Vent about Permanent Neuropathy
Comments
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Garden - I have done PT. Both with a certified LE therapist for the swelling, and regular PT after I fell & broke my arm because I had no feeling in my feet. Solution for the broken arm was immobilization. That led to a frozen shoulder - thank heavens not on the side of the ALND. So PT for frozen shoulder for 6 months. Now I'm back to LE PT for truncal & breast LE. Sigh.
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Is higher glucose levels associated with our cancer treatment? I was dx'ed prediabetic last well woman exam. Anyone else?
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Read that many get metabolic syndrome after the taxanes. Don't want to survive cancer and then get diabetes or heart disease!
Thanks for kind thoughts about my brother!
Gardengypsy. Since you are seeing a DO you might want to see if they do craniosacral treatment. Only a small % of them do it but it's great!. .
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sorry Blownaway, I don't know. Personally my glucose is the same as it used to be.
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Chloesmom: Sounds good.
Blownaway: I've never had issues with glucose, but now you've got me wondering if I should be tested. Were there any symptoms? What will you be doing to take care of yourself??
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I read on another thread today that the steroids we are given with chemo can increase the glucose. So it might be good to test at the end of the 3 week infusion period.
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I've never had high glucose until my last well woman several months ago. They did the A1C test also and told me that I was prediabetic. Did not know it could have been caused by cancer treatment. I'll have it checked again this month.
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Blownaway, This may be an ignorant question, but was your blood drawn under fasting conditions? My MO never has me fast for blood draws, but does a glucose level just the same. If they catch me right after lunch, it might be a little high. I got unnecessarily worried once and then got a fasting glucose level from my PCP and it was just fine.
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I am a newbie to CIPN. Mine started about a week after I finished chemo with TC. What I have isn't too bad (compared to what I've been reading about on this thread). I have numb toes, numb balls of my feet and tingling in both hands.
My question is, does the CIPN get worse? Since it was caused by chemo, I have finished the chemo, and the poison is out of my body, it makes sense that it would not get any worse, but I still wonder.
I am hoping for complete remission of the CIPN. I was high risk for it but didn't realize it; this is my second go-round with chemo (and cancer).
Thanks for any help you can give me.
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My neuropathy has not gotten any worse than it was a couple of weeks after I finished chemo. 3 years out - my fingers are mostly better and only tingle or are numb some times. The cold of winter seems to make it worse. I can button blouses, which I couldn't shortly after treatment. I can open most bottle tops or lids. My feet are basically still numb - my toes and particularly the balls of my feet. Sometimes it extends up my calves. Although this too is not "quite as bad" as it was in the beginning, I have no feeling - and so no balance. My feet are still mostly blocks of ice. My neurologist told me 3 years ago that it MIGHT get better. And better only meant 'better than it is after treatment', not better like back to where we all were before chemo. That is certainly quantitative.
I have taken the B6 & B12 vits that were recommended, both all the way through chemo & ever since. I took Acetyl-L-Carnitine during treatment. I iced both my fingers & my toes as recommended during taxotere. I have tried to keep exercising like one therapist told me, the theory being nerves will regenerate. What I'm seeing is mostly enlarged blue veins after I exercise & blisters on the balls of my feet where I have no feeling after I walk. Most experts say the improvements can continue during the first two years. I'm one year past that, so I think what you see is what you get. I'm VERY fortunate that I don't have pain. I feel so badly for those who do have to deal with pain.
Groucho - I certainly don't mean to be the harbinger of doom, and I hope you have better luck than most of us have had. Maybe I'm bitter underneath, but I'm mostly resigned to keep plugging along. I haven't tried acupuncture, but maybe others have and will jump in with different ideas. Good luck with your recovery.
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Groucho - forgot to say, I was told that it takes 6 months for the chemo drugs to cycle out of your body. So I waited to do anything with my hair until after that time.
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Elimar - yes, it was a fasting blood draw.
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Thanks, MinusTwo, for your words of wisdom and experience.
Groucho2
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Blownaway, Like MinusTwo, I have heard it can elevate while on steroids, but you are well past that. The only other chemo I have heard that elevates blood sugar is Afinitor, but that does not apply to you either. Hope your testing this month falls into the normal range and that this is not an additional worry for you.
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I tried acupuncture and had some success ... but at $100 each visit out of pocket, I couldn't keep going. Chiropractor is cheaper and that works OK too.
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BlownAway - thanks for your post on July2014, it made me look where else you are posting. As to neuropathy, I got shingles and they put me on Gabapentin - shingles were still awful, but I noticed the neuropathy was better. I think I'll start lurking over here too.
Kay
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I have neuropathy, but the diabetic kind, numb hands that didn't let me find a lump till stage 4, and feet that feel like someone is using a red hot cheese grater on them.
I guess there should be a warning about neuropathy masking breast cancer.
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knmtwins - Great to hear from you. BTW - I stopped working the last day of December 2015, applied for SS disability and was approved within 5 months. Chemo is the gift that just keeps on giving....
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I can't work either because the neuropathy affects my balance. Have fallen 3 times and broke a rib one of them. Have difficulty stepping to the side and backward as I don't know where my foot is all the time
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HI, to Groucho and all,
My neuropathy started after my first chemo infusion, my feet felt like they were walking on little pillows with pins on them, I told my oncologist and he said, "Oh it's neuropathy, but it'll go away when you finish chemo." Wrong!! I am now almost 3 years past and it has not gone away, it has gotten worse. And probably it's also that I am trying to be more active, and the more active I am, the worse the zinging and weakness in legs and feet.
