Vent about Permanent Neuropathy
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I'm glad you guys brought up the weakness. I get embarrassed when I can't do things like I used to. All I can do is the best I can and try to live a healthy lifestyle
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Hello to all,
Yes, I agree on the weakness, sometimes I think I am stronger but instead of building muscle in my legs, exercise that I do makes me tire and ache. Pre-BC I could work my way over the sore part and get stronger, things just don't work that way anymore.
I have something else that's come up. I hurt my left foot about a month ago, but went to doc and he said I just bruised one of the bones on top of the foot. It is tender and sometimes a big bruise will pop up. Now my other foot has developed a tender spot on top, and they both seem sensitive to hot weather! That sounds crazy, but if I do anything at all outside in the heat, they both get more sore and yesterday one foot was a little swollen. I don't handle heat well anyway, but I am mystified about my feet, especially my right foot that was not injured. I mentioned here a few weeks ago that I thought I was better, but since then things seem to have flared up. If I have an active day, I get increased foot and leg pain, cramping, and burning AND restless legs. The only way not to have this along with the foot pain is to sit around all day and not do anything!! Glad to have a place to vent about this, I blame the neuropathy for all of it, except for the part where I dropped a big full jug on top of my left foot.
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What do y'all do about shoes? I have a pair of flats for work and I need something else to wear too. We aren't allowed to wear tennis shoes of any kind or flip flops. I really cant wear sandals anyway. Any shoe recommendations?
Maryna-
I cant tolerate alot of walking or exercise either. It's gotten worse for me. A year after chemo we went to Estes Park and did alot hiking and walking. No way could I do that now. It's disheartening for sure. I have no answer just understanding. I actually just came home from grocery shopping and my feet are aching and I had to put my fuzzy socks on. Those help some. Keep in mind its already hot outside, but the fuzzy socks are a must.
((Hugs))
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Bosum - I LOVE the thought of saving one pair of heels for bed. Woooeeee!!
I've been pleased with Clarks. There are many styles but I usually opt for a slide on mule type. The toe box is big enough that it doesn't touch my toes. Usually a mid range price too. Easy Spirit - Travel Time has a number of slide on mule types that are well padded and tailored enough w/pants for work. Also a big toe box. I wore a pair of SAS shoes all through treatment. Not all are clunky and orthopedic, but they are a bit more pricey. And some of the Sperry Docksiders have enough padding. That's what I'm looking for - padding for the ball of my foot & a big toe box to keep things from touching my toes. Unfortunately that's a challenge since I have a REALLY narrow foot.
I bought pair of Merrells for hiking since my Reeboks were no longer comfortable, and a pair of really light weight Nikes for exercising at the gym. Both work as well as can be expected as long as I can get smooth enough socks.
I do have a couple pair of flats to wear with dresses, but none that are really comfortable.
OK - now you all can see that I'm a shoe nut. That said, I haven't bought any new shoes since treatment except the hiking & exercise shoes. Oh, and a pair of 'body glove' water shoes for water aerobics. My old, cheap water shoes killed my toes.
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I'm in remission from a stage 4 diagnosis in 2014. I had terrible neuropathy in my hands and feet for 2 over years. It began to dissipate in year 3 and now it's completely gone. Today I don't have it at all. I did a lot of free cancer yoga classes and prayer a lot. Maybe this will help others.
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Stage5-
Thank you so much for sharing, and we're so glad you found something that worked for you! We wish you continued remission!
The Mods
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Stage5 - will you please go to My Profile and enter your diagnosis and treatment? It would be helpful for us to see things like your original diagnosis, were you originally Stage IV from the beginning, what surgery you had and what chemo you had, did you have more than one chemo, how long your treatment lasted, did you have rads, as Stage IV are you still getting regular treatment . You will need to make it public so it shows with your posts. Thank you.
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BosomBlues
on the stilettos in bed!0 -
Lookforward,
As for the gabapentin, the difference is subtle. I'm finding that I take less pain medication (Advil or vicodin) at the end of the day, and that's pretty much how I can tell that it's doing something for me. I'm still numb, but it seems to bother me less, if that makes any sense. The last time I saw my physiatrist (I have bad knees to go with the numb feet--not pretty to watch me walk) I was able to do the usual difficult exam parts (walking on my toes then on my heels, barefoot) more easily. She noticed a difference for the first time in a long series of visits.
