Vent about Permanent Neuropathy
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Chloe's mom,
I have Raynaud's as well, and have wondered the same. However, I think having Raynaud's would work the same way foot and hand icing does. The lack of circulation in fingers and toes means that less of the chemo makes it's way there. I was thinking more in the vein of that it is an auto-immune thing, I think, which seems to me might make us more vulnerable to nerve damage.
As to your low numbers for recurrence protection, that is something we don't really hear about before getting chemo. And unfortunately, most of us probably know very little about BC and it's treatment when we get it. Now we know! My TNBC (triple negative) diagnosis also comes back with low numbers, but there are no protective pills for us to take, so they just throw everything they have at it.
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Hi BosumBlues--I feel the same way. I was going through a lot of stress two years ago, but physically, I was obnoxiously active. My husband is four years older than me, and I was often taking care of him after knee replacement, rotator cuff surgery, etc. I was feeling fine when I was diagnosed, and I was grateful to have mild treatment after getting into a drug trial. So it was Kadcyla, then herceptin, radiation, 12 months on exemestane, and 5 months on letrozole. I believe the AIs were the final straw, and when I quit I felt like they had been killing me.
Now my husband is taking care of me more and more. Just finished 6 PT sessions for knee strain, and now I can barely walk because of neuropathy, foot pain, and a groin pull. Maybe I just turned old in the past two years. I started Tamoxifen and seem to be okay on it.
Thank you all for allowing me to join you in venting on this site. I'm grateful I have a couple hours of energy each morning, but, oh, I miss dancing.
I don't want to talk about this with my friends, but I probably do so more than I think. I wish you all something to be grateful for each day.
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Can someone describe the leg weakness....how does that manifest? I am experiencing something and I'm not sure the cause. I am unable to put my pants on without sitting down. I cant either balance myself and lift my leg at the same time, or my leg is weak. Idk how to explain it, but its terribly embarrassing.
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tangandchris~
The first time I realized how weak my legs were, I couldn't get out of the ocean when walking to shore. I kept falling down. It was terrifying.
I just feel totally deconditioned. Although my weakness seems to be in the quadricep area, I also feel like there is overall weakness in my legs. It's sort of like my legs don't listen to me when I tell them what to do. If I am doing something on the floor (cleaning) or on the ground (gardening) I need to hold onto something to get up.
I am trying to improve my strength amd stamina through a hospital-based exercise program where I am closely monitored and consistently challenged.
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HI, all,
The first time the weakness came to me was in July 2015, about a year after treatment ended. I had been through my cancer and treatment in 2014, at the same time my husband was very ill, and he passed away in February 2015. Shortly after that I started walking again, my neuropathy was minimal, just some buzzing and burning feet, the more I walked the more they would burn, but tolerable. One day while I was walking, and planning on walking a mile, I got to about 1/3 of a mile and began feeling very weak in the legs. I pushed myself to half a mile and had to sit down. It was scary, a few days later I was in the mall with friends went into 2 stores then had to excuse myself and sat in a chair till they were done shopping. After that I went into sort of panic attack, and went to the hospital with chest pain. They did a lot of heart tests and the doc told me my heart was okay, in his opinion I had chronic fatigue from chemo. It's all been very strange, and seemingly I can't overcome it. Always before I could work on weak spots and build them up, this doesn't work that way. The psychiatrist I saw explained it as the nerves that communicate with the leg muscles are not communicating properly and the muscles don't react properly. Ozoner, I too seem to have lots of aches, pains, etc. and now bad knees and a bad shoulder. I think some of it from time going by, some of it from not so much exercise as I used to get, but I feel stuck in this situation. I just do the best I can and battle to keep from sinking into depression over it all. It helps to come here and talk. Gypsy, I understand the ocean thing. I went into the ocean in December, I couldn't stand up at all to get past the surf!
