Living with extreme neuropathy
Comments
-
I mentioned on another thread that I started chemo (my third time through chemo over the past 20 years for 4 different cancer diagnosis). I took carboplatin and taxotere and herceptin. Over the course of my year of treatments, I have lost a bit over 100 pounds. I do not think the doctors adjusted my infusions with the weight loss and I had a taxotere reaction call hand and foot syndrome. that the Nurse Practitioner called a "taxotere overdose". I experienced peeling and redness in my hands - over the past 6 months or so, my nails have all broken off below the quick - ouch! I also have a big ridge in my nails that is very slowly growing out.
I also had foot reaction with redness and pain over the entire sole of my feet. As a 30+ year diabetic, I started chemo with diabetic neuropathy but it was not painful - just a noticeable feeling of walking on "plastic bags" on both feet. After the hand/foot syndrome, My feet became very sore on the soles - mostly on the balls of my feet. It was like walking on razor blades... very painful. My podiatrist gave me samples of Metanx which works miracles. I am back to the "plastic bag" feeling with little pain. If I skip a dose, however, it starts hurting. Metanx is considered a medicinal food and is not covered by my insurance so we pay the $175.00 every three months and it is worth every penny.
I also have constant tinnitus and hearing loss (because of the carboplatin as I have read online). My tinnitus and reduced hearing will be something I love with from now on apparently. I have a hard time when we go to dinner with friends. If the restaurant has more than a couple of people, I can not differentiate between what my friends are saying and what I am hearing from two or three tables away. The literature says that as many as 20% of chemo patients can have hearing loss - permanently... I only did 5 of 6 treatments with the taxotere left out of the last infusion because of the hand/foot syndrome.
0 -
Hi everyone,
I had TCH back in 2011 and 2012. I developed neuropathy on the bottom of my feet after chemo and it still has not gone away although my oncologist told me it probably would;, still is like walking on blocks of wood. I hold on to hand rails when I walk up or down steps to not lose balance. I worry about falling. Now I am getting tingling in my fingers in the past few months. What is Lyrica and how much do you recommend taking? What other supplements do people recommend taking to help with neuropathy.
I also used the penguin cold caps to not lose my hair and I am happy to report after 6 years, I kept my hair and it still looks good The nurses and doctors all told me it would not work but after heavy advocating to do it, they allowed my friends to help me put on the caps during the infusions, Hair loss occurred on all other parts of my body and for the most part, did not grow back. I wish I could have used something on my eyebrows. I used to have rather bushy eyebrows that needed plucking all the time. Now I have patchy thin eyebrows with holes that need filling in . Any suggestions on how to correct patchy eyebrows. It takes me a long time to fill them in. Oh well, all of this is better than having a cancer reoccurance.
0 -
I started with Lyrica after amytriptlin, and neurontin didn't work. I started many years ago when it was first approved. I began by taking one 150mg at bedtime and worked up to one in the morning and one at night. It was designed for nerve pain. After I also had shingles, it was bumped up to 200mg. But I took the 150 mg twice a day for years and it really worked for me. At first I was a little tired. But that didn't last long. If I forget to take a pill, I know it!
I also had to work on my balance. I had vestibular therapy where you retrain the inner ear for balance. Not many PT actually offer it as it is very specialized.
Good luck. And hugs from Southern California. 💕
0 -
SoCalLisa, I tried amytriptlin and Gab but it did not help so that is encouraging that Lyrical worked for you. That was 4 years ago and when I was prescribed Lyrica, insurance would not cover it, I think because it was only approved for diabetic neuropathy, but maybe they will now. I am hesitant to do drug therapy because thanks to Femara I am now on a total of three drugs. I sure hate to add another but maybe it is time. The burning gets quite intense come evening.
Serenity, good for you doing the cold caps. My doctors mocked me and so I ended up not doing it but my hair never grew back to what it was before which makes me very sad and I too have very little body hair. As to my eyebrows, they grew back quite bushy and wirey with grey and yet I don't have any grey on my scalp! Does anyone come out of chemo unscathed? As to your feet my best advice is to get a good walking shoe. Whenever I wear shoes with a hard sole I get that walking on pebbles sensation.
0 -
Lisa,
I have considered bumping up my Gabapentin dosage (I am at 2100g now) but your post has made me reconsider Lyrica.
How is your sleep? Hot flashes? The reason I haven't tried anything else is because Gabapentin helps me with both.
I would love to hear back from you on this and would also like to know if you've had any side effects.
-gardengypsy
0 -
gypsy. I had the hot flashes helped by the neurontin but Lyrica did too. I can't remember what dosage I was taking before I changed. Huge difference.