As someone else said, I don't have any hard and fast advice to offer, just understanding of how difficult and discouraging all this can be. And how hard it can be to deal with these losses, which very few people understand. I find that well-meaning friends and family just sort of glaze over when I try to describe my mobility issues. That's why it's such a relief to come here, where everybody is dealing with this.
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I feel the same way, I don't talk about the neuropathy much, even the docs don't seem to know a whole lot....anyway, when it comes to what to do about it. I read a scholarly article a while ago, it seems that just over the last few years it is being recognized as a serious side effect of chemo and not just something to be glossed over. Before I did chemo it was mentioned as a side effect, but always as something that would go away after treatment ended, so I didn't give it too much thought.l I think it's interesting that we all have different manifestations of the same nerve disorder.
I love shoes too, have way too many of them. I go for comfort though, I'm glad that more and more shoes are offered with good arch support, gotta have that! I cannot wear a totally flat shoe for long.
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Hi, Bosom,
I am curious about your path to chemo. You said it was optional in your case yet 2 docs recommended it. Was the tumor just confined to one breast, with no spread to nodes?
My DIL was diagnosed with BC about a month ago, she has had a mastectomy with reconstruction. She had a small tumor in each breast, but nothing in nodes or anywhere else. She will not have to have chemo, and probably no Tamoxifen either. She had E+P+H- IDC.
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Bossomblues...Neuropathy is a common SE of chemo and all MOs should discuss the risks. Its a very serious SE which can affect QOL severely. I have an autoimmune neuropathy which is debilitating. e all have to make informed decisions about our treatment choices. Good luck to all navigating this complicated disease.
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Mary, Bosum, dtad, Minus, September, and all,
After several months of severe pain in lower legs, I finally went to acupuncture/chiropractor after I sprained an ankle. He did electro-stim, laser therapy, and some gentle adjustments. I felt better afterwards and I am going again twice this week.
I had not pursued this earlier because I am over an hours' drive from my practitioners. Since diagnosis, I have lived in the car.
Not exercising enough. Muscle weakness, numbness and pain. Major impact on quality of life. Gabapentin and Ibuprofen. Trying to garden as much as possible, need more cardio.
Thinking of you all!
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Garden - let us know how you other two appointments go.
As I've said before, I'm fortunate to have only DEAD feet, but very little pain. I would not be willing to trade getting feeling back for getting pain also.
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Hi, Bosom
Feeling overtreated, I know what you mean. Before chemo my MO told me I would be getting the A & C and then 12 rounds of T. I knew absolutely nothing about anything at the time, and I thought that sounded like a long ordeal. But I assumed that's what I would be getting. When the first treatment came, I got all 3 drugs at once, and a week later I was in hospital for 5 days with severe neutropenia and weakness. My feet felt funny after that first infusion, but it went away quickly. But I now know that's when neuropathy started. After that he split it into A & C, followed by T. I think the damage was already done, I should not have had them all together at once, couldn't handle it. Which I learned later when I became much more knowledgable.
Sorry about your ex. Do you have TNBC? That is more aggressive than E+P+H-
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Gardengypsy,
I do hope you like your acupuncturist/chiropractor as much as I do mine, I really believe he has helped me; when I first went to him I had already been to the neurologist and orthopedic doc because of the severe all-over pain I was having after chemo. I got no answers, but acupuncture doc became a lifeline and I still go to him regularly. I also drive an hour each way. I also went 3 times a week for the first 2 or 3 weeks. Now I go once every few weeks.
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Hi girls ...
I am 5 years out from treatment. The neuropathy presented 6 weeks after the last chemo, about when I was starting radiation.
My saving graces are my DH, Gabapentin, New Balance shoe inserts, Skechers flip flops and their Go Walk shoes.
I take 300 mg of Gabapentin, 2 in the morning and 1 at bedtime. I have tried to wean off several times, but then I get those bitchin' leg cramps at night. I am functional with the 900 mg a day. I see very little side effects from it. I have heard it contributes to memory issues, but I already have such horrible chemo brain from the Adriamycin, it would be hard to say.
Sexy shoes are a thing of the past. Flats for me.
