Vent about Permanent Neuropathy
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Hi Blownaway and Lanne,
Panera has blood orange lemonade with tumeric. Probably just trace amounts, but I feel virtuous when I drink it. I also get happy when I eat Thai curry because of the rush from the Thai chilies, tumeric, and ginger.
People who are not on these pain inducing drugs might not be able to relate to us. Taking Tamoxifen is not attractive if I think about it, so it's just there in the pill box. I'm grateful, though, and my Cymbalta helps somewhat.
I took Kadcyla for my chemo in the ATEMPT drug trial and went to straight to Herceptin after 7 months because of increasing neuropathy.
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As for me I seem to be doing a bit better lately. I fluctuate a lot but for whatever reason the burning has decreased, though the weakness persists, but in thinking back to where I have been when at my worst even that is improved. I can remember mornings when I would stumble and hang on walls to get to the kitchen to make my coffee, or awakening in the night and struggling to get to the bathroom. I have not been like that in over a year. I am four and a half years out from my last chemo and I have to believe it will only continue to get better. It is very slow progress but progress none the less.
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so I am in my third week of switching from Zoloft and Gabapentin to Cymbalta and Tumeric. So far I've noticed that taking the full dose of Tumeric in the morning works better than splitting it into 2, and I still need 200 mg of Gab in the morning for my chest (skin) pain to get through the day. But that's down from 600 mg daily total so I consider it a win. Hope I can wean off the 200 mg at some point. My feet seem to be doing ok - even feeling a bit better.
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I went to have testing to see if Vestibular Rehabilitation might work for me. Lisa from San Diego reported on this & if I remember correctly, it helped her. Since I lost all my hair, it stands to reason that the hair in the inner ear was affected. And did it grow back? Obviously they can't see the inner ear, but they have ways to see how your body/brain/eyes/ears are working.
The tests were over 2 hours long and sort of obnoxious - but worth it to me if my balance can be improved. I haven't heard from the doc yet, but the tech didn't think there were any major problems. Still she believes the doc can give me some tips to help my balance. It would be so nice to wash my hair in the shower w/o losing my balance; or walk along with out having to focus continually on my feet instead of the trees or birds or oceans.
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I take 200 mg of Lyrica in AM and PM
I still use a chair in my shower to wash my hair etc so I don't lose my balance.
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i have done vestibular rehab, hard to say if it helped, vfery much based on the therapist. For me what is helping lots is the pt at my cancer center, therapist is much better and she has access to all my tests and treatments. She also suggested i do occupational therapy as that is a separate linenitem under medicare. My therapist there is also bug help. My cancer center is Sloan Kettering and i am really pleased with how they organize things
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My LTD insurance has required me to apply to SSDI which I have now completed the application. My neuropathy is still here and that's why I have been unable to go back to work. I see that some of you have qualified because of the neuropathy, was it difficult to get approval based on that? I understand that SSDI will prob send me to one of their DR's. I'm curious to see how my difficulties with neuropathy compares with others. I get the "zaps" that will stop me dead in my tracks as they hurt like crazy. I sometimes have issues with balance, I have pain in my feet and lower back. I drop things on the regular and I have issues with lack of feelings in my hands and feet.
Thanks in advance for sharing
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Mucki - if you haven't been to see a good neurologist, that would be my next step. There are tests they can do to confirm CIPN and drugs for the pain. I was told that nerves connections can improve for several years post chemo - although better may not be back to where you started.
Are you on your feet a lot with your job? Is there lots of walking?
I'm fortunate - I just have dead feet. Sounds funny since we all know the balance & injury issues that come with that, but I don't have pain. It hasn't stopped me from doing much, I just have to do it slowly and watch my feet all the time so I don't trip on cracks I can't feel in the sidewalk.
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Below is a link that I got from the tech who did my Vestibular Rehab testing. I'll see a PhD next month who supposedly is writing a request for grant along a similar notion. In the mean time, she will supposedly give me some tips to improve my balance.
