Vent about Permanent Neuropathy

Sloan15 -- My neuropathy didn't get better until after chemo stopped, although the foot-tenderness would come and go. I never got the pins and needles, just weakness. I went to a neurologist to get my leg nerves tested, and they were affected. Thankfully things improved after chemo. Now I have to check to see if my arm nerves were affected from radiation! Again, no pins and needles, just weakness.

Kind of odd that your doc said that about regretting not having chemo if cancer returns... People can get reoccurrances even with chemo... so does that mean they might regret having chemo???

I didn't have an oncotype, but that's because I was already slated for chemo being HER2+ and grade 3.

april25 - so sorry for this extra pain you have. I see my Rad Onc next Tues and that is a topic we will be discussing. The Truncal Lymphodema I have includes range of motion limits and some numbness in the underarm area. Definitely rads, I think. More collateral damage, right? I'll let you know what he says...hoping for some peace for all, today ✌️❤️ Linda.

After reading some more posts, I forgot to say that I feel more muscle weakness with jpint pain and zingers from the pelvis down through my feet and in my wrists and forearms. My fingertips are acting like they have eczema and peeling and so are my nails. Doesn't matter what I use on them, it works for a very short time. I feel fortunate that I have no issues with numbness as of yet and I'm so sorry for everyone that does.

A lot of insight that lmy brain needs to digest over the weekend.

tazbear89, Has your MO ever shown you a graph chart called Adjuvant Online? It breaks down how much benefit you get doing chemo, doing anti-hormonals, and doing both. I have got to wonder, with such a slow growing BC as you describe, what is the benefit of giving you a full throttle chemo like AC/T. I never had to endure anything from the the taxane group, but it is so harsh and the SEs so nasty that I would want to be sure that it had a pretty good benefit to risk ratio. What I mean is, what is your absolute advantage of doing all those rounds of chemo? You know, the anti-hormonal group is generally the go-to drug therapy for slow-growing ER+/PR+ BC, right?

Well, there may be some details you left out that lend themselves more to doing 12 rounds of chemo (like, possibly your age?) But I still think if you saw the Adjuvant Online, it might help you in your decision whether to do the final two rounds or not.

Furthermore, with chemo, the biggest bang for your buck was probably in the first half of your treatment. The amount of potential cancer cells killed reduces geometrically with each round of chemo. So sayeth my MO and his minions.

Ya know, when I hear of these encounters with pig-headed docs who insist chemo doesn't cause ______ (in this case CIPN) it really kind of makes me wish they would have to undergo chemo themselves and see what kind of SEs they end up with. It's not so much that I am wishing cancer on anyone, but it seems that short of actually experiencing it themselves, they just stubbornly refuse to HEAR what we report to them. (I have the same reaction over Lymphedema denial too.)

Good Luck with the paperwork BB but, really, can't you dump that guy?

I have to support those who have said that you CAN get improvement after the 2-year point. I feel that I have. My feet are tolerating cold much better this year than last. I have had a bit more feeling come back. I can't even remember the last "percentges" I wrote down on this thread, but my left foot feels only 5-7% numb now, the right about 8-10% numb. The numbness is worst in the tips of toes, calloused areas on my toe pads, and balls of feet; but it has gotten a lot better (very slowly) over time. The big breakthrough was a few months back when I could feel water temperature with my toes again.

Everyone is not the same. I know it's called CIPN for a reason, but I am hoping that the "P" can get taken out of my equation. I'm not elderly and I have no co-morbidities that would prevent healing. That is definitely in my favor. I hope my body can bounce all the way back. I'm goin' for it!

p.s. Keep moving those feet--keep the circulation as pumped up as you can . I think that is the key.

The electric shock pains shooting in my foot are the worst SE. They front 1/3 of my foot is numb and my balance is lousy on that foot. I have to wear stable shoes or I twist my ankle and fall over to the ,left

Rmanmom, CIPN has somewhat of a pattern (like a good number of ladies on this thread report the onset within a few mos. after chemo stops) but it can also be very individual. Tho' it can vary, usually it's all CIPN and join the club of feeling disgruntled by it all. I am one of the more numb than pain ones too (and thanks for telling me that the name is Sensory Neuropathy, 'cause now I don't have to pay anyone to stick a label on mine.) I know the meds can help with the pain, but I have not heard of them helping with numbness. Everyone says B6, so that is probably the best bet. I took some but now just take it in my B-complex. Not sure if it really helped or if it is mainly time that does the healing.