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I, too, kind of felt that my pre-existing autoimmune condition (fibromyalgia) made me a more likely candidate to develop CIPN. No way to prove or disprove that theory. If anything, it made me really stay on top of my symptoms during chemo, and then quit early (but not soon enough seeing as the CIPN is still lurking now, over three years later.) Oh well, I tried...it was hard to tell when ENOUGH chemo was TOO MUCH chemo.
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Whether it be light, sound, taste, energy, or people, I have always been very sensitive to the environment. I was also sensitive to drugs. Whether it be marijuana, a pain killer or an anti-depressant, a baby dose would always do the trick. Something like Benadryl would send me into a stupor.
After my first AC treatment, I was like, "Whoa! What hit me?" Chemo brain was present from day one. The onc was mystified as to why it came on so quickly. I was pretty sure it was all the Benadryl in my treatment! (Benadryl is anti-cholinic, it is not good for the brain. Strongly linked to dementia)
Then came the Taxol. BAM. Hello, neuropathy. I was not surprised. At all.
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From these last dozen posts, it seems like we were not sufficiently informed of how we might react over time. Oh sure, sign the consent form, but did we really have any clue?
I've been living in a state of denial, with "oh, I need to sit down and I'll join you later", or "can we turn the kayaks around? I need to go back now." Somehow I've dismissed one SE after another. After I stand up a few minutes and work the kinks out, I can walk fairly well without limping. But more than one time, I've left a store and didn't buy my groceries because my legs were so week. I am excited to plant one shrub but then I have to wait until the next day to do another one. My feet start burning when I'm relaxing.
Also, WE aren't responsible for these challenges, even though every single one of you is working so hard to live the best life you can. Positive note: I'm definitely keeping up with reading for my two book clubs, but I would rather be at Zumba Gold or taking a dance lesson.
You guys are giving me inspiration to keep going. I do better if I'm really inspired (I flew to Baltimore this month for two days to attend a reunion). But now I know I need a sky cap and I carry money to tip when anyone loads my suitcase. My joy was overflowing and I didn't mind having to sit when others were standing. It's when I'm home and have too much time to think that it's hard.
I'm Stage I, Grade 3, ER+ and HER2+, and lucky to have this diagnosis. But if I actually knew I would be stumbling around for years, it would have be so hard to accept treatment. Thank you for being here...I read your posts for encouragement every day.
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I'm 3 years out. As I wrote before, I don't have much pain but my feet are dead (and sometimes up my calves and my fingers). I did get the 'burning' that Maryna mentioned when I started to walk again this year. Twice during chemo, my legs just quietly crumpled up and I found myself on the ground. After that I used a cane for a long while. I have to use railings to haul myself up stairs. Most important, I have to be able to see my feet and watch them constantly so I don't make a mis-step like the one that caused a fall & a broken arm last year.
I agree w/Ozoner - I do better when I have inspiration. I joined a Silver Sneakers class this year. It's perfect for neuropathy since many of the exercises are done sitting in a chair. When doing standing exercises, you always have the chair for support. Since it's mild exercise, it's also perfect for Lymphadema. I started walking on a treadmill. Yes, I'd rather be outside, but the treadmill give me rails to hold onto for balance & stability. The balls of my feet still burn, but i got different shoes & new socks and kept going & now I can walk up to 40 minutes some times.
Most important, I planned a trip to Washington & Oregon and had a wonderful time. There was some walking, but the end goal was to see the ocean or the mountains - which was WELL worth it. I made sure I only did mild grades on a smooth path w/my cane. I came back inspired with my mind in such a better place.
Wishing you all some positive inspiration.
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B-Blues, re: "My thoughts....anyone with stage 1, ER/PR+ should never have been advised to do chemo."
Just to be clear about my own case, my chemo was not for my BC Dx (which I received no chemo for.) I'm a two time loser who got a second cancer and the more advanced stage of that one did scare me into doing as much of the chemo for it as I could handle. Did I REALLY need that chemo? Who knows. That's why I always say I got my CIPN for question mark.