0 -
My PCP called and will not renew my script for statins unless I make an appointment so guess I will need go in. My cholesterol went thru the roof when I started the blockers. I tried so hard to control it without drug intervention but despite my best efforts it just kept rising, in fact my PCP said she had never seen levels so high. I have read online that statins can cause neuropathy. My PCP continually tells me that is completely false yet there is much on the net and hence why I was so hesitant to be on them. I will say that I feel like my neuropathy is progressing. Anyone have thoughts on the safety of these statin drugs?
0 -
I just stopped my monthly Zometa. I'm 75 years old...And pretty sure the Zometa was contributing to my neuropathy in my feet. So worried about a fall...And my Oncologist was okay with me stopping it. I still have the neuropathy and probably always will...But at least the Zomets can no longer contribute to it.
0 -
Your not gives me something to hope for -- that post-chemo neuropathy can go away with time. My onc said it might go away, but I did not believe him. But hearing from actual patients means a lot.
0 -
My experience is much like yours except that I have not yet taken gabapentin. I'm getting radiation and have started tamoxifen. I can't say yet if my hot flashes are worse after five days of tamoxifen (my hot flashes were frequent even before tamoxifen), but any increase and I will lose my mind. I will avoid being with friends because I don't want to always be seen in a sweat!
I did not know neuropathy becomes worse, good to know, but it increases my discouragement.
0 -
Lisa,
Are you saying that the Lyrica helped with the hot flashes?
What was the “huge difference"?
Thanks!
0 -
the huge difference was that I had to take so much neurontin it made me sleepy. Lyrica didn't.
0 -
Serenity - I just checked in with my neurologist again - 4 years after active treatment. She had told me my neuropathy probably/maybe would get "better". Better meaning "some improvement" but not back to where I started. My feet are still blocks of ice - mostly with no feeling but occasionally pebbles in my shoes. She reiterated that yes, there are medications to alleviate pain (gab, lyrica), but there is nothing that can help just the lack of feeling. I do still take B-12 & B-6 at the recommendation of the MO and the neurologist, but after my June check in, I'm going to stop all vitamins and monitor the differences.
I agree that the softer walking shoes are much more comfortable, but my big toe nails detached w/chemo treatment. The nails never came off but I'm still fighting a fungus so they had to be severely cut back so the nail bed could be treated and might re-attach & grow again. Her recommendation is very hard shoes that won't twist or bend. Otherwise the nail bed that is attempting to re-attach will continually be aggravated by movement. And of course hard shoes are sooooo much worse for my balance as I'm trying not to trip over them.
Lisa - I like the thought of vestibular therapy. Never heard it mentioned. Did you go to a special PT or to an ENT?
0 -
Hi Minus. Ugh, the shoe thing puts you in a tough spot. I still wear hard sole shoes for fashion when I don't have to stand or walk much but my balance is compromised and they give me that sensation of walking on stones. Soft soled walking sneakers work best for me but I really should invest in some soft soled leathers with arch and ankle support. That is good news that you may still get some improvement in your neuropathy over time. That is my hope but here I am over 4 years later and if anything I am getting worse. I didn't start out with the burning and now on the bad days I have that up to the thighs. It is very debilitating at times and the ups and downs play crazy head games.
0 -
I went to a PT who specialized in vestibular therapy .
0 -
SoCalLisa, vestibular therapy? Ugh.... life use to be so simple until BC. The only place I feel mostly normal is in water. It is there that I don't feel the terrible weakness and all the other weird sensations. I guess it is the buoyancy, resistance and support it offers. Wish I could become a mermaid.
0 -
I think I was a mermaid in my previous life. I love being in the water. I can fall asleep floating, if the water is warm enough.
0 -
Good morning, all.
I'm nearly three years out from chemo, and posted somewhere lease (maybe the venting thread?) earlier this year, but will have to find that post.
At the end of my chemotherapy (dose dense AC-T) my neuropathy was pretty severe, in both hands and lower legs. I could not hold a pen, because my fine motor skills in my hands were affected, and I could only hold objects as long as I could see them. I dropped many things. My legs were numb and frozen from the knees down, and were very uncomfortable. I was prescribed morphine for a time, but could only stand to take it when my legs became unbearable. I was totally cane dependent for over a year, and had several falls. Nowadays, my cane stays in my car, and I use it when I have to walk on surfaces that are slippery, uneven or unfamiliar. Very gradually, my hands have improved, and now my thumbs and index fingers are a bit numb, but not painful.
My feet have not fared as well. I, too, have the “blocks of ice" sensation in my feet. Over the past year or so, things have change a bit. Initially, things seemed to be worse. I had very unpleasant sensations in my toes, like someone was driving nails into the tips of my toes, and I have occasional stabbing hot pains in the sides of my feet. I chose to interpret this optimistically as a sign that there was new nerve activity,
I have also had regular cramping in my feet - my toes will just splay out rigidly, and the cramp often extends into my instep and occasionally all the way to my calf muscle.