The other night, for the first time, I had a shooting pain from a numb area in my foot, to my thigh, to my hip. That was the only time in three years that I ever had such a thing. It woke me up from sleep. I like to think I just made a new nerve connection.

Rmanmom - like Elimar, I have had gradual improvement from the numbness & no pain - 2+ years down the road from last chemo. Most of the feeling in my fingers has come back (hooray & can zip up my own jeans). I'm feeling some things in my feet, but most toes and the ball of my feet are still mostly numb. Today I tried to wear Sperry Docksiders with thick socks and they were uncomfortable. I had to go back to Easy Spirit Traveltimes since they have a thicker, spongier sole. So is it better to have some feeling or be totally numb? There appear to be pluses & minuses each way. Glad I have no pain but maybe feeling is over-rated. I don't take Gabapentin since I don't have pain. I do take 1000mcg of B-12 and 100mg of B-6. My neurologist said too much B-6 is worse than none.

Hello again

Reporting back on the use of the foot doctor supplied remedy that is a supplement, so not approved by FDA. I have used it since early December, now for over 1 1/2 months, only one a day as per the foot docs instruction, (the bottle says 2 per day), and I do notice more feeling in my feet, and can tell when the floor feels cold to my feet, I did at first get more pain at nite though, but found if I keep my feet outside the covers, they don't heat up and no pain all nite. I used to put on socks when going to bed, no more. I will get another bottle of the stuff and take it until I see the foot doctor in April, and will post again. Are the nerves in my feet getting back to a healthy state? Wish I knew. Will quiz the doctor a bit more next visit as to results shown by other patients, most of whom I am guessing are diabetic patients with neuropathy from that.

Best wishes to all for better days with less foot pain.

dsgirl

Absolutely! Me too!

Elimar and Denise-G, I will echo (again) what you said. I finished chemo in August of 2012 and was told not to expect much improvement after year one; someone else said two years. At the end of year 3, I noticed I had greatly improved over the previous 9 months. The only thing I did different was add B-complex spray from Garden of Life.

BosomBlues - I don't know about stress, but a couple of weeks ago I wore some new shoes, went shopping out of town and managed to create blisters on my little toes. It was so bad I had to hobble into a Wal-Mart to get some gel bandages. By the time I got home that night, and for the next few days, I swear my neuropathy was back with a vengeance! I've been on my feet for those long days of shopping on concrete before without this affect, so it might have been the stress of painful feet (unrelated to the neuropathy). Things are back to the norm now.

Hi everyone,

I haven't posted here in ages but swing by occasionally. I'm writing today to see if anyone reading this thread is in the Boston area and would be interested in joining a study at Mass General.

I've had pretty severe neuropathy--numbness only--in my feet since being treated with Taxol back in 2008. I've pursued a few avenues to improve things, mostly physical therapy. I see a physiatrist who's prescribed a number of drugs and treatments, none of which have changed things.

When I was treated last year for Hodgkins lymphoma at Dana-Farber, my oncologist told me of a study looking at the use of a sulfa drug (sulfasalazine) to treat painful neuropathy. I met with the doc and the study coordinator today. It's an eight-week trial requiring four on-site visits.

While I don't think it's likely this will help me after eight years, anything I can do that might help ANYBODY dealing with this situation feels like a good deed.

If anyone reading this is interested in learning more about the study, please PM me.

My oncologist finaly sent me to a neuroncologist who just diagnosed me with "polyneuropathy". I had complained at every appt and in between with burning feet, numb fingers, no sense of smell, short term memory problems, cognitive skills deteriorated, word recall, widespread pain..... I am at the 2 year mark and was told that after such a long time, my symptoms will not improve. Apparently, there are drugs that may have helped me if administered earlier on. I would urge anyone who suspects neuropathy to complain louder than I did and hopefully not be permanently affected. I have quit my job of 18 years (accounting) because I can no longer do the work and have filed for SSA disability. Is anyone else in my shoes?

LOL. I had one in the car when I fell. The foot felt OK when I went into the store. On the way back to the car it was numb and when I stepped down it was on the side of it. I can't balance on that foot to get dressed. The pain suddenly hits like someone stepping on my foot in cleats.

. 2 ladies helped me up and said I was lucky I didn't get run over. The cane stays with me now. I got a hiking pole for walking the dog so I don't look old around the neighborhood