M-Two, You and I had the cold, numb feet (use term loosely, when we could say blocks of wood just as easily,) but now, do you get the burning that everyone else mentions? I didn't get that for the first two years, but do get it now sometimes. For me, it feels like I had walked all day on hot sand...so the feeling is like heat of a friction burn or abrasion. It's not too bad, tho'.
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Yes, Eilmar - when I walk I often get a burning on the balls of my feet. When I first started back on the treadmill, I tried to ignore it and got blisters that popped. It sometimes feels like my socks are bunched up under the balls of my feet, but they're not. My new light weight Nikes & thinner socks help, but the burning limits the length of time I can walk.
The podiatrist was worse than useless, suggesting $400 shoes, insisting on my paying him before billing Medicare, and then informing Medicare & United that I have Type 2 Diabetes . I finally got my money back from him after 3 letters & 2 months, but am still appealing to get that diagnosis off my Medicare records, since it is just not true. CIPN and diabetic neuropathy may have some symptoms in common, but the underlying cause is vastly different. Fun and games. I dimly remember that we did more interesting things in our "real lives" before cancer (???)
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I have the cold, numb blocks of wood as well. I am trying to keep moving as much as possible...
Questioning whether or not to retire.
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Sometimes, when my I am just sitting or laying with my feet motionless and my toes not touching anything, they feels like how they were back when I had normal feet. I like to pretend that they are normal for a minute. <<Sigh>>
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Love the picture. Glad it didn't show the toenails, since mine never grew back correctly after Taxotere. I would have had an envy moment. Yes, I can sometimes wake up and feel that my feet are normal, but I've noticed a 'flooding heat' almost as soon as I'm aware of them.
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Fell again yesterday. Went flying across my dining room when my foot turned over and I lost my balance again. Thankfully noting broken this time!
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The falling thing sounds so scary. Glad you are ok Chloesmom!
Has anyone out there tried nerve "flossing" with any success?
On another thread Serenity has rec'd this. My PT has some training and I want to learn these exercises.
Minus: I am upset about what Taxol did to my toenails as well. Good luck finding good close-toed sandals. I am wearing Tevas this summer for the support I need.
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Garden - I'm 3 years out now so I've been brave enough to try sturdy Clarks 'flip flops' around the house. Eeek - I know I'm courting trouble but I've always been a barefoot girl. Don't know about "flossing". Tell us more.
Cholesmom- so sorry about your fall. Glad nothing is broken.
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Elinar, minus, bosom, chloesmom,
The foot pic is so pretty, those feet look so relaxed, my feet can never be still when relaxing. Always twitching, itching, burning, pricking, scrunching etc!
I bought a pair of ECCO Yucatan sandals. They are pricey, but they give a very good feeling of stability, your foot does not roll around in them.
My toenails fell off after chemo, they are back but big toes tend to get ingrown nails now.
Chloesmom, glad you are not injured!
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Gypsy,
I received my garden kneeler yesterday, if it ever stops raining here I will take it outside and give it a whirl! Thanks for the tip!
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Cloesmom, We tend to feel safe in our homes, but this unbalance business can strike anywhere! Glad no injuries.
maryna8, Since the CIPN, I always had that urge to flex and scrunch my feet all the time. It was not because of pain. It was because I wanted them to feel something. It was kind of a subconscious, uncontrollable urge, but I figured, what the heck, it would get the circulation flowing at the very least. Movement is good, right?
