Vent about Permanent Neuropathy

Bosom,

I wonder what the doc does for neuropathy at this clinic you mentioned. I do go to acupuncture every 3 weeks or so, I believe it has helped a lot. I still tire more easily than before, and my legs get very tired but overall, I believe I am better. My acupuncture doc only charges $45 a visit, so it's not bad, and I consider it well worth it. I think you are right too, some days are just better than others. It always seems to help to be well rested, which I am not right now thanks to the long holiday. It also seems that if I injure any part of my legs, the neuropathy will flare in that area for a while as well. Over the last year and a half or so, my knee has developed arthritic pain, I injured my foot with a dropping incident, and my ankle was injured. All of these seem to cause more nerve pain when they are aggravated.

tangandchris - I too am in the Texas heat. And my feet are always cold. At home I wear fuzzy slippers. When I go out, I wear socks & Traveltime slip ons. I wear socks to bed. Hope you can find relief down the road.

Back to acupuncture. I had 12 sessions at Dana-Farber within a year of treatment (I experienced numbness in my feet starting with the second treatment of taxol/herceptin). The practitioners there are highly experienced in dealing with this treatment for CIPN. I saw no improvement.

Of course, everyone's experience and body chemistry is different. It's worth trying if you're struggling and nothing else is giving you relief.

I'm nine years out and the only thing that's helped me is gabapentin (1800 mg., slow-release--three pills taken at bedtime).

As I understand it, gabapentin only helps with pain. It doesn't do anything for numbness or muscle weakness.

How far are you into treatment LookForward? What was your diagnosis?

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

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))

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.

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.

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.

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.

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!

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-

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

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

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.