Vent about Permanent Neuropathy

Liwi

I'm trying acupuncture to help with my neuropathy in my feet. My MD does it in addition to her regular medical practice. I think it's getting better though slowly. She's reminded that it came on over time and I've had it over to a year since my initial taxol treatment so I need to allow time to get better. Neuropathy is one thing that scares me about any future chemotherapy, don't want it to get worse.

lulubee

I have also been encouraged by my oncologist to try acupuncture. It definitely helped me get through the healing process post-mastectomy and reconstruction surgeries ten years ago, so I think I should give it a try for this. Please keep us all posted on how it goes for you, Liwi.

MinusTwo

As promised - here's my report after the appointment with my neurologist last week. I am 3 years out from the last chemo & rads. I have three finger tips that are sometimes numb, but hands have mostly resolved. My feet however are still numb/dead. Occasionally it feels like the numbness runs up my calves.

The doc confirmed that yes indeedy, there is no feeling in 90% of my feet. Fortunately I don't have the shooting pain. Occasional burning, but not bad enough that I'd want to take pills. She also confirmed that there really isn't anything she can offer except meds for pain - which I don't need or want. She mentioned some people use lidocane patches on the soles of their feet. I asked about accupuncture and she said "it can't hurt if you want to try". She did recommend trekking poles for walking stability.

Someone mentioned they thought their neuropathy was getting worse - maybe on this thread. She said if it was truly caused by toxicity (CIPN) it would not get continue to get worse unless there was another underlying cause medical cause. Apparently there are other reasons besides diabetes but I didn't ask any details. Of course that answer was based on 3 years post all treatment so my neuropathy has stabilized and there is no progression. (but there are bad days... different story)

The thing I hate the most is the lack of balance. I can not stand on one foot - so feet never get thoroughly soaped in the shower. I can not close my eyes and feel stable even on both feet. I have to be leaning on the shower wall when I wash & rinse my hair. Sometimes it's difficult to get up from a chair & keep my balance if there are no arms on the chair. I broke the 3rd toe a couple of weeks ago in a rush to answer the phone w/o shoes on. The tip has no feeling, but boy I'm sure hobbling about from the pain at the junction between toe & foot.

So that's it. Until & unless there is some new miracle, I'm where I'll be until & unless I get arthritis or gout. (oh happy days) But I'm still NED. Since I'm ER/PR negative, but HER2+, there weren't a lot of options. I'd like to think I'd skip the last two taxotere & carboplatin infusions after my recurrence, but I'd probably do the same thing again - since even with them I didn't have pCR.

gardengypsy

Checking in here...

Hey Minus~ I am sorry to hear about the numbness. Also hearing your gratitude about NED! My neuropathy worsened considerably months after chemo...I think that the joint pain in my ankles from Tamoxifen makes it feel much worse.

My PT has me doing balance exercises daily. Have you tried those?

Lulu~I am doing acupuncture and I think it is having a positive effect.

Liwi~ It makes sense that we need to allow time as it has taken time to develop.

My naturopath has me taking Glutathione, a powerful antioxidant. ( Neuropathy is caused by oxidative stress) I think this supplement is helping!!!

proudtospin

my pt had doing balance things,they work and i need to do them again

NotBrokenJustBent

I just posted on the other neuropathy site. My bare bones tablet will not cut and paste and I do not want to rewrite it here. yes, it would be nice if the two forums could be combined. I see many of us visit both sites and it is mostly redundant.

I mostly say the same thing over and over, and while venting usually is not helpful and only makes me feel worse, somehow sharing here I find very therapeutic. Neuropathy is not something I ever mention to anyone as I feel it comes across as hypochondria so I thank you all for your posts and sharing of your thoughts and treatments.

I DO feel somewhat angry that chemo was recommended for stage 1A dx and yet none of my doctors mentioned it as a possible side effect, nor the permanent effects on the texture and quality of my hair. I asked the right questions but only told that the only SE would be I would lose my hair but it would grow back. My hair never grew back the same, it is stringy, thin and limp, and I still suffer from the crippling neuropathy. Doctors and nurses even mocked me when I wanted to ice my fingers and feet and said neuropathy is extremely rare and should it happen it is very temporary and icing is just a myth so stay off the internet.