I did try amytriptalin, without any effect. My MO offered Lyrica, but that seemed like a lot of side effects so I took a pass.
Last fall, I did a dozen ultrasound treatments on the soles of my feet. I didn't think much was happening with that, but at the very last treatment, I did perceive that the gel was cool, just on the outside of my left foot. Before that, I just assumed that my therapist was warming the gel, so that was a bit hopeful.
I just finished an acupuncture trial, with 12 acupuncture sessions, which was coordinated through my local cancer centre. I don't know that my discomfort level is down, really (fwiw, I guess that I start each day at a discomfort level of about 4/10, and usually it becomes worse as the day goes on), BUT I do seem to have a bit more of a sense of “where my feet are" and I have quite a bit less trouble on stairs. I don't need to get both feet on each step as much, but can move more fluidly up a set of stairs, with one foot on each step rather than “right foot up on next step, then bring left foot onto that step before scaling the next one. I think my feet are a bit less crampy, but time will tell if that is just optimism or actual improvement. I was talking with the researcher at my last session, and she said that the data so far has shown some people, maybe 15%, reported significant improvement, another 20% of so like me didn't have significant improvement, but had some improvement in QOL, like better mobility, and about half didn't notice much change.
Part of my rehab has included balance exercises from day one, so maybe some of this is just practice. I am a bit better at standing on one foot, and can sometimes get a sock on without leaning on something. I still find that I have a limited number of steps in my feet each day, say 2,000 or so, before they are just DONE, and only a hot bath and elevating my feet bring any relief. The sensation is hard to describe, but quite unbearable.
One of the hardest transitions out of this whole experience has been going from a “basically healthy" person to being a chronic pain patient. I take a hot bath every day, and find that this is where I am most comfortable. I do find that if I concentrate very intensely, I can kind of ignore my feet for a time, but that takes a lot of energy, and I am completely spent at the end of the day. At this point, I'm considering whether medical MJ might provide some relief. Has anyone out there tried it?
Warm thoughts to everyone
0 -
Avmom, thank you for sharing all that. Yes, I completely understand what you are going through, especially when you say you went from healthy to a chronic pain patient. The only improvement I have seen was in my balance issues. Yoga brought me far and thereafter aquatic pool therapy was also helpful in that regard but like anything else, if I don't keep up with it I revert and lately my balance has become a real issue again. My neuropathy pain is also progressive throughout the day unless it is just easier to ignore when more occupied but the terrible weakness is always worse in the morning and I fear when I have to get up in the middle of the night that I will fall. Oh and yes, hot baths are very helpful but the relief is very short lived and actually just helpful while I am soaking. I wish I had some advice or something that has helped me. Sounds like you are pretty much exactly where I am but is it helps at all I completely understand.
0 -
Hi NotBroken,
Thanks for your post. This forum is the one place where I find others who are experiencing this long term side effect. I don't know anyone IRL whose experience is like mine, and though not any relief in terms of symptoms, it is nice not to feel that I'm just going crazy on my own. I agree that being in the tub is a relief only while soaking, and while I haven't done much yoga, I think I will give it a try.
I have really cultivated the ability to ignore my feet. I don't know what activities you enjoy, but I have always found that if I am reading very intensely, my concentration is so total that I kind of go “deaf" - I lose the ability to attend to the sounds around me. If I can concentrate that much, I don't notice my feet much. I practice concentrating that hard during the day, and as a result there are some times that I am similarly “deaf" to the unpleasant sensations in my feet. It works, after a fashion, but is very draining.
I read as much as I can about neuropathy and it's treatment, and so far, the consensus in the literature I have read is to avoid getting it, because there aren't any treatments Proven to be much more effective than a placebo.
I was moved to put my experience out there, so that anyone having similar issues can know that others understand. Thanks for listening.
0 -
Hi NotBroken,
Thanks for your post. This forum is the one place where I find others who are experiencing this long term side effect. I don’t know anyone IRL whose experience is like mine, and though not any relief in terms of symptoms, it is nice not to feel that I’m just going crazy on my own. I agree that being in the tub is a relief only while soaking, and while I haven’t done much yoga, I think I will give it a try.
I have really cultivated the ability to ignore my feet. I don’t know what activities you enjoy, but I have always found that if I am reading very intensely, my concentration is so total that I kind of go “deaf” - I lose the ability to attend to the sounds around me. If I can concentrate that much, I don’t notice my feet much. I practice concentrating that hard during the day, and as a result there are some times that I am similarly “deaf” to the unpleasant sensations in my feet. It works, after a fashion, but is very draining.