https://www.ncbi.nlm.nih.gov/pubmed/25450133
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Hello All,
I have question that may be answered here. I developed neuropathy during chemotherapy. It wasn't painful, but it was tingling and numbness that I felt. It started with my toes and by the end of chemo (8 sessions) it also included my fingers....just tingling and numbness, no pain. Chemo ended November 2017. Well to speed things forward I went to Primary Doctor who prescribed Gabapentin 300mg in February 2018. I waited until March 2018 to try them. It did not seem to help the neuropathy, but did wonders to help me sleep 💤 through the night. Well, I took them on and off from March until recently (the bottle had 30 capsules) I have 3 left. Last night I noticed increased tingling in my fingers but as I had fallen asleep in the lounge chair, I kinda ignored it on the way to my bed. However, today first thing in the morning it was still going on and throughout the day. It is as intense as after chemo. I’m also on Tamoxifen for 6 months now. I did get another manufactures brand this time, and I’m at the end of this bottle. I would appreciate any insight you all may have. Thanks so muc
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Humblepeace
300mg may have been too low of a dose. My neuropathy sounds about like yours and I was on 900 mg. This drug builds up in your system so it works best if you take it regularly and if you stop taking it, you should wean off over a week or two. My radiologist suggested (to me) to take 300mg at night and 100mg 3 times a day so I wouldn’t feel quite as sleepy during the day. Gab also helps with hot flashes. I have nerve pain in my chest (&;?/# TEs) and it helps that enormously.
My neuropathy is never quite the same two days in a row - some better, some worse. If you haven’t tried it, acupuncture does help quite a bit.
I’ve recently switched to Cymbalta as an antidepressant and for neuropathy and have cut my gabapentin to 100 - 200 mg a day. It seems to work well for me (and I’ve lost 5 lbs!). I’m also on Letrozole instead of tamoxifen.
Lastly, I’ve found that wearing very supportive shoes (like Vionics) that provide an even pressure and a bit of even massage gets me through longer periods w/o paying for it the next day.
Lanne
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Well, I think things can be variable : recede and flare up. I have had CIPN in the tips of my fingers and toes since the final chemo. Things were mostly okay, but since Nov. I had increasing tingling. I'm in physical therapy now and am going to get nerve testing. Radiation may have caused minor cording, which can make your hand tingle. Try some moist heat
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if you take neurontin or lyrica you have to take it every day, not just when you have symptoms. I needed too much neurontin for the neuropathy so I switched to lyrica only taken twice a day. It works well.
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i do not seem to get any relief from nuerontin, was doing 300 tab 3 times a day
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Thanks ladies for the informative responses. The tingling seems somewhat improved now (two days later) but not as good as it felt prior. The increased tingling happened overnight.
I will call soon to set an appointment with my oncologist to discuss these changes and of course se’s of tamoxifen. Six months in on Tamoxifen and I have bone/joint pain, had blurred vision which stopped. Dizziness which came on after taking it for 3 months but has lessened some and my eyes twitched during chemo, got better, but never completely went away. Now has returned. Chemo ended 6 mos ago and all active treatment ended January 2018.
I always look forward to the tremendously supportive ladies on this forum. Thanks agai
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get a referral to neurology to get a good evaluation
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Humblepeace - also, changes in how your neuropathy feels are also part of its evolution and demise. What mine feels like now is nothing like it felt initially. As I get more feeling back I've noticed that certain parts of my feet feel better and some feel worse. As numbness wears off, the new “feeling" is anunderlying tingling. I’m hoping it’s progress.
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Thanks to all of you wonderful ladies for all your replies. I saw the oncologist this week Thursday and he stated it was unusual for neuropathy to be on the mend and then to overnight feel like it did right after chemo. He referred me to a neurologist???? I will keep you all posted. This is quite annoying!!! I’m trying to be patient with my body.
H
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i have seen nuerologist, they all did funky test and all 3 agreed i had nueropathy but no one had a solution
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Hi ladies humble peace and I have been pming about symptoms and such so I came to his thread. I notice many of you had AC (cyclophosphamide, doxorubicin) then taxol? Anyone have ((Docetaxel(Taxotere) + Carboplatin + Trastuzumab) chemo followed by long term neuropathy? I also had Herceptin but while it says it can cause Neuropathy no one talks about it.I would be very interested what you guys think of the new webinar on the homepage about neuropathy. He mentioned that certain chemo hits the nerve axon and certain chemo hits the DNA. He described my neuropathy perfectly as it came on about 4 months after chemo and was on both hands and feet.
He didn't have a lot of great solutions though.
I was on arimidex but the bone ache was horrible, I could deal with it in combination with the weakness and tingling in my hands. I tried fears and then moved to tamoxifen combined with effexor.
I have thought about moving back to arimidex because more medications in the SSI category are available. For example Lyrica I don't think I can take with Tamoxifen. I have to say that effexor in the lowest dose does knock out the hot flashes and give a bit of relief of the neuropathy.
