Vent about Permanent Neuropathy
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I have been experiencing neuropathy ever since receiving taxatere 7 years ago. Lately I have started having digestion issues which are also part of the nerve damage. Anyone else experiencing this?
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Pip, I had digestive issues after chemo and eventually found that going off of gluten solved mine so thankfully turned out not to be from neuropathy. I do know someone that had severe digestive issues after chemo for lymphoma. My community oncologist says that since my neuropathy has continued to get worse since chemo seven years ago (but mine was for lymphoma) that it's not due to the chemo. I think that's a load of crap but now my pcp and I are considering other possible causes.
I had something strange happen last evening. I don't get the burning feet thing too often. I usually have the frozen toes and feel weird lumps under my feet, among other things. Well last night the tops of my toes were burning and red and the bottoms were cold...too strange. Anybody else?
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Thanks RR. I am pretty sure that doc is full of crap....lol. I tell people I meet now that it is too bad they didn't know me before chemo. I was so much smarter and quite an athlete before that!
This digestive issue is fairly new. It may also be part of the shingles I had in the fall. Even though I did have the vaccine, I still got it. Not much of a rash but terrible pain down left leg and feeling full after a small amount of food. The leg pain still flairs up, so maybe the stomach thing is part of that.
I am on vacation right now so won't see a doctor for a couple of weeks.
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When my toes are burning and the stinging, they also turn bright red and feel like they are on fire. I have also noticed that the tops of my toes look shiny before it happens.
I don't know if my digestive issues are from chemo, neuropathy or both. Before chemo I could take my nexium every other day and be fine. Miss a dose now and I pay dearly. I also have issues with upset stomach but again I have no idea if it was aggravating from treatment or the way I was left after have my gallbladder removed which was 10 before cancer.
I had my yearly scans yesterday...on to the wait till Wed.
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All the symptoms get difficult to track with our ages (for those of us over 50) and histories. New ones are always alarming though.
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Kittydog I'll be thinking of you waiting for scan results today
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Wrenn - What did your neurologist say? Thinking of you.
Interesting about the digestive issues. Hope you all are finding some relief.
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I am happy to say my scans were good. Almost 4 years NED.
Neuropathy hasn't been bad so far this week other than the daily pricks to check my sugar. Last nights felt like it went in the bone. May yet ask if I can test on my arm.
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Hello, all,
I had my first appointment with a physical therapist yesterday for my peripheral neuropathy. My mobility has been compromised ever since I was treated with Taxol nearly six years ago, compounded by osteoarthritis in both knees (I had a knee replacement two years after treatment for BC). It was a relief to talk with someone about my mobility issues and to get a sense that I may see some improvement with therapy. I've noticed an improvement since I stopped taking letrozole in January--less pain, demonstrated by the fact that I haven't taken any vicodin in the past month. I don't expect that the awful sensations in my feet will change, but if I can get around more easily and improve my general stamina, I'll be happy.
Wishing everyone a measure of relief and optimism.
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Have you tried Lyrica?
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Hi SoCalLisa,
I've tried Cymbalta and gabapentin. Neither one had any effect on the numbness, and the side effects were pretty bad. I'd have tried to tolerate the SEs if I'd had any relief. It's my impression that these drugs sometimes work on neuropathic pain, but so far there's nothing out there for the numbness caused by chemotherapy.
Have you had some relief from PN with Lyrica?
Ann
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I tried neurontin and amytripiline and they did nothing for me. Lyrica really helps with the pain but not numbness. I also had a MD who did acupuncture and it helped the circulation. It took a while to get the Lyrica up to speed but it works for me.
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Not too much venting around here lately?
My foot neuropathy has persisted for six mos. now. The pattern was like this:
One mo. after stopping chemo, neuropathy was the worst with my feet feeling numb, cold and crushed (toes thru' the arch and a bit into the heel.)
Two-three mos. after, I felt about 5% better, just the numb feeling mainly in the balls of feet and toes. My balance got better.
