Vent about Permanent Neuropathy

Chloe'smom, I haven't heard of the neuroquell. My GP did prescribe a couple of things for me, they were just concentrated forms of B vitamins, prescription-strength. He gave me samples but I couldn't tell any noticeable difference after a couple months. I am back to my normal B-vitamins, and extra B6 and sometimes Folinic Acid, which is from pharmacy but cheap.

Angelica, I do acupuncture regularly every 3 to 4 weeks, and I do believe it has helped. . Usually the neuropathy comes with the Taxol, or Taxotere. I had not heard of it as a side effect with AC, but anything's possible, that's for sure!

Good luck to you, hope your treatment goes very smoothly!

ProudtoSpin, maryna8, BosumBlues - thanks so much for the kind words about my doll! I do sell them and was just getting ready to open an Etsy shop when this all happened...

dtad - Yes, the chemo is because I'm HER2 positive.

VLH - Definitely a tough spot to be in, but aren't we all? I'm hoping my MO will have some ideas because I do not want to do anything that will make the neuropathy worse.

Thank you all for responding to my post. I find myself in a state of semi-panic most days lately and so I sew and sew and sew.

also, i wiggle my toes in bed a lot! I beleve it is my toe exercises

Thank you for the encouragement, BosomBlues. 😀

My MO initially said that if I still had neuropathy at six months, it was likely permanent. When I saw her last week (5 months post-chemo), she revised that saying she's seen the neuropathy dissipate up to a year after final chemo? I'm trying to remain optimistic.

With being more active, my herniated disc / sacroiliac joint issue was re-emerging. I was doing an exercise I learned during the spine PT and was shocked to discover I can't balance on one foot for even 2 seconds. After my MO appointment, I ate out and realized that I was very nervous about going down two easy (wide / shallow) steps without a hand rail. Those incidents forced me to recognize that there was a serious problem.

I've been forcing myself to walk more and during a long jaunt to Medical Records found that I had to stop frequently to restore my posture to normal vs. a stooped Disney crone. I'm wondering if my body is trying to adapt its center of gravity?

I'll continue with the core strength / balance spinal exercises I already know until I get through radiation. (Mapping is scheduled for the end of the month.) I know I've seen good tips here so will glance back for in-home ideas. I simply can't stomach scheduling additional medical appointments right now.

Lyn

VLH - I went to a neurologist right after chemo. She said pretty much what Bosum said - you can expect to get better during the next 3 years. Unfortunately she clarified her statement that 'better' means from where I was at the point - not necessarily 'better' like where I was before cancer. Agree - keep yourself in the best shape you can.

This is rad wk#3 out of 6. I thought neuropathy and arthritis were under control. All of a sudden, I get pins and needles in wider range than before.

I dearly hope they calm down after rads are over. Losing patience a bit.

Mimi

Bosum - I agree that something "new" may be up. Do you have pain or just increasing weakness? I can't think of another doc that would be better than a neurologist. Did they do a full work up? Mine offered but I was still in chemo so I deferred that.

I fell a couple of times when I was still in active chemo treatment. My legs just crumpled and I slid to the ground. But not since.

I'm also approaching 4 years. I got some better over a two-three year period but then seemed to level off. Now - my fingers are usually fine. My feet are mostly dead. Sometimes the lack of feeling seems to travel up my calves. This does cause balance issues, but I'm so grateful I don't have pain.

I started exercising this year in March, hoping that strengthening my muscles would help. It was hard to find shoes that would work with dead feet. I go to a Silver Sneakers class, where we have a chair to hold on to if necessary, and added water aerobics this summer. I know my leg muscles are getting stronger & my core, but don't see any change in my feet. Regarding my balance, it's interesting that I have to use the railing for the 3 steps out of the pool now and I have to keep one arm touching the side of the shower when I close my eyes to wash my face. I have to be very deliberate where I'm placing my feet. As someone who used to stride out - even up hills - this is still very upsetting.

Later this fall I do plan to visit the neurologist again. I don't know what I'm expecting, but I haven't checked in with her for 4 years so I'll give it one more shot. Of course I'll pass along any good ideas she might have - but I expect you're right - they all push drugs.

I'm sorry that the neuropathy has worsened, BosumBlues. :-(

MinusTwo, my plastic surgeon suggested seeing a neurologist while my MO only mentioned PT. I did wonder what a neurologist might offer other than drugs. I'm sorry that your exercise plan hasn't helped your feet, but stronger muscles has to be a good thing.

Lyn

Thanks, MinusTwo. There is a STAR Rehab facility one floor down from my MO's office so that may be why she automatically thinks of PT / OT as a preliminary referral.

Lyn

Bosom,

I am so sorry that you have weakness to that degree. I do believe I am better and since acupuncture is really the only therapy I am doing for the CIPN I give it some credit. It has especially helped with the pins and needles aspect, I think. Also, these things I mentioned doing I do in spite of how I feel, I just get frustrated because I can't do them very long and then I pay for it with pain and exhaustion.

The cortisone shot I got in my knee a few months ago is wearing off, that doesn't help things either. But you are right, I should be grateful because things could be worse; and I am, I just haven't reached "acceptance" of my new reality yet, that may take some time yet.

Food sources are the best form of vitamins.

My neurology appointment is next Wednesday. I'd like to be able to exercise again. My ankles absolutely throb if I overdo it. I am worried about my lack of cardio work.

I am wearing a brace fitted by an orthopedist on one ankle because I think I sprained it. I haven't been able to walk without limping in two months. I miss my active lifestyle.

Lita, I also make dolls (and jewellery and pottery and...). Where do you get your stands? Do you make your own patterns or buy them? I'm starting taxotere in about 10 days and I'm worried about my ability to use my hands well enough to continue my "art." (And yes, you're an artist!)

Bosum~ I think it's absolutely essential that we keep moving - no matter what. As soon as my ankle heals, I am right behind you.

I was just approved for SSDI. A bit shocking to be labeled "permanently disabled", but also validating.

Ping pong - I buy the stands from Amazon. They come in various sizes and after some trial and error I found this one which works nicely, although I found that tying her waist to the post gives a better "look" for photos.

I started with a pattern for an American Girl-type cloth doll that I found on Etsy and then resized and changed just about everything about her! Her outfits were also created that way - start with an existing pattern and alter the heck out of it!

I'd love to see pictures of your work - do you sell online? And how is your chemo going?