Gabapentin was not helpful as a sustainable treatment as it wiped out my feeble remaining chemo brain short term memory. When driving I would pull over and not know where I was going (I am 45)
I also tried chlonadine (I think that is the name) but it made me light headed and I felt faint.
Because I have exhausted what I think I can do pharmaceuticaly on tamoxifen I am branching out to other area.
Right now I am pursuing methyl vitamin B complex and B12 shots and vitamin D . I am also cosidering a more drastic diet change for 12 weeks because I read of a small study where diabetic neuropathy improved quickly with a vegan diet. I could do it for that long but I know that chemo neuropathy is different. I will report back if it helps it isn't a difficult diet for me to try as I am raised in farm country and already don't drink Dairy. I am one of those wierd people that likes almost any kind of vegetable.
I have the option to do either intense tens therapy on my hands or acupuncture will try that in September as it's off my insurance and I am saving up for it.
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I did neurontin and it didn't work but Lyrica does. My acupuncture worked some. I too enjoyed the webinar and am looking forward for the transcript. I think my neuropathy was caused by paraneoplastic syndrome but he didn't cover that type.
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Mine was caused by taxotere & carboplatin. That was given in combination with Herceptin & Perjeta before surgery. I did ice both my feet & my hands for 30 minutes before & 30 min after and all during the 60 min taxotere infusions. The problem started with round 3 of 6. I discussed reducing the dose with my MO but since my BC was a "recurrence" and I was HER2+, he recommended I take as much as I could. Even at full doses, I didn't have a pCR, so after surgery with clean margins (which I'd also had with previous BMX) I had 3 rounds of AC and then radiation.
I've taken B-12 & B-6 since I started chemo at the recommendation of the MO. I eat very little meat at all but I do eat eggs & cheese. I'm almost 4 years past any treatment. My fingertips are some "better". I can do up my own levis but don't do well swiping things like a phone. My feet are basically numb and the neurologist doesn't expect any "more" improvement. While I'm fortunate not to have much pain, it is debilitating not to have feeling. For example - I can no longer wash my hair in the shower since I have no control at all & no balance if my eyes are closed.
I'll be interested in how the acupuncture works.
Lisa - I haven't heard anything else about the "stimulating soles". I don't know if the grant didn't come through or if they decided to run the trail for diabetic neuropathy only.
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Has anyone experienced neuropathy in the head and face. I have been having a tingling sensation in the back of my head and now numbness in my face, around the nose and eyes. It feels like l have gargels on my face. I am wondering if this is neuropathy or something else. It has been two years since I had chemo, four treatments of the red devil and cytoxin, followed by 12 treatments of taxol.
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sorry Peyton, I haven't experienced any numbness other than my fingers and my feet & legs. It sounds like you should check in with your doc.
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I wanted to comment on B vitamins. I had the spectra vitamin test sent out (they drew the blood at the hospital ) it showed I was very low in B12 and Folic acid. This was while I was on a good lean meat high veggie eating. My dietician is confident that I have a gene defect called MTHFR where under methylated B12 and folate. Eventually I.might pay for the 23andme teat to confirm it. A clinic near hear offers methylated B shots so I started getting them with a B12 boost.I am not sure it significantly improved my neuropathy but I can type on my phone now. I found a good methyl B by thorne vitamin. I will probably swirch to that when this set of shots run out and I have my next blood work.
The best part of the shots are I now sleep like a baby. Don't have a ton of nighttime tingling (still on effexor) but I have had horribe insomnia for years and it's gone I sleep and wake up feeling great. I can't tell if the B12 improves the nighttime numbNess if it did it's more like from a 7 to a 4 Because I am taking be complex and B 12 I am nor sure which vitamin solved it but I am forever happy. It's been 3 months ans still sleeping soundly.
Peyton I am so sorry to hear about numbNess on the face. I would have that checked out just for your own piece of mind.
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I’m on Abraxane and just finished my second round of three weeks on. I’m starting to have some neuropathy in my feet and hands, and for a few days my lips felt kind of numb. I’ve tried L Glutsmine but it makes me have a bad stomach ache. Can anyone give me any tips on taking the powder? I’ve tried orange juice and that was a big mistake! Then milk and I can barely get it down, water is impossible due to the funky taste
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Warning I am having a vent and pitty party overy this hand neuropathy,survivorship and how to deal with all of it in my relationships and everyday life.
