Vent about Permanent Neuropathy

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Garden Gypsy (me too!) - above is the link to the Skechers flip flops. I have purchased twice, paid about $35 each time.

Deb

Bosum - is the water therapy helping at all? Thinking of you.

Actually I started a 'silver sneakers' exercise class today. The exercises are done sitting or standing beside the chair. My balance is horrible since the feet are numb & I and I was glad the chair was there for the leg lifts. We used weights, stretch cords and a squishy ball the size of a soccer ball. I feel like a wuss, but I have to start back somewhere. I love the instructor. He teaches a Yoga class at a different facility so maybe I'll try that.

My PT specializes in LE. I don't have Lymphedema, but I am still in that time period where I could still get it.

If you have not done PT after all this, I highly, highly encourage you to get your onc or surgeon to write a referral (if you have insurance).

Massage...strengthening, stretching...we need it all.

My PT also has a salt water pool. Oh, yes.

Is higher glucose levels associated with our cancer treatment? I was dx'ed prediabetic last well woman exam. Anyone else?

sorry Blownaway, I don't know. Personally my glucose is the same as it used to be.

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.

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.

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.

Elimar - yes, it was a fasting blood draw.

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.

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

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....

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

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?