What I have learned about neuropathy in these years is that it is a very murky subject, there's no really good treatment, there's no certainty of anything. It might get better, it might get worse, it might go away. My GP says to take the B vitamins, and there are a gazillion "nerve pain" fixes online, but I think they are probably a ripoff. I do have acupuncture regularly, and it helps a lot with my energy level, and I believe it helps somewhat with the neuropathy. My doc uses the Asian technique of needling the energy meridians, and I recommend it. My acupuncture doc charges $45 per session and I gladly pay it every 2 or 3 weeks. I also get regular massages, every 3 weeks or so, that really helps with circulation. I can no longer exercise strenuously because of the nerve problem, so I have decided to do whatever I can for myself that does not involve taking pharmaceuticals, until perhaps the day comes when I really can't stand it anymore. I have also tried a treatment called "Body Talk", and I believe it has value. I do it every so often, once a month or 6 weeks. You can look it up online, it's hard to describe, involves a lot of deep breathing.
I heard of a treatment yesterday called "Anodyne Therapy", given to neuropathy patients. I talked briefly to one of the techs, and he said they have some success with it. But when I told him my neuropathy is chemo-induced, he said that is harder to treat, because chemo neuropathy is usually so systemic. Also you must have a prescription from a neurologist, and insurance doesn't pay for it. Something to do with infrared lighting, not sure how it works.
That is some of what I know about neuropathy, sorry you have also been troubled by it. There is not a support group for neuropathy anywhere around here where I am, but then I remembered, there's a support group right here!
Have a good weekend, Mary
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Maryna8, I wrote, on this thread, about Anodyne Therapy about 3 1/2 years ago...when I was having it shortly after the onset of my CIPN. Yes, it is a treatment for diabetic neuropathy, not really CIPN. I think it *might* have helped me heal a little back then, but only in the sense that I think it helped give me good circulation to the feet so my nerves could attempt to heal themselves as best they could. I had 3-4 treatments only. My therapy center was a bit crafty in the billing...as long as it was a part of my therapy hour, they wrote it up as part of the package and I did get coverage on it.
I am sure if you did a keyword search for it, you could find out what others had to say about that type of therapy. I have no idea if it could be effective this far out. I won't be having it again myself, but if someone else does get it/has had it a few years out, I would be interested if it changed anything at that point.
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What I find interesting (loaded word) is that therapists usually push you to walk or massage or etc. The theory as I understand it is that it 'stimulates' the nerves to regenerate. At 3+ years out with no major pain (just dead feet), I'm not sure I want regeneration if it means pain. But I hate the dead feet. Conundrum. Anybody have any thoughts?
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its a bit difficult for me to tell the problems apart, I have diabetic neuropathy, and couldnt tell it from chemicaly induced. just like I cant tell if I have hot flashes from tamoxifan or is it just low blood sugar? I have 4 things trying to kill me now, diabetes, 24 yefrs, congestive heart failure, diagonosed 4 years ago, breast cancer, and lymphedema. several different medications for each. liike I take one diuretic for congestive heary, and another for diabetes. also I am 69 years old and easily confused.
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cliff - I've been reading your posts on several threads and am sorry for all your complications. Glad to see you posting to increase awareness for male breast cancer.
CIPN is so weird. I thought my fingers had gotten better, but again - better is an operative work. Lately, while I can do up my zippers now, I don't have the feeling in my fingers that I thought I did. Makes it hard to 'swipe' on a phone or tablet. I'm glad I still have a flip phone.
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I almost retired last winter when I realized that the feellng was going in my hands. I work on really small parts in the electronic repair shop at work, and it makes it a bit difficult. in fact, holding tools requires attention, if I am holding a tool and look away, it will go to the floor. my hands are still steady though, so I am still working, just have to adjust. I have an incentive to keep working, my new grandaughter, who I intend to last long enough to world class spoil.
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I almost retired last winter when I realized that the feellng was going in my hands. I work on really small parts in the electronic repair shop at work, and it makes it a bit difficult. in fact, holding tools requires attention, if I am holding a tool and look away, it will go to the floor. my hands are still steady though, so I am still working, just have to adjust. I have an incentive to keep working, my new grandaughter, who I intend to last long enough to world class spoil.
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My new onc has upped my Gabapentin to 900 mg daily. I am waiting to see how that works.
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Hi Bosom Blues,
I would guess the acupuncture cost would depend on location, my doc is in a small town in middle America, he also does chiropractic care. He traveled to China as part of his acupuncure schooling, but likes rural living for his young children. I imagine this treatment would cost more in a larger city.
Good luck, I really think it's worthwhile!
Mary
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HI, Elinar
I had not heard about the Anodyne therapy before last week, none of the docs I have talked to have ever mentioned it, I assume because it's not much help in CIPN. But yes, I would like to hear if anyone has had success with it.
Gardengypsy, I am interested to hear how the increased dose of Gabapentin works for you. I assume that the dose you were on was not working, thus the increase? Have you tried any of the other drugs commonly given for neuropathy?
Cliff, you are certainly dealing with a lot of issues, neuropathy is only the icing on the cake for you. It's great that you can continue working, and find inspiration in your granddaughter.
Minus Two, I know what you mean. When the acupuncture doc really emphasizes needling the neuropathy points on my feet it actually causes more of the zinging, stinging feeling. He says that's good, I tell him I'm not so sure of that! I have heard such mixed messages on whether or not the nerves will regenerate at this point, some say yes, others say no. And then the diabetic neuropathy seems to react differently than the CIPN.
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Mary~ I have gone from taking 500 mg to 900 mg. (300 3x a day). I think it's working. I have never taken anything else.
I rode my incumbent bike today and plan on snowshoeing tomorrow. The neuropathic pain has taken away my exercise and I have to get brave and restart my program or I think I will be in big trouble before too long.
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