Vent about Permanent Neuropathy
Comments
-
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?
0 -
Elimar and Booklady- Thank you so much for your input. It has helped and I took a half of the gaba because the nerve pain started today. I will also ask about the Adjuvant Online graph. I am actually now leaning towards not doing the last 2 treatments. I feel that my body is tired and has had enough of the drugs. I just turned 44 and if I remember right (with chemo brain) that they were trying to give me the best ratio for it not coming back. So Dec 28th with be the last chemo for me and I am not going to dose dense it like I thought I might. My body will definitely not be able to handle it and the neulasta shot too.
0 -
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.
0 -
I have neuropathy from Taxol in my right foot ball and tips of my right foot toes. I am 4 years out from treatment. It has improved during
this past year slightly!! I was not expecting that to happen! The only change in my diet/meds/supplements is I added Magnesium with my Calcium. Not sure if that can help, but it is the only thing I did differently!
0 -
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
0 -
I am relieved to find this thread. I just had a neurological workup and have been diagnosed with Sensory Neuropathy nearly 3 years PFC. Very frustrating! Fortunately I am not in pain but I have a lot of numbness; fingertips of both hands, surgery side hand/arm either cold or burning, numbness on the ball of my right foot sometimes shooting into my leg. I drop things, feel off balance and have had nausea which I assumed was the Tamoxifen but my doctor said neuropathy can affect the digestive system. I had 6 rounds of taxotere late 2012-early 2013. I did have some tingling in both hands and arms soon after chemo but it subsided after a while. I have gone from running 5Ks to having trouble folding laundry in a matter of months. So far she has perscribed 100mg of B6 plus a topical Gabapentin cream. She said me getting a flu shot may have triggered a full blown attack. Has anyone heard of this? She feels it will subside but may take some time. Fortunately I work from home. I was able to power through chemo but I feel like I cannot power through this.
0 -
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.
0 -
Thank you for responding elimar. I have read through this thread and it is amazing how varied, yet similar everyone's experience has been. I know there is nothing to combat the numbness, not sure why she gave me the Gabapentin, maybe just to give me something LOL! Hoping the B6 kicks in. The worst of it, being right handed, is the numb hand and arm. I can live with the foot with proper footwear. I am also hoping the B6 combats the fatigue, although that may just be lack of sleep (I sleep well just up early with a high schooler and don't get to bed early enough) as well as the Tamoxifen. The lack of balance is disconcerting but I am being careful when out and about.
Guess I just need to be patient.
0 -
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.
0 -
Thank you MinusTwo. My doctor said to only take the B6 for 6 months. She also wants me to have my B12 and mercury levels checked at my next bloodwork. If B12 is low she will consider shots and if mercury is high she will consider chelation. Most shoes are okay as long as they offer support. No Uggs I am finding I cannot walk in them at all. While I have no pain, I am finding the gabapentin has loosened up my tight and stiff neck. Since I seem to have suffered a full blown attack, I suspect recovery will be very slow and I am trying to be optimistic and as active as possible.
My doctor is very holistic so it will be interesting to see what she comes up with. If anything works I will be sure to post it.
0 -
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
0 -
A BC member posted a new study that finally admits we're not nuts >>>The study included 462 women who had survived cancer—including breast, lung, colon, ovarian or blood cancers. At an average of six years after cancer diagnosis, 45 percent of them still had symptoms of nerve damage, such as loss of feeling in their hands and feet...." Maybe more docs will get on board with telling us up front.
http://medicalxpress.com/news/2016-01-nerve-chemo-affect-cancer-survivors.html
0 -
Absolutely! Me too!
0 -
We need B vitamins when stressed and B is needed for nerves I wonder if stress depletes the B reserves and if we are deficient makes us more sensitive to the neuropath
0 -
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.
0 -
What is a B-complex spray from Garden of Life
I still have neuropathy in my feet and a little tingle in my hands 5 years after treatment. I am only tacking a multiviamooin Silver Something. Anithistamine. Vitamin D a big dose, Ant acid preventer, 150 Effexor. Dr took me off of Tamoxifen a few eeks ago because I got blurry vision and some vertile double vision. The effexpor is the only dialy rx now.