Now, about the same degree of numbness but some days seem to be a little better (2-3% less numb) but some days seem to be worse (feel a touch of the cold, crushed feeling.) I can't tell you what sets them off, not actual cold. It is frustrating because recovery seems to have stalled out and I don't think there is anything I can do. If I knew that I could fully heal, I would feel better about the day-to-day numbness that I have, but it does upset me that this could be a lifelong thing.
With hindsight, I am kicking myself for doing "just one more" round of chemo with the platinum drug. I knew it was affecting me, but took a gamble that I would not be left with anything permanent. I never even reached the cumulative level where a small percentage start to report having permanent neuropathy but, then again, I had fibromyalgia to begin with. I think that made me more susceptible.
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Eli - I'm where you are with the numbness or frozen feeling toes & balls of of my feet. I think (not sure) that my ankles & moving up my calves are a little less numb. I'm nervous trying to cut my toenails. My fingers still alternate between tingling & burning and numb, and my hands are always freezing. I can zip up my pants now but can't open a bottle of water. It's very difficult to pick up coins from a flat surface, and (maybe TMI) I hate that I can't wipe the 'sleepers' out of the corner of my eyes or pick my nose. (I know - yuck) I'm 7 months post taxotere & carboplatin and 3 months past cytoxan & adriamycin. AND I finish my last radiation tx tomorrow.
I plan to get back to the PT once the rads burns are healed. It seems the point of PT was to teach me to navigate safely w/numb feet, and I pretty much figured that out - keep your knees bent and slow way down. I plan to see the neurologist again at one year PFC. She said there are tests they can do but I felt it was too soon since I was still in active treatment.
Agree - Sometimes I think my hands are a little better but some days are worse than others & I can't find a trigger. Hindsight I too wish I'd cancelled the last taxotere/carbo infusion. I was complaining about neuropathy and MO gave me the choice for #5 & #6, but since I'm ER/PR neg he strongly recommended I should go ahead w/the chemo. Even at that, the tumors only shrank in 1/2 before surgery so I probably made a good decision, but...
If I'm looking at the glass 1/2 empty, I'm guessing this will be life long. My neurologist said there will probably be some improvement but it would never get back to where I was before. So that's my 1/2 full glass. There's that darned new normal again.
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MinusTwo, you know me. I have always boldly said the heck with new normal. Besides a variety of scars on my body that I turn a blind eye to, I strive to get back to my old normal and I am pretty darn close. It's this numbness that is holding me back now. That's why I hate it so much.
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Yes, Eli - I agree once more. I hope I can really ride the mules down into the Grand Canyon, and hike the mountains & the seashore, and thread a needle - and I sure haven't given up yet. We'll just keep pushing!!!
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For me I think it is longer days and warmer weather. It always helps. The cold makes the pain so much worse that things getting warmer help just enough to cheer me up some. I've no doubt my venting will start in again
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CCN Cancer Survivorship Guidelines Expanded to Address Two Common ConditionsByCaroline Helwick
Posted: 3/18/2014 2:38:26 PM
Last Updated: 3/18/2014 2:38:26 PM
ADVERTISEMENTKey Points:The NCCN Survivorship Guidelines include a new section on cancer-associated cognitive impairment and an expanded adult cancer pain section that more fully addresses chemotherapy-induced peripheral neuropathy.Current management strategies for cognitive impairment are patient-centered, supportive, and nonspecific.Treatment for peripheral neuropathy includes antidepressants and anticonvulsants, with low-dose opioids and topical agents used as intervention, if necessary.TheNational Comprehensive Cancer Network(NCCN) has expanded its Survivorship Guidelines to include a section on cancer-associated cognitive impairment, and to include chemotherapy-induced peripheral neuropathy as a component of the Adult Cancer Pain section.The inaugural guidelines for cognitive impairment were presented at theNCCN 19th Annual ConferencebyElizabeth Kvale, MD, of the University of Alabama at Birmingham Comprehensive Cancer Center, whileSusan G. Urba, MD, of the University of Michigan Comprehensive Cancer Center, described the new section on peripheral neuropathy.Dr. Kvale toldThe ASCO Post, “Chemotherapy-associated