DoTerra essential oils has a cream called Deep Blue. I use that a lot on bottoms of my feet under my toes where the pain is the worst. Love this product.
I have plantar fasciitis in my right foot, on top of the neuropathy. At my family doctor's suggestion I went to a local shoe store where they map your feet and stride. I got New Balance inserts with a metatarsal "bump" behind your toes. Best $50 I ever spent, I have 2 sets now. I had to buy a size bigger shoe so you can take out the original and replace with the new insert. I can fit them into my New Balance tennis shoes, and my Clarks sensible shoes (I have brown & black).
The Skechers shoes are inexpensive, and they have the foam insole that forms to your foot. I love them. Just bought 2 pair of their flip flops at the Skechers outlet for $52. For a closed toe, they have the Skechers go walks with that great insole, in all colors. I really like those because they are not CLUNKY like everything else I have to wear.
I definitely have balance issues and weakness. We have a 2 story house and the laundry is in the basement. I am blessed with a hubby and oldest son at home who lug stuff up & down stairs for me. I have fallen a couple times. No ladder climbing for me, either. We can never pre-schedule an outing that requires lots of walking, since my ability varies by day. Good days and bad days.
I have tried acupuncture (worked) and chiropractic adjustments (felt great when he adjusted my feet and ankles). It is a shame insurance will pay for all kinds of drugs, but forget it on a holistic service.
Doctors don't explain possible side effects very well. I knew the Adriamycin could cause heart problems, but I was NEVER told Taxotere would fry my feet, and Adriamycin would make me stupid. I say, that if the research shows 1% of people who take Adriamycin (the "red devil") will have heart disease, OK ... but if YOU are in the 1%, it's 100% for you, a life changer. When you are the beginning of the process and scared to death you're going to die, it seems reasonable. I probably wouldn't have NOT done chemo - I have a family history - but still. Quality of life. Everything has its price.
Debbie
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Hi, Debbie
Sorry you have the neuropathy too, sounds like you are adapting well to it. It is different from day to day, and it is hard to make plans sometimes.
I haven't tried the Skechers, I will have to try those out. I cannot wear shoes for long if they don't have a good arch support, cannot wear a totally flat shoe such as the flip-flops I see people wearing. I don't think I ever did wear very sexy shoes, but then I consider boots sexy! I have several pair of those that are reasonably comfortable, but not for extended periods of walking.
Being tired is the enemy, a good night's sleep is necessary to deal with this condition. And sometimes when I am walking my legs just feel so weak. I tried the Gabapentin briefly but when I learned it wouldn't help with the weakness I stopped it, and try to deal with the feet and legs burning and tingling at times. Which is usually at the end of an active day. I have a lot of foot and leg cramps too.
My laundry is in the basement too, but I deal with it too, too much trouble to add in an upstairs laundry. It may come to that though! I do maintenance acupuncture about once a month, it's worth the cost to me. $45.
My docs didn't really talk about the neuropathy being a lasting problem either, my MO said it would go away when treatment ended. He retired on the day of my last chemo so I can't go back and yell at him LOL. I know a lady, younger than me with teen-agers, who has heart damage from the Adriamycin. She has had to have a fibrillator (or defibrillator) put in her chest. That is sad, she has had a lot of issues with that. I was told I had to do the AdriamycinCytoxanTaxotere because I am E-P-H-. Triple negative has no other treatment, other than radiation.
May I ask what is the hormonal therapy you were given?
Mary
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Maryna8 -
Marinate? LOL! You must be a good cook!
I was post menopausal at diagnosis. When I was finished with radiation, I took Arimidex for maybe 9 months, and I could NOT tolerate it. I felt like I was 80 years old. No QOL with that. My onc switched me to Tamoxifen and I took that for 3.5 years. It made my legs ache. I am also on statins, so the combination of the AI or Tamoxifen, plus the statin, plus CIPN, were crippling me. I chose quality of life, and quit taking the Tamoxifen with my onc's blessing. That was a very personal choice on my part, I am not recommending that to anyone. It was the right choice for me.
Debbie
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Some days I imagine that I have a rare neural disease, and then I remember I've had chemo, Herceptin, radiation therapy, AIs, and now Tamoxifen. Maybe my subconscious would rather forget that I had breast cancer.
