Topic: Living with extreme neuropathy

Feb 7, 2018 04:09AM serenitywisdom wrote:

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.  

Feb 7, 2018 09:26AM NotBrokenJustBent wrote:

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.

Feb 7, 2018 09:44PM SoCalLisa wrote:

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.

Feb 23, 2018 04:02PM WarriorG wrote:

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.

Mar 1, 2018 02:48PM jipovil99 wrote:

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. 

Mar 4, 2018 11:01AM SoCalLisa wrote:

the huge difference was that I had to take so much neurontin it made me sleepy. Lyrica didn't.

Mar 4, 2018 01:11PM NotBrokenJustBent wrote:

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.

Mar 4, 2018 04:40PM NotBrokenJustBent wrote:

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.

Mar 5, 2018 08:31AM avmom wrote:

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

Mar 5, 2018 09:54PM avmom wrote:

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.

Mar 6, 2018 10:18AM NotBrokenJustBent wrote:

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.

Mar 13, 2018 02:40PM NotBrokenJustBent wrote:

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. :(

Mar 20, 2018 12:04PM - edited Mar 30, 2018 11:45PM by justamy

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!

Apr 9, 2018 11:13PM SoCalLisa wrote:

mine leveled out after a few months but switching to Lyrica really helped. One one the am another in pm.

Apr 10, 2018 08:38PM - edited Apr 10, 2018 08:43PM by gardengypsy

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!