I was slammed particularly hard by this, perhaps because I was going thru a particularly bad time prior to my DX and I had extremely poor nourishment, in fact I was emaciated. I had periods of heavy drinking and a bad back which may have damaged my nerves so I may well have been more predisposed to the harmful effects of the chemo, but doctors were well aware of my medical history and perhaps that should have been taken into consideration before recommending chemo to a stage 1A patient. Additionally because of the blockers my glucose levels are now high and I am prediabetic which could also explain the progression these last few years. Having said all that I am very happy to share that over this last month my neuropathy has greatly improved by perhaps 25%. The only thing I can attribute this to is perhaps the reduction of my stress levels. Maybe this is just a fluke but I hope it continues. I am more hopeful than I have been in a very long time.

Hang in there my friends. Perhaps medical science may find a cure for us yet but in the meantime try to keep your mind off our aliment and do the best we can to give our bodies the tools to heal.

MinusTwo

Not Broken - glad to hear you have some improvement. When you get a chance, please do go to my profile & fill out your personal information. It is always helpful for us to put your improvement in context with your treatment - such as what chemo you had, did you have radiation, or surgery, when treatment ended, are you HER2+ etc.

VLH

I had my initial evaluation for post-chemo PT last week and failed all three balance tests, landing in the red zone. I'm trying to cram in as many appointments as possible, but the rehab facility is heavily booked as others are also trying to maximize their insurance benefits before calendar year end. I'm very concerned about how these balance issues will affect my ability to teach dog obedience classes. As my stance and gait have changed with the balance issues, I'm having pain in my feet, not nerve pain as many of you have experienced , but rather feeling like the bones have collapsed making me more flat-footed. With the physical therapy, lymphedema treatment, mammogram, breast cancer surgeon routine follow-up plus trying to get in for a spinal injection for my herniated disc, I don't see how I can work in a podiatrist appointment, if there is even an available opening. At the same time, I'm grateful that my most recent tumor markers didn't reveal anything scary.

Lyn

NotBrokenJustBent

VLH, with the neuropathy many of us walk funny and instead of heel toe we walk flat footed and duck like. It is a classic symptom. I wonder if that could be the cause of your pain in that you are walking differently and putting pressure on different areas. Just a thought that it is neuropathy related.

VLH

Interesting that it's not just me with "flapper feet," NotBrokenJustBent. At my first PT appointment today, the therapist said besides balance, we'll be working on strengthening the abductor muscle over my hip joint that was replaced in 2007. During my 6-minute extended walk test, I had to take a break because of cramping in that area. The leg length discrepancy has been an ongoing problem so I hope the exercises help.

I saw the Flexi Touch rep this morning and my pump is already en route. Between my misdiagnosed herniated disc and inflamed SI joint issue and the cancer stuff, my bedroom hasn't been cleaned in two years. I'm embarrassed to have the trainer come here, but I'll just have to focus on tidying the area where s/he will be setting up the equipment. After having what seems like a bazllion people see my breasts, what's a little more humiliation?

Lyn

jackboo09

Hi

I was wondering if anyone attributes their neuropathy to aintenance HP treatment? I had THP for 4 cycles and finished in July. I have been on HP ever since. I am oneweek out from the last HP and have had a return of numbness, tingling and some burning/ shooting pains in hands and feet. When I say return- Taxotere was dropped after 4 cycles because of neuropathy symptoms.

So it went away after I stopped T and now 4 months later is back?

I am currently NED and teach full time. I am very worried though about worsening symptoms.

Could this be Perjeta to blame now.

I also suffer sinus symptoms. Any advice or input would be appreciated.

Liz

NeverForsaken

I had the terrible sinus problems..constant runny nose (clear), and crustiness inside nostrils on the Herceptin. The runny nose lasted for a couple months beyond the last Herceptin (I had H for one year)..but the crustiness continues today (almost four years later). My recent MRI showed a benign cyst on my right nasal passage. I never had sinus problems before.