I just went back to taking some careful ballroom dancing lesson and my legs are numb. I was on my feet a lot today and feel strange. I'm always surprised when I take a misstep or stagger. And very grateful during the few weeks I don't have constipation, urinary urgency, and tingling feet. Thank you all for helping me make sense of this. You are a lifesaver
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I've found a couple of pairs of shoes (sneakers) that allow me to do Silver Sneakers exercise classes for an hour and slow Yoga on different days. Sometimes I can even make it 20-30 minutes on the treadmill. I hate having dead feet, but am grateful that I don't usually have pain.
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I had my 1st BC in 1989 at 43. I had chemo and radiation and surgery. I had an axellary dissection and a segmental mastectomy. Never any problem with lymphodema. Then in 2001 started having problems with my shoulder and some swelling in my upper arm. Went to a shoulder specialist who said I had an impingement in my shoulder. Had physical therapy for 2 months, 3 times a week. When I was not getting any relief and the shoulder doctor wanted to inject me with a steroid I asked my PCP for help. She sent me for an EMG which told them I had a tumor in my Brachael Plexis. When I finally returned to my oncologist I had a lump in my neck also. They were able to biopsy that and it was the BC again. The one in my shoulder was 4 centimeters.! I had chemo and another 36 radiation treatments and also cyber knife for the shoulder.(this is radiation also, not surgery) All went well, my shoulder never really recovered but certainly I was able to use it. Now 16 years later my arm is swollen and I have no feeling in my hand and my wrist just hangs. And the nerve pain is unreal. I take 1600 mgs of Neurontin. I am seeing anoncology neurologist for the past 6 months and he is telling me I have scar tissue from radiation. He has never once mentioned RIBP. I am so happy to find out that I am not the only one with this and there is a name for it. I can no longer write let alone sign my name. Can't shake hands, open jars etc... I type with my left hand. I am trying very hard not to be depressed, I have a very supportive husband and two great daughters and six wonderful grandkids. But this is a real challenge.
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SHOES. I have had to give up any ones with soft sokes and I need firm stable bottoms Ot know where my feet are so I don't twist my ankles. Had to give away the Easy Spirit tyoe. Wear Danskos, Eccos, Clarks, Keens. For dress up have Sketchers Mary Janes
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Hi, all
When I am home in the summer I have 3 pair of shoes I interchange over the day, 2 are Merrell sandals and 1 is SAS. All have arch support, but I find in this very hot weather we are having that all of them will irritate the top of my feet, like a heat rash. When it happens I switch to one of the other pair, when I go out I take along an extra pair of shoes.
This morning in bed my legs cramped so bad I jumped out of bed, got one leg straightened, couldn't straighten the other one and fell on my butt! No harm done, but not a good way to start the day.
GirlPowerDebbie, I used to be a good cook. Now that I live alone I eat very plain food, and now that it's high summer it often feels too hot to eat.
Ozoner, is the constipation and the urinary urgency blamed on CIPN too?
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I ended up buying a pair of Dr. schols. So far they are ok but causes some toe pain on the right. I am completely unable to wear flip flops which really makes me sad because I used to live in Yellow Box.
So would you say that fatigue is a problem for y'all? I still struggle and it's awful. Going out to grocery store is a major thing. I have to pace myself or I'm miserable from pain and sheer tiredness.
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Keep trying to get a post on here and am determined to finish this one! I would like to vent on my neuropathy! I saw at the beginning of this thread that many were complaining or arm and hand issues but more recently it seems to be legs and feet.
For me it is tingling/burning and pain in my hands along with pain either radiating to or from my scapula. I got Lymphedema for the first time in late April while flying. I had my compression sleeve on and was even on a lie flat bed in business class a (a big treat as I was using all my points. I had flown longer flights in January and March for NZ so was really surprised to see my hand like a balloon. Anyway, long story short I was on my way to Nepal to lead my swan song trek which I did do~~Mustang which is a high altitude trek. The lymphedema was there but did not bother me.