I read as much as I can about neuropathy and it’s treatment, and so far, the consensus in the literature I have read is to avoid getting it, because there aren’t any treatments Proven to be much more effective than a placebo.
I was moved to put my experience out there, so that anyone having similar issues can know that others understand. Thanks for listening.0 -
Everything I read is discouraging also especially after two or three years out. The best chance for nerve regeneration is in the earlier months but some report slight improvement over years time.
Perhaps your pain is worse than mine or maybe I have a higher tolerance but I do manage to get my mind off it quite a bit, but evenings are tough. These days I have to fall asleep with the TV on or else I just lie there focusing on the pain/discomfort and then the fear and anxiety starts.
It makes sense that exercise is critical to get the blood and oxygen circulating but with all the limitations it is hard to motivate or find a safe way to be more active. I too have a cane and use it when I walk more than a couple blocks or at least bring it with me just in case. It makes me sad to think that just 5 years ago I was dancing in high heel shoes.
0 -
Hi, I have stage 4 br ca, and I too have peripheral neuropathy. It is a daily struggle. I take gabapentin every 8 hours. At 6 hours my fingers and toes start to burn again. I would not want to live without the medication. I gave up work and went on disability because I cannot remember anything. I have terrible sleep. I have worked hard to find new ways to make my life interesting again. Volunteering has helped a lot. This site means so much to me. Other people don’t understand how this type of pain wears you out. I’m glad I’m alive, 5 years in remission, it spread to my brain and lungs. Round the clock medication, however, is my new reality
0 -
Avoidheaven, I am not stage 4 and for that I am grateful but I certainly can relate to the chronic pain of PN. Yes, it does mess with one's head. I have back and neck issues but at least I can get completely pain free when off by feet and in an inclined position, but there is no relief from the PN. It is constant and while there are some fluctuations day to day, it is always there, chronic and debilitating. I am sorry you find yourself here when you should be saving your energy for fighting this damn BC. To date what works for me also is distraction because PN is able to rob me of my joy and even the happiest of times if I let my mind go there. Lately I am trying to push away and past the pain but usually easier said than done. Keeping busy and doing your volunteer work is a wonderful thing. Unfortunately because of the weakness in my legs I am pretty much limited in my activities but am finding different ways to occupy my crazy head thru time. Having a place to share is very helpful to me. There are suggestions here but clearly no cure, but understanding, and mutual empathy goes far.
As you can tell I am having a very PN day. Mind over matter is not working.
0 -
avoid
Lyrica works so much more than neurontin for me.. And I only have to take morning and night
0 -
Im going to see my regular doctor to see if I can see a neurologist. I've read many stories about people that got tendonitis after chemo (taxotere and AC) and since my pain is in my hands I think it's worth a shot. I also have tenitus after chemo and my hair is very thin. My MO stinks and didn't tell me any of this was possible. Now my implants are killing me so I have to go see what that's about and she is going to put larger ones in. Ugh. Cancer really sucks!
0 -
Newbie on this board, and new to the wild and woolly world of post-chemo living. Just starting this part of the journey, at 6 months PFC. (I can hear the clucking --- poor dear, she doesn't know what she is in for...) I have to say that I do NOT have extreme PN, for which I am most grateful. I am in awe of you gals who live each day with it. My question is -- for how long did your symptoms develop and intensify before they leveled off? Or did they level off? I still feel as if my symptoms are getting gradually more noticeable, even at 6mo, and I am wondering how much longer they will bloom like this.
At the moment, I can live with it. It is noticeable but not debilitating. Gabs seems to provide some temporary relief. I'm on 900mg (300 x 3/day) and it doesn't quite cover the 8 hours between doses. (I am also trying to regulate some wicked hot-flash/cold-flash action because of Tamoxifen.)
Just wondering how low things will go......
Blessings to all ya'll.
0 -
mine leveled out after a few months but switching to Lyrica really helped. One one the am another in pm.
0 -
My neurologist told me it could get better gradually over 2 years. Mind you, she emphasized better than what it currently was PFC and not back to where I was before chemo. After four years, I just saw her again & don't expect more improvement. I'm fortunate that I don't have a lot of pain. Mostly just big, numb, pieces of ice for feet so I have no balance, and sporadic problems with my finger tips. Hope yours improves.
0 -
Checking in... I am just about two years post-Taxotere, and my neuropathy is just as bad as ever. Still on 2100 mg/day Gabapentin.
Lisa- I have seen you post about the Lyrica. I have been ambivalent about trying it for two reasons: 1) Gabapentin is super effective for hot flashes and 2) I just don’t have it in me to try another medicine and experience itsown side effects.
I am happy that it worked for you!
0