I can only say that I always have tissues on hand.

Praying you remain NED!

But the SE's sometimes remain after treatment. My neuropathy never fully resolved..maybe about 85% or so. I imagine it will be an issue again for me since I am due to begin Taxol, then on to H& P indefinately.

NotBrokenJustBent

The neuropathy took a nasty turn and I could just cry. My legs have been very shaky and weak and I have much to do but I am afraid to get up off the couch. I am so discouraged. Days like this my mantra is "Just shoot me".

proudtospin

never, i have had sinus surgery for polyps twice,10 years apart. My most ent recommended using saliine every day to keep sinuses clear. Easy and harmless to try and i can highly recommend it

VLH

I've been doing physical therapy for a couple of weeks now & feel that I'm getting stronger. Because I'm having serious back issues that affect all my other activities, the therapist is working on strengthening my back / core as well as my balance problems. Of course, the two often go hand-in-hand.

I know it's difficult to quantify, but how much improvement do you feel you derived from physical therapy? Facing a new insurance year, I'll need to mostly work on my own. The therapist (love her!) has been gracious about providing printouts of my exercises with tips & cautionary notes about my form to help my self-care program. Thanks!

Lyn

MinusTwo

VLH - I feel like my benefit for neuropathy from therapy was OK but not fantastic. Like you mentioned, balance & core-strength are critical issues. Unfortunately that doesn't fix dead feet.

As for going it alone, for me it depends on whether I will actually take the time & do the work. It's a matter of forming new habit patterns and absolutely putting exercising FIRST. Unfortunately it's really easy for me to to say 'oh I can skip today & catch up tomorrow'. When I follow through, I think you can certainly get a similar benefit. I did join a gym and try to walk on a treadmill several times a week. That is on hold while I get ready for the holidays. Did I tell you how easy it is for me to procrastinate? I do go to Silver Sneaker's classes twice every week, and have flirted with Yoga. In the summer I do water aerobics 3x a week, and I think that's the best of the lot.

Could try doing it on your own after the first of the year and go back to the PT if it doesn't work out?

VLH

Thanks for the input, MinusTwo. Having dealt with severe Fibromyalgia and now using a lymphedema pump an hour a day, I know it will be hard to be self-disciplined and stay motivated. I've scheduled a few PT sessions in January in hopes of finding a balance between cost and not backsliding.

Lyn

NotBrokenJustBent

gardengypsy

NotBroken: Indeed! :-))

gardengypsy

Minus, VLH: This disease has reminded me that I must take care of my Self. Despite pink propaganda, I cannot take care of everyone else at the same time. We can take a break from the holiday madness and give ourselves a half hour of fresh air and exercise each day.

Lanne2389

Hi Lovelies,

I'm new to this board. I finished chemo May 2017 (12 rounds of Taxol then 4 rounds AC) and started getting PN in my fingertips and feet about halfway through the Taxol. MO referred me to their acupuncturist - tried about 6 appts and it seemed to help but I stopped the week before BMX surgery - just too much to deal with. Haven't been back tho. My fingertips have resolved (the very tips feel a teeny bit numb) but my feet are still very uncomfortable. The “pillow" feeling has moved from the balls of my feet to under my toes, I have the burning feeling, but I have regained the ability to feel temperature and touch on my soles. I can walk for a couple of hours max and then it's too uncomfortable. I have good days and not so good days like most of you.

A few questions and a shoe recommendation:


I've been on 600mg of gabapentin. It helps a lot but does make me sleepy. Can anyone comment on the slow release formula? Does it work better or worse that the not-slow-release version? (I also rely on Gab for pain/skin sensitivity I'm having with my %#*{€ tissue expanders) (And joint/leg pain from Letozole also sucks).

Can anyone recommend Gab over Lyrica or Lyrica over Gab?