I am having a pretty terrible time of things right now. I could use some sympathy. Does your neuropathy impact your daily life? Your relationships? Carrying groceries? Typing ? Loading the dishwasher? Doing laundry and carrying it? Lifting things like a gallon of milk?
To catch everyone up. I have pretty significant weakness in my hands. Also a lot of tingling in my feet and hands. I have done all I can . I am now 3 years from diagosis and 16 months from surgeries. I drop things often and trip because I don't quite know where the step is or my foot doesn't do what I want it to. 16 months ago I had Carpal tunnel surgery even though it just showed borderline conduction issues under different circumstanned I would not have had surgery but I was desperate for any improvement. The surgery helped slightly but my hands are still weak and tingling . I have also gone to Ocupational therapy/physical therapy at the cancer center and hand therapy at the hand center. I have tried many drugs but none improved the weakness only made the pain tolerable..I have a lot of other issues from treatment it shot my liver enzymes through the roof so they don't recommend more medications in addition to tamoxifen. Though I am going to talk to the MO about cymbalta at my next appt.
I am on the younger side with two kiddos and a husband who is at the end of his patience. I haven't been able to continue my keyboarding heavy job and right now I am home. My kids are 11 and 13. In my house people put things everywhere because they are used to mom handling it. I stare at the obstacle course of items they expect me to pick up and carry everyday and I am just getting discouraged and frusterated.
To solve some of the problems I recruited my kids to do their fair share and I made some modifications to better my environment. I finally purchased lighter pans (it took me three years for my husband to understand that I could not lift the fancy heavy ones we had) I am trying to get a food processor because I can't cut vegetables with the knives but my husband loves our knives and thinks food processors are stupid. Its not that i care if he uses the food processor its that he thinks we have a small house and many of thr suggestion I make ro bettwr accomdate my hand weakness gt shot down hard. Then I am in a difficult position of going against his wishes and buying it anyway. He is the worst at leaving heavy pans or items right in the way. He gets resentful and angry with me that cancer changed me. I feel like we need some counseling to help him deal.with the after effects of what has happened. Our lives won't be the same but with some adjustments and accommodations they can vastly improve. He criticized me so much for the laundry that I put everyone on a schedule and now everyone is responsible for their own laundry including him. He doesn't like it but I can't carry hampers up and down the stairs and pull clothes in and out of the wash.
Suprisingly the kiddos have adjusted. I have one unload the dishwasher and one load it. I have each of them carry groceries for me and clothes hampers. I have them put their things away and keep them in their room so I have more "hand power" to put towards finding another job and keeping the house running and food made. I gave them each a laundry day and have them wash their own clothes and put them away. I have my sin vacuum as one of his chores as carrying the old vacuum cleaner up and down the stairs is painful and when I do my hand are so aggregated that it affects my ability to do other things. For my part I fold clothes , wipe counters, try to figure out meals for everyone, grovery shop. Things I can do by myself. The other things I try to do as part of my kids 15 minutes daily chores with their help carrying and moving things. I only gave my husband the job of his own laundry and taking the garbage out nightly. Beyond that I have stopped consulting him and involving him. I come up with an accommodation to make it so I can do my daily duties with my lmitations.
I have been married for 20 years( I am 45) and from my perspective before cancer I had a happy marriage. It's just my husband has turned into a very frusterated and resentful person. He gives a lot of criticisim over my inability to pick things up and well now it's degrading over time to criticism of our loss of how our intimate life changed after breast cancer and my appearance and well a total lack of desire to interact with me. I don't know if I can bring this back from the brink.
His criticisms are valid. I hate that my body did this to us and my solutions to the limitations have not been speedy. I found a physical therapist who was willing to train me and give me exercises with wrist bands so I could work my body without using my hands. It was a relief to have someone understand and work with my disability rather than keep trying to get my hands to grip the weights/bands and pull the pins in the exercise machines. I have a dietician who is helping me lose weight and also get my liver enzymes down. I am very disciplined in eating what she recommends because I am so willing to do anything to improve my situation. It's slow going she warned me tamoxifen makes it difficult to lose weight and it does affect the liver. She encourages me to just stay constructive and dedicated and over time she would help me get these liver enzymes down. It's just I don't know if I can get my husband to be patient. I am not sure how to get him over this contempt. Writing this I can see we need a third party to help us. So I will try to find a counselor.
Reading this I can see that my husband probably thinks I am using cancer and neuropathy as an excuse and maybe he thinks I am faking all this. I know he won't truly be happy until he has more intamacy and I am working not because we need theone but because he resents me being home. I am not even sure if I make that happendix he will not.still resent me.