cognitive impairment is a common experience for cancer survivors and it has been underrecognized. The guidelines are an important validation of our patients’ symptomatic experience, and they will allow clinicians to take a structured approach to evaluating it and to supporting patients who have this problem.”Cognitive ImpairmentThe NCCN Cognitive Function Guideline for Cancer Survivors acknowledges that although patient-reported cognitive dysfunction is associated with cancer treatment and is modestly correlated with testing, there is limited evidence to guide management, especially for cancers other than those of the breast, Dr. Kvale said.Neuropsychogical testing can help “sort out” the condition, she noted, especially in elderly patients who may have dementia. Neuroimaging, on the other hand, is generally not helpful, but an expanding evidence-base is now suggesting that structural and functional changes underlie the experience, she added.Patients who present with symptoms of cognitive impairment should also be screened for potentially reversible contributing factors, especially depression. Currently, there is no effective brief screening tool, and available instruments lack adequate sensitivity for subtle declines in cognitive performance.“Current management strategies are patient-centered, supportive, and nonspecific,” Dr. Kvale said. “Reassurance and watchful waiting are not inappropriate, because many issues resolve on their own.”Chemotherapy-Induced Peripheral NeuropathyPerhaps, at this point in time, more can be offered to the 20% to 40% of patients suffering from peripheral neuropathy. The development of neuropathy is a key reason for premature discontinuation of treatment, and for a sizable proportion of patients neuropathic pain persists indefinitely.“Peripheral neuropathy has been part of the cancer pain guidelines for years, but we are now focusing more on the long-term cancer survivor, who can have late effects of treatment,” Dr. Urba said.The first line of treatment is antidepressants (especially duloxetine) and anticonvulsants (gabapentin and pregabalin), which are often effective on their own but can be combined with opioids when pain is more resistant, Dr. Urba said.If opioids are necessary, the lowest dose should be used, and for long-term use clinicians may want to consider establishing a pain treatment agreement, she said. Having patients on opioids can be “tricky,” she indicated. “Clinicians don’t worry about a patient being on gabapentin for years, but they can be uncomfortable prescribing opioids long-term.”Other interventions recommended by the NCCN include topical agents (usually best when combined with an opioid, antidepressant, and/or anticonvulsant). These include the 5% lidocaine patch, diclofenac gel 1%, and corticosteroids in acute crises.The psychosocial support of patients left with peripheral neuropathy is important, Dr. Urba emphasized. “They may be on lifelong medication, and they should learn coping skills,” she said. Because of the multidimensional nature of treatment-induced neuropathy, she recommended a “team effort” in order to truly impact this symptom.0 -
Yes, the pain can be treated with drugs that change the brain chemistry and/or have their own side effects. If your CIPN pain is bad enough, these drugs are "good" in comparison.
Good thing we all found BCO. Welcome to your psychosocial support!
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Thanks Lisa for posting the article. My neuropathy is unusual in that it is in my forehead which has tingled and itched since my last dose of chemo, almost 5 years ago. It actually started during the infusion when my forehead turned bright red and became painful. I generally try to ignore it but there are days when it is not possible. I am glad that they finally are acknowledging this side effect of chemo.
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Hello ladies....I have been holding alot in when it comes to my neuropathy because I know I will not be taking any drugs for it because I am so sick of SE of drugs. I hate the feeling of my feet feeling like prunes. I put lotion on them and it helps a wee bit. Since I have been back to work and typing I think my left hand is getting a little better, it never affected my right hand. Maybe cuz my lumpectomy was on my left side? I wonder if it is like a sore and you keep touching it it will slowly get better. It does help to come here and vent and I appreciate everyone here for presence, although I find myself unable to stick to a thread I do lurk a lot and I am thankful that we have this safe haven to come to. I also love having a good laugh with you all which I do quite frequently.
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Just slathered my feet with Petroleum Jelly and rubbing them together,,,Wow that feels good! let me know if you try it and you like it!
