors 8 hours a day and I have been off since I had my bmx in July and then chemo after. Unfortunately, I responded too well to chemo to the point I wasn't able to work. When I start radiation, I will go back, but I will be starting off part time and working my way back into it.
The NP for my MO did prescribe gabapentin, but after reading up on it, I am almost afraid to take it. I have anxiety and depression in which I am only taking ativan right now, but the fact that it can cause suicidal thoughts scare the crap out of me. Plus it could make my nausea and fatigue worse. I was told to take it at night because of the drowsiness, but I am a hard sleeper anyway.
Okay, I am rambling, it has been a long day and I had chemo this morning. I will be calling the MO on Monday morning to express my fears about taking the gabapentin and see what they say.
I would like opinions or thoughts from others and I know that that decision is entirely up to me, but I would like some input and I will be continuing to read the thread when I am not so foggy.
Have a good night and I hope everyone can get some good sleep
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After reading some more posts, I forgot to say that I feel more muscle weakness with jpint pain and zingers from the pelvis down through my feet and in my wrists and forearms. My fingertips are acting like they have eczema and peeling and so are my nails. Doesn't matter what I use on them, it works for a very short time. I feel fortunate that I have no issues with numbness as of yet and I'm so sorry for everyone that does.
A lot of insight that lmy brain needs to digest over the weekend.
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tazbear - you are being hit with a lot right now! As to the Gabapentin, I can share this: like you, I cope by doing research. Maybe since you've done the homework you can make that leap, talk to doctor about your fears, then try the med at a dose comfortable for you. If you have adverse side effects, you will know about them from your research. Gabapentin helped me through what I hope is the worst of my neuropathy pain in my wrist and hands. I spent a horrific, sleepless night in a hotel room with my family, pacing the floors, crying, biting on a washcloth to keep from crying out from the stabbing, shooting pains coming at me like electric shocks. Never experienced anything like it. In the morning MO prescribed Gab, took it, pain subsides. (I took a higher dose that day while the pain was intolerable and it did make me feel slow and drozy.) Regular, maintenance dose after that gave me relief and no side effects. Not taking it now as the pain has lifted - twinges every so often that I can deal with. It is there if I need it.
Pain is not good for you! Hoping this passes for you, soon. ✌️❤️ Linda
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tazbear89, Has your MO ever shown you a graph chart called Adjuvant Online? It breaks down how much benefit you get doing chemo, doing anti-hormonals, and doing both. I have got to wonder, with such a slow growing BC as you describe, what is the benefit of giving you a full throttle chemo like AC/T. I never had to endure anything from the the taxane group, but it is so harsh and the SEs so nasty that I would want to be sure that it had a pretty good benefit to risk ratio. What I mean is, what is your absolute advantage of doing all those rounds of chemo? You know, the anti-hormonal group is generally the go-to drug therapy for slow-growing ER+/PR+ BC, right?
Well, there may be some details you left out that lend themselves more to doing 12 rounds of chemo (like, possibly your age?) But I still think if you saw the Adjuvant Online, it might help you in your decision whether to do the final two rounds or not.
Furthermore, with chemo, the biggest bang for your buck was probably in the first half of your treatment. The amount of potential cancer cells killed reduces geometrically with each round of chemo. So sayeth my MO and his minions.
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Bosum - oh, oh. Sounds like you've got an idiot. If he can use a computer, tell him to google CIPN. It will blow his socks off. This is just Wiki, but all the major cancer web sites have posted articles. Of course WE all know WHAT it is, but was amazed to see in writing the 30-40% number.
Chemotherapy-induced peripheral neuropathy (CIPN) is a progressive, enduring, and often irreversible condition featuring pain, numbness, tingling and sensitivity to cold in the hands and feet (sometimes progressing to the arms and legs) that afflicts between 30% and 40% of patients undergoing chemotherapy.
Sending my wishes for a speedy sign off.
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