As for shoes- I recently bought a pair of Addidas Cloudform Pure sneakers (slip on, got 1/2 size larger than normal size) and they are fabulous. Memory foam supportive insoles and even my 17 y/o thought they were cool. Was able to walk much longer than usual on a recent Spring Break sight-seeing trip with kids. If I could wear them with everything I would.

Long post! Thank you all for sharing - feels better to know I'm not alone in this.

Lanne

proudtospin

Lanne. Welcome, agree on getting good shoes! I am picky on shoes also and they make all the dif. I take a mild gab but not sure it helps me. It is a funny pill.

Well plan on a visit to gym today, for me that is my upper, i am also gonna try to hit the coast for lunch, been a while since i did that, those two things are a super upper and it is in the 60s today!

lulubee

Lanne, I've been on weekly Taxol for 15 months. I was prescribed gabapentin for neuropathy last fall but I absolutely could not take that stuff. I felt wonky and awful on it. I did some research on other things that might help and kept coming across suggestions to try a GABA supplement (GABA stands for gamma-aminobutyric acid, a neurotransmitter that naturally occurs in our bodies). It really helps me--the neuropathy stopped ascending further up my feet and hands, and then began to actually reverse. I take GABA Calm by Source Naturals, two before bed (it also helps with anxiety and insomnia) and I also take one before I go to the chemo lab and another when I get back home after chemo. It is definitely worth trying.

Those Adidas slip-ons are great! I have lost count of how many pairs of Skechers I have. I started wearing them back when I had HFS when I was on Xeloda for three years. They practically saved my life, because X made my feet a mess of raw blisters with the least bit of friction, and without my Skechers I would have been sedentary most of the time.

proudtospin

Addidas makes slip ons? I need to look into that!

Mucki1991

Did seeing a neurologist help anyone? I can't take ssri drugs and gabapentin gave me hives after a couple of months. I'm starting acupuncture soon. Thanks for sharing every one.

MinusTwo

If you are in pain, by all means see a neurologist. If not, there really isn't anything to make it better. The worst thing for me is balance issues since my feet are dead lumps. My PCP recommended I see a doc to test for vestibular rehabilitation that Lisa mentioned. It may do not be a fit for me but she thought it worth exploring.

proudtospin

I saw nuerologist, they do testing but really only referred me to nuerosurgeons. I did some rexearch as the nuerologist told me i had ms! When i did research it told me i was actually older than someone to be suddenly diagnosed with ms. I did have nuerologist advise me to have the hydrocephelus treated but cant say that helped.

Along with my journey i have now been diagnosed with breast cancer and one of the meds has actually made nueropathy worse

gardengypsy

Muck~

I am seeing a neurologist. He has done the testing needed to rule out other medical conditions. He has also determined the type of neuropathy I have. Right now we are trying to figure out how much Gabapentin I should take and whether or not I should try Cymbalta, which has been shown to be successful in treating neuropathy.

I want to be sure that I am followed in this way because my oncologist focuses on cancer, not neurological disorders. Seeing a neurologist is also helpful in providing documention for my insurance company. Due to the neuropathy, I receive disability income

Blownaway

gardengypsy - I too receive ss disability due to neuropathy (and other chemo induced issues). I was on gabapentin and Cymbalta for a long time with increasing dosages but eventually weaned myself off both and also Tamoxifen. I have numbness in feet and hands and also cannot taste or smell much. I thought I was having pain due to neuropathy but most of my pain was from Tamoxifen in the form of bone pain in upper spine, down arms and legs into ankles and wrists. After about 4 months, I restarted Tamoxifen and that pain is back now. I stillget quick zinger like jolts of pain that I attribute to the neuropathy.

NotBrokenJustBent

My PCP put me on Celexa for anxiety issues but I am not tolerating it well and will need call her tomorrow for another alternative. I was just online looking at options and I see Cymbalta is an antidepressant but also prescribed for anxiety, neuropathy, and low back pain. Hmmmmm.....could it be possible to find a magic cure for all my ailments in one little pill? I am hopeful and will get my PCP's thoughts. I am hopeful.