I was a little brutal with my feet. Because I could not feel heat or cold with the toes, I used to let hot, I mean HOT, water run over them when the bathtub was filling. Normal feet would have been saying "Ow!" after about 5 seconds but mine could withstand the heat for 30 seconds or more. I was thinking, "Feet, you are staying there til you feel something." I never scalded myself or anything, and after a year, some of the nerves did come back so I could feel the heat, so my "water torture therapy" is discontinued now. I will never claim something like this helped, but in my own perverse way I was determined to make those feet feel something! And don't feel bad for my feet, ladies, because they WANTED to feel something. They were 100% in on it. On a kinder, gentler note, my feet just loved to be jammed between the cushions of my microfiber sofa. Even tho' they could not really feel it that well, there was something about that velvety pressure that was soothing. And something else out of my unorthodox scrapbook was that I made my husband lightly touch a toe and I would have to tell if I could feel it and which toe I thought it was. I was terrible at first, but I think I am at about 95% correct these days. I made my husband knead my feetlike dough, and I would often just sit and knead/massage them while I watched t.v.. I still frequently do this.
I don't pass this long like it's a tip for things anyone else should do. All I am saying is, I just did any old thing that stimulated my feet and in the long run I do feel that the stimulation was probably good for them. (BTW, let me know if you all hear of microfiber sofa therapy catching on, o.k.? Haha.)
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I feel your pain. My full head of hair never really grew back. I would just love my hair to cover my head so I wouldn't have to wear wit's. Eyebrows are nIL to none and would love to know where you had your eyebrow tats and if you like them.
My feet get cold and ache and if I don't wear good support shoes forget it...I can barely make it across the room for the rest of the day. But I guess I didn't realize I have neuropathy. Arimidex makes bones ache and if I drove too long or sit too long my hips and back kill. It's no joy being so young and yet so feeble.
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Minus~
I need someone to show me in person, but this gives you the idea.
mary- enjoy that garden kneeler! As soon as this rain goes away, it will be following me everywhere I go!
elimar~ Interesting method!! Retraining your brain to have a certain sensation can be done with people that have lost their sense of smell or taste. Basically, they meditate on what the smell of, let's say, freshly mowed grass smells like. They do it often. They will stick their nose in it and think about it deeply whenever they see a lawn being mowed.
The same method has been used to encourage the return of the sense of taste!
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If you get eyebrow tats be sure you get someone who has lots of experience and bring an old photo. Someone I knew got some and they were too low and angled like Bozo the clown. With everything else we don't want to be stuck with bizzare eyebrows
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I tried the floss exercise just now. My outer foot wanted to cramp when I turned my toe in, but otherwise it was o.k. Is it supposed to be done all the time, once a day, what? Gets a little ab work in as well!
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elimar~ I am going to ask my PT more next week. I will also ask another board member here who advised me about it.0
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I pray your days get better. I pray I don't experience that side effect because red devil was enough.
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lrscott - welcome. Do you have neuropathy? When you get a chance, please go to My Profile and fill in your diagnosis and treatment. It makes it easier for those who answer to understand where you are in the process.
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Hi, here I am after almost seven years. I still have totally numb feet, I feel the non feeling on the bottoms of my feet. Still I have had shoes slip off and not know it. My hands are like gauze is over them. I still have bad electrical type pain in my feet especially in the arches, ai yi yi! Dr is just prescribing something to try to manage my back pain, a strong anti inflammatory. I broke my back nearly three years ago and walking ir standing realll hurts to the paont I just stay home. So I hope this drug gives me some moblilty but will be surprised if it helps with the neuropathy. I will let you know.
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elimar~
On another thread, Serenity wrote,
"Nerve flossing can be done daily a few times a day. It's better to underdo to avoid irritating nerves. We want them relaxed. It shouldn't hurt at all."
Happy flossing!!
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Hi all, I am not sure if I have chemo-induced neuropathy or not. Before diagnosis, I already had some pain in my L shoulder (cancer side) and numbness from shoulder all the way to fingers on and off more than a year, which I think was caused by wrong sleep position. However, ever since I started AC chemo the pain came back and got worse, the pain and numbness are still bearable but I find them very annoying. Can chemo make the preexisting neuropathy worse?
Thanks!
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