Any ideas?
0 -
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.
0 -
the sole on my left foot is numb 11 months PFC. It's either that or the sudden shocks pain.
Twisted my ankle and fell in a parking lot today. Cracked a rib Guess I'm going to have to start carrying a cane like an old lady. It never ends
0 -
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?
0 -
cloe, sorry for the fall, i confess to keeping a cane in the car for times when my legs are tired or if sidewalk is uneven
Feel better
0 -
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
0 -
Has anyone else permanently lost their sense of smell? I also have very little taste. Lately I think I smell burned plastic but I know its all in my head because its everywhere I go. Before the plastic "phantom" smell, it was a fruity snowcone syrup smell which wasn't so bad.
0 -
I did but that was after sinus surgery, dang apatite is still fine but I sort of forget to salt at times
0 -
I'm so sorry for all of your pain. Makes me really happy that I'm advocating for myself at my treatment centers and using ice on hands and feet. They're all like "I've never heard of anyone doing that before" and look at me like I'm crazy with my hands shoved in pea bags and peas wrapped around my feet but if it saves me permanent damage I'm gonna do it wether they like like it or not.
I hope you all find cures and or relief
0 -
I lost all of my sense of taste and smell during chemo. The only things that I could taste were pepper and horseradish. They eventually came back and my sense of smell is actually a little better than before. It was pretty damaged from sinus infections. Still waiting for some relief with my hands and feet.
0 -
love food but with not good sense of taste, i sort of forget what I had for dinner, hmmm, last night.......oh yeah salmon
0 -
I haven't posted in forever but do read this thread every once in a while. I lost smell/taste during chemo but it has definitely come back. Hands and fingers are fine again, but feet are still......NUMB. Especially left one. Right one is 80% better most of the time, and left is 50% better some of the time, but definitely aggravated by stress, and by the weather. My feet know when the weather is changing. Some days it drives me absolutely nuts. My doctors definitey downplayed this possibility....I was NEVER told that it could be permanent. They always said feeling would return six months post chemo. I am still taking a low dose of lyrica. I cut way back because it was really causing weight gain. I also take Vitamin B, but not as often as I should. What is Vitamin B Garden Spray? I will have to look for that. I have found that foot massages help the most.... usually the Chinese foot massage/reflexology. They are realively inexpensive and whenever I am having a really bad day, I get one. I think just getting the blood flowing down to the nerves (the dead nerves) helps.
I wish I could participate in a study or clinical trial..I would gladly do it. I have searched and searched for other treatments, but havent' found anything that doesn't cost a fortune and sounds really promising.
SO FRUSTRATING.
Hang in there everyone...
XO
Andrea
0 -
I can't believe I'm a year out of chemo. I used ice on hands and feet - my dear BIL gifted me the expensive mits - unfortunately, I still had neuropathy in feet, hands, and lost a couple of toenails. Maybe the ice helped lessen the fallout? Great news is my feet are better - neuropathy free! My hands, not so much. Gabapentin, Vitamin B, exercise and hand massages help. I agree that the blood flow seems to help. You all are inspiring and make me feel less lonely. ✌️❤️ Linda
0 -
I was on the good circulation bandwagon way back...and I think it the therapies have any effect at all, it is probably due to just getting the blood flowing to encourage any healing that is able to take place.
BookLady1, that is great about your feet. I am the opposite. My hands were only very temporarily affected and are nueropathy free, but the feet have lingered on for 2 1/2 years now. I think I will be stuck with permanent dead zones in my feet. They do have good days/bad days, and the good always does coincide with doing something active to get the blood circulating.
0 -
I didn't take the gabapentin this time because I read that it can cause mental slowness and I already had enough of that. Now I wish I had because this neuropathy in my feet along with electrocution zings is wearing on me. I have now had 7 major falls since 2010 and most of them are neuropathy,balance, related.
Ginger
0