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lovewins - I've been using CeraVe lotion on my feet. And I keep socks on at all times. Yesterday it felt like I had supper gritty sand in my shoes when I was walking. Of course an illusion.
It's beginning to warm up here and I'm wondering what I'll do about sandals. I've read we're not supposed to wear them w/neuropathy - not enough protection. Probably won't try this year since both of my big toenails haven't decided whether to come off or stay on and are super ugly.
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I was wondering the same thing Minus two....a couple of my toe nails look like they may fall off. Also very nervous about getting a pedicure????
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Love - I did go see a podiatrist back last year and he took samples to make sure there was no fungus. He said he could remove after treatment was over but I don't really understand if there is a new nail growing below or not. Maybe no nail would be worse? I too have stayed away from mani/pedis, and it's difficult to cut my other toe nails when I can't feel my toes.
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I can relate to that one. I finished my chemo in Feb. and in July I started loosing my toenails. I had already lost my finger nails and they had grown back. I don't know why it took so long for the toe nails. I wear crocs year round. When it is extremely cold I have worn some sneakers but they just hurt my feet. I have been lucky and only had one problem and that was a splinter. I think how I got it was at a playground that used that bark stuff, and a piece got in my shoe through the wholes. Thanks to the neuropathy I never felt it till it got so infected that my toe started throbbing. That is the scary part of neuropathy so now I check my toes every week.
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My two middle toe nails are still hanging on...they are almost all white and I did get an infection on one and put Neosporin on it. I am going to check into a pedicure...it is driving me nuts. I know it will not be comfortable but I need to get it done. Let me know of anyone here has any suggestions? Hope your toes are doing better Minus2.
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Lovewins - I just keep socks on 24/7 & try not to look at my feet often. Let me know what they say if you go for a pedi.
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Looking back, I am able to see improvement that is imperceptible on a day-to-day basis.
It has been over seven mos. since the onset of my foot neuropathy last Sept.. I have not had the cold, crushing pain that I had during the first few mos.; now only a persisting numbness and a minor discomfort. This could be due either to the passage of time or the annodyne therapy (x6) that I had in late Fall, or both. I did take B-12 and B-6 too.
When the neuropathy began, I would say that my left foot was 45% numb and the right was 55% numb. After the New Year, it seemed that I might have improved to 40% numb and 50% numb, respectively. Really, it was hard to distinguish, and it seemed like I would have some days better than others. Now, I would say I might be at 35% and 45% numb, left and right. The other day, my toes could finally feel the hotness of bathwater. Just a little.
What I wrote above is about the degree of numbness, but he area of numbness is definitely reduced also. I barely feel it in my heels anymore. All the changes are very s.l.o.w. Just trying to go into detail here as a way to note my progress. At the rate I am going, I don't know if I will make it all the way back to full foot sensation or not.
Things that seem to help:
I always had enough balance to walk and, after the first month or so, it did not feel uncomfortable. Gets the blood flowing.
Using a hand-held massager. (No, not the vibrating twister!) I put it on the fastest vibration and use it on the soles of my feet. Like walking, it seems to boost the circulation in my feet and they feel "more human" afterward.
A very warm foot soak. Anything that gets my foot circulation going feels good.
Massaging lotion into the feet and then wearing some soft cotton socks.
I'm always rotating my feet and scrunching the toes. I've gotten OCD about it, but no idea if it actually helps.
Last, but not least...getting a good night's rest. Less likely that a bad day will follow.
I know I am lucky not to be experiencing daily pain, but I am like everyone else here who would dearly like to feel something other than alien stumps at the end of her legs. Found out I am way too impatient for things like neuropathy. Hurry up feet!!!!
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Eli - thanks for the details. I don't think I'm seeing as much progress as you have. It's excellent that you've documented the changes. I need to do that too. I don't have too much pain either, but I do have alien stumps. I notice it most when I step into the shower or get out of bed in the morning. And I notice my fingers most when I'm trying to pick up coins or stir brownies or do up a zipper.
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