I am having a rough time of it staying constructive under a less than ideal circumstance.
I am writing this because I am wondering am I crazy? Is anyone else with neuropathy/ breastcancer experiencing any of these lmitaftions.
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guru - NO you are NOT crazy. My grown son still doesn't understand that I can't swipe a smart phone because I can't feel my fingers. My old keyboard skills will never be the same - worse on an adding machine than the computer, but needless to say I don't text. I can't walk w/o watching my feet. Since there is no feeling, I would trip over everything. So of course I can't keep up with him anymore and he doesn't like me walking the dog with him when I go to visit. And I might as well throw away any dressy shoes.
I have bitter, unhappy days due to the side effects & changes cancer has made in my life. But I'm considerably older than you and retired. I can only imagine how frustrated & disappointed you must be that your plans & dreams have gone awry with so many years ahead. It's not fair that your DH seems to be blaming you. Sure - he's disappointed too, but it's NOT YOUR FAULT.
Hopefully writing it all down helped consolidate your thoughts. You didn't choose cancer. You didn't choose neuropathy. Sounds like you've done a good job of trying to figure out ways to accommodate the reality. It's great that your kiddos have pitched in. I think you have correctly determined a counselor would be helpful. And if your DH won't go, I hope you'll go by yourself.
Edited to say - it's great that you're venting and it's good if you can just cry sometimes too.
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guru, what you have been experiencing is horrible. Not only dealing with the neuropathy but the family issues..I do think counseling is a must do..if he won't go, you go...your whole world has been turned upside down. About the feet...I was thrown in with a group of wounded warrior for vestibular therapy to work on my beance. Most of the young men had lost both legs and some three limbs. I felt like a poser., but I could see that they could regain their balance even though they had NO feet to feel their way. That gave me encouragement. I still have balance issues but not nearly as bad. I have learned to use the back of my arm as a point for balance going down stairs or I find something I can touch to go down a curb. Last year I broke both my ankles at the same time, was in a wheelchair for four months , had casts and couldn't put any weight on my feet at all. I had to learn to use a transfer board to move from my chair to bed/toilet etc. So I have lots of metal in my leg and arm. I had to learn to walk all over again like a baby. This all came about from falling. I have learned there are many different kinds of PT and OT, so maybe you can find better ones.
Cudos for demanding your kids do their fair share. I had three boys so I called it batchelor training and when they took off for college they were happy they know how to do everything including using the sewing machine. My husband of course still doesn't do much. When he worked a demanding full time job, I could understand it, but now that we are both retired, it doesn't make sense to me but after 50+ years, I just contend with it.
Maybe a saber system would help you slice veggies..it helped me alot.
So sorry you are going through this ...sending hugs...
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Morning all,
I've come to accept that foot neuropathy is here to stay and my current shoes are no good. My better pair are New Balance W840WP3 and the other pair are Skechers 15601 Go Joys. When I'm working a short day, I wear the Go Joys, longer days, the Skechers. Almost forgot; when my feet are too swollen to wear either of those, I settle for wearing Easy Spirit TravelTime mules. It doesn't take much swelling to make the Skechers uncomfortable. I have one hammertoe (next to a big toe), and the toe areas on those shoes seem a tad on the cramped side after a day of work; they are the correct sizes.
Part of my problem is that I can only wear certain socks. Socks that don't bind in any way, which is impossible. The only socks that I have that are comfortable are old low-cut socks where the elastic at the top is shot, so they're floppy. I LOVE those socks, of which I only have a couple of pair left. The majority are ( I believe) hanes XL no show socks, but they still bind at the end of the day in all sorts of ways. I wish that I could find loose fitting socks. I've tried compression with no relief. I've tried so-called diabetic socks and they ALL bind or they're so cheap that they don't hold up.
My questions are: are there loose fitting socks out there? Truly loose fitting. Secondly, which shoes should I try next? Orthofeet keeps coming up, but the reviews for neuropathy are dismal because the orthotics at the heel seem to be high, not to mention that the inserts may be rough. (Yep, I know you can add inserts, with added cost). I've been to 3 foot docs and am getting nowhere. I think I need shoes that have vertical room for the toes as well as width. I always go for wide now.
Of course, the best recommendation so far is, stay off your feet as much as possible. Good luck with that! I work on carpet tiles over cement with a rubbery relief mat here and there. Any ideas all? Thank you.
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