On my return to Vancouver I already had 6 monthly appts. made and by that time I did have the tingling in my hands and the pain from my scapula but still not bad. However my implant redone only less than 6 months prior, was already contracting and cording starting, the reasons for the redo in December. My PS decided to remove all ASAP and scheduled that for June 26 whereas it took me well over a year to wait for the previous surgery. We were moving also in June and there was a fair bit of stress~~duh! But all the problems were getting worse and by the morning of surgery, I could hardly wait for anesthesia everything hurt so much. I had hoped that would resolve the issues but no and the past weeks have intensified the pain and my fingers and hand have tingling/burning and intense pain at times along with the pain from scapula and through my arm. I now have numbness in my under forearm where there is mild edema. The strength in my hand has decreased remarkably in the past 10 days.
I had an ultrasound of axilla and supraclavicular area July 11 and unremarkable. I already had an MRI booked for same and since then my cancer agency has worked hard to decide what to do and luckily head of radiation was in on a weekend a couple of weeks ago when the MRI dept. was trying to decide on two MRI's. After lots of consolation the MRI July 31 is to be C-Spine and brachial plexus in hopes of finding out where the nerve damage is coming from. I also started Lyrica last Sat. 75 mg twice a day. I think it may be helping but am not jumping up and down about adding another drug.
I have not been able to lie on my right side for a month as immediately the pins and needles start and arm to hand goes numb. Wish I was left handed too! Possibly the Lyrica, but I am sleeping better and not taking any Zolpadem which was I was taking most nights though a small amount~~2.5 mg.
So that is my went for the day and am hoping one of you has similar circumstances. We are off to a folk festival today for the weekend so it should be fun and take my mind off this. Certainly it is a mystery.
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marianelizabeth, To me, your nerve issues do not sound like CIPN, but more like inflammation/irritation in or around the spinal column. If that is what is happening, the lymphadema, cording , and/or scarring from procedures could be compounding the issues you are having. (As in, cording lymphadema, scarring almost never HELPS anyone!!!) Although the US did not turn up anything remarkable, I think you will have better luck with the MRI as far as getting a diagnostic.
This may sound stupid, but have you tried icing the area between your shoulder blades. I mean seriously adopting the 20 min. on/20 min. off rotating cycle of ice packs. I've had some past success taking out some pinch in my spine, when NSAIDS did nothing for it. Maybe you can get a little relief between now and the 31st and then go from there.
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Hi, Marianelizabeth
I agree with Elinor, not sure if what you have is CIPN. It can be confusing when we have so much going on. My story briefly: I have a partially torn rotator cuff in shoulder and torn bicep, on right side, which is also the side where my breast was removed. I have rt. hand carpal tunnel also. So my entire right arm and upper body has nerve damage, but not necessarily chemo-induced. BUT, I also have symptoms in both feet and both legs that started with my first chemo treatment, and that neuropathy has intensified the nerve damage in my other areas, and joined in the party. Right after chemo ended I had horrible, flaring pain that slowly died down over the next 6 months or so, but I am left with a numb, nervy mastectomy site; pain through the underarm area sometimes, a painful shoulder, CIPN in all limbs that affects in various ways, and still the carpal tunnel. Sorry you developed the lymphedema, I hope that does not bother you too much. I hope your tests will give you some answers, and I'm glad the drugs you tried have given you some relief. I am interested to know what your tests will say!
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Thanks everyone and I too look forward to some test answers. Meanwhile pain intensifies and very little sleep last night. We are in a motel for the weekend near the site of a wonderful family oriented Folk Festival. I forgot to bring Zolpadem and last night pain was so bad I just tossed and turned. Am thinking maybe brachial plexopathy but have not posted on that site as yet.
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Hey maryna8,
Yes, the long nerves in the body can be affected by chemo. It took me a long time to put 2 and 2 together, especially with strange SEs like stumbling, constipation, and urinary problems. I was a Stage I patient chosen for a drug trial (ATEMPT) with Kadcyla, a drug commonly used for Stage IV cancer--and known to cause neuropathy. After four months my MO was concerned that I was developing neuropathy, so with his blessings I asked to switch to the targeted drug Herceptin. I was on that for eight months.
For me, staying busy helps me to deal. I take Cymbalta for anxiety (took Zoloft for several years) and it also helps with neuropathy pain. I am lucky to have had Stage I cancer, but I just didn't know the realities I would face after Kadcyla, rads, AIs, and now Tamoxifen. As a trial drop-out, I will be followed for at least five years, and hopefully my stats will help others being treated with this